Section 1 End-of-Life Issues

#### **Chapter 1**

## An Examination of Safe Injection Sites and Ethical Issues in Philadelphia, United States

*Peter A. Clark and David Grana*

#### **Abstract**

The opioid epidemic in the United States has been an ever-increasing public health crisis. Despite being a major issue in the United States for decades, relatively little action has been taken to address the opioid crisis. To mitigate the harm the opioid epidemic has caused in the United States, safe injection sites have emerged as a promising solution. Despite the exhaustive benefits of safe injection sites, including the reduction in the number of opioid overdose deaths, safe injection sites have faced opposition in the United States. Most of these concerns in the United States question the legality of safe injection sites, along with potential community implications. Through examining the ethics of safe injection sites from a Catholic social teaching perspective and performing an integrative literature review, safe injection sites are clearly ethical and would aid in respecting the dignity and life of people who inject drugs (PWID). With safe injection sites being ethical and recommendations in this paper to overcome concerns about safe injection sites, safe injection sites are a viable option to combat the opioid crisis in the United States.

**Keywords:** safe injection sites, opioid epidemic, opioids, opioid-related disorders, harm reduction

#### **1. Introduction**

#### **1.1 Ethical principles from a catholic social teaching perspective**

While public health crises, such as the COVID-19 pandemic, have received tremendous attention and resources, one public health crisis has seemingly been forgotten for decades: The opioid epidemic. With nearly half a million Americans dead from opioid use in the past few decades and no foreseeable stop to the increasing number of opioid overdose deaths, the United States is in need of immediate solutions to the opioid crisis. One emerging solution to combat the opioid crisis is facilities known as safe injection sites. Safe injection sites allow people who inject drugs (PWID) to safely inject addictive substances in the presence of healthcare professionals. While safe injection sites have been successful in countries across the world for decades as a solution to the opioid crisis, they have recently been a topic of debate in the United States. Especially in cities, such as Philadelphia, where the opioid crisis is one of the worst in the nation, safe injection sites are an extremely promising solution.

Before safe injection sites are able to be discussed in detail, this paper will first provide a background to the opioid epidemic, highlighting the role of

pharmaceutical companies, physicians, the Drug Enforcement Agency (DEA), and the Food and Drug Administration (FDA) in exacerbating the opioid crisis in the United States. The three stages of the rise in opioid deaths will also be discussed in this section, showing the transition from predominately prescription opioid overdose deaths to heroin overdose deaths, and then the more recent transition to synthetic opioid overdose deaths. In addition, the impact of the COVID-19 pandemic on the opioid epidemic will be described, especially its role in exacerbating the opioid crisis in the United States.

With an understanding of the background of the opioid epidemic, this paper will then provide an analysis of a case study regarding the opioid crisis in the Kensington region of Philadelphia, which is one of the most impacted areas by the opioid epidemic in the country. Furthermore, this paper will then provide a detailed breakdown of the history of safe injection sites, along with their respective risks and benefits. The implications of safe injection sites for the United States will especially be emphasized in this section, along with the recent legal battle to bring safe injection sites to Philadelphia and other areas of the country. An ethical analysis of safe injection sites will then be provided from a Catholic social teaching perspective using the principles of the respect for human dignity, solidarity, the common good, and the stewardship of resources, and the relationship of safe injection sites to the harm reduction theory will also be discussed. The ethical analysis will provide an argument as to why safe injection sites should be implemented in the United States. Lastly, we will make seven recommendations for the successful and effective implementation of safe injection sites in the United States, highlighting legal, medical, educational, social, and financial aspects.

#### **2. Opioid epidemic background**

Since the 1990s, the opioid epidemic has been a devastating problem in the United States. According to the Centers for Disease Control and Prevention (CDC), between 1999 and 2019, nearly 500,000 people in the United States died from a drug overdose involving opioids, which accounts for nearly two-thirds of the total drug overdose deaths [1]. In 2019 alone, nearly 70% of the 70,630 drug overdose deaths involved opioids, and the total number of deaths from drug overdoses was four times higher in 2019 as compared to 1999 [1]. While the opioid epidemic has ravaged the United States for decades, it has not always been at the forefront of public health concerns. In 2015, Anne Case and Angus Deaton, two extremely well-known economists with the latter being a Nobel Prize winner, brought the opioid epidemic to the spotlight. While investigating morbidity and mortality rates for men and women from the CDC, Case and Deaton discovered a puzzling trend: There was a striking increase in the morbidity and mortality of middle-aged white non-Hispanic individuals between 1999 and 2013 [2]. According to Case and Deaton, between 1978 and 1998, the mortality rate for middle-aged (45–54 years old) white non-Hispanics in the United States fell by 2% per year on average [2]. However, beginning in 1999, the mortality rate for middle-aged white non-Hispanics in the United States rose by an average of half a percent a year until 2013 [2]. At the same time mortality rates were increasing for non-Hispanic whites, morbidity rates experienced a direct increase as well. In a self-reported assessment of health status from 1997 to 1999, there was a 6.7% decrease in middle-aged non-Hispanic whites from the United States reporting excellent or very good health and a related 4.3% increase in middle-aged US non-Hispanic whites reporting an increase in fair or poor health. At the same time, mortality and morbidity were increasing in the United States between 1999 and 2013 for middle-aged US non-Hispanic Whites,

#### *An Examination of Safe Injection Sites and Ethical Issues in Philadelphia, United States DOI: http://dx.doi.org/10.5772/intechopen.104565*

self-reported declines in health, mental health, increases in chronic pain and inability to work, ability to conduct daily activities of living, and clinically measured deteriorations in liver function [2]. All of these factors interestingly coincide with the increased availability of prescription opioids for pain during the 1990s [2].

The prevalence of different types of opioids has fluctuated throughout the epidemic in three distinct waves, with the first wave of the opioid epidemic involving the increased prescription of opioids. Prescription opioids, such as OxyContin and Vicodin, are frequently used to treat moderate-to-severe pain after surgery and chronic pain [3]. While the use of prescription opioids was originally intended for chronic pain from diseases, such as cancer, or for short-term use for recovering after surgery, in the 1990s medical professionals began expanding the use of opioids [4]. Physicians began to increase the long-term use of opioids in treating chronic nonmalignant medical conditions, which include conditions, such as sciatica and low-back pain [4]. Physicians were especially influenced and encouraged to increase the usage of prescription opioids, such as OxyContin, through aggressive marketing tactics from drug companies [4]. For the physicians, the message to "be proactive with pain and treat it aggressively," seemed to make perfect sense, and promoted the use of prescription opioids, such as OxyContin [4]. In 1995, OxyContin, a prescription opioid-containing the highly addictive compound oxycodone produced by Purdue Pharmaceutical, was approved by the United States Government. OxyContin was initially approved as an extended-release reformulation of oxycodone that was intended to reduce abuse and addiction [5]. Since opiates at the time were being used recreationally and it was widely believed that individuals with chronic pain needed more help, OxyContin was readily approved [6]. However, Purdue Pharmaceutical clearly lied and deceived the public by claiming that OxyContin's delayed absorption ability reduced the "abuse liability of the drug" [7].

Even though OxyContin was advertised to be less abusive than other opioids, Purdue Pharmaceutical had actually conducted a study in 1995 showing that 68% of oxycodone could be extracted from an OxyContin tablet when crushed [6]. Evidently, Purdue Pharmaceutical knew how highly addictive OxyContin was, but continued to lie about their product to increase sales. With this completely false claim of reducing potential abuse of OxyContin and the unwavering message to alleviate pain whenever possible, Purdue Pharmaceutical was able to successfully market their drug to physicians, which resulted in sales increasing from \$48 million in 1996 to approximately \$1.1 billion in 2000 [8]. For the next 20 years after 1995, prescription opioids, such as OxyContin, experienced a 10-fold increase in medical use. Interestingly, family medicine physicians with no expertise in pain management prescribed more opioids than any other type of physician, even pain specialists. In 2012, 18% of all opioid prescriptions were written by family medicine physicians, 15% were written by internists, and only a mere 5% were written by pain specialists [4].

Despite the rapid increase in the use of prescription opioids, such as OxyContin, in the United States beginning in the late 1990s, OxyContin was not even more effective than alternative drugs. For example, a randomized double-blind study showed that giving OxyContin every 12 hours produced comparable efficacy and safety results when treating chronic back pain as giving immediate-release oxycodone four times daily [9]. In addition, when treating patients with moderate to severe cancer-related pain, a randomized double-blind study showed that OxyContin given every 12 hours was as effective as immediate-release oxycodone given four times daily [10]. Even during the FDA's review of OxyContin in 1995, the FDA's medical review officer concluded that OxyContin had no significant advantages over immediate-release oxycodone [6]. Along with not producing a significant advantage over other alternatives, there have been no studies affirming the

long-term effectiveness of OxyContin [3]. Moreover, in 2006, a Danish study with a national random sample of over 10,066 individuals that compared opioid users to non-opioid users revealed that opioid usage was significantly associated with reports of moderate/severe or very severe pain, poor self-rated health, unemployment, increased use of the health care system, and a lower quality of life [11]. With OxyContin seeming to have more negative effects on patients than positives, it is evident that its producer, Purdue Pharmaceutical, is at fault. As Oxycontin became one of the most prescribed opioids in America, it had also become one of the most abused drugs in America by 2004, resulting in an increasing number of opioid overdose deaths [12]. From 1999 to 2017, the number of opioid overdose deaths involving prescription opioids increased from 3,442 to 17,029 deaths [13].

While Purdue Pharmaceutical did nothing to inform the public about these harms, physicians are not infallible for their propagation of the opioid epidemic. Even after the addictive nature of opioids has become apparent in the past two decades, prescription opioids are still heavily utilized. In 2017 alone, over 191 million opioid prescriptions were dispensed to American patients [3]. In addition, the long-term use of prescription opioids by an individual is connected to the prescribing patterns of the original physician they encountered [14]. For example, researchers discovered that doctors they marked as "high-intensity" prescribers sent one out of four patients home with opioids, while "low-intensity" prescribers gave opioids to one out of 14 patients, and patients that saw a "high-intensity" prescriber were over 30% more likely to become long-term users of prescription opioids [14]. While physicians played a role in starting the opioid epidemic, they can continue to exacerbate it if prescription opioids continue to be prescribed at high frequencies.

Along with physicians and large pharmaceutical companies, such as Purdue Pharmaceutical, the Drug Enforcement Administration (DEA), further worsened the opioid epidemic. For example, in 2019, the Justice Department's inspector general criticized the DEA's decision to authorize manufacturers to tremendously increase the production of prescription opioid painkillers between 2003 and 2013 while opioidrelated deaths in the United States surged [15]. The DEA directly oversees access to opioids, regulates opioid production quotas, and investigates illegal diversions of opioids [15]. However, the DEA failed to adequately respond to the opioid crisis as it increased the production quotas for oxycodone production by nearly 400% between 2002 and 2013, even though there was significant evidence that opioids were being abused and overprescribed [15]. The DEA also further did not capture proper data on opioid abuse and other drug trends between 2002 and 2013, thereby further handicapping their ability to properly mitigate the opioid crisis [15].

Along with the DEA, the Food and Drug Administration (FDA) further failed to deal with the opioid epidemic properly. For example, the FDA failed to use its policing powers by providing no oversight or measure of effectiveness for a safety training program that aimed to reduce the improper prescription of opioids [16]. In 2007, Congress explicitly gave the FDA the power to require the manufacturers of opioids to give training to physicians so that they could properly prescribe opioids, and the FDA was allowed to monitor the performance of these drug companies [16]. With this power, in 2011, the FDA asked producers of OxyContin and other addictive long-term opioids to pay for safety training for nearly 320,000 physicians prescribing their drugs, and also asked these entities to track the effectiveness of this training and measure other factors, such as reducing addiction, overdoses, and deaths [16].

Even though the safety program sounded good in theory, in practice it was doomed from the beginning. For example, the FDA never determined if the program worked as the opioid manufacturers were not properly collecting the right type of data, and the FDA made the critical mistake of leaving the monitoring of

#### *An Examination of Safe Injection Sites and Ethical Issues in Philadelphia, United States DOI: http://dx.doi.org/10.5772/intechopen.104565*

these safety programs in the hands of the drug manufacturers. In 2010, the FDA advisory committee of experts was aware of these potential flaws in the program's design and voted 25–10 against its implementation; however, the FDA still implemented the flawed program [16]. In addition, in 2013, a report by the inspector general of the Department of Health and Human Services showed that only 14% of the safety programs that the FDA reviewed actually met their goals, and that the FDA had no enforcement actions against companies that did not provide enough information about their safety program for it to be reviewed [16]. Hopkins researchers discovered that even though the FDA was aware of these problems after performing their own review process, they still did nothing to change it, and ultimately failed to regulate the opioid manufacturers [16]. This improper decision-making seemed to be driven by a conflict of interest between opioid manufacturers and the FDA staff responsible for opioid oversight [17]. Shockingly, the two FDA reviewers that originally approved Purdue Pharmaceutical's oxycodone application joined Purdue after leaving the FDA [17]. With a conflict of interest and the lack of action, the FDA made no progress in limiting the devasting impacts opioids were having in the United States, and ultimately played a critical role in exacerbating the opioid crisis.

While prescription opioids started the opioid epidemic in the United States, the second wave of the opioid crisis, starting in 2010, saw a rapid increase in the number of opioid overdose deaths using heroin. According to the CDC, between 2010 and 2018, opioid overdose deaths involving heroin increased by a factor of 5 from 3,036 deaths in 2010 to 14,996 deaths in 2018 [18]. In 2018, it was estimated that over 808,000 individuals had used heroin in the United States [19]. While heroin use only started to spike around 2010, it has accounted for nearly a third of all opioid overdose deaths contributing to the death of over 115,000 Americans between 1999 and 2018 [18]. Furthermore, heroin is often combined with other drugs and alcohol, leading to a greater chance of overdose. In 2013, it was reported that over 96% of heroin users use another drug, while 61% report using at least three different drugs [20]. Since heroin is typically injected using needles, heroin users are also at risk of contracting HIV, Hepatitis B, and Hepatitis C. In 2017, the CDC reported that almost 9% of the 38,738 diagnoses of HIV in the United States resulted from the injection of drugs, such as heroin [21].

Despite the devastating impact that heroin and prescription opioids have had on the United States during the opioid epidemic, the third wave of the opioid epidemic, starting in 2013, has been characterized by the development of deadly synthetic opioids. The use of synthetic opioids, such as fentanyl and Tramadol, is currently the leading cause of opioid deaths. For example, in 2018, over 31,000 people died from overdoses involving synthetic opioids excluding methadone, which was a 10% increase from 2017 [22]. From 2010 to 2013, the national rate of synthetic opioid overdose deaths was approximately 1 per 100,000 individuals, while this rate tripled from 2013 to 2015 to nearly 3.1 synthetic opioid overdose deaths per 100,000 individuals [23]. Fentanyl is particularly problematic as it is 50–100 times more potent than morphine, and is often mixed with heroin and cocaine without the knowledge of the user, as it can increase the euphoric effects [22].

With the increased usage of synthetic opioids in recent years, the opioid epidemic began to emerge as a public health crisis. On October 26, 2017, President Trump officially declared the opioid epidemic a "public health emergency" [24]. With this declaration, President Trump instructed the Health and Human Services (HHS) secretary, Eric D. Hargan to declare the opioid epidemic a public health emergency [24]. With Hargan's declaration, HHS was allowed to allocate resources and personnel to face the opioid epidemic [25]. In particular, on March 20, 2018, a National Health Emergency Dislocated Worker Demonstration Grant became available to individuals who experienced economic and workforce-related impacts

caused by the opioid crisis [26]. Through providing this grant, training opportunities for skilled professions were encouraged to help those struggling with addiction to have a path back to the workforce.

While progress in mitigating the opioid epidemic has occurred in recent years, the development of COVID-19 has exacerbated the crisis. Before COVID-19, between 2017 and 2018, opioid-involved deaths decreased by 2%, prescription-opioid involved death rates decreased by 13.5%, and heroin involved deaths decreased by 4% [3]. With drug overdose mortality declining for the first time in over two decades, there was room for optimism in 2018 that the opioid epidemic was finally starting to become under control [27]. However, between 2018 and 2019, drug overdose deaths climbed once again up to 70,000 deaths [27]. This increasing trend in drug overdose deaths starting before the COVID-19 pandemic, has only continued to increase as a result of the pandemic. For example, provisional drug overdose deaths experienced an increase of 2,146 deaths from 75,696 deaths in the 12-months ending in March 2020 to 77,842 deaths in the 12-months ending in April 2020, and drug overdose deaths experienced a 3,388 death increase from the 12-months ending in April 2020 to 81,230 deaths in the 12-months ending in May 2020 [28]. What makes these numbers so alarming is that the increase of 2,146 provisional drug overdose deaths and 3,388 provisional drug overdose deaths mark the largest monthly increases since provisional 12-month estimates began to be calculated in January 2015 [28]. Even more alarming is the fact that in a 12-month period ending in September 2020, more than 87,000 Americans died from drug overdoses, which was the highest number ever recorded since the start of the opioid epidemic in the 1990s [29]. Moreover, the opioid crisis has even caused more devastation than COVID-19 in cities, such as San Francisco, where in 2020, the number of drug overdose deaths skyrocketed to 713 deaths as compared to the 257 individuals who died of COVID-19 that year [30].

With record-breaking monthly and annual surges in drug overdose deaths recorded at the start of COVID-19's declaration as a national emergency, it is clear that the pandemic has been responsible for increasing the number of drug overdose deaths. While we know this is happening, why is the pandemic increasing drug overdose deaths? First of all, while social distancing has been critical in mitigating the COVID-19 pandemic, it has also unfortunately been extremely problematic for those recovering from drugs or for individuals that use drugs. For example, access to essential treatments and community groups has been disrupted, as individuals have been instructed to stay away from others during the pandemic [27]. While recommendations to avoid individuals have been generally seen as positive, an unintended consequence of these recommendations is that they conflict with the harm reduction theory's principle of never using alone [27]. Furthermore, the pandemic is tremendously increasing the reasons people have to use drugs, such as opioids, as it has increased unemployment, feelings of loneliness and hopelessness, poverty, and a general desire to escape [27]. As people lose their jobs and experience economic and social turmoil, drugs like opioids are readily being seen as a remedy for these troublesome issues.

With the devastation that the pandemic has caused to the lives of so many individuals, it is not a surprise that heroin and synthetic opioids usage and deaths have seen tremendous rises. In a study of over 150,000 urine samples ordered by health professionals 4 months before the national emergency declaration (November 14, 2019, to March 12, 2020) and after (March 13, 2020, to July 10, 2020), fentanyl prevalence increased from 3.80% to 7.32% and heroin prevalence increased from 1.29% to 2.09% [31]. In addition, in a study of over 500,000 definite drug test results from Millennium Health in the periods before and after the national emergency for COVID-19 was declared, the national findings revealed a 31.96% increase in

*An Examination of Safe Injection Sites and Ethical Issues in Philadelphia, United States DOI: http://dx.doi.org/10.5772/intechopen.104565*

non-prescribed fentanyl, 19.69% for methamphetamine, 10.06% increase in cocaine, and a 12.53% increase for heroin [32]. Along with the rise in heroin and synthetic drug usage, drug overdose deaths from both of these types of opioids have increased as well. For example, between the 12-months ending in June 2019 and the 12-months ending in May 2020, the 12-month count of synthetic opioid deaths increased by over 38.4% [28]. The increase in drug overdose deaths from heroin is co-linked with drug overdose deaths, as overdose deaths from cocaine typically combined with heroin increased by 26.5% [28]. While COVID-19 has resulted in the death of over 530,000 individuals in the United States as of March 2021, the COVID-19 pandemic has only accelerated the usage and drug overdose deaths from opioids, and has pushed the opioid epidemic out of the concern of the public eye [33].

#### **3. Case study**

Philadelphia is home to the worst opioid crisis in the United States. Of the 10 most populous counties in the United States, Philadelphia has the highest overdose rate [34]. In addition, according to the Philadelphia Department of Public Health, in 2019, over 1,150 people died from drug overdoses in Philadelphia with 80% of these overdose deaths involving opioids [35]. The COVID-19 pandemic has further caused an 11% increase in the number of drug overdose deaths in Philadelphia in the first three quarters of 2020 compared to the same period in 2019 [36]. The pandemic has been especially devastating for Black and Hispanic Philadelphians, as drug overdose deaths in the first three quarters of 2020 increased by over 40.3% for Black Philadelphians and increased by 5.9% for Hispanic Philadelphians while decreasing by 7.3% for white residents [36]. These discrepancies have been accounted for by explanations of systemic racism experienced by Black and Hispanic individuals that result in less access to treatment, education, and economic resources [36].

Even though the number of deaths is troubling, the number of Philadelphians addicted to opioids is even more problematic. In 2017, the Philadelphia Department of Public Health estimated that over 75,000 of its residents are addicted to heroin and other opioids [35]. At the center of the opioid crisis in Philadelphia is one main neighborhood: Kensington. The Kensington District is home to one of the largest open-air drug markets in the United States, with buyers and sellers of heroin and other opioids roaming the streets at all hours of the day [37]. Of the 1,217 people that fatally overdosed from drugs in Philadelphia in 2017, 236 individuals fatally overdosed in Kensington alone [35]. With high levels of opioid use and fatal drug overdoses, individuals in Kensington live in a perpetual state of suffering.

One resident of Kensington, Crystal, a 34-year-old mother of three children, is a devout heroin addict. Crystal is originally from the Kensington area and had several other of her relatives that were addicted to heroin [34]. After Crystal's husband lost his job, Crystal began to utilize heroin as a coping mechanism for this loss. As Crystal and her husband divorced, she continued to abuse heroin, and eventually found herself living on the streets of Kensington without her children. Through further suffering a broken ankle, Crystal continued to use heroin as a means to escape. Crystal would constantly need to be revived by Narcan, as she was heavily addicted to heroin. The heroin in Kensington, known as "Philly dope," is especially more dangerous as it is often laced with the dangerous synthetic opioid, fentanyl [34]. The heroin is also extremely cheap in Kensington at only \$5 a bag making it accessible to numerous individuals. With these factors, Crystal remained in a state of a constant dependency on heroin. When she was

without it, she would experience tremendous episodes of withdrawal. Crystal described this lifestyle as "playing Russian roulette with your life," but sadly like many other Kensington residents, she was too addicted to leave this lifestyle behind [34].

Although heroin users from Kensington like Crystal can grow up in Kensington, many users are drawn to the area for its reputation as "the Walmart of heroin" [34]. One middle-aged woman named Jax migrated to Kensington to start shooting up heroin. Jax was originally a college student that started using opioids in college but eventually became a prostitute after shooting up heroin in Kensington. Jax tried to remain sober by checking herself into rehab centers but could never escape the addiction. Despite having the initial support of her boyfriend, Jax's boyfriend eventually left, leaving Jax alone to continue her heroin use. Like many women in Kensington, Jax turned to prostitution to pay for bags of heroin. Prostitutes in Kensington have been raped, tied up, and abused but are often afraid to tell police about their abuse due to their previous drug or prostitution charges. After becoming pregnant in 2009, Jax used heroin for the whole nine months, and her resulting son currently does not live with her. In 2018, Jax spent 24 days in jail, but after being released, she overdosed nine times in two weeks. Despite being saved from death on numerous occasions, Jax simply wishes that people would "just let me die" [34].

As shown through the examples of Crystal and Jax, individuals from all different backgrounds can be drawn into devastating opioid addictions. Crystal inevitably became a product of her own environment, while Jax was attracted to Kensington for its powerful opioids [34]. Although each woman experienced unique life challenges, their current lives are plagued by a constant presence of overdosing and dependence on heroin. While these women could potentially benefit from rehab centers, it is evident through cases like Jax that these rehab centers are simply not enough. Even when Philadelphia mayor Jim Kenney attempted to clean up the streets of Kensington in 2017, displaced residents from his projects continued to refuse the city's offer of treatment [34]. While rehab centers are unlikely to benefit Crystal and Jax, safe injection sites could potentially allow these individuals to slowly escape their heroin addiction, and at least mitigate the harm of abusing heroin.

#### **4. Consequences of safe injection sites**

#### **4.1 Benefits of safe injection sites**

While safe injection sites have been a recently new topic of discussion in the United States, they have benefited other countries for decades. Canada decided to become the first North American country to implement safe injection sites in 2003. Leading up to their decision, Canada had been experiencing health-related and social harms with injection drug use, especially in Vancouver [38]. In the mid-late 1990s, Vancouver's health authorities declared a public emergency after trends showed over 300 annual fatal overdoses occurring in the province of British Columbia, along with an annual new HIV infection rate of approximately 19% among local people who inject drugs [38]. As a result, the first legally sanctioned safe injection site opened in Vancouver in 2003 [38]. The Portland Hotel Society (PHS), a non-government organization, was responsible for the creation of the first sanctioned site, which initially began by members quietly building the safe injection site in a seemingly boarded up vacant building [38]. The regional health authority decided to work with PHS to open the site after its development in the form of a scientific pilot known as Insite, and the site received a federal exemption under Section 56 of the Controlled Drugs and Substances Act by the federal Health Ministry [38].

#### *An Examination of Safe Injection Sites and Ethical Issues in Philadelphia, United States DOI: http://dx.doi.org/10.5772/intechopen.104565*

In the years since the creation of Insite, the results have been extremely promising. Since 2003, there have been over 3.6 million visits to inject drugs under the supervision of nurses, with 6,440 overdose interventions, and zero fatalities [39]. Along with preventing any overdose deaths, since 2003, there have been approximately 48,798 clinical treatment visits from users of illicit drugs. Furthermore, in the most recent data from 2019, Insite had 170,731 visits by 5,111 individuals, with 1,314 overdose interventions, and 3,158 clinical treatment interventions [39]. An average of 312 injections occurred at Insite per day in 2019, with 60% of these injections involving only opioids, 15% of injections involving stimulants only, and approximately 24% of injections involving a mix of opioids and stimulants [39]. Moreover, after the opening of Insite, the overdose mortality rate of all persons living within 500 m of the facility (70% of safe injection site users) decreased from 253 to 165 per 100,000 person-years, and one overdose death has been prevented for every 1137 users [40]. However, there was no change in overdose mortality elsewhere around the city of Vancouver, indicating the importance of Insite in inducing these changes. After the opening of Insite, there were also 67% fewer ambulance calls for treating overdoses, along with a decrease in HIV infections with an estimated 6–57 HIV infections being prevented per year in Vancouver [40].

Along with the tremendous benefits provided by Insite, the model has proved to be cost-effective. Insite's operating costs are approximately \$3 million per year, but the value of the benefits of Insite is much greater [41]. Without Insite, it is estimated that yearly HIV infections in Vancouver would by 83.5 infections increase from 179.3 to 262.8 infections [41]. Using the value of 83.5 preventable HIV infections, Insite has been estimated to save approximately \$17.6 million in lifetime HIV-related medical costs [41]. In addition, based on more conservative estimates, Insite has been estimated to prevent around three deaths per year and approximately 35 new cases of HIV [42]. Using these values, Insite has been estimated to have a societal benefit in excess of \$6 million after yearly operating costs are factored in, thereby producing an average benefit-cost ratio of 5.21:1 [42]. Moreover, another study projected that over 54 cases of hepatitis C infections would be prevented over ten years with the presence of Insite [43]. The amount of cost averted per case was estimated to be \$444,500 for each hepatitis C virus infection [43]. Through these estimates, it is clear that Insite is an effective use of public health resources when analyzing the measurable benefits of HIV infection and drug overdose deaths.

With the continued success of safe injection sites in Vancouver and around the world, it is evident that safe injection sites provide clear benefits to their communities. A summarized list of the benefits of safe injection sites is as follows:


#### **4.2 Bringing safe injection sites to the United States**

Based on the success of Insite and other safe injection sites facilities, the number of safe injection site facilities has continued to grow. As of 2021, there are approximately 120 safe injection sites operating in ten different countries throughout the world: Australia, Canada, Denmark, France, Germany, Luxembourg, the Netherlands, Norway, Spain, and Switzerland [44]. Despite the opioid epidemic ravishing the United States, there are currently no safe injection sites in the country. However, in the past few years, several cities in the United States have been trying to change that. With the worst opioid crisis in the nation, in January 2018, the city of Philadelphia began to look toward implementing a safe injection site in the form of Comprehensive User Engagement Sites (CUES) [45]. CUES was developed with Insite as a model and adopted many of its services, such as monitoring user injection of drugs for on-site overdose care, recovery/detoxification services, referrals to treatment, and other health services, such as wound care, immunizations, and pregnancy tests [46]. CUES was also structurally similar to Insite by providing a reception area for PWID and giving each PWID a card with an anonymous identification number [46]. The purpose of the card is not to collect personal information, but rather to provide PWID the address and phone number of the facility, phone number of counseling and rehabilitation programs, and also contacts to emergency services in case of an overdose [46]. At the reception center, PWID are also asked where they heard about the site from, their age and ethnicity, along with their interest in services, such as rehabilitation, psychiatric services, wound care, and clean needle exchanges [46]. After the reception, PWID can safely inject at separate benches in a large room under the supervision of healthcare professionals, and can then briefly relax in a separate lounge area for 30 minutes. During the lounge period, educational material, counseling, and rehabilitation services are offered to PWID [46]. Unlike Insite, CUES offers additional services, such as fentanyl screenings, Hepatitis-C/HIV screenings, a needle exchange program, Narcan distribution and education, early education, and counseling for rehabilitation and detoxification done by individuals in recovery who have actually experienced drug addiction [46].

The services provided by CUES also have extremely promising impacts on population health. For example, in December 2017, SCF-averted HIV infections were estimated to range from 1 to 18 annually with the low range assuming a receptive needle sharing of 2% with the upper range assuming a receptive needle sharing of 28.3% [47]. In addition, SCF-averted hepatitis C virus (HCV) infections were estimated to range from 15 to 213 annually assuming the same receptive needle sharing ranges as used in the HIV estimates [47]. While the low ranges are possible for both averted HIV and HCV infections, the Philadelphia Department of Health estimates that the actual rate of needle sharing is closer to 28.3%, thereby suggesting that true values for averted infections should be closer to the upper limits [47]. Along with HIV and HCV infections, the estimated number of annual overdose deaths averted within 500 meters of a SCF would be between 27 and 48 deaths annually, while the number of averted overdose deaths from opening a SCF would be between 24 and 76 deaths annually [47].

Along with the health impacts, the estimated financial impacts of SCFs are quite striking. For example, the estimated total value of overdose deaths averted in Philadelphia would be between \$12,462,213 and \$74,773,276 annually [47]. In addition, the estimated annual savings due to SCF skin and soft tissue infection (SSTI) reductions would be between \$1,512,356 and \$1,868,205 annually [47]. Furthermore, estimates predict that SCF will result in savings due to a reduction in emergency room visits, hospital stays, and ambulance calls. For example, the estimated annual savings due to SCF reducing ambulance calls for an overdose

*An Examination of Safe Injection Sites and Ethical Issues in Philadelphia, United States DOI: http://dx.doi.org/10.5772/intechopen.104565*

is \$123,776 [47]. The estimated annual savings from keeping PWID out of the emergency room is \$280,683, while the estimated annual savings on hospitals for PWID who overdose would be \$247,941 [47]. With these estimates, SCFs are expected to produce tremendous benefits to the health and financials of individuals in the city of Philadelphia.

With the promising impacts of safe injection sites in Philadelphia, numerous individuals in Philadelphia saw developments, such as CUES as an opportunity to successfully combat the opioid epidemic. In 2018, the Mayor of Philadelphia, Jim Kenney, and Philadelphia District Attorney Larry Krasner, both strongly supported the implementation of CUES. Instead of combating drug addiction through the criminalization of drugs by claiming a "War on Drugs," both Kenney and Krasner wanted to approach drug addiction from more of a harm reduction standpoint [48]. Through the opioid epidemic driving violence in Philadelphia and stressing the EMS system, both Kenney and Krasner realized that immediate action was needed that focused on saving lives "in a way that research has shown to be successful." [48]. For Kenney and Krasner, CUES provides not only a place where PWID can be safely injected under supervision, but also provides a direct link to treatment, resources for housing and meals, and the ability to save lives [48]. Krasner also expressed that he would not prosecute anyone involved in bringing safe injection sites to Philadelphia [48]. Moreover, safe injection sites, such as CUES, have the support of Philadelphia's Health sector. In 2018, Dr. Thomas Farley, Philadelphia's Health Commissioner and co-chair of the city's opioid task force, also expressed his support for safe injection sites [49]. Farley described how there are "many people who are hesitant to go into treatment, despite their addiction, and we do not want them to die" [49]. Instead of letting individuals die, Farley continued to reiterate the sentiment that safe injection sites save lives and connect individuals to treatment [49]. Based on the support of numerous public officials, as of early 2018, the message for safe injection sites was clear: CUES have the greenlight to be implemented. Although, instead of paying or operating any of the safe injection sites, the city of Philadelphia would simply be a facilitator and connector with the organizations that provided addiction services [49].

#### **4.3 Legal barriers to safe injection sites in the United States**

With the city of Philadelphia not directly funding safe injection sites, other organizations became responsible for the implementation of safe injection sites. Within a year, a privately funded, 501 tax-exempt, Philadelphia nonprofit corporation named Safehouse, attempted to address the opioid epidemic crisis by its plan to open the United States' first safe injection site in Philadelphia [50]. However, Safehouse's plan was met with immediate legal resistance. In February 2019, Bill McSwain, the U.S. Attorney for the Eastern District of Pennsylvania filed a civil lawsuit that asked a federal court to declare supervised consumption sites, otherwise known as safe injections sites, illegal under 21 U.S. Code 856, which is a section of the Controlled Substances Act known as the "Crack House" Statute [50]. The Federal Comprehensive Drug Abuse Prevention and Control Act of 1970, known as the Controlled Substances Act, had the main goal of improving the manufacturing, importation, exportation, distribution, and dispensing of controlled substances [51]. To create a "closed system" for controlled substances, the Controlled Substances Act further mandated that manufacturers, distributors, and dispensers of controlled substances must register with the Drug Enforcement Administration (DEA) [51]. In addition, the Controlled Substances Act categorized controlled substances into five schedules based on their abuse potential to further aim to mitigate the potential harms of these substances [51].

#### *Bioethical Issues in Healthcare*

In terms of safe injection sites, the Controlled Substances Act, has tremendous legal implications. For example, Section 856(a) of the Controlled Substances Act, otherwise known as the "Crack House Statute," contains a potential barrier to establishing safe injection sites. Subsection (a) regarding the unlawful acts of Section 856 of the Controlled Substances Act is as follows:

Except as authorized by this subchapter, it shall be unlawful:


Based on the Crack House Statute, it is illegal to run a facility where controlled substances, such as opioids, are used. With this statute, operating these facilities is considered a federal crime and individuals can be subject to a felony with imprisonment of up to 20 years, and hundreds of thousands of dollars in fines [52]. With McSwain's civil lawsuit against Safehouse, it now became up to the federal courts to decide if safe injection sites indeed violate the Crack House Statute. McSwain in conjunction with the Justice Department argued that the plain language of the law was clear, and if advocates of Safehouse wanted to change the law to open safe injection sites, they would have to lobby Congress [53]. On the other hand, advocates for Safehouse argued that the Crack House Statute does not apply to safe injection sites as the law only intended to impact the owners and tenants of drug dens at a time when the crack-cocaine epidemic was at its height [53]. Despite McSwain's appeal, in October 2019, U.S. District Judge Gerald A. McHugh did not believe the Crack House Statute applied to safe injection sites, such as Safehouse, as he did not believe that lawmakers had safe injection sites in mind when creating the Controlled Substances Act [53]. McHugh further argued that the goal of safe injection sites, such as Safehouse, is to "reduce drug use, not facilitate it, and that it was up to Congress to amend the statute if it wanted to deem safe injection [53].

After this initial victory defending the implementation of safe injection sites, the battle over the legality of safe injection sites has continued. On February 25, 2020, McHugh issued a Final Declaratory Judgement for Safehouse which declared that the proposed safe injection site did not violate any of the federal drug laws [50]. Safehouse asked for this judgment to be assured that they could proceed with their plans to open a proposed safe injection site [54]. With this reaffirmation of the legality of safe injection sites, Safehouse was ready to bring the first safe injection site inside the Constitution Health Plaza at the corner of Broad and McKean Street in South Philadelphia [54]. However, McSwain adamantly continued his argument against the implementation of safe injections sites under the current law, and appealed McHugh's decision to the U.S. Court of Appeals for the Third Circuit a few days after McHugh's final judgment [55]. McSwain also asked for an Emergency Motion of Stay, which would prevent safe injection sites from opening until the Third Circuit court made its decision [50]. Along with McSwain, community residents in South Philadelphia resisted the idea of safe injection sites. Residents argued that crime would be brought to their neighborhoods, and that safe injection sites were not going to solve the opioid epidemic [56].

#### *An Examination of Safe Injection Sites and Ethical Issues in Philadelphia, United States DOI: http://dx.doi.org/10.5772/intechopen.104565*

Despite the resistance, Safehouse did not want to slow the progress they had made. On March 10, 2020, in response to McSwain's order for a stay to be issued, Safehouse requested that a stay not be issued on the case [50]. However, during the following week, the city of Philadelphia went into lockdown due to the COVID-19 pandemic, resulting in the closure of courts across the Philadelphia area [57]. Along with the COVID-19 pandemic, protests against police brutality swept across the nation after the killing of Mr. George Floyd in late May 2020 [58]. With city and country officials being overwhelmed with the challenges associated with COVID-19 and the outrage over police brutality, McHugh ultimately decided to approve McSwain's emergency stay on June 25, 2020 [58]. Even though McHugh did not change his original verdict on safe injection sites, he believed it was the "wrong moment for another change in the status quo" [58]. After a long delay, a threemember panel of the Third Circuit Court of Appeals eventually started hearing oral arguments on November 16, 2020 [50]. At the conclusion of the case hearing, the Third Circuit Court of Appeals agreed with the Government that supervised safe injection sites are illegal under federal law on January 13, 2021 [59]. In a 2-1 decision, the appeals court decided to change to the decision of the federal district court as it argued that Safehouse "knows and intends that visitors to its consumption room will have a significant purpose of using illegal drugs" [59]. With this decision, Safehouse suffered a massive blow, as opening safe injection sites became declared to be illegal in the United States. On February 24, 2021, Safehouse filed a Petition for Rehearsing En Banc, which requested a rehearsal in front of the entire panel, but this request was denied on March 24, 2021, despite three judges issuing strong dissents to the denial [50]. Safehouse still has options to appeal to the Supreme Court of the United States.

With the promise of a ruling on safe injection sites going to the Supreme Court of the United States, several states have continued to lobby for state laws that support the implementation of safe injection sites. For example, after first introducing the idea of Harm Reduction Centers in 2019, lawmakers revised two versions of a bill known as H 5245 and S 0016, which focus on the creation of a harm reduction center advisory committee and pilot program [60]. The Senate version of the bill, S 0016, which was passed on February 23, 2021, would result in the establishment of an advisory committee that makes recommendations to the state's Health Department Director on the regulation of safe injection sites. Unlike the house version, the Senate version of the bill provides liability protection that prevents "property owners, managers, employees, volunteers, clients, or participants, and state, city, or town government employees acting in the course and scope of employment" from being arrested or prosecuted [60]. If the house version of the bill, H 5245, is passed by the house and approved by Rhode Island Governor Gina Raimondo, Rhode Island could be the first state to legalize safe injection sites [60].

Along with Rhode Island, on March 2, 2021, the New Mexico House passed HB 123, a bill authorizing counties to establish and operate OPPs (Overdose Prevention Programs) following guidelines that will be created by the New Mexico Department of Health by October 1 [61]. In the argument for the creation of OPPs, lawmakers took a similar legal stance to the proponents of Safehouse and argued that the purpose of these sites is to protect the health of people who do drugs, not to facilitate drug use [61]. If the legislation passes through the New Mexico State Senate, OPPs will be established in New Mexico. Despite the ruling against Safehouse in January 2021, state legislatures remain optimistic that their versions of safe injection sites will be federally legal, as President Biden has strongly emphasized the key component of harm reduction in his National Drug Control Policy. The Biden-era Office of National Drug Control Policy (ONDCP), places a great emphasis on "confronting racial equity issues related to drug policy" and "enhancing evidence-based harm

reduction efforts" [62]. With strong support for harm reduction in combating drug abuse by the President, the legal approval of safe injection sites seems to be on the horizon.

#### **4.4 Potential risks of safe injection sites**

While safe injection sites carry tremendous potential benefits, there are also some important risks. Outside of the legal issues previously discussed, one main potential risk of safe injection sites proposed by critics is that they can encourage drug use and disincentive drug cessation by sending out the message that drug use is legally tolerable [46]. One study on Insite in Vancouver measured changes in drug use among PWID in Vancouver both one year before and after Insite was opened. This study showed that there were no significant differences in rates of relapse into injected drug use (17% versus 20%), or stopping injected drug use (17% versus 15%) [63]. In addition, the study showed that there were no significant differences in crack cocaine smoking (12% versus 14%), rates of stopping methadone use (11% versus 7%) or starting methadone use (13% versus 11%), and rates of stopping binge drug use (58% versus 63%) [63]. The opening of Insite clearly did not significantly affect community drug use or drug cessation. In addition, another study examined drug injection cessation between December 2003 and June 2006 in Vancouver after the opening of Insite with a sample of over 1090 participants, and it was found that 46% of participants entered into treatment [64]. Based on this study, drug injection cessation does not appear to decrease or be disincentivized as a result of opening up safe injection site facilities, such as Insite, as PWID entered treatment to stop drug use.

Along with potential increases in drug use and the disincentivizing of drug cessation, another potential risk of safe injection sites voiced by critics is that these sites increase crime and neighborhood disorder. In a study comparing annual periods before and after the opening of Insite in Vancouver, it was found that rates of drug trafficking, assaults, and robbery were similar after Insite's opening [65]. Based on this study, neighborhood crime rates have not significantly increased or decreased as a result of opening safe injection sites, such as Insite. Similar to the trends in crime rates, there has been no evidence to show that safe injection sites increase neighborhood disorder. In a study comparing public injection drug use and public syringe disposal before and 12-weeks after the opening of Insite, there were statistically significant reductions in the daily mean number of injecting drug users injecting in public from approximately 4.3 users to 2.4 users and significant reductions in publicly discarded syringes from a daily average of 11.5 to 5.3 syringes [66]. This study also showed that there was a statistically significant reduction in injection-related litter for Insite as the pre/post daily mean count of injection-related litter decreased from 601.7 to 305.3 [66]. Based on this study, safe injection sites do not appear to increase neighborhood disorder. Moreover, critics of safe injection sites have also feared that these sites will promote drug tourism from outside of the community [46]. Despite the evidence showing that increases in crime rates and neighborhood disorder are unlikely, no studies are currently available that have analyzed the potential problem of drug tourism. However, scholars have pointed out that the majority of PWID users are residents in the area surrounding the safe injection Insite, so it would be unlikely that after the implementation of Insite people would travel long distances just to use drugs in a dangerous and impoverished area of Vancouver [46].

While crime rates, neighborhood disorder, and drug tourism seem unlikely to increase as a result of safe injection sites, continued potential risk of safe injection sites is the lack of community support for them. For example, South Philadelphia

#### *An Examination of Safe Injection Sites and Ethical Issues in Philadelphia, United States DOI: http://dx.doi.org/10.5772/intechopen.104565*

residents felt "blindsided" by Safehouse's decision to plan a safe injection site in South Philadelphia, and accused Safehouse of never soliciting the community's support [49]. Many residents located near potential safe injection sites fear the potential for increases in crime and neighborhood disorder with some completely rejecting the notion that safe injection sites can even mitigate the opioid epidemic. However, one study analyzing community perceptions of neighborhood disorder 5 years after the opening of the Uniting Medically Supervised Injecting Centre (MISC) in Australia, showed that the fears of residents seem to dissipate over time [67]. In this study, business owners and residents in the surrounding area of MISC noted that they had witnessed lower instances of public injecting and publicly discarded injecting equipment [67]. Over 90% of participants in this study also reported at least one advantage of MISC in their area [67]. Even though community support of safe injection sites tends to increase over time, it appears to be important to consult the community of proposed safe injection site locations to educate the members about the benefits and potential risks. This education could potentially make residents more understanding of safe injection sites from the start of their implementation.

According to critics, another potential risk of safe injection sites is that they will fail as PWID do not even want to quit injecting drugs to begin with. Scholars have argued that critics who have this viewpoint presuppose that PWID are "completely void of any desire to quit the drug habit, or that the PWID evaluate their desire to stay addicted so positively that the desire to quit is an insignificant element in their decision-making process" [46]. In a scenario like Insite where drug addiction is strong for users, it is false that PWID are completely void of any desires as addicted people experience a conflict between the desire to stay addicted and the desire to do away with drugs and start a normal life [46]. In addition, scholars believe that the view that the desire to quit is an insignificant element for PWID is false, as it implies that PWID enjoy a low quality of life along with the drug-induced euphoria they experience [46]. It is unreasonable to think that PWID enjoy their low quality of life filled with homelessness and violence in many cases. In a study of 42 PWID evaluating their perceptions of safe injection sites, several participants felt that safe injection sites would improve their neighborhoods through a lessened community exposure to drug use and less injection equipment on the streets [68]. Clearly, many PWID want to escape their life of drugs but need a facility, such as a safe injection site, to help overcome their addiction.

Along with the risk of safe injection sites failing based on the belief that PWID do not want to stop injecting drugs, safe injection sites also have financial implications. Unlike Canada where the operating costs of Insite have been provided by the British Columbia Ministry of Health Services and additional funding has been provided by Health Canada, cities in the United States are not currently funding safe injection sites [69]. Since the city of Philadelphia is not funding safe injection sites, many individuals rightfully question how these facilities will be funded and maintained. Before the potential opening of Safehouse in February 2020, Safehouse only had \$200,000 in the bank, which was tremendously less than the estimated annual \$1 million operating costs of the facility [54]. However, recently in March 2021, the \$1.9 trillion American Rescue Plan Act was enacted, which allocated \$4 billion to address the overdose crisis in America and face the challenges of substance use disorder and mental health [70]. Of the \$4 billion, \$30 million was allocated to "support community-based overdose prevention programs, syringe service programs, and other harm reduction services" [50]. This commitment to harm reduction may set the stage for funding for safe injection sites in the long term, although the funding of safe injection is still currently in the hands of private donors in the case of safe injection sites, such as Safehouse.

#### **5. Ethical analysis from a catholic social teaching perspective**

The development of safe injection sites as a solution to the devasting opioid crisis in the United States has caused a tremendous debate amongst individuals from a wide variety of backgrounds. As previously discussed, the advantages of safe injection sites are extensive. Safe injection sites have been shown to successfully manage on-site overdoses, reduce drug-related overdose death rates, reduce the risk behavior associated with HIV and Hepatitis C, increase the delivery of medical and social services, and increase the number of individuals entering into substance use disorder treatment. In addition, further advantages of safe injection sites include reducing the amount and frequency individuals use drugs, along with saving costs via reducing the prevalence of diseases, overdose deaths, and the need for emergency medical services. While safe injection sites, such as Insite, have clearly been shown to be cost-effective and successful in combating the opioid crisis in Vancouver, safe injection sites are not without their concerns. Critics of safe injection sites highlight concerns of increased drug use, crime, neighborhood disorder and drug tourism, reduced drug cessation, and the notion that safe injection sites will fail as PWID do not even want to quit drugs to begin with. Furthermore, critics have concerns about the potential lack of community support, how safe injection sites will be funded, and the legality behind them.

While these concerns have been previously discussed, one notion of the argument that seems to be missing is the ethical implications of safe injection sites. Are safe injection sites even ethical to begin with? Clearly, it would not be advisable to support a project that is unethical in nature, even despite the end result of the means. Even if safe injections sites provide the end result of mitigating the opioid crisis, they simply cannot be unethical in nature if they are to be successfully instituted in the United States. To determine if safe injection sites are ethical, the Catholic social teaching principles of respect for human dignity, solidarity, the common good, and the stewardship of resources will be applied to safe injection sites. The relationship of safe injection sites to the harm reduction theory will also be elaborated on to evaluate the ethics of safe injection sites.

#### **5.1 The principle of human dignity**

The principle of human dignity is known as the foundational principle for Catholic social teaching. The United States Conference of Catholic Bishops describes the principle of human dignity as the following:

*"Every human being is created in the image of God and redeemed by Jesus Christ, and therefore is invaluable and worthy of respect as a member of the human family"* [71]*.*

As expressed in this principle, every human being, from their conception to their death has inherent dignity and right to life based on that dignity. In practice, every human being, regardless of their personal race, religion, sex, age, national origin, sexual orientation, economic status, health, intelligence, or any other characteristic that differentiates individuals from one another, is worthy of respect [72]. Despite differing characteristics between individuals, simply being a human being confers one this dignity. As a result of this dignity, the human person is always seen as an end in the Catholic view, not as a means. The presence of human dignity further guarantees every human person a claim of membership in a community known as the human family.

#### *An Examination of Safe Injection Sites and Ethical Issues in Philadelphia, United States DOI: http://dx.doi.org/10.5772/intechopen.104565*

Applying the respect for human dignity to safe injection sites, all individuals, especially PWID, have an inherent value to their lives that must be respected. Despite using drugs, PWID are equal to every other human person in that their dignity must be safeguarded at all times. PWID are part of the vulnerable group of individuals across the world known as the invisible and dispensable minority. As a result, PWID are often stereotyped as less valuable members of society, and their dignity is overlooked. Safe injection sites respect the dignity of PWID by directly reducing drug use, drug overdose deaths, and diseases, all of which if left unattended would directly threaten the inherent value of each PWID's life. By helping to encourage PWID into substance use disorder treatment and giving them medical and social services, safe injections sites actually enhance the respect for human dignity for PWID by protecting these individuals' lives. Safe injection sites ultimately accept PWID for who they are and where they are at the present moment.

#### **5.2 The principle of solidarity**

The principle of solidarity at its core functions is to promote peace and justice for all, along with protecting the common good. The United States Conference of Catholic Bishops describes the principle of solidarity as the following:

*"Catholic social teaching proclaims that we are our brothers' and sisters keepers, wherever they live. We are one human family … . Learning to practice the virtue of solidarity means learning that 'loving our neighbor' has global dimensions in an interdependent world"* [71]*.*

As evident by this principle, every human being is part of one family known as the human family. Despite our national origins or any social, political, or economic barriers that separate us, every human being is interconnected with one another. Promoting solidarity for all involves a commitment to every human being that you will seek peace and justice for everyone and promote the common good. The principle of solidarity is grounded in the Gospels' calls for human beings to be peacemakers, and Pope Paul VI has elaborated on this notion by stating that "if you want peace, work for justice" [73]. Solidarity ultimately facilitates peace, justice, and the common good for all.

Despite this sense of togetherness across the globe, solidarity has been threatened by the lack of concern for the poor and the most vulnerable individuals in society. The United States Bishops have even promoted the notion that more attention should be provided to "the needs of the poor, the weak, and the vulnerable, in a debate often dominated by more powerful interests" [71]. In terms of PWIDs, these individuals are part of the vulnerable, poor, and weak in society. PWIDs often lack social support and financial resources to overcome their addiction to the drug, leading them to continue in a constant cycle of addiction. Safe injection sites promote solidarity by emphasizing a preferential option for the poor and vulnerable by giving them adequate care and resources to overcome their addiction. While others may look down upon PWIDs, safe injection sites graciously accept them for the human beings they are and seek to invoke unity to overcome their addiction together. Safe injection sites are a direct commitment to the global community to reduce human suffering and ensure the value of human dignity for all.

#### **5.3 The principle of the common good**

The principle of the common good is an essential ethical imperative in Catholic social teaching. The United States Conference of Catholic Bishops describes the principle of the common good as the following:

*"The common good is understood as the social conditions that allow people to reach their full human potential and to realize their human dignity"* [71]*.*

Based on this definition, the common good is inevitability linked to solidarity and human dignity. The social conditions that promote the common good presume the "respect for the person," "the social well-being and development of the group," and the maintenance by a public authority that promotes the ideals of peace and justice [72]. Without the foundational pillars of solidarity and human dignity, there would be no common good. In addition, the common good implies the good of all and every individual, which should be sought together collectively. However, this notion of the common good directly contrasts with utilitarianism's promotion of the greatest good for the greatest number. This utilitarian belief accepts the presence of a minority group always being injured, while the common good promotes equal treatment for all human persons. Since we are a global family of brothers and sisters, we all have a right and a duty to participate in society to seek the common good and well-being of all, especially for the poor and the most vulnerable individuals in society [71]. The Catholic Church emphasizes that the major role of governments and institutions is to protect human life and human dignity and to promote the common good [71].

With the presence of global interdependence in contemporary times, the principle of the common good emphasizes the "need for international structures that can promote the just development of the human family across regional and national lines" [72]. Since it is the government's duty to promote the common good for all, including PWID, the creation of safe injection sites would support the goal of addressing the needs of the most vulnerable and poor in society. As a community with inherently valuable lives, we have a duty to support PWID. Reducing drug use, drug overdose deaths, and disease are all clear components of the common good that promote the inherent value of human life and are a preferential option for the poor and vulnerable. The common good could easily be promoted by governments in this case with the development of facilities, such as safe injection sites, that seek to combat the devastation of drug use, which affects the human person, and as a result, the global human community.

#### **5.4 The principle of stewardship**

The principle of stewardship is one that emphasizes the value of management, not ownership. The United States Conference of Catholic Bishops describes the principle of stewardship as the following:

#### *"The Catholic tradition insists that we show our respect for the Creator by our stewardship of creation"* [71]*.*

Using this definition of stewardship, it is evident that a key role in Catholic social teaching is to protect the people and planet that God created. Since we are all created in the image of God, we not only have a moral responsibility to the environment, but also to our personal talents, personal health, and our use of the private property [72]. The principle of stewardship, therefore, contains the stewardship of resources, which in itself emphasizes a just allocation of resources in the world. This requirement for the just allocation of resources has tremendous implications for safe injection sites. For example, safe injection sites fulfill the duty of the stewardship of resources by providing a just allocation of healthcare resources. Safe injections sites, such as CUES discussed above, provide health care services, such as wound care, pregnancy tests, immunizations, recovery/detoxification services, referrals to treatment, and on-site overdose care to PWID, who are some of the

*An Examination of Safe Injection Sites and Ethical Issues in Philadelphia, United States DOI: http://dx.doi.org/10.5772/intechopen.104565*

most vulnerable individuals in society. By justly allocating healthcare resources to PWID, the principle of the stewardship of resources is effectively and adequately promoted. Furthermore, safe injection sites, such as CUES, provide the vulnerable with equitable access to food and housing, which PWID would not have adequate access to without these facilities. Providing basic necessities and rights to individuals, such as the right to healthcare and safe injection sites, are improving the lives of individuals, which in turn improves the overall well-being of the interconnected global community. Moreover, the more general principle of stewardship is applicable to safe injection sites through their ability to reduce waste in the environment. As previously described, safe injection sites reduce the number of drug injecting equipment waste present in the community, which further fulfills the goal of stewardship in promoting respect for God's creation.

#### **5.5 Ethical justification using the harm reduction theory**

The driving ethical force behind the push for safe injection sites like CUES to be made available as a viable option for PWID is their potential to be used under the harm reduction idea. Harm reduction is an approach focused on minimizing the negative results that go hand-in-hand with drug abuse [74, 75]. Harm reduction techniques have both a medical and ethical impact on the individual and society as a whole. Harm reduction techniques accept the individuals as they are, while also tailoring that person's treatment to fit his or her needs [76]. Furthermore, there are certain principles that are quintessential to an understanding of harm reduction, as listed by the Harm Reduction Coalition:


The CUES' ability to allow PWID to have a safe environment to inject drugs gives itself the potential to be used as a harm reduction agent in and of itself. Furthermore, many individuals who die from opiate overdoses, such as heroin, did not receive the necessary medical treatment in time to save them; allowing PWIDs access to the CUES could possibly save many preventable deaths. If we, as a society, value human life as sacred, we must find a way to prevent these deaths. The CUES program, such as Insite in Vancouver, supervised by trained medical personnel as a harm reduction agent could present a viable alternative to address the growing heroin addiction epidemic and save thousands of lives. The heroin epidemic is growing, fatal overdoses are increasing, and people are becoming more and more frustrated by legal and political barriers to new forms of treatment being put in place to stop this problem. As shown above, SIFs like Insite have been shown to decrease heroin abuse, disease, and mortality rate in Canada and Europe. In the United States, overdoses have led to 45,000 opioid overdose deaths in a 12-month period that ended in September 2017. This number is unacceptable by any standards [77]. Therefore, the harm reduction initiatives like Insite and a CUES must be introduced.

#### **6. Conclusion**

Safe injection sites are emerging as both an effective and ethical solution to the opioid crisis in the United States. However, to deal with the various concerns about safe injection sites along with the potential for additional benefits, this article seeks to make a variety of recommendations concerning the implementation of safe injection sites. These seven recommendations include legal, medical, educational, social, and financial implications that seek to make safe injection sites as effective as possible in the United States.


escape their addiction lifestyle, and give them skills and knowledge to be successful and productive members of society.


With these recommendations, safe injection sites could legally and effectively open in cities across the United States with the aim of mitigating the devastation that the opioid epidemic has caused in the country for the last three decades.

#### **Author details**

Peter A. Clark\* and David Grana Institute of Clinical Bioethics, Saint Joseph's University in Philadelphia, USA

\*Address all correspondence to: pclark@sju.edu

© 2022 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/ by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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[48] Kenney J, Krasner L. Criminalizing crack addiction was a mistake. Philly's approach to opioids must be different. The Philadelphia Inquirer, The Philadelphia Inquirer. 2018. Available from: www.inquirer.com/philly/ opinion/commentary/opioid-safeinjection-sites-cues-comprehensiveuser-engagement-philadelphia-jimkenney-larry-krasner-20180215. html

[49] Gordon E. "What's next for 'Safe Injection' Sites in Philadelphia?" NPR, NPR. 2018. Available from: www.npr. org/sections/health-shots/2018/01/24/ 580255140/whats-next-for-safe-injectionsites-in-philadelphia

[50] United States v. Safehouse. SafehousePhilly, Safehouse. Available from: www.safehousephilly.org/ us-v-safehouse

[51] Gabay M. The federal controlled substances act: Schedules and pharmacy registration. National Center for Biotechnology Information (NCBI), Hospital Pharmacy. 2013. Available from: www.ncbi.nlm.nih.gov/pmc/ articles/PMC3839489/#:~:text=The%20 Federal%20Comprehensive%20

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[52] U.S.C. Title 21 – Food and Drugs. GovInfo, U.S. Government Publishing Office. 2011. Available from: www. govinfo.gov/content/pkg/USCODE-2011-title21/html/USCODE-2011 title21-chap13-subchapI-partDsec856.htm

[53] Roebuck J, Aubrey W. Judge: Philly supervised injection site proposal does not violate federal law. The Philadelphia Inquirer, The Philadelphia Inquirer. 2019. Available from: www.inquirer. com/health/opioid-addiction/ safehouse-supervised-injection-siteruling-philadelphia-mchughopioids-20191002.html

[54] Winberg M. Philly's safehouse to open nation's first supervised injection site after judge clearance. Billy Penn, Billy Penn. 2020. Available from: billypenn.com/2020/02/25/ nothing-procedurally-impropersafehouse-injection-site-gets-judgesfinal-clearance/

[55] The United States Department of Justice, U.S. Department of Justice to Appeal District Court Ruling Regarding Drug Injection Sites. The United States Department of Justice, The United States Attorney's Office of the Eastern District of Pennsylvania. 2020. Available from: www.justice.gov/ usao-edpa/pr/us-departmentjustice-appeal-district-court-rulingregarding-drug-injection-sites

[56] Lieberman D et al. With overdose deaths up during the pandemic, Philadelphia fights for a legal safe injection site. NBCNews, NBCUniversal News Group. 2020. Available from: www.nbcnews.com/news/us-news/ overdose-deaths-during-pandemicphiladelphia-fights-legal-safe-injectionsite-n1235583

[57] Melamed S. Thousands are in Limbo as Philly Courts remain mostly stalled by coronavirus. The Philadelphia Inquirer, The Philadelphia Inquirer. 2020. Available from: www. inquirer.com/news/philadelphiacriminal-court-coronavirus-pandemicshutdown-jury-trials-preliminaryhearings-20200801. html

[58] Jones A. Federal judge puts hold on philly safe-injection site. CourthouseNews, Courthouse News Service. 2020. Available from: www. courthousenews.com/ federal-judge-puts-hold-on-philly-safeinjection-site/

[59] The United States Department of Justice. Appellate Court agrees with government that supervised injection sites are illegal under federal law; Reverses district court ruling. The United States Department of Justice, Office of Public Affairs. 2021. Available from: http://www.justice.gov/opa/pr/ appellate-court-agrees-governmentsupervised-injection-sites-are-illegalunder-federal-law#:~:text=January%20 13%2C%202021-Appellate%20 Court%20Agrees%20with%20 Government%20that%20 Supervised%20Injection%20Sites%20 are,room%E2%80%9D%20for%20 illegal%20drug%20use

[60] Blanchard SK. Will Rhode Island be the first state to legalize safe consumption sites? FilterMag, Filter. 2021. Available from: filtermag. org/rhode-island-first-safeconsumption-sites/

[61] Blanchard SK. New Mexico the latest state to advance a safe consumption site bill. FilterMag, Filter. 2021. Available from: filtermag.org/new-mexico-safeconsumption/

[62] Blanchard SK. Biden quietly announces harm reduction among his drug priorities. FilterMag, Filter. 2021. Available from: filtermag.org/ ondcp-biden-priorities/

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#### **Chapter 2**

## Determination of Death: Ethical and Biomedical Update with International Consensus

*Md. Shah Alam Panna*

#### **Abstract**

Humanity has been confronted with the concept and criteria of death for millennia and the line between life and death sustains to be debated. The profound change caused by life support technology and transplantation continues to challenge our notions of life and death. Despite scientific progress in the previous few decades, there remain big variations in diagnosis criteria applied in each country. Death is a process involving cessation of physiological function and determination of death is the final event in that process. Legally, a patient could be declared dead due to lack of brain function, and still may have a heartbeat when on a mechanical ventilator. Though there is no point in supporting ventilation in a dead person, withdrawing a ventilator before the legal criteria for death may involve the physician in both civil and criminal proceedings. To identify the moment of death is vital to avoid the use of unnecessary medical intervention on a patient who has already died and to ensure the organ donation process, clear and transparent. The age-old standard of determination of death is somatic standard and cardiopulmonary standard. Harvard report (1968) defines *irreversible coma* as a replacement criterion for death and prescribed clinical criteria for the permanently nonfunctioning brain. The current unifying concept of death: *irreversible loss of the capacity for consciousness combined with irreversible loss of the capacity to breathe*. WHO (2014) adopted minimum determinant death criteria, acceptable for medical practice globally, achieving international consensus on clinical criteria to maintain public trust and promote ethical practices that respect fundamental rights of individuals and minimize philosophical and biomedical debate in human death. AAN (2019) endorses that the brain death is the irreversible loss of all functions of the entire brain and equivalent to circulatory death.

**Keywords:** definition of death, determination of death, bioethical issues of death, death determinant, controversies on death declaration, death declaration, international consensus on death declaration

#### **1. Introduction**

*"The term brain death signifies that there is more than one variety of death. This is a serious misconception, perpetuated by such statements as "the patient declared brain dead at 3:00 a.m. on Thursday and died two days later." There is only one real phenomenon of death that clinicians and families struggle to recognize."*

*"A case of Elaine Esposito who lapsed into coma following surgery on August 6, 1941 and died on November 25, 1978, 37 years and 111 days later." President council (2008) of bioethics\**

1

Death is often considered in terms of medical, legal, ethical, philosophical, societal, cultural, and religious rationales. The biomedical definition of death is primarily a scientific issue supported by the best available evidence. A medical practitioner has certain ethical and legal responsibilities regarding death, such as the effort for prevention of death, determination of death, determination of time/ moment of death, declaration of death, issuing the certificate, and if needed, autopsy or organ removal for transplantation. That aspect has a lot of ethical, legal, emotional, and scientific issues. Dying is considered as a process, which affects different functions and cells of the body at different rates of decay. Doctors must decide at what moment along this process there is permanence and death can be appropriately declared. Diagnosis of death and a record of the time of the death, in most countries, are the legal responsibility of a medical practitioner. Determining the moment of death is vital to avoid the use of unnecessary medical interventions on patients who have already died and to make sure that the method of organ donation is obvious and transparent. Also, the time of death is important because of survivorship clauses in wills.

For the millennia, human has struggled with the concept and criteria of death, and thus, the line between life and death continues to be debated. The profound changes caused by the life support in organ failure, organ substitution technology, and transplantation still continue to challenge our notions of life and death [1]. Despite scientific progress in the last few decades, there remain big variations in the diagnosis criteria applied in each country with legal regulations resulting in misunderstandings among the public and health care professionals. Since the ample decades, the academic literature and the media have raised the voice in alarming language in issues of death determination and dead donation practices [2]. Difficulty arises to distinguish valid scientific critique from those criticisms supported by the fear of death itself, mistaken diagnosis or a premature declaration of death, or the fear of retrieving organs from the living.

The challenges in discussions about death are complex due to philosophical, religious, and cultural differences in the concept and definitions of death; debate about ethics, law, and religion; problems in performing research and the resultant shortfall in information and evidence on various aspects of the dying process; dispute in the validity of death determination practices; lack of understanding and/or awareness by general public and health professionals; last but not the least the emotionally charged nature of the subject matter. There are plentiful ways of dying but just one way to be dead. Hence, the baseline determination of death criteria should be rigorous, global, and acceptable for medical practice worldwide, while remaining respectful of diversities. International consensus on the clinical criteria for the death determination is of central importance to preserve public trust and promote ethical practices that respect the fundamental rights of people and promote quality health services [3].

In medical practice and law, the separation between being alive and dead should not be ambiguous. It designates the moments that follow events such as no medical or legal need to maintain resuscitation or life support, loss of personhood and individual rights, decedent's legal will execution, disposal of the estate, life insurance

<sup>\*</sup> McWhirter N. The Guinness Book of World Records. New York: Bantam Books; 1981. p. 42 [citing the case of Elaine Esposito who lapsed into coma following surgery on August 6, 1941 and died on November 25, 1978, 37 years and 111 days later]

#### *Determination of Death: Ethical and Biomedical Update with International Consensus DOI: http://dx.doi.org/10.5772/intechopen.100604*

settlement, burial or cremation of the body for final disposition, and religious or social ceremonies to mark the end of a life [4]. Dying is not an event rather a process, which affects various functions of the body at different rates of decay. The physician must confirm the moment along this process that there is permanence and death can be accurately declared [5]. Biological criteria of death are associated with biological features and irreversible loss of certain cognitive capabilities [6]. A patient could be declared dead legally as lack of brain function and may still have a heartbeat when on a mechanical ventilator. Though there is no justification in supporting the ventilation of a dead person, withdrawing the ventilator before the legal criteria of death may involve the doctor in both civil and criminal proceedings. The legitimate moment of death could be a wide range of time after the death has actually occurred. Many accident victims actually died at the scene of the accident but were declared dead officially on arrival at a hospital.

The scientific, biological, and medical aspects of the determination of death are still controversial. Certain ancillary and/or complementary laboratory tests could also be useful in situations where clinical testing cannot be executed or if confounding or special conditions are present. It had been recognized that there are limitations to the utilization of a number of these tests and further work will confirm the reliability of these tests. Death is a biological phenomenon, with profound social, religious, and psychological traditions, but very little background experience and available scientific information. The understanding of the biological aspect has gradually developed and strengthened as a direct result of technology, cell biology, organ donation, and transplantation, but was inadequately adjust in law, health policy, and bioethical discourse. Organ donation has forced the understanding of moment of death and acceptance or persisting controversy of where that line is.

It is urgent time demanding notion to adopt a minimum determination of death criteria to be acceptable for medical practice worldwide to achieve international consensus on clinical criteria to maintain public trust and promote ethical practices.

#### **2. Philosophical, religious, and bioethical discourse/debate**

The concepts and practices of death undoubtedly are influenced by values and social practice. The definition of death affects not only that consider to count as death, but also questions of grieving, medical treatment, asset disposal, organ donation, and a myriad of other legal and ethical issues [7].

The philosophical investigation of human death has focused on some overarching questions—What is human death? The conceptualization (definition) of death is the answer to this ontological question that defines death as the irreversible cessation of organismic functioning along with the irreversible loss of personhood. Next question, how can be determine that death has occurred? The answer is epistemological one, which furnishes both the *general standard* (criterion) for determining that death has occurred and *specific clinical tests* to show whether the standard has been met in a given case. Examples are traditional cardiopulmonary standard or neurological standard [8].

Finally, how do the deaths relate, conceptually, to the essence and identity as human persons? The metaphysics of the body and soul does so in terms of the logical dualism between the material body and consciousness or the immaterial mind. In the philosophy of mind, mental phenomena are nonphysical and thus distinct and separable from the body. The dualism of body and soul/mind suggests that while being a person is, undoubtedly, a matter of having a biologically human body. The existence of a person entails the presence of a thinking being, which has reason and reflection, and can consider itself as itself, in different times and places. The

individual identity of psychological persons is dependent on the brains' neurophysiology [9]. The brain death need not be considered as biological death rather a proxy for the loss of individual identity, that is, personhood [10]. When a person has died, it does not merely mean that some biological entity no longer functions. It means some unique mind or person, realized as a cognitive or psychological entity, has ceased to exist. The personhood admits of application of the terms life and death. It has been exceedingly rare for the demise of a biological human organism to take place sometime after the death of a person. Artificial life support can maintain the biological life of an individual in the absence of their continued psychological existence. Such brain dead individuals have been considered living cadavers and twice dead [11]. Human life is operationally defined by the onset and cessation of organismal function [12]. There are two different meanings to human death being alive and having a life, the notion of personhood allows us to focus on the autobiographical meaning of death—the loss of a person [13].

Other philosophical questions—When does a human being die? Is the organismic and denouement conception of death have any practical use? Schofield et al. present a definition of death focused on the final denouement of human beings as biological organisms. According to their view, the moment of death is the last process in bodily functions that maintain homeostasis and finally ceases [14]. Reducing death to the biological denies an important characteristic of being human, intellectual, or psychological nature. The conception of death acknowledges the cognitive aspect of human existence, at the same time, accommodating embodiment, that we both have and are biological bodies [15].

Generally, people believe that death terminates the whole existence of a person. According to Christians' belief, death puts an end to human existence on earth but does not end existence, instead opens an entrance into another sphere where existence continues either in heaven or hell after the final judgment that everybody will face it. Death is considered *a type of sleep* as the sleeper does not cease to exist while his body sleeps. Therefore, a dead person continues to exist despite the absence from the region in which those who remain can communicate with him. Sleep is understood to be temporary, but the unconsciousness in the dead is seen to be permanent [16]. Muslims and Jews have the same belief. The Quranic verses distinguish life and death, as sleep is a form of reversible unconsciousness (life) comparable to death as irreversible unconsciousness, both are the commandment of Almighty creator of the universe. With the moment of this commandment, the total integrating and coordinating mechanism of the human body is irreversibly lost and the person has no relation with this world. Finally, all religious beliefs support that death is the separation of the soul from the body. Plato defines death, as nothing else but the separation from each other of two things, soul and body [17].

Life is fundamentally grounded on the continuation of individual and collective cell function, dependent on the supply of nutrients and oxygen. Cell biology has exhibited that a layer of human cells, separated from the human organism, could also be grown in laboratory culture pending till bathed in a steady supply of nutrients and oxygen. The human being, a complex package of trillions of cells organized into organ systems, requires a cardiopulmonary delivery system for oxygen and nutrients to reach the cells. The development and evolution of modern cardiopulmonary resuscitation evolving into cardiopulmonary support technologies have been important advances informing our concepts of life and death.

The introduction of advanced medical technology poses new problems for the old standards that constitute death. The values automatically shape thinking of the death of a person, not merely a descriptive, scientific concept, but unequivocally contain evaluative content. The changing frontiers of the death drive to confront basic questions of persons and values that will adapt to address future questions.

#### *Determination of Death: Ethical and Biomedical Update with International Consensus DOI: http://dx.doi.org/10.5772/intechopen.100604*

It is vital to examine the evaluative content of concepts and practices relating to death, and reflects on what it is that we value or should value in persons. The philosophical definitions of death in the absence of indisputable objective signs of death should be considered, loss of integrative functioning of the whole organism, failure to engage the environment spontaneously by respiration, loss of consciousness and sentiency, and the separation of some vital principles from the body.

The neurological criteria for death represent an interesting advance in the ways of responding to changes in death and dying. The development of medical technology and life support techniques insist increasingly on precise notions to identify the most important aspect of neurological lives. However, the whole brain standard of death suffices in the vast majority of cases, but does not fully line up the value in persons. Time has come to decide the position of the current brain death standard as it mismatch with the values and negative consequences in determining death and in organ donation. Advances in technologies seem as if they will inevitably make this question inescapable. The prominence of *biomedical criteria* relying on brain death reduces the impact of metaphysical, anthropological, psychosocial, cultural, religious, and legal aspects disclosing the real value and essence of human life [6]. Should we retain the current brain death standard despite its mismatch with our values and despite negative consequences in determining death and in organ donation? Is a human being with total brain failure dead?

#### **3. Definition of death**

Ideally, the definition of death would link the concept of life or death with its clinical manifestations as closely as possible that fall in both two categories, the *philosophical* (conceptual), the understanding of essential differences between life and death, and *empirical*, which is to determine clinical signs, tests, or criteria that separate life and death most accurately.

Death is the transition from being a living mortal organism to being something that, though dead, retains a physical continuity with the once-living organism. Death is a process involving the cessation of physiological functions and the determination of death is the final event in that process. Death is a gradual process at the cellular level with tissues varying in their ability to withstand deprivation of oxygen. A distinction is now being made between death at the cellular and tissue levels and death of the person. Sydney declaration states, clinically, death lies not in the preservation of isolated cells but in the fate of a person. Korein's view of the life of the multicellular organism as a whole could no longer be explained in terms of a cellular task alone. The life of a typical unicellular organism encompasses fundamental tasks of the metabolic and reproductive attributes of a particular organism, empowering it to amplify in a direction of decreased entropy production (bacteria, amoeba, or zygote). In a multicellular organism, a large mass of cells could be alive but this does not indicate that the organism as a whole was alive. Machado refused the hypothesis that an explanation of death should include the function that contributes to the key human attributes and the highest level of control in the hierarchy of integrating functions within the human organism [18–24].

The full version of death includes three unique ingredients such as the definition of death, yardstick of brain death, and the tests to prove that the standard has been satisfied. The definition of death is typically a philosophical task, while the criteria and tests are medical tasks. Particular standards and tests must match with a given definition. The definition must represent attributes that are so important and significant to a living entity that its absence is designate death [25, 26]. The nonfunctioning entire brain provokes the permanent cessation of the functioning of the organism as a whole.

Biologically death is defined as the extinction of biological properties of life. Human death can be defined as the irreversible cessation of three interdependent and interlink vital functions of the body—the tripod of life (heart, lung, and brain). Another way death can be defined as a person is said to be dead, if he cannot take up spontaneous respiration or maintain circulation. There is growing medical consensus in a unifying concept of human death, which involves the irreversible loss of the capacity for consciousness, combined with the irreversible loss of the capacity to breathe.

Uniform determination of death (UDDA) act defines death as, an individual who has sustained either irreversible cessation of circulatory and respiratory functions, or irreversible cessation of all the functions of the entire brain, including the brain stem, is dead. Montreal forum defines death as the irreversible loss of the capability for consciousness and loss of all brainstem functions. That could result as a consequence of permanent stoppage of circulation and/or after catastrophic brain injury. In the determination of death, "permanent" refers to the cessation of function that cannot resume automatically even not be restored through intervention. The determination of death must be made in accordance with accepted medical standards.

#### **4. Pathophysiology in death process: brain failure and ventilator support**

The presence of the two vital functions, circulation and respiration in a body, is a sure sign of life. The patient who was diagnosed with entire brain failure and has been pronounced dead the vital functions are dependent on external support from the ventilator. The supporter of neurological standard designates these apparent signs of life are artifacts of the mechanical support that conceal the very fact that death has already occurred. To judge that logic, the essential facts of mechanical assistance for these vital functions be achieved if the interrelationship of three-body systems involved in breathing and circulation is understood. The three systems are the heart and circulatory system, the lungs and respiratory system, and the central nervous system. The pathophysiological processes that eventually end in mortal condition, *total brain failure* engage not only the central nervous system but also the circulatory and respiratory systems.

The prime functions of respiration are ventilation and diffusion. The ventilation involves both inhalation and exhalation; the diffusion involves the exchange of oxygen and carbon dioxide between atmospheric air and blood. The respiratory system brings atmospheric air by inhaling process to the alveoli where oxygen from the atmospheric air is able to move into the blood by the process of diffusion. The exhaling process of breathing facilitates to rid the body of the waste products carbon dioxide. The walls of the alveoli are extremely thin, formed to facilitate the diffusion of gases between the sacs and the blood vessels. Oxygen is essential to the continued metabolic work of the trillions of cells in the body. The absence of an endless delivery of oxygen, brought into the body through inhalations and transported to the tissues by the *circulatory* system, the cells, tissues, and organs of the body would stop functioning. The gas exchange is facilitated by the contraction and the relaxation of the muscles of respiration and the diffusion of gases into the blood across the lining of the tiny alveoli.

The CNS plays a crucial role in maintaining an organism's vital functions. The reticular activating system of the brainstem is also critical to the organism's conscious life, essential for maintaining a state of wakefulness, which is a prerequisite for any of the activities associated with consciousness. The contraction of the

#### *Determination of Death: Ethical and Biomedical Update with International Consensus DOI: http://dx.doi.org/10.5772/intechopen.100604*

muscles of respiration is brought about by a signal sent from the respiratory center located at the brainstem. A relatively high level of CO2 in the blood stimulates the respiratory center to send a signal to the muscles of respiration, which excites them to contract. For life to continue, the CO2 must be expelled and new oxygen brought in. Other parts of the CNS also be involved in signaling the muscles of respiration to contract, like *conscious breathing* where a person deliberately controls the depth and pace of breathing or *without conscious effort* as during physical exercise. If the respiratory centers of the brainstem are disabled, the organism will not make any respiratory effort. The chest will remain absolutely immobile and the body's need for oxygen will go unanswered [27].

To prevent the death of the organism, some external device (mechanical ventilator) for the breathing process is essential. The mechanical ventilator works by altering the pressure in the lung cavities in order that oxygen-rich atmospheric air will travel down and CO2-rich air will travel back up the respiratory tree. Gas exchange in the lungs will be of no benefit to the patient unless the blood is kept moving as well. Incoming oxygen must be delivered to tissues that required it, and accumulating carbon dioxide must be a shift to the lungs for expulsion from the body. Hence, a ventilator will help the patient as long as another vital system is functional, constituting the heart (working as a pump) and network of arteries, veins, and capillaries. The movement of blood occurs only within the body, whereas the movement of air is an exchange between the body and the surrounding atmosphere. Another relevant rationale of external support of vital systems is the indisputable fact that there is no part of the CNS that is absolutely essential for heart contractions within the way as the respiratory center in the brainstem is unconditionally essential in breathing. The heart is the most essential active part of the circulatory system and the vessels of circulation, being rigid plumbing lines that passively convey blood, pumped by the heart, are living tissues that undergo changes (some driven by CNS) to sustain a proper blood pressure. Patients of ventilator support must also be given drugs to maintain the blood pressure in a healthy range. Ventilator support designates the external supports of vital functions of breathing and circulation, in lieu of breathing effort of organism, stimulated by the respiratory centers of CNS, an external device moves the lungs and facilitates the inflow and outflow of needed air. It offers the heart muscle still to function, as the myocardium, like other cells in the body, needs oxygen to stay alive. The argument for the neurological standard of determination of death begins with facts that the respiratory motion supported in this way is not in itself a symbol of life, rather an artifact of technological intervention. Neither a beating heart, in this instance, a symbol of life, or merely the continuation of a spontaneous process would quickly cease if the ventilator is withdrawn [27].

*Loss of the ability to breathe* is not a sufficient condition for declaring that an individual has died, along with other functions indicative of life must be lost and functional losses must be irreversible. The inability to breathe automatically is insufficient for pronouncing death can often easily be dispelled by considering neurological injury that deprives a patient of the power to breathe and yet leave untouched the ability to continue activities dependent on other parts of the CNS. Patients with high spinal cord injuries remain awake and alert but dependent upon ventilators for respiratory support. Moreover, deprivation of all functions of the CNS is not a sufficient criterion for declaring death if this stoppage of function is not permanent. There are critical care cases that reveal the significance of this criterion such as a patient in a deep, nonbreathing (apneic) coma during a critical emergency and therefore assist in ventilator allowing time for CNS functions to return. Sometimes a full recovery of CNS functions happens, though the functions that return will only be enough to abandon the patient in a vegetative state and will be labeled as a persistent vegetative state PVS. †2 The deep, nonbreathing coma that the patient was in prior to waking into the vegetative state could not have been dead since the loss of functions proved to be reversible.

#### **5. Historical landmark in biomedical aspect of death determination**

#### **5.1 Medieval landmark: transition from heart to brain**

Humans have long used criteria and technology to assist in the diagnosis of death. The link between breath and life is equally as ancient and found in both Genesis (2:7) and the Qur'an (32:9). Somatic criteria, such as the presence of decomposition and rigor mortis, are the oldest in human history. Over 800 years ago, when Maimonides codified the diagnosis of death as the absence of the heartbeat and respiration with cooling of the body [28], he was likely documenting a standard used from down of civilization.

In the eighteenth century, the physician was confirmed about death if the heart and lungs break off, but lacked adequate tests to certify it. In the twentieth century, the moment of death became less clear, and thus, the tests physicians had finally perfected proved insufficient. Historically, until the early twentieth century, physicians' inexperience in human anatomy and physiology left them poorly equipped to accurately test for death. From the eighteenth through the mid-twentieth centuries, a person was declared dead when the heart stopped beating and lungs ceased to function. In the early part of the twentieth century, while the standard to check death was well established, the understanding of when the death occurred became the subject of great debate. The fear of premature burial was replaced by the fear of apparent death sustained by life support systems. These issues reach a climax in the latter part of the twentieth century when the cardiorespiratory definition of death was reevaluated and a novice addition of brain death was introduced. Intensifying new questions as to the moment of death, the brain death criterion demands further revision of the empirical tests. The nature of death, however, does not lend itself to one discipline rather considers metaphysics, sociology, theology, and medicine. Historically, the irreversible stoppage of heart and lung functions constituted death as the absence of heart and lung activity immediately leading to failure of the entire organism. It has become apparent that cardiac and respiratory activities were significant for separating the living from the dead. The moment of death was firmly estimated but the task of confirming criteria to check for irreversible quiescence of functions proved more challenging and often had catastrophic consequences. A consensus emerged that once the heart and lungs ceased to function the person was dead, although the empirical criteria to test for death were suspect. Because of this critical divide between theory and practice, instances of premature burial occurred. To safeguard premature burial date back to antiquity with the Thracians, Romans, and Greeks, each waited 3 days for putrefaction to start before burying their dead. The Romans took a more extreme approach by amputation of a finger to ascertain if the stump bled, in addition to calling out the person's name three times while on the funeral pyre. Hence, the premature burial was a great worry, though it did not attain climax until the eighteenth century, accelerated by the intellectual climate. The knowledge and scientific revolution instituted a radical change in the insight of life and death [29].

<sup>†</sup> Jennett B, Plum F. Persistent vegetative state after brain damage. A syndrome in search of a name. Lancet. 1972;1(7753):734-737

#### *Determination of Death: Ethical and Biomedical Update with International Consensus DOI: http://dx.doi.org/10.5772/intechopen.100604*

Belief in the afterlife was not as important as life here due to the works of Bacon, Descartes, and Galileo, which emphasized the notion that life might be improved if not perfected by scientific manipulation. There is little practical obligation to worry oneself with an afterlife if this life could be manipulated by the art of medicine. Revulsion (drawing of disease) by the dissection of cadaver found in the sixteenth and seventeenth centuries as the study of human anatomy revealed the secrets of the *belle mécanique*, or the beautiful machine [30]. Fears of premature burial appear to have culminated in the eighteenth century, when George Washington made his dying request and Jean-Jacques Winslow in 1740 famously stated that putrefaction is the only sure sign of death. In 1833, Dungson also voiced commencement of putrefaction as a certain sign of real death [31]. Traditionally, the physician uses the basic cardiopulmonary standards as heart or lung functioning criteria to determine the death. The physicians palpate pulse, listen for breathing, hold a mirror in front of the nose to test for condensation and look if the pupils were fixed. William Harvey, in seventeenth century, first described the circulation of blood and the function of the heart and under this concept, death was when the heart and circulation have stopped. Ibn al-Nafīs (died 1288), an Arab physician, wrote about pulmonary circulation 300 years before it was discovered in Europe [32–35].

During this era, fear for early burial was so prominent that led to the establishment of waiting mortuaries and security coffins with alarm mechanisms and permanent air supply. The "Academy of sciences prize" was awarded in 1846 to Dr. Eugene Bouchut for his best work on the "signs of death and the means of avoiding premature burials." He suggested the utilization of the stethoscope, invented in 1819 by Laennec, as a technological aid to diagnose death. Other popular practices for death determination were inserting leeches near the anus, applying specially designed pincers to the nipples, or piercing the heart with a long needle with a flag at the end, which wave if the heart is still beating. Bouchut suggested that a person could be declared dead if a heartbeat was absent for 2 min. He extended the period to 5 min, in the face of opposition [36–39]. Case reports from physicians (Harvey Cushing) writing around the beginning of the twentieth century had evident that patients of cerebral pathology would die from respiratory arrest and subsequent circulatory collapse. Loss of electrical activity in the brain and cerebral circulatory arrest might signify human death that was evident in subsequent decades. The advent of mechanical ventilation, halting the inevitable circulatory collapse that follows the cessation of spontaneous respiration with the advent of mechanical ventilation, and the relevance to diagnosing death using neurological standard were understood.

In 1959, two historical landmarks were published, Mollaret and Goulon proposed the term *coma de´passe*´ for an irreversible state of coma and apnea, and also, Pierre Wertheimer's group, a few months earlier, proposed neurological standard for death determination, that is, *death of the nervous system* [40, 41]. Those standards are practiced widely as an indicator of medical futility and a point at which ventilation might be stopped. Using neurological criteria, Belgian surgeon Guy Alexandre carried out the first transplantation from a heart-beating donor in 1963 and Christiana Barnard performed the first heart transplantation in 1967, after DCD who satisfied the criteria for coma de´passe´ [40].

#### **5.2 Papal allocution (1957): prolongation of life**

A group of anesthesiologists observed problems of sustaining the body alive in the absence of total brain function. This problem was presented to Pope Pius XII and resulted in the publication of a papal allocution describing that *the death* declaration *was not the province of the church*. Acknowledged, *it remains for the doctor to* offer *a*

transparent *and precise definition of death and* therefore, *the moment of death*. Another important point in the relation of the "prolongation of life" was that death should not be opposed by extraordinary means in hopeless conditions, though precise phenomena of hopelessness and extraordinary were not stated. Thus, in such hopeless cases resuscitation could be discontinued and death be unopposed [42].

The papal allocution culminate research, by three categories of French neurologists and neurophysiologists during 1959, separately studied comatose and apneic patients separately, narrated terms death of the "systema nervosum and coma de´passe´" translated as beyond coma or ultra-coma and subsequently by others as irreversible coma. These patients were respirator dependent, in an unresponsive coma, and areflexive. EEG and deep intracranial electrical activity were entirely absent. The investigators' conclusion was that the brains of these patients were irreversibly dysfunctional. The WMA ethical committee and its council undertake dialogue and conference on death, 2 years earlier the first heart transplant by Christian Barnard in 1967. Wijdicks wrote that the first idea for the formation of the Harvard committee was recorded in a letter from Henry Beecher to Robert H. Ebert in September 1967. The Sydney and Harvard committees worked in parallel for several months, without either being aware of the other's work [41–45].

#### **5.3 Harvard Ad Hoc committee report and Sydney declaration: new definition**

The year 1968 was a crucial time for defining human death on the neurological ground and a milestone event in the history of medical science. On August 5, 1968, the Ad Hoc committee of the Harvard medical school to examine the definition of brain death published a report, as *irreversible coma*, in the JAMA [46]. On the same day, the 22nd World Medical Assembly, meeting announced the Declaration of Sydney [47–49], a pronouncement on death that is less often quoted because it was overshadowed by the impact of the Harvard report. The delegates from 26 countries of 64 WMA member nations met in Sydney, Australia, to hold the 22nd assembly. The WMA had been worried about a new definition of death, to formulate a report of death under the new circumstances in an epoch of advances in resuscitation, and the increasing need to find organs for transplantation. The concept of brain death was formulated in this landmark report as irreversible coma. Though brain death has been widely accepted for the determination of death globally, many controversies yet to be settled. The concept evolved as a result of the convergence of several parallel developments including advances in resuscitation and critical care, research into underlying physiology of consciousness, medical futility, and ethics in end-life-care.

Since 1968, the concept of brain death has been extensively analyzed, debated, and reworked. Still, there remain much misunderstanding and confusion, especially for the general public [50]. The Declaration of Sydney touched on key philosophical issues on human death. It proclaimed that in most situations physicians could diagnose death by the classical cardiorespiratory criteria. In spite of this, two modern practices in medicine force them to revise the time of death: first the ability to maintain circulation by artificial means and second the use of cadaver organs for transplantation. The essential public addresses death as a progressive process at the cellular level with tissues varying in their capability to cope with deprivation of oxygen, but clinically death "lies not in the preservation of isolated cells but in the fate of a person." Also, it is described that the death determination must be grounded on clinical judgment, supplemented if necessary by a number of diagnostic aids, emphasizing the EEG. Nonetheless, it asserted that the overall judgment of the physician could not be replaced by any ancillary test. The declaration went further, proposing a more philosophical and conceptual explanation about

*Determination of Death: Ethical and Biomedical Update with International Consensus DOI: http://dx.doi.org/10.5772/intechopen.100604*

the relationship between death and the fate of a person. The Harvard committee did not provide a clear concept of death but emphasized a clinical explanation of brain death, describing in detail the anatomical substratum and tests. The Sydney declaration did not use the term brain death but declared the clinical judgment for death determination and the Harvard committee, although mentioned the term brain death, finally select irreversible coma along with a detailed set of clinical criteria for death declaration. Both the Sydney and the Harvard committees suggest the use of EEG. For the purpose of the death diagnosis and transplantation, the Sydney declaration advocates two or more physicians not involved in transplantation should make the diagnosis, while the Harvard committee voiced that the death declaration should be made first, and then, physicians not involved in the transplantation procedure should be the one to turn off the respirator. Both committees justify a legal regulation of this issue [49]. Sydney declaration was amended at 35th WMA, by the addition of a key point declaring that "It is essential to determine the irreversible cessation of all functions of the whole brain, including the brain stem" for diagnosis of brain death but the EEG was not mentioned and no other issues were modified [49, 50].

#### **5.4 President's commission report on medical, legal, and ethical issues in the determination of death: definition of death and UDDA**

In July 1981, the President commission for the study of ethical problems in medicine and behavioral research published a report, *defining death*, to the President, Congress, and the relevant US government departments. It proclaimed that a person is dead, who has experienced either *irreversible stoppage of circulatory and respiratory functions*, or *irreversible cessation of all functions of the whole brain, including brain stem*. The death determination must be practiced in accordance with accepted medical standards. President's Commission report permitted consolidation of the whole-brain criterion of death [51].

A scientific basis was suggested to justify brain death with the theory of the brain as the central integrator of the body. According to this theory, the organism becomes a rapidly disintegrating collection of organs following the brain death (BD). Consequently, the concept of BD is not only an ethical and/or social concept or a matter of values, rather a matter of scientific facts such as irreversible stoppage of functioning of the organism as a whole is death. The guiding principles of irreversible cessations of functioning of the entire brain are absolutely correlated with the permanent cessation of functioning of the organism as a whole as the brain is necessary for the functioning of the organism. The brain integrates, generates, interrelates, and controls complex bodily activities. A patient on a ventilator with entirely destroyed brain is merely a group of artificially sustained subsystems since the organism as a whole has ceased to function. President's Commission report also supports that rationale, convincing the gravity of the brain and recognized the profound instability of the brain-dead organism. In adults who have an irreversible stoppage of the whole brain's function, the mechanically generated functioning could exist only for a limited time as the heart usually stops beating within 2–10 days [51].

The enabling legislation for the President's Commission directs it to study the ethical and legal implications of the matter of defining death, including the probability of developing a uniform definition of death [51]. The central conclusions were that the recent developments in medical treatment necessitate a restatement of the standards traditionally recognized for determining that death has occurred and such a restatement ought preferably to be a matter of statutory law, which should be uniform among all the states. The definition embodied in the statute ought to

address general physiological standards instead of medical criteria and tests, which will change with advances in biomedical knowledge and refinements in technique. The death is a unique episode that could accurately be confirmed either on the traditional grounds of permanent cessation of heart and lung functions or on the basis of permanent loss of functions of the entire brain. Any statutory definition must be separate and distinct from provisions governing the donation of cadaver organs and any legal rules on decisions to terminate life-sustaining treatment. American Bar Association, American Medical Association, and the National conference of commissioners on uniform state laws together have declared the statute, the Uniform Determination of Death Act (UDDA) affirmed: "an individual is dead who has **sustained** either, *the irreversible cessation of circulatory and respiratory functions*, or *irreversible cessation of all functions of the entire brain, including the brain stem*." A determination of death must be made in accordance with the accepted medical standards [51].

The UDDA is a statute, to address the societal problem created in the midtwentieth century, due to the development of mechanical ventilation and other organ-sustaining technologies, to support permanently brain-injured individuals. The justification of the UDDA was to establish a uniform definition of death, determined by *acceptable medical standards*, that was transparent and socially accepted. The President's Commission and the UDDA considered death to be a unique episode in spite of causation, resulting from either irreversible failure of the brain or circulatory function. The act acknowledged the biological facts of universal applicability while seeking to safeguard patients against ill-advised idiosyncratic pronouncements of death. The UDDA viewpoint was supported by the majority of medical and legal authorities, the original UDDA wording also supported by the AAN. The neurologic insults may cause temporary stoppage of multiple brain functions, leading to disorders of consciousness, and the irreversibility component for the brain death criteria requires that these functions have ceased permanently, with no hope of resumption through clinical intervention or auto-resuscitation. Several medical associations support the UDDA definition of death and have participated in guideline development pertaining to the establishment of brain death in adults and children. A patient declared dead legally by considering neurologic criteria in all the state of USA except the state of New Jersey, however, allows for religious exemptions to the declaration of brain death if family members object. In such cases, death is not declared until the patient has met cardiopulmonary criteria for death [52–55].

#### **5.5 Task force recommendations (1987): the guidelines for the diagnosis of brain death in infants and children (pediatrics guideline)**

In the executive summary update of task force recommendations, declare requisite for the diagnosis of brain death in children of two neurologic examinations is performed by two independent physicians and two apnea tests, both of which may be organized by the physician managing ventilator care [56, 57]. Examinations should follow an observation period of 24 hours for neonates less than 30 days old and 12 hours for older infants and children up to age 18. It is significant to note that there may be institutional variance in the way these criteria are interpreted, and pediatricians may adapt their brain death testing methods to take into account the age-related anatomical and physiological differences between neonates, infants, and children. Parents and other family members of children undergoing brain death testing may require close attention and additional support [58, 59]. The pediatric guidelines were updated in 2011 by the American Academy of Pediatrics. A recent study reveals widespread disparities in adherence to the guidelines nationwide. It is essential to follow a standardized process to ensure accuracy in the diagnosis and inconsistencies in

*Determination of Death: Ethical and Biomedical Update with International Consensus DOI: http://dx.doi.org/10.5772/intechopen.100604*

diagnosis could lead to false-positive brain death determinations, which could erode the public trust in the ability of physicians to declare death [58–60].

#### **5.6 White paper on controversies of determination of death by president council of bioethics: total brain failure (2008)**

In December 2008, the President's council on bioethics published a white paper (controversies in the determination of death) in which the neurological standard was carefully reexamined [27]. The council built the insight in biological reality by appropriately describing the clinical and pathophysiological understanding of brain death, which offers substantial reassurance to the ultimate validity of the neurological standard. It effectively gives a new foundation to the justification for the neurological standard of death. The council strongly agreed that "*Relaxation of the DDR is a morally unacceptable and logically specious way to deal with the uncertainties of the criteria for the death of the donor*."

The council works was a historical decision that answers lot of *controversies and philosophical debate* in light of sound biological and pathophysiological evidence; debate on several controversies in the determination of death includes those arising in the context of controlled DCD with a primary focus on the clinical and ethical validity of neurological standard; controlled DCD is analyzed and the traditional cardiopulmonary criteria, also voiced concerns about the difficulty of safeguarding adequate end-of-life care for the patient-donor. The principal argument was—Does a diagnosis of *whole brain death* mean that a human being is dead? In other words, does the neurological standard rest on a sound biological and philosophical basis? [27].

Whether a patient in the condition of total brain failure is actually dead and can it be said with sufficient certainty to ground a course of action as the mortal remains of a human being. To ascertain those, up to this time, two facts about the diagnosis of total brain failure have been taken to provide basic support for a declaration of death: first, that the body of a patient with *total brain failure* diagnosis is no longer a *somatically consolidated whole*, and, second, that the capacity of the patient to sustain *circulation* will cease within a definite span of time. Another dispute, a patient with total brain failure is no longer able to carry out the basic work of a living organism. The patient has lost permanently the openness to the surrounding environment and the ability and drive to act on this environment on his own behalf. The respiratory function and cell metabolism sustained by mechanical ventilation are not due to *spontaneous* respiration. The council on bioethics acknowledges that such interventions with mechanical ventilation may preserve certain integrative bodily functions in patients declared dead by neurologic criteria, and such integration is not enough to define these patients as living. Patients who experience the neurologic criteria for brain death can no longer conduct the definitive work of a living organism, which is to be receptive to and act upon its environment in order to acquire the needs to preserve itself, such as breathing spontaneously, withdrawing from pain, or sleeping and waking. While such behaviors do not justify self-consciousness, they verify that the organism is alive. However, the patients kept alive *artificially*, by pacemakers, defibrillators, vasopressors, ventricular assist devices, artificial nutrition, and hydration, are not, by that fact alone, considered to be *dead*. A living organism participates in self-sustaining, need-driven activities essential to and constitutive of its trading with the surrounding world. These activities are genuine signs of active and existing life. A judgment that the organism as a whole has died can be made with confidence if these signs are lost and the activities had stopped.

Another view of the neurological standard was also pointed within the council for certainty about the vital status of patients with total brain failure, the only rational and defensible conclusion of such patients are severely injured, but not yet dead. Hence, only the traditional signs of permanent cessation of heart and lung function should be used to declare a patient dead. Accordingly, medical interventions for patients with total brain failure should be withdrawn only after they have been judged to be *futile*, in the sense of medically ineffective and non-beneficial to patients and disproportionately burdensome. The judgment must be done on the basis of ethical grounds considering the whole aspect of the particular patient and not merely the biological facts of the patient's condition. Then, the interventions can and should be withdrawn so that the natural course of the patient's injury can reach its inevitable terminus. Preparation for burial or for organ procurement is morally valid only when medical intervention has been judged as futile and the heart of the patient has stopped beating [27].

The understanding of medical futility [61, 62] has been developed in several papers by Edmund D. Pellegrino. Futility is the condition of a patient's disease, which is beyond medical rescue, such as beyond the powers of medical technology to help. Clinical futility is present when any medical intervention is considered as ineffective, non-beneficial, and disproportionately burdensome for the patient. The clinical judgments of the futility of a given therapeutic intervention involve a rational balancing of three factors: efficacy of the given intervention, the purpose of which doctor alone can make; second, the advantage of that intervention, the patients and/or their surrogates can make; and third, the burdens of the intervention (cost, discomfort, pain, or inconvenience), jointly assessed by both physicians and patients and/or their surrogates. Adjusting the relationship among those three criteria is at the heart of prudent, precautionary, and proportionate action [27].

Lastly, the council members on bioethics had opined that the current neurological standard for declaring death, grounded in a careful diagnosis of total brain failure, is biologically and philosophically defensible. The council also concluded that, *in an issue of organ transplantation, determining death and procuring organs should be addressed separately. The questions about the vital status of neurologically injured individuals should be taken up prior to and apart from ethical issues in organ procurement from deceased donors*. The recommendations are: first, to reaffirm the ethical propriety of the dead donor rule (DDR); second, to reaffirm the ethical acceptability of the neurological standard as well as the cardiopulmonary standard; and third, to reject the use of patients in permanent vegetative states as organ donors. The council has concluded that the neurological standard remains valid that was adopted at the President's commission of 1981 and enacted in UDDA.

#### **5.7 Preserving the dead donor rule**

The DDR has been secured for the ethical and social acceptability of organ transplantation protocols from their primitive days. This rule demands assurance of the death of the donor as the first step in any ethically legitimate transplantation protocol (other than those involving healthy, living donors). Additionally, the death of the patient must not be accelerated, nor end-of-life care made vulnerable in any way, to accommodate the transplantation protocols [27]. No protocol can demand ethical approval without trustiness to the present rule, in any ethically legitimate transplantation protocol (other than those involving healthy, living donors).

Relaxation of the DDR is a morally and ethically inappropriate and rationally specious way to deal with the uncertainties of the standard for the death of the donor. It leaves the options of the criteria for death to individual preference, amounting to the eventual abolition of any stable criteria for death. Numerous additional dangers are the use of assisted suicide to facilitate organ donation, legitimizing the utilization of patients in permanent vegetative states or of less-than-perfect infants as donors [27]. It exposes "undeclared" patients to "presumed" consent to donation [27, 62, 63].

#### **5.8 Montreal forum (2012): international guidelines for the determination of death**

Montreal forum was formed to address the global challenge in response to the request from various countries to "WHO and Transplantation Society" to provide guidance for leading practices and health policy in death determination by neurological and/or circulatory criteria. The guidelines would promote safe practices assuring the absence of diagnostic errors in death determination, safeguarding patients and health care professionals, upgrading public and professional confidence in the dead donation process along with strengthening the availability of organs obtained by ethically legitimate donation and procurement practices. The principles adopted by the forum for discussion were the safeguarding the interests of dying patients overrides facilitating deceased donation for transplantation; task restricted to a scientific, medical, and biological basis for death determination; the principle of the "dead donor rule" applied to deceased donation practices; use of available best scientific and medical evidence for decisions; guidelines and recommendations must have utility, applicability, and be workable in a wide range of global health care practice settings. The key issues of the forum considered death as a biological event with a focus on the physiological aspect of the dying process and death determination and respectfully recognized the impact of attending religious, ethical, legal, spiritual, philosophical, and cultural aspects of death [1].

Forum outcome of the review developed some *terminologies* for clarity for debate/ discussion on death. These terminologies reduce a lot of debates on death determination and arriving at a sound consensus; the second outcome was the consensus on *death and brain*, and *death and circulation* regarding illustrative examples of precondition for neurological testing, clinical and laboratory test for diagnosis of neurological and circulatory function, guidelines for declaration, neurological and circulatory sequences of dying process, integrated circulatory and neurological sequences of the dying process, minimum acceptable criteria for clinical test, apnea test and additional lab test, auto-resuscitation, circulatory arrest and brain function, and CPR and life support. These aspect created the foundation for understanding the scientific basis of death declaration and lastly *operational definition of death* with global agreement around complex practice and future research to enrich the knowledge and overcome the gaps. Finally, the forum came to a consensus on seven key areas: Death must be diagnosed on clinical standard based on direct, measurable observation or examination of the patient; physiological events of halting of circulatory and neurological functions leading to death were developed to prove the critical events occurring in a catastrophic injury or illness; clinical tests that satisfy the minimum clinical standard for the death determination were defined for both the neurological and the circulatory sequences; preconditions and confounding situations may impede or invalidate death diagnosis [1]; certain ancillary and/or complementary lab tests might be beneficial in situations where clinical testing cannot be performed or if confounding or special conditions present. Also, the drawback of using some of these tests is acknowledged and further research is recommended to identify the reliability of those tests; a precise terminology regarding death was reviewed and finalized in order to improve clarity in discussions and debate on death determination; the fundamental to define human death should be on measurable biomedical standards and authenticate movement away from anatomically based terms, brain death, or cardiac death misleading to imply the death of that organ. Priority had been placed on the stoppage of neurological or circulatory function and the predominance of brain function for determination of death [1].

The forum came to a consensus on an operational (practical and concrete) definition of human death based on measurable and observable biomedical standards that "Death occurs when there is permanent loss of capacity for consciousness and irreversible loss of all brainstem functions." This might result from permanent stoppage of circulation and/or after catastrophic brain injury. The "permanent" refers to loss of function that cannot resume automatically and will not be returned through intervention. Death is a single phenomenon founded on stoppage of brain function (loss of capacity for consciousness and brainstem reflexes) with two mechanisms to reach that point: permanent absence of circulation or subsequent to a catastrophic brain injury—two entrances, one exit. It is understood that the overwhelming majority of death determination in the world occurs after the stoppage of circulation and usually occurs external to health care settings. In some regions, the dead donation practices include re-establishing circulation (CPR, extracorporeal organ support) following death for the preservation of organs. Future research will enrich this issue for the clarity that constitutes re-establishing circulation, physiologically meaningful circulation, circulation versus oxygenation, and distinctions between organ targeted, regional, and whole-body circulation [1, 64].

#### **6. Variation in death determination criteria in the Asia Pacific**

During the 50 years since the publication of reports on the determination of death by neurologic criteria by Harvard University and the WMA (Sydney declaration) in 1968, brain death/death on neurological criteria (BD/DNC) protocols have been developed in many countries around the world. However, some countries still do not have medical standards for BD/DNC, and there is also international and intranational variability between the protocols that do exist [65–68].

Discrepancies were noted in the studies by Wijdicks, Wahlster et al., and Chua et al. between protocols in this region in the criteria used for diagnosis of BD/DNC. Nonetheless, these studies were all limited reviews, though they addressed a number of examiners, observation time, the time between examinations, concordance/ discordance with AAN—brain death/death by neurological criteria practice parameters, target value and methods of apnea testing, and requirement for ancillary testing. They did not explore the more distinct aspects of BD/DNC protocols, such as the technique used to rule out the effect of drugs on the evaluation, minimum temperature and blood pressure for an evaluation to be performed, a technique used to assess each component of the examination and findings of BD/DNC, preparation for rationale to discard apnea testing, accepted ancillary tests, need for communication with a person's family, time of death, and stopping of organ support [68]. The existence of a protocol in a given country is dependent on acceptance of BD/DNC as death, access to resources (neurosciences/critical care experts), the presence of a transplant network, and local laws. Religious beliefs markedly influence the acceptance of BD/DNC as death. Although religious views in these countries are distinct from those in the rest of the world, the diversity of political, economic, legal, social, and religious climates throughout the region mirrors that globally [65–68].

A review by Lewisa et al. in 2020 was published in a clinical neurology journal to find out the similarities and differences in the official protocols for the determination of death in Asia Pacific countries (57 of 197 UN) and concluded that protocols for conducting a BD/DNC determination vary markedly. In their report, only 24 of the 37 countries had brain death protocols (69%), but vary in definition such as whole-brain death and brain stem death; a number of examinations vary from single to double, separated by 6–48 hours; and the prerequisites, clinical examination, apnea testing procedure, and indications for/selection of ancillary tests varied. But agreed on that the damage to be irreversible or be permanent, all function/ all activities are to be absent before declaring BD/DNC. Also, it is emphasized to harmonize protocols both within this region and worldwide [65–68].

*Determination of Death: Ethical and Biomedical Update with International Consensus DOI: http://dx.doi.org/10.5772/intechopen.100604*

#### **7. Practical guidance for the determination of brain death**

Traditionally, death occurs with the confirmation of irreversible cessation of cardiorespiratory function [3, 53–58]. The use of artificial maintenance of life support and organ transplant leads to introduce a new criterion of death determination of permanently nonfunctioning brain, called irreversible coma equated to brain death. In recent years, however, controversy has arisen about the clinical and ethical validity of the neurological standard. **WHO** in 2014 formulated up-to-date update of minimum determination of death criteria for globally acceptable medical practice while respectful to diversities that achieve international consensus on the clinical criteria of determination of death to maintain public trust and promote ethical practices that respect fundamental rights of people and minimize philosophical, ethical, and biomedical debate in the human death. This guideline of clinical criteria on the determination of death suggested that there may be various ways to determine death but there is only one way of being dead, so the two classic algorithms, the brain death and circulatory death, merge into a single endpoint identified as death and should not imply that brain death and circulatory death are two separate phenomena [3]. This guideline also prepares a workable flowchart (**Figure 1**) of **cardiocirculatory algorithm** and **neurological algorithm** to declare the death. The algorithms identify the tests that are required to be conducted at each stage of the event, but they do not specify the details on how each test should be performed, which may be a free-standing documents that do not demand cross-references to other guidelines and be applied to both adults and children, and finally, a checklist is developed to facilitate the implementation of the different components stated in the algorithms [3]. This guideline provides acceptable clinical criteria of medical practice for the determination of death and earn international consensus on death debate but did not mention the detail of the clinical examination [3]. Harvard report describes the clinical criteria, and AAN guidelines on clinical criteria on neurological standard had already been accepted globally.

AAN clinical criteria on the determination of brain death [53–56] can be considered to consist of four steps: Prerequisites, Neurological assessment (coma, absence of brain stain reflex, apnea), Ancillary test, and Documentation.

I.Prerequisites for clinical criteria of brain death determination.

A. Establish permanent and predicted explanation of coma:


**Figure 1.** *Source: Ref. [3].*

B. Ensure normal core temperature.

Raise the body temperature and to sustain a normal or near-normal temperature (36°C) use a warming blanket. To prevent delaying an increase in PaCO2, normal or near-normal core temperature is preferred during the apnea test.


#### A. Coma:

• Profound loss of consciousness with no response to any stimuli. No evidence of responsiveness. No motor response on noxious stimuli other than spinally mediated reflexes.

*Determination of Death: Ethical and Biomedical Update with International Consensus DOI: http://dx.doi.org/10.5772/intechopen.100604*

#### B. Absence of brainstem reflexes:


Absence of a breathing drive is tested with a CO2 challenge. Usually, a rise in PaCO2 above normal levels is the typical practice but requires preparation before the test.

Prerequisites for apnea test: (1) Normotension, (2) Normothermia, (3) Euvolemia, (4) Eucapnia (PaCO2 35–45 mm Hg), (5) Lack of hypoxia, and (6) No prior evidence of CO2 retention (COPD, excessive obesity).

#### Procedure:


III.Supportive tests to diagnose brain death.

The ancillary tests such as EEG, cerebral angiography, nuclear scan, TCD, CTA, and MRI/MRA are at present used for adults in clinical practice. Three tests may be preferred such as EEG, nuclear scan, or cerebral angiogram, as the most hospital has the logistic to perform and interpret. The supportive tests can be done when there is no scope for apnea test or uncertainty exists. The ancillary tests are usually practiced to shorten the duration of the observation period. The interpretation of each of these tests requires expertise. In adults, ancillary tests are not needed for the clinical diagnosis of brain death and cannot replace a neurologic examination.

IV.Documentation of the time of death.

The moment of brain death must be documented in medical records and is the time the arterial PCO2 reached the target value. But in patients where the apnea test is discarded, the time of death is when the ancillary test has been officially interpreted. A checklist is filled out, signed, and dated.

#### **8. Conclusions**

For the millennia, the human has fought with the concept and criteria of and the line between life and death continues to be debated. The profound changes

#### *Determination of Death: Ethical and Biomedical Update with International Consensus DOI: http://dx.doi.org/10.5772/intechopen.100604*

caused by life-sustaining technology and transplantation continue to challenge our notions of life and death. The cardiopulmonary approach is an age-old practice for the determination of death that ensures social acceptance without any debate. The public is also used to rely on the somatic standard for criteria of death such as cooling of the body, absence of breath, loss of consciousness, rigor mortis, putrefaction, and so on.

Despite scientific progress in the last few decades, there remain big variations in the diagnosis criteria applied in each country with legal regulations resulting in misunderstandings among the public and health care professionals. However, the Harvard committee in 1968 develops a set of criteria of the permanently nonfunctioning brain, called irreversible coma equated to brain death. On the same date, the WMA declared a guideline for the determination of death known as the *Sydney declaration*. These two landmarks' innovations change our notions for researching a new challenge in death. The addition of neurological criteria of death to cardiorespiratory criteria of death was a paradigm shift that evolved when patients with acute brain injury could be resuscitated in medical facilities. Brain death, defined as the irreversible cessation of all brain activities, has been included in the medical and legal definition of death for nearly 60 years.

The global philosophical, ethical, legal, and biomedical controversies of determining death due to life support, organ supports, and organ transplantation issues console us in the historic report published (1981) by President commission for the study of ethical problems in medicine and behavioral research, *defining death* that a person is dead, who has sustained either *irreversible stoppage of circulatory and respiratory functions*, or *irreversible cessation of all functions of the entire brain, including the brain stem*. The death determination must be made in accordance with the accepted medical standards [3]. Since then, the neurological standard has been accepted as one of two valid standards for determining death and has been adopted legally in many countries throughout the world. The other accepted standard is the older, traditional cardiopulmonary standard. One of these two valid standards was followed by UDDA legislation for legal criteria of determination of death. President council of bioethics (2008) also reconfirm this definition of death and controlled the DDR rule for organ transplantation purposes. They accept controlled DCD for organ transplantation purposes.

WHO in 2014 published clinical criteria on the determination of death, mentioning various ways to determine death but there is only one way of being dead, so the two classic algorithms of brain death and circulatory death merge into a single endpoint identified as death and should not imply that brain death and circulatory death are two distinct phenomena [3]. They prepare a workable flowchart of cardiocirculatory algorithm and neurological algorithm to declare death. That guideline provides a minimum determination of death criteria to be acceptable for medical practice worldwide to achieve international consensus on clinical criteria to maintain public trust and promote ethical practices that respect fundamental rights of people and minimize philosophical, ethical, and biomedical debate in the human death. The WHO clinical criteria of 2014 did not mention the detail of clinical examination. Harvard report describes the clinical criteria and AAN guidelines on clinical criteria already accepted globally.

American Association of Neurology (AAN) in 2019 validated that brain death is the irreversible loss of all functions of the entire brain and is also equivalent to circulatory death. The testing methods of brain death take into account the age-related anatomical and physiological differences between neonates, infants, and children. Parents and other family members of children undergoing brain death testing may require close attention and additional support [58, 59].

### **9. Further reading**


### **Acknowledgements**

All praise to Almighty to bless me with good health to complete this chapter. Acknowledge to all staff of the Forensic Medicine department of IMC and my family member for their sincere cooperation. Special thanks to Prof. Sharfuddin Ahmed, VC of BSMMU for encouraging me to complete. Also thanks to Dr. Ferdausi Rahman for her review of some portion of scripts.

### **Authors' contributions**

Prof. Md Shah Alam developed the conception and design of the article and drafted the manuscript, providing important intellectual content.

#### **Conflict of interest**

The authors declare no conflict of interest.

### **Ethical approval**

Not applicable.

#### **Abbreviations**


*Determination of Death: Ethical and Biomedical Update with International Consensus DOI: http://dx.doi.org/10.5772/intechopen.100604*


#### **Author details**

Md. Shah Alam Panna1,2,3

1 Department of Forensic Medicine, Bangabandhu Sheikh Mujib Medical University (BSMMU), Dhaka, Bangladesh

2 Department of Forensic Medicine and Toxicology, Ibrahim Medical College, Dhaka, Bangladesh

3 Department of Forensic Medicine and Toxicology, Sher-E-Bangla Medical College, Barishal, Bangladesh

\*Address all correspondence to: drpanna@yahoo.com

© 2021 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/ by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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#### **Chapter 3**

## Compassion Versus Care in Healthcare Institutions: What's the Difference?

*Una P. Canning*

#### **Abstract**

In February 2013, the Francis Report outlined what it described as 'systematic failings' at Mid Staffordshire NHS Foundation Trust resulting in the death and suffering of many patients through neglect (in the UK context, hospitals can apply to gain foundation trust status. Foundation trust hospitals are part of the National Health Service (NHS) but are not directed by central government and have greater freedom to decide the way services are delivered. They adhere to core NHS principles of free medical treatment based on need and not the ability to pay.) A lack of compassion, particularly among nursing staff, was identified as one of the contributing factors to poor care. The NHS was founded on the core value of compassion that today is one of six values all NHS staff are expected to demonstrate. Frequently invoked as a means to ensuring good patient care, it is a concept that is contested by a number of writers who argue that such moral emotions are not only unnecessary but dangerous. The purpose of this work is to explore the difference between compassion and care (but not medical treatment) in the context of the NHS. The paper draws on the work of Anca Gheaus, who argues there is a distinction to be made between the two and that while it is possible to be compassionate towards everybody, the ability to care, is limited to fewer people and is a more intense and engaged activity. Regarded as the founding myth of the NHS, the work also draws on the parable of the Good Samaritan to make the distinction between the two concepts more visible, and argues the roles played by the Good Samaritan and the innkeeper, remain relevant to the workings of today's healthcare system. It also reflects on the need for kindness within the system.

**Keywords:** Care, compassion, Francis Report, Good Samaritan, NHS

#### **1. Introduction**

In February 2013, the Francis Report [1] outlined what it described as 'systematic failings' at Mid Staffordshire NHS Foundation Trust (foundation trusts are still part of the National Health Service (NHS) but are not directed by central government and have greater freedom to decide the way services are delivered) [2]. These systematic failings resulted in the death and suffering of many patients through neglect. In looking to identify the causes of these failings, a lack of compassion particularly among nursing staff, was identified as one of the contributing factors. In his response to the Francis Report, the prime minister, David Cameron, recommended nurses 'be hired and promoted on the basis of having compassion as a vocation' and not just academic

qualification to 'ensure that it plays a part in every healthcare interaction [3]. Cameron's suggestion that nurses' pay should be made dependent on their ability to demonstrate compassion in their jobs, gives rise to what Anne Bradshaw [4] describes as 'a McDonald's – type nursing care rather than heartfelt care.' In Bradshaw's view [4], failures in the NHS cannot be attributed to failures in nursing care but is arguably the result of the rejection by a pluralistic society of 'Judaeo-Christian values' that no longer regards such values as relevant or valuable. In their absence, a utilitarian model of healthcare has emerged that is 'market-driven and bureaucratised' and is an approach that has overtaken the value of care [4]. Following an economic downturn in the 1970s ideas from economics started to have an impact on medicine. Economists such as Alan Maynard advanced a utilitarian argument that criticised healthcare delivery in the UK as an inefficient use of resources, claiming it was unethical because it deprived other patients of services [5].

According to Bradshaw [4] 'Judaeo-Christian virtues, such as compassion, […] used to play a significant, though often unstated part in medicine and nursing in the western world' but this moral framework came to be rejected by nursing leaders who 'were anxious to remove the quasi-religious base for care.' The change first occurred in the USA but later began to influence UK nursing that up until the 1970s saw generations of student nurses trained using the classic nursing textbook written by Evelyn Pearce [4]. In her writings, Pearce emphasised the importance of nurses developing 'a moral character' and the need to exercise 'kindness, compassion and unselfishness which contact with sick people demands.' [3] As a result of these changes, UK nurses entering training with a presumption of a moral framework akin to that emphasised by Pearce 'underwent a professional socialisation and doctrinal conversion that repudiated such values.' [4] Instead, nursing began to be influenced by contemporary views of care emerging from the USA that included the works of Carole Gilligan and Nell Noddings. Both these writers espoused a view of feminine morality that countered the Kantian view of rights and justice, and resisted the ethics of care being formalised into abstract principles [6]. In the case of Noddings, she regarded the moral impetus to care as:

*'An engrossed subjective experience and not a moral norm. It is neither generalizable nor universalizable and depends on an affirmative response in the cared-for. From this perspective, "compassion" is an emotional response dependent on reciprocation, and not a virtue to be cultivated as an aspect of individual character.' [4].*

For Bradshaw [4] writings on the 'feminine ethic of care' is problematic as it provides no 'moral basis for the nurse to help the unresponsive, indifferent or even hostile and unsympathetic stranger. Not normative, and derived from the feminine nature, it is problematic for the male nurse too.' Anca Gheaus [6] agrees and argues the ethics of care is not a women's morality but a universal morality and 'the ability to care well are things in which women and men can (and should) be socialised' and if conceived as an exclusively feminine morality, will only lead to 'exclusion, oppression and neglect.' Other criticisms by feminist writers against feminist moral reasoning in terms of care have also been raised. A typical worry about such an ethics of care is noted by Claudia Card:

*'Resting all of ethics on caring threatens to exclude as ethically insignificant our relationships with most people in the world because we do not know them, and we never will. Regarding as ethically insignificant our relationships with people remote from us is a major constituent of racism and xenophobia.' [7].*

In this work I intend to explore these two views in the context of healthcare. In doing so, I hope to signpost a way though these opposing views; that is, between

#### *Compassion Versus Care in Healthcare Institutions: What's the Difference? DOI: http://dx.doi.org/10.5772/intechopen.97860*

the view that moral emotions such as compassion are necessary for delivering good healthcare and those who oppose such views and argue compassion is irrelevant in healthcare settings because 'it is an engrossed, subjective experience.' To do so, I explore the concepts of compassion and care and rely on the work of Anca Gheaus [6] who argues that there is a distinction to be made between other regarding virtues such as compassion and that of care. In the work I also refer to the parable of the Good Samaritan and argue that the respective roles played by two of the key characters, the Samaritan and the innkeeper, are a good example of this distinction.

Today, compassion is included as one of six values in the NHS Constitution [8] and is frequently invoked as a means for ensuring good patient care. Despite its inclusion, it is a concept that is contested by a number of writers who argue such moral emotions are not only unnecessary but dangerous [3]. In the literature, care has defined in general terms as a disposition and activity of meeting needs [9] but according to Gheaus, although care is similar to other moral emotions such as compassion, it is a more intense and engaged activity [6]. Recounting the parable of the Good Samaritan - considered to be the prototype of the British welfare state - the paper reflects upon the respective roles played by the Samaritan and the innkeeper in the parable as a means to illuminating the difference between these two concepts. The paper proposes that the concept of care might be a more useful means of safeguarding good patient care because it involves the desire to actively help when possible whereas compassion is more of an attitude one may have towards people in general. The argument developed here references the findings of the Francis Report [1] and the failures in care identified at Mid Staffordshire NHS Foundation Trust. Obstacles to providing good care are discussed in the final sections of the paper.

#### **2. My brother's keeper**

In the 1970s the British Secretary of State for Health, Barbara Castle, stated that the NHS 'is the nearest thing to the embodiment of the Good Samaritan that we have in any aspect of our public policy.' [10] In 1970 Richard Titmuss published his study of British blood donors, *The Gift Relationship* and in it he describes how the universal impulse to help strangers was simply enacting a fundamental truth of human existence and 'to love oneself, one must love strangers.' [11] In Bradshaw's view [4] this specific understanding of care in nursing differs from contemporary understandings and in 'a modern supposedly secular and plural society' it is disingenuous to claim its values and says there is a need to acknowledge that new models of care have different underpinning values. The NHS Constitution currently emphasises six values that staff are expected to demonstrate as part of their work including: 'Working together for patients; compassion; respect and dignity; improving lives; commitment to quality of care; everyone counts.' [8] According to the Constitution, compassion is central to the care provided in the NHS and is achieved by:

*'Respond[ing] with humanity and kindness to each person's pain, distress, anxiety or need. We search for the things we can do, however small, to give comfort and relieve suffering. We find time for patients, their families and carers, as well as those we work alongside. We do not wait to be asked, because we care.' [8].*

Historically, the development of the compassionate character provided the nursing profession with its ethos until its rejection in the 1970s. Up until then, nurse training involved becoming kind and compassionate, as well as becoming technically competent with 'the character of the nurse considered just as important as the knowledge she possesses.' [4] But with the traditional system of nurse training

considered no longer acceptable, nursing leaders set the profession on 'an entirely new course.' [12] In 1986 the UK Central Council for Nursing, Midwifery and Health Visiting (UKCC) published proposals that saw the implementation of *Project 2000* and the traditional apprenticeship style of nurse training giving way to a model that saw nurses acquire student status. With these changes, concerns were raised that nursing had become too academic and had 'ditched its core vocation to care.' Nurses it was claimed, had become 'too posh to wash' and the bedpan - 'the enduring symbol' of traditional nursing was now being emptied by someone else [12].

In Bradshaw's view [4] the term 'care in nursing' has traditionally been understood as an axiom and is a normative moral practice of compassionate help for the stranger in need. Bradshaw believes this is the understanding the UK government, the Royal College of Nursing and the NHS Confederation appear to presuppose in their discussion of the subject and is a view underpinned by the parable of the Good Samaritan that has its origins in the Old Testament. In the ancient *Book of Leviticus*, Israelites are commanded to welcome strangers and told to: 'treat resident aliens as though they were native born and love them as yourself.' [13] In the New Testament the parable of the Good Samaritan also recalls this command. It recounts the story of a traveller attacked by bandits and left to die on the roadside and the response of the four characters who encounter the victim including the Samaritan (despised by the Jewish people), the priest (a privileged member of Jewish society), the Levite (a lawyer, inferior to the priest but still belonging to a privileged group in Jewish society) and the innkeeper (despised by Jews and Samaritans alike.) [10] Drawing on religious and racial tensions common among Jews and Samaritans at that time, the story tells of how two esteemed pillars of Jewish society (the priest and the Levite) refuse to help the victim as he lay gravely injured by the roadside because of fear of attack and also fear of being defiled through touching the victim. Instead, it is the Samaritan who comes to the victim's aid and as he dresses the victim's wounds, flouts laws about ritual impurity common among both Jews and Samaritans. During the course of the story, listeners are also told that the Samaritan was a seller of oil and wine, an occupation both Jews and Samaritans despised, as such traders were considered 'very shady people, indeed, even criminals.' [10] Because of this listeners would have been surprised at the Samaritan's actions and of his 'willingness to go to the margins of society in his ministry of healing [that] defined the depth of his compassion.' [10] The role played by the fourth character, the innkeeper, (a class of people generally considered to be thieves and robbers) adds a further unexpected twist to the story as Arbuckle explains:

*'The inn in the story was a den of thieves, and the head thief was the innkeeper, yet he was prepared to help the victim, for a price […] Knowing what to expect from the innkeeper, the Samaritan simply bribed him in order to guarantee that the patient would be looked after and kept alive. He left the innkeeper a certain amount but promised more when he returned.' [10].*

According to Arbuckle the Samaritan was a 'shrewd businessman' and as well as having the material goods to help the victim, he also had the relevant management skills as was evident in his dealings with the innkeeper. Alert to the weaknesses of human nature, the Samaritan bribed the innkeeper so he would care for the victim and is an example says Arbuckle, of the values of efficiency and excellence. For Arbuckle, there is a convergence between the values inherent in the Good Samaritan parable and the founding values of the welfare state in Britain and he identifies two kinds of values (final and instrumental) that are relevant to both:

*'Final, that is, meaning a desired end state, and […] instrumental, that is, those actions that are adequate or essential to achieve the desired end.' [10].*

*Compassion Versus Care in Healthcare Institutions: What's the Difference? DOI: http://dx.doi.org/10.5772/intechopen.97860*

#### **3. Reasoning from love to the moral inclusion of strangers**

In examining the relationship between compassion and care Bradshaw [4] suggests the word compassion is associated with religious belief, especially Christianity and that caring as an activity requires 'cultivating the virtue of compassion in the carer' that in the context of nursing, is acquired through training. On this view, compassion is understood as suffering together with another and is more than an emotion or feeling but a whole praxis that has 'a moral and intellectual component that is universalisable.' [4] For Bradshaw, compassion is not an abstract theoretical idea but is lived out in the practice of the carer - a view also held by Florence Nightingale.

But in the context of healthcare, Anna Smajdor [3] argues that such moral emotions are not only unnecessary but also dangerous because our capacity to love and feel compassion is so circumscribed that '[U]nless we regard healthcare professionals as saints, we cannot demand that they guarantee an unlimited flow of compassion for each patient' and that:

*'Medical professionals need to protect themselves as well as performing their medical duties, and if we demand compassion in addition to medical expertise and knowledge, we are setting our healthcare professionals up for failure.' [3].*

In Smajdor's view the terminology surrounding the word care is unhelpful because '[T]o care can be either to feel a certain way, or to carry out certain activities' and compassionate care is only really possible when, for example, we are a mother caring for her child or a wife for her husband. This kind of 'relational' care ethic is all very well when we are treating loved ones but as healthcare professionals do not routinely treat loved ones, it is dangerous and unfair relying on compassion as the motivation for ensuring essential tasks are carried out.

Anca Gheaus in her work, rejects the view that the relational aspect of care is a barrier to the moral inclusion of strangers and argues the relational nature of human beings has an epistemic role to play in defining the scope of human morality [6, 7]. Acknowledging that allowing personal relationships and emotions to be part of the argument that informs morality runs the risk of treating those unrelated to us unfairly, Gheaus argues it can still be a source of value in determining the proper scope of our morality as it is:

*'Imaginable, that […] intelligible, emotional connections (which I call here 'love') based on the universal need people have for each other, can do the work left unfinished by the argument from actual connectedness.' [7].*

Defining love as 'personal' and directed towards a particular individual Gheaus argues this type of love can form the basis of our ability to respond morally to strangers. It is an argument she claims that is not dissimilar to religious love for humanity (which is universal and impartial) as it too, has sometimes 'been considered to facilitate an ability to see the equal worth of all human beings.' [7] By invoking people's relationships and need for each other, Gheaus argues we can engage in moral reasoning because of the relational fact that we are creatures who need to love others and also need others' love.' And although we relate differently to loved ones compared to strangers, she argues we should be morally concerned for strangers because they are 'at least potentially – *somebody's* loved ones.' [7].

In reasoning from love to morality Gheaus [7] draws on feminist ethics, including the works of Sara Ruddick (1989) [14] and Eva Kittay (1999) [15] both of whom 'indicate a way of reaching universalising moral conclusions from the existence of particular, personal bonds of love.' She also draws on the work of the philosopher

Raimond Gaita [16] and his book *A Common Humanity* (2000) where he invites us to think of how our commitments to those we love, are relevant for the obligations we have towards other people in general. In his work, Gaita argues that precisely because we are able to love some individual human beings, we are able to gain a full understanding of the moral value of people in general and he illustrates his point with the story of a nun's visit to the wards of a psychiatric hospital where he worked for a period in the 1960s. In the story, Gaita describes the moral responses of the doctors and nurses looking after the patients as diverse, ranging from brutal to kind. He also tells of how despite the expression of compassion by some of the regular staff, it was only the visiting nun that related to the psychiatric patients as equals and in doing so, acknowledged their full humanity. This came as a revelation to Gaita, who believed the nun's attitude was made possible by her love for the patients – in this case universal, Christian or saintly love. But once revealed Gaita believed this love was independent of the nun's religious background and accessible also to those who do not hold metaphysical beliefs.

Agreeing with Gaita that love has an epistemic role to play in our morality, Gheaus however considers the account of the nun's revelatory love as problematic as a means to universal moral inclusion because it is potentially unsustainable. Instead, Gheaus argues that an example of secular love, that is personal love directed at a particular individual, would be more convincing because the nun's love can best be understood as impartial and unconditional and therefore more sustainable as a general attitude than it would be coming from any of the nurses or doctors involved in caring for the patients. For Gheaus, it is not mere coincidence that the daily hands on care for the patients was done by the non-compassionate nurses, and the ongoing responsibility borne by the compassionate but condescending doctors while the nun was just a passer-by. Gheaus' argument here is that in the context of ordinary, everyday challenges, striving to maintain unconditional love is difficult, if at all humanly possible, and impartial love, disentangled from knowledge of the particularities of the beloved, is more easily amenable to being unconditional. On this view, an example of ordinary, partial and therefore more fragile love would be more convincing for two reasons:

*'First because this is the love which most of us experience. And second, because as already noted, this ordinary love unlike impartial and unconditional Christian love is not as such a moral emotion.' [7].*

A further feature identified by Gheaus of personal, partial love that is constitutive of our human morality, is that of beings 'who need each other', and whose 'moral agency is in part determined by our need to be in (loving) relationships.

In her discussion of human need, Onora O'Neill argues that utilitarian thinking assigns no special importance to human need and leaves vital dilemmas unclarified and unresolved, despite the fact that all human action is predicated on 'a plurality of mutually vulnerable beings who never achieve more than limited and specific forms of rationality, independence and self-sufficiency.' [17] Developing an abstract Kantian argument that rejects 'principled indifference to others' she argues for a theory of obligations similar to that found in Christian and other religious traditions and also 'present in the idiom of much of our social life.' [18] In contrast to a utilitarian perspective that endorses the pursuit of happiness without specific concern to meet needs, or a human rights perspective that often fails to allocate obligations to help those in need, O'Neill proposes an obligations theory that is premised on not 'bas[ing] our lives on principles that are indifferent to, or neglectful of others.' [18] On this view 'the fact that we cannot help everyone only shows that we have no obligation to help everyone and not that we have no obligation to help anyone.' [18]

#### *Compassion Versus Care in Healthcare Institutions: What's the Difference? DOI: http://dx.doi.org/10.5772/intechopen.97860*

According to O'Neill 'ethical traditions that extol universal benevolence, love for all mankind, or concern for all' are misleading because nobody can provide help or care for all others and therefore the rejection of indifference cannot be expressed in action for all others [18]. As help or care for all others is not possible, the rejection of indifference is demonstrated through the provision of '*some* care to sustain *some* others in *some* ways' [18] that is not trivial or sporadic and sustains at least some of their capacities and capabilities.

Not contingent on any special relationship, these obligations are called *imperfect obligations* because concern for all is not possible and therefore selective and 'the pattern and occasions of virtuous action may leave much open for judgement.' [18] Regarded as a moral duty, *imperfect obligations* cannot be claimed as a matter of right and are distinct from *perfect obligations* which gives the right to one party to take legal action against a party that has failed to perform a particular duty. In O'Neill's view, contemporary liberal thinking marginalises imperfect obligations and excludes all but justice from their ethical perspective and takes pride in being 'agnostic about the good of man.' [17] If we want to establish intellectually robust norms in health, O'Neill suggests it would be preferable to start from a systematic account of obligations, rather than of rights because it makes it easier to spot incoherence in the system [17].

#### **4. Compassion versus care: what's the difference?**

For Gheaus the terms love and care partially overlap. In the literature 'care' has been defined in general terms as a disposition and activity of meeting needs [9]. In her analysis Gheaus [6] argues that when thinking of the word care there are several understandings of the word in the literature including: care as a type of work, care that signifies a special emotional bond between persons, and care as a virtue – a type of moral motivation as in 'caring about.' Distinguishing between several possible concepts of care in the literature and their relationship to each other, Gheaus [6] argues the different concepts do not necessarily exclude each other but that each presupposes the others to some extent. Rather than attempt to reduce the various meanings of the word found in the literature to a single concept, Gheaus [6] argues for a multi-layered understanding of care and proposes that we can best understand care and its moral significance, by connecting it to the idea of needs. The adoption of a multi-layered understanding that is connected to the idea of needs, makes it possible in Gheaus' view, to identify different contexts of care such as healthcare 'that are not based on care as an emotion close to love' but depending on context, can enable us to care for distant others [without] any emotional connection towards those one is embracing.' [6] In the many different senses in which the word care is used in the feminist literature, Gheaus argues the concept of need is a common feature and that:

*'The most widespread way of understanding care is responsiveness to the needs of concrete individuals. The moral value of care is intimately linked to the fact that human beings are most of the time not self-sufficient, invulnerable creatures, but beings who depend on others for survival and thriving.' [6].*

For Gheaus meeting the needs of others necessitates individuals being treated in a personal way and this requires an interest in, and knowledge of, the particular circumstances of each person.

In the literature discussions about care have mainly been associated with compassion and benevolence. While noting how similar care is to other moral

#### *Bioethical Issues in Healthcare*

emotions, authors have rarely provided an exact analysis of how they differ and according to Gheaus [6] this has precluded a full understanding of the distinctiveness of care. In attempting to delineate the boundaries between care and other moral emotions, Gheaus [6] argues that the particular meaning one attaches to the word means it can also come close to other moral emotions such as benevolence, compassion, empathy but that the scope of care is wider and involves acting on behalf of others. For Gheaus care is distinct from compassion or pity because one can be compassionate towards everybody but to qualify as care, the desire to actively help must also be present:

*'Compared with pity, compassion or charity, the scope of care is wider. Both pity and compassion are mainly about concern with people's suffering and desire that it should be alleviated. But […] alleviating harm is only part of the work of care. Care is as much concerned with fostering growth and happiness; it is as appropriate a reaction to cheerful situations as to distressful ones. An additional point is that one may be called compassionate or feel pity without necessarily getting too actively involved with the suffering. By contrast, to care for someone who suffers (or rejoices) requires a higher degree of commitment than that of compassion. To qualify as "care", an attitude must involve at least the desire to actively help when possible.' [6].*

Distinguishing care from altruistic motives that typically targets strangers, she develops the argument further by taking the example of benevolence:

*'One can be truly benevolent without being committed to act extensively on behalf of those who are the objects of benevolence. Even more important, benevolence is a much less partial disposition than care. One can perhaps be benevolent towards everybody or at least towards everybody one interacts with […] but care is more intense and engaged [and] our capacity to give it is limited to fewer people.' [6].*

In Arbuckles [10] analysis of the Good Samaritan parable, the distinction between the two concepts can be readily identified. Motivated by compassion for the victim, the Samaritan assists him at the roadside but is unable to commit to looking after the victim's long-term needs because of business commitments: unable to stay and provide the necessary care, he uses the resources at his disposal (money) to pay someone else to do the caring. That 'someone else' was the innkeeper who agreed to actively help the victim for money and in return, was rewarded for his efforts with the promise of further payment on the Samaritan's return.

In thinking of the relevance of the Good Samaritan parable to contemporary healthcare, the role of abstraction is important for without abstraction 'there is no communication with those of differing cultures […] in short there is nothing that is universally relevant.' [17] The move to abstraction in liberal thinking is, in Onora O'Neill's view, a result of the absence of homogeneous community and culture. Abstraction has been criticised for several reasons, including the view that it idealises human agency and assumes 'various superhuman capacities such as complete transitively ordered preferences, complete knowledge of the options available and their outcomes, and unwavering powers of calculation.' [17] Other criticisms of abstraction are that it omits important or material aspects of the matter at hand. But in advancing an abstract Kantian argument that rejects 'principled indifference to others' O'Neill argues for a 'realistic account of circumstances' and says defenders of abstract rights 'have to say something about the way in which obligations […] should be allocated to individuals, office holders and institutions.' [17] According to O'Neill a right to healthcare requires counterpart duties that must be carried out by specified persons or institutions

that have the relevant competency and capabilities to carry out those duties [17]. Alongside the right to healthcare, individuals and institutions can have obligations but fulfilling or discharging those obligations, necessitates individuals and institutions having adequate capabilities [17].

#### **5. Caring relationships versus institutional care**

In Gheaus' view the difference between care as work and care as relationship is mainly one of focus and if we introduce a strong emotional link as the basis of care 'we are no longer able to account for some paradigmatic cases of care-giving.' [6] Rather than looking at all types of caring to see what common skills they involve, Gheaus [6] suggests proceeding the other way round and defining the activity of caring 'via the disposition of care and its employment.' Advocating for a multilayered understanding of care, Gheaus [6] suggests that in thinking of care work within the family or within institutions, it is not necessary to say that one type of care is more valuable than another as it is reasonable to think 'that people need various types of caring relationships during life.' Institutional care may be valuable in itself if it is a complement to the loving care one gets in intimate relationships and the caregivers are enabled to meet the needs well. On this view, care received in institutions should not be seen as a replacement to intimate relationships but as complementary and valuable in their own right:

*'As long as it is done well, we will definitely want to call their work "care" and there is no contradiction in doing so, since the criterion for judging institutions need not be identical to those for judging people.' [6].*

Clarifying the relationship between care directed towards a particular individual involved in a personal relationship and institutional care, Gheaus argues that when the work of caring for someone is not directly motivated by the personal concern of the care-giver, care is still the moral reason behind the respective practice (for example in hospitals) but the motivation may be different and that:

*'At its best, the work of care is concerned with wanting to meet someone's needs but in caring for strangers, the motivations may be different, and can be about money or a desire to keep jobs.' [6].*

In the following paragraphs, and in Reference to the findings of the Francis Report, and the failings of care at Mid Staffordshire NHS Foundation Trust, I hope to demonstrate how compassion, understood here as an attitude one may have towards people in general, is different to the work of care because it involves acting on behalf of others and is also limited to fewer people.

#### **6. Mid Staffordshire NHS foundation trust: the findings of the Francis Report**

In the ethics of care, needs play a central role but arriving at a precise specification of what counts as needs is particularly challenging when thinking of caregiving institutions [6]. In a series of articles in *The Lancet* the dominance of the biomedical model was identified as one of the major obstacles to giving the 'right care' to patients in acute hospitals [19]. Medics are educated according to the principles of biomedicine and value acute diseases offering the prospect of successful

treatment with medical specialities demonstrating the shortest length of stay having the greatest prestige. But a growing ageing population, presenting with complex medical needs, means that older people are the major users of hospital services and often accused of 'bed blocking.' This is a term mainly used in cases where older people are deemed to be 'medically fit' but waiting for home care or alternative accommodation in a residential or nursing home setting. Nurses occupy a liminal professional space within traditional, biomedical institutions (especially hospitals) and for some, the emphasis on caring is detrimental to the profession. Paley, for example, sees care being used as a paradigm to attack the medical-scientific model of nursing that prevents its real development [4].

To be admitted to an acute hospital bed, a patient must first be suspected of having an underlying medical condition requiring treatment such as heart failure, hip replacement, pancreatitis to name but a few. In hospital settings, diagnosis and treatment are normally the responsibility of the individual physician and patients requiring medical treatment may be prescribed a range of treatments from drug therapy to surgical procedure, or both. Medical treatment is increasingly premised on evidence-based medicine (EBM), a method that typically tests traditional biomedical interventions such as drugs, devices and procedures using randomised controlled trials (RCTs) to arrive at the soundest evidence of a treatment's efficacy. Working alongside physicians treating patients, nurses use their clinical expertise and monitor a patient's progress through constant observation of vital signs such as blood pressure, bodily temperature, and administering medicines etc and assisting with basic nursing care where needed.

In the case of Mid Staffordshire NHS Foundation Trust, a distressing feature of the poor care identified by the Public Inquiry was the 'plight of patients calling for water, languishing in soiled bedding or dying neglected and confused.' [3] In her evidence to the Public Inquiry, the former Chair of Mid Staffs, Toni Brisby claimed the hospital was no different to any other and that:

*'A reaction that I've had from quite a lot of people within the NHS, which is that actually that's the sort of thing that goes on virtually in all hospitals, and there but for the grace of God go we. Now, I'm not saying that to defend poor care, […] but I am saying that Stafford is not a peculiar hospital.' [1].*

Concerns about nursing care highlighted by the Public Inquiry identified failures in clinical care such as completing charts, weighing patients, checking intravenous infusions, dressing wounds, and avoiding pressure sores: in several instances, patients were not helped to take their medication. Other failures involved those associated with basic nursing care including:

*'…such matters as the supply of and help with food and drink, a timely response to call bells and buzzers, attention to the hygiene needs of patients, and respecting the dignity and privacy of patients [1].*

In an article responding to the findings of the Francis Report, Anna Smajdor dismisses the claim that a lack of compassion particularly among nursing staff is to blame for poor care and argues the root cause of poor care is a lack of time and a lack of resources in the NHS but fails to specify where the scarcity lies. On Smajdor's view compassion is not necessary when caring for patients and one can:

*'[R]emove an appendix without caring about the person from whose body it is taken, empty a bedpan without caring about the patient who filled it, or provide food without caring about the person who will eat it.' [3].*

#### *Compassion Versus Care in Healthcare Institutions: What's the Difference? DOI: http://dx.doi.org/10.5772/intechopen.97860*

Conflating different types of healthcare tasks (removing an appendix versus emptying a bedpan) and the roles performed by different healthcare professionals (surgeons compared to nurses or healthcare assistants) Smajdor dismisses the need for compassion and suggests 'reminders, routines, and checklists,' can do the same job as compassion [3].

The theory of obligations advocated by Onora O'Neill suggests that those who reject 'indifference and neglect' must meet demanding standards: 'but what those standards demand is inevitably variable and selective.' [18] In the context of a ward setting, patients have many different needs, including medical and surgical needs (requiring many years of speciality training) and needs associated with basic nursing care, such as wiping bottoms, emptying bedpans, changing soiled bedsheets, or dressing seeping bed sores. The tasks associated with these latter needs are usually performed by a nurse or healthcare assistant and conflating different types of healthcare needs and the roles performed by different healthcare professionals, fails to do justice to patient suffering and of the harms inflicted through neglect, that was so much a feature of Mid Staffs NHS Foundation Trust.

Furthermore, Smajdor's analysis fails to recognise a key concept in healthcare which is the prevention of suffering and harm. The current COVID-19 pandemic has triggered debate about the right for all to access healthcare and the scarcity of resources: Mannelli [20] argues that in the present crisis 'as in other circumstances in which there is a scarcity of resources, it is unfortunately not possible to avoid harm at all. The effort is to reduce it.' At Mid Staffs such efforts were not always apparent, as patients were denied water not because water was scarce, but because ill and frail patients were neglected. Care work or 'basic' nursing as it is often referred to, is integral to the work of the nurse and if a nurse or health care assistant fails to respond to the patient who says: 'I need the toilet now' or: 'I cannot hold a knife or fork but can chew and swallow' then it is hard to see how the distressing situation of Mid Staffs can be avoided in the future.

A shift in healthcare away from one in which the doctor and patient knew each other, to healthcare provided in complex institutional settings, necessitated a refocus on medical ethics. In an effort to avoid paternalism and to protect patients, more formal relationships and procedures were instigated between the two [17]. This was achieved partly through the mechanism of *informed consent* that aimed to avoid imposing medical treatment or action on patients without being fully informed. But in O'Neill's view, there are other ethically important concerns in healthcare such as 'unnecessary surgery, clinical negligence, or unwarranted risky treatment' aside from informed consent and most ethical positions do not consider informed consent as sufficient for respecting patient autonomy:

*'Contemporary accounts of autonomy have lost touch with their Kantian origins in which the links between autonomy and respect for persons are well argued; most reduce autonomy to some form of individual independence and show little about its ethical importance.' [21].*

Other emerging trends in healthcare include the concept of *patient-centred care* in which the ideals of independence and self-care are promulgated. The phrase 'patient-centred care' originated in the United States but has gained prominence in the UK [22]. Linked to the shift in healthcare from paternalism to autonomy, patient-centre care (or person-centred care as it is more frequently known) is intended to represent the shifting of power and control from the healthcare provider or practitioner, to the patient. With patient autonomy taking precedence over paternalism or 'best interests' Jonathan Evans argues that advocating independence for patients who are dependent upon others for help may be worthless without the necessary power needed to secure the care and attention they require [23].

Up until the late 1970s, Anne Bradshaw [4] notes that nearly every survey into nursing care contained unsolicited comments on the kindness and helpfulness of nursing staff but that patient perceptions changed in the 1990s. Under Tony Blair's government, attempts at measuring compassion using patient surveys, was proposed by then Secretary of State for Health, Alan Johnson who said patients had a right to be treated with 'dignity, respect and compassion' – a move that was supported by the Royal College of Nursing [4]. Dismissive of such moves Anne Bradshaw [4] claims it is inherently false to measure and reward the appearance of compassionate care (such as encouraging nurses in the art of smiling or the saying of warm words) for the purposes of data collection. For Anna Smajdor the 'insidious' need to measure all we touch, including compassion, is part of a broader trend that is in awe of the evidence-based structure of our health service:

*'Some – perhaps much – of the suffering experienced by patients and healthcare professionals in today's healthcare systems, is the result of a clash between incompatible values. On one side, there is a scientistic ideology which holds that everything which is meaningful must be measurable and controllable. On the other, there is the conviction that some of the most valuable things in life are intrinsically so; […] It is not compassion per se, that is at issue here, but a far broader and more insidious need to measure all we touch.' [3].*

Following concerns about variability in medical practice and rising costs, efforts were made to make such systems more quantifiable by introducing a range of initiatives including compulsory clinical audit, quality assurance (QA) and evidence-based medicine (EBM.) [5, 19] The Department of Health in Britain in 1994 embraced the notion of knowledge-based medicine and assumed that science could identify non-effective treatments or procedures thereby creating uniformity in the delivery of services to various patients [5]. This 'scientistic ideology' according to Smajdor has contributed to much of the suffering experienced by today's patients and healthcare staff alike and has stifled our ability to care. But given evidencebased medicine is primarily concerned with the effectiveness of drugs, devices and procedures and not tasks associated with assisting patients on and off the commode, or helping with food and drink, Smajdor's claim is somewhat puzzling. This is particularly so as such tasks are typically exempt from the scientific impulses driving evidence-based medicine. And, as effectiveness and outcomes represent values and not scientific universals [5], outcomes that may be seen as good from the doctor's perspective (the patient is medically fit to go home) are not necessarily good from the patient's perspective (the medically fit patient awaiting discharge is left to languish in soiled bedding).

Furthermore, Smajdor's suggestion that 'reminders, routines, and checklists,' can do the job of compassion may only further inhibit 'human interaction and thinking, lead[ing] to an increasingly rationalised world.' [24] Such tools may be superfluous to the basic task at hand and potentially damaging to its performance. Plus, the utility of such tools when compared to the potent 'reminder' of a patient calling out for help, or the pungency of a bedpan that needs emptying remains questionable. The NHS is a much criticised and much loved organisation that some argue has taken the place of religion [25]. Misdiagnosing all that ails the NHS, coupled with gratuitous sentimentality can only prove fatal to its proper functioning in the long run.

### **7. Care of the self**

As the capacity to care and respond to an individual's needs is one of the defining characteristics of being human, losing our ability to care can be harmful. Caring *about* something constitutes a need in itself as it can bring meaning into our lives because life perceived to be meaningless can lead to depression [6]. In the Francis Report there were many accounts in which healthcare professionals employed at Mid Staffs, expressed their distress and feelings of depression and helplessness at finding their concerns dismissed [3]. In looking to identify the causes of the Trust's failings, the Public Inquiry investigated the effectiveness of the Trust's whistleblowing policies that were 'intended to empower employees to raise concerns.' From its review of the Trust's actions in the case of an A&E nurse, the Inquiry concluded Mid Staffs did not follow its stated whistleblowing policy of supporting and protecting those who raised concerns:

*'Ms Donnelly was offered no adequate support. She had to endure harassment from colleagues and eventually left for other employment. Clearly such treatment was likely to deter others from following her example and she was aware of colleagues on whom this had an effect.' [1].*

It was also revealed that Ms. Donnelly was failed by her professional organisation, the Royal College of Nursing (RCN). The Inquiry also noted that doctors who sought to raise concerns fared little better than nurses. In evidence given to the Inquiry by Dr. Pradip Singh, the doctor admitted he was not 'brave enough.' He told the Inquiry raising concerns would have had a detrimental effect on his health and he also feared losing his job: 'I would have then ended up becoming either a stroke or a heart attack, and being on the road.' [1].

One difficulty with care-giving institutions is the number of people needing care at any one time. This can have implications for the quality of care and can lead to the overburdening of care-givers. Unlike a utilitarian or Kantian perspective on morality, which states that one must not place the requirements of self above the requirements of others, the ethics of care makes allowances for the better care of the self and recognises the moral importance of ensuring one's own needs are met [6]. This is a view also articulated by Mary Wollstonecraft; writing in the eighteenth century on women's human rights, she advised her female readership - often deprived of opportunities for self-development - that their 'first duty is to themselves as rational creatures.' [26] In conversation with a former psychiatric nurse, she described how she was distressed at the manner in which patients were treated on the ward she worked, and explained she liked to treat patients in the same way she would treat a relative, or how she herself would like to be treated. On referral to a counsellor (provided by her employer) she was told it was unrealistic to expect her colleagues to care for patients in the same way she did, and having such expectations, would only be detrimental to her own wellbeing. She has since left the profession and now does odd jobs to earn a living.

At its best, the work of care is concerned with wanting to meet someone's needs and with compassion one of the six values of the NHS Constitution, staff are expected to demonstrate compassion and kindness as part of their work. Staff placed under unremitting pressure can however become estranged from each other and those 'coerced by circumstances become coercers.' [11] Michael West writing for the NHS Leadership Academy maintains NHS leaders need to embody the virtue of compassion because in an environment that is:

*'directive, controlling, punitive, threatening or uncaring, […] compassion dries up and […] bullying becomes dominant [27].*

#### *Bioethical Issues in Healthcare*

And in the context of care-giving institutions, care-givers need to be able to rely on people and institutional structures to support them because:

*'For those invested with institutional power, though the responses will be different from the requirements that apply to non-institutional interaction there is no reason to believe that a citizen who wishes to live in a caring society would not have any more reason to tolerate institutional abuse than the one who wishes to live in a just society.' [6].*

The NHS Constitution lists compassion as one of six values that is central to the work of the organisation that is realised through the expression of humanity and kindness to both patients and fellow staff members. In their book *On Kindness*11, Phillips and Taylor write that the pleasures of kindness are fundamental to our sense of well-being, a view also shared by the Mental Health Foundation in the UK that chose kindness as its 2020 theme:

*'[kindness] Has the singular ability to unlock our shared humanity. Kindness strengthens relationships, develops communities and deepens solidarity. It is a cornerstone of our individual and collective health.' [22].*

But unkindness is now the norm in our society, according to Philips and Taylor and overcoming our current attitude towards kindness, requires a form of 'ordinary, unsentimental kindness' because:

*'Real kindness is not a magic trick, a conjuring away of every hateful or aggressive impulse in favour of a selfless dedication to others. It is an opening up to others that […] enlarges us and so gratifies our profoundly social natures.' [11].*

Following Freud and Winnicott, both Phillips and Taylor argue that sentimentality and nostalgia, and not hatred, are the enemies of kindness with too much kindness seen as a saboteur of fully formed independence. Gaita [28] agrees we often struggle against a disposition to sentimentality that prevents us from seeing things as they are, rather than as they appear:

*'When concepts such as sentimentality, pathos are causes of the false, they are psychological states that can cause thought to go astray more or less as tiredness, drunkenness, fearfulness or recklessness can.' [28].*

Seeing things as they are and not as they appear, requires a form of understanding in which head and heart are inseparably combined and says Gaita 'is neither a Kantian nor a Humean thought, but one which acknowledges what is important to both of these traditional oppositions.' [28].

#### **8. Conclusion**

Drawing on the parable of the Good Samaritan and the work of Anca Gheaus and the ethics of care, this paper has explored how the concepts of compassion and care differ. The distinctiveness of care according to Gheaus lies in the desire to actively help when possible and is a more intense and engaged activity compared to compassion. In the parable of the Good Samaritan, the difference between compassion and care is best illustrated by the differing levels of involvement of the Samaritan who had the resources to pay someone to do the caring, and the

#### *Compassion Versus Care in Healthcare Institutions: What's the Difference? DOI: http://dx.doi.org/10.5772/intechopen.97860*

innkeeper who agreed to care for the victim in return for money. As the work of care is concerned with wanting to meet someone's needs, the motives for caring may be different depending on context, and for those in care-giving institutions, their relationship with patients remains largely instrumental and can be about money and staying employed. In extrapolating from the parable of the Good Samaritan to contemporary healthcare, the paper follows O'Neill and her arguments on the utility of abstraction and the need to take a realistic account of circumstances.

Bureaucratisation and rationalisation have been blamed for usurping the value of care with the traditional approach to care as 'my brother's keeper' falling apart in the face of such efforts. With utilitarianism now considered to be a major influencer in the practice of medicine, its influence has also seeped into UK nursing. Unlike compassion - here understood as an attitude one may have towards people in general - the work of care is concerned with wanting to meet someone's needs. The ethics of care is opposed to a utilitarian approach to care and argues for care to retain its special moral significance, a vivid sense of particular situations and concrete individuals is necessary.

In the context of healthcare, meeting the needs of concrete individuals, remains a challenge to the NHS. As care is a more intense and engaged activity according to the ethics of care, defining what counts as needs, and determining how such needs are met, particularly among patients who are most vulnerable, requires a form of thought in which head and heart are intertwined. The dangers to a healthcare system that encourages staff to rely on 'reminders, routines and checklists' rather than thinking and human interaction along with ordinary, unsentimental, everyday kindness, can only give cause for concern, and may do little to avoid the harms previously experienced by patients and staff at the Mid Staffordshire NHS Foundation Trust.

#### **Author details**

Una P. Canning London, UK

\*Address all correspondence to: u.canning1@gmail.com

© 2021 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/ by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

### **References**

[1] *Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry, Vol. 1; Analysis of Evidence and Lessons Learned.* https://assessets.publishing.service.gov. uk/government/uploads/system/uploads/ attachment\_data/file/279115/0898\_i.pdf

[2] NHS foundation trusts | The King's Fund. Accessed April 22, 2021. https:// www.kingsfund.org.uk/publications/ articles/nhs-foundation-trusts

[3] Smajdor A. Reification and compassion in medicine: a tale of two systems. *Clin Ethics*. 2013;8(4):111-118

[4] Bradshaw A. Measuring care and compassion: the McDonalised nurse? *J Med Ethics*. 2009;35:465-468

[5] Dew K. *The Cult and Science of Public Health: A Sociological Investigation*. Berghhan Books; 2012. doi:10.5860/ choice.50-0349

[6] Gheaus A. Care and Justice: why they cannot go together all the way. PhD thesis beforehand. Published online 2005. https://scholar.google.co.uk/ citations?view\_op=view\_citations&hl=e n&user=dBtDbXIAAAAJ&citation\_for\_ view=dBtDbXIAAAAJ:d1gkVwhDpIOC

[7] Gheaus A. Love, hate and moral inclusion. In: Carlisle, J. Carter, J.C. and Whistler D, eds. *Moral Powers, Fragile Beliefs*. Continuum Publishing; 2011:29-52

[8] The NHS Constitutional Values Hub. https://www.hee.nhs.uk/about/ourvalues/nhs-constitutional-values-hub-0

[9] Tronto J. *Moral Boundaries: A Political Argument for an Ethic of Care.* Routledge; 1993

[10] Arbuckle G. *Humanizing Healthcare*. Jessica Kingsley; 2012. doi:10.4324/978 1351266369-17

[11] Phillips A and Taylor B. *On Kindness*. First edit. Hamish Hamiliton; 2009

[12] Allen D. The legacy of Project 2000. *Nurs Stand*. 2009;23(34):18-21. doi: 10.7748/ns.23.34.18.s24

#### [13] *Old Testament, Leviticus*

[14] Ruddick S. *Maternal Thinking. Towards a Politics of Peace.* Beacon Press; 1989

[15] Kittay EF. At the margins of moral personhood. *Ethics*. 2005;116:100-131

[16] Gaita R. *A Common Humanity. Thinking about Love and Truth and Knowledge*. Routledge; 2000

[17] O'Neill O. *Justice Across Boundaries: Whose Obligations?* 3rd ed. Cambridge University Press; 2017. doi:10.1017/ cbo9781316337103

[18] O'Neill O. *Towards Justice and Virtue: A Constructive Account of Practical Reasoning.* Cambridge University Press; 1996

[19] Valles SA. *Philosophy of Population Health: Philosophy for a New Public Health Era.* Kindle edn. Routledge; 2018

[20] Mannelli C. Whose life to save? Scarce resources in the COVID-19 outbreak. *J Med Ethics*. 2020;(46):364-366

[21] O'Neill O. Some limits of informed consent. *J Med Ethics*. 2017;29:103-106. doi:10.4324/9781315240046-9

[22] The Health Foundation. *Person-Centred Care Made Simple: What Everyone Should Know about Person-Centred Care*. October 2014

[23] Evans J. Person-Centred Care and Culture Change. Caring for the Ages. 01 Aug 2017;18(8):6

*Compassion Versus Care in Healthcare Institutions: What's the Difference? DOI: http://dx.doi.org/10.5772/intechopen.97860*

[24] Ritzer G. *The McDonaldization of Society*. Pine Forge Press; 1992

[25] Let's be frank about the NHS | The King's Fund. Accessed April 23, 2021. https://www.kingsfund.org.uk/blog/ 2018/03/lets-be-frank-about-nhs

[26] Botting Hunt E. *Wollstonecraft, Mill and Women's Human Rights*. Yale University Press; 2016

[27] West M. Compassion is the core NHS value - not bullying. https://www. leadershipacademy.nhs.uk/2016/09/28/

[28] Gaita R. Morality, metaphysics and religion. In: Carlisle, J. Carter, J.C. and Whistler D, eds. *Moral Powers, Fragile Beliefs*. Continuum Publishing; 2011:3-28

### Section 2

## Inequalities and Disparities in Healthcare

#### **Chapter 4**

## The Risk of Inequality in Italian Healthcare Due to Covid-19

*Carlo Ciardo*

#### **Abstract**

The Italian National Health Service, characterized by the principles of universality, equality and fairness, has undergone changes over the years that have involved these essential characteristics. The decrease in financial resources was the first element that touched the Italian health organization. The spread of Covid-19 has attacked the balance of healthcare in Italy and put the equality of the entire care system at risk. The reform of the Italian health system, especially through the correct use of European financial resources, is the real test for the Italian health system of the future. It can be a moment of relaunch or the certification of a decline that jeopardizes constitutional rights.

**Keywords:** healthcare, inequality, Italy, covid-19

#### **1. Introduction**

#### **1.1 The fundamental principles of the Italian Health Service and the criticalities of public health expenditure**

The Italian National Health Service, characterized by the principles of universality, equality and equity, has suffered over the years an erosion of the aforementioned pillars also due to the systematic decreases in funding. In addition, the balance of the entire social welfare system is today subjected to an unexpected and very significant attack caused by the health emergency dictated by COVID-19.

The Italian model, created by Law n. 833/1978, was invoked evidently to the British experience of the original N.H.S. [1], while being distinguished by an accentuation of the intervention public. Wanting to summarize the criteria of the law establishing the NHS, 5 key points can be identified: a) "universality" of the provision of assistance services, b) "uniqueness" of the management of health facilities and hospitals by the USL (Local Health Units), the real engine of the reform; c) "equality" in carrying out therapeutic treatments; d) planning of assistance objectives and resources financial.

The 1978 reform implemented the constitutional provision of art. 32 of the Constitution, preparing a health network suitable for an organic and global protection of health. Just the art. 1 of the aforementioned law openly recalls the constitutional text, defining the protection of health «as fundamental right of the individual and collective interest» (art. 1, paragraph 1) and in paragraph 2, following the provisions of art. 32 of the Italian Constitution: «the protection of physical and mental health must take place in respect for the dignity and freedom of the human person». Strictly consequential with respect to this regulatory provision,

it is the direct intervention of the public authorities in the organization and in the provision of assistance itself.

In this regard, it is necessary to highlight that the definition of health protection does not only concern the absence of disease or disability. These references are now reductive and simplistic, so much so that the Organization World Health Organization has stated that health must be done to mean "a state of complete physical, mental and social well-being […] Condition of harmonic functional and physical balance and psychic organism dynamically integrated into its environment natural and social" [2]. Thus, the notion of health cannot yet be linked to the absence of infirmity, but has undergone a significant expansion of both a biological and social nature, alongside integrity physics of a static nature, also a dynamic element e relational [3].

In the light of the constitutional and normative arguments already mentioned, the solidity of the founding principles of the nal Health Service outlined since 1978 is of primary importance. Subsequently - already represent a substantial modification of the original structure on which the epidemic from Covid-19 had a decisive impact.

With reference to financial resources, it should be noted that the crisis of 2007–2008 had already triggered a spiral of decrease in economic allocations also through the provision of cost containment measures (for example: increase in the sharing of the so-called ticket and blocking of turnover).

The aforementioned measures have achieved, in the short term, the objectives set, so much so that in 2012 there was a beginning of a decrease in public health expenditure. This reflection, however, must be completed with a broader examination. In order to fully understand the overall picture, it is necessary to highlight that healthcare expenditure depends on multiple components: the aging of the population, epidemiological change, scientific progress and the change in information asymmetries between doctor and patient. The variation of each of these factors determines a change in the demand for services and therefore has an impact on the Health Service and its economic needs.

#### *1.1.1 Factors affecting the organization and financing of health care*

The first element to be evaluated is the demographic one. It is undeniable that there has been an increase in life expectancy. In Italy, from 1960 to today, life expectancy at birth has increased by 12.8 years for women and by 13.6 years for men, so much so that the average age of women is 85.2 years and for men it is 80.8 years. The national average is 83 years compared to the 80 years of the OECD average [4].

These data, together with the slowdown in the birth rate, have produced an increase in the elderly population, to which new welfare needs are linked.

The exponential increase in chronic diseases (for example: cardiovascular diseases, cancer, diabetes and dementia) - those most present in the elderly population - has a significant impact on both the organizational structure of the National Health Service and the economic one. Suffice it to say that in Europe in 2016 the treatment of cardiovascular diseases alone cost 192 billion euros, much higher than the expenditure necessary for the diseases that most afflict the younger population [5].

Another factor that affects the health organization and its financing is that linked to scientific progress and technological innovation. This element does not depend on the choices of each individual country, but on investments in research and development by manufacturing companies (especially pharmaceutical companies). The public resources made available in this field have the effect of conditioning the degree of access to knowledge and new technologies. In summary, the availability of about 14,000 medical device patents each year provides answers to health problems and creates, on the other hand, a new perceived need and, consequently, a new demand for assistance with undeniable repercussions on health care costs.

Think that the growth of technological innovation is much higher than the growth rate of the economy, so much so that between 2008 and 2012 while Italy recorded a decrease in GDP equal to 2.3%, in Europe 1 patent for medical devices was registered every 38 minutes [6], proving the fact that the National Health Service cannot keep up with the technical and scientific developments.

The last element of this picture of factors is represented by the variation of information asymmetries between doctors and patients dictated by the ease of acquiring information through the mass media and, above all, through the internet. If this increases the levels of knowledge of citizens, on the other hand, information bulimia also increases the risk of inappropriate requests, up to the so-called defensive medicine, a prescriptive modality that does not safeguard the patient's health, but removes the risk of professional liability, increasing inappropriate spending.

All the aforementioned affect the National Health Service and determine an ever-increasing and different demand for services, moreover in an emergency context dictated by the spread of COVID-19, which requires new financial flows and imposes a radical organizational change.

#### **2. The right to health protection "conditioned" by financial and organizational resources in the light of constitutional jurisprudence**

The entire issue of the health organization must also be read in the light of constitutional jurisprudence.

The Italian Constitutional Court, in implementation of art. 32 of the Constitution [7], has ruled that the right to health protection, understood as a request for services and benefits, is "primary and fundamental" and requires "full and comprehensive protection" [8].

This interpretative orientation changed, however, in the 1990s, when the need to contain public spending was imposed [9]. In the last decade of the last millennium, in fact, the Italian public debt had come close to 100% of GDP, while the public deficit was 11%. Especially since 1992 the situation has appeared out of control, so much so that the successive Governments (the first in this sense was the one chaired by Prof. Giuliano Amato) have begun a new phase of fiscal consolidation, with inevitable effects also on health expenditure [10].

The sentence of the Constitutional Court no. 455/1990 with which, while reiterating that the right to obtain health services must be guaranteed to every individual, he stated that this right is conditioned by the legislative choices of balancing the protection of health with other constitutionally protected interests: "taking into account of the objective limits that the legislator himself encounters in his work of implementation in relation to the organizational and financial resources available at the moment" [11]. For the first time it was established that the right to health protection had to deal with economic and organizational possibilities [12].

The subsequent evolution of constitutional jurisprudence has confirmed the need to achieve a balance between the right to benefits and economic and organizational limits, but has also provided for an essential core of the right to the protection of health that can never be undermined [13]: "in the balance of constitutional values operated by the legislator had an absolutely preponderant weight, such as to compress the essential core of the right to health connected to the inviolable dignity of

the human person, we would be faced with a macroscopically unreasonable exercise of legislative discretion" [14].

Constitutional jurisprudence relating to the patient's freedom of choice is also of considerable importance. Precisely the need to take into account the limited economic resources and the need for general health planning led the Italian Constitutional Court to establish that the patient's freedom of choice of the health facility at which to carry out a diagnostic examination or a medical intervention cannot be considered as an absolute right because of the incompressible economic needs [15].

The above is a confirmation, from the wall of the Italian Constitutional Court, of the policies to contain health costs, albeit within the limits of a reasonable balance with the various constitutionally relevant interests.

#### **3. The evolutionary lines of the National Health Service and the legislative choices of the Italian Regions**

Looking at the evolution of public policies in the health field, one must take into account the multiple choices made by the Italian Regions in the organization of Regional Health Services.

In most cases there has been a progressive unification of Local Health Authorities (ASL) and Hospitals (AO). One of the first Regions to make this choice was the Marche Region with the creation in 2003 of the Single Regional Health Authority (ASUR). This example was followed by the Abruzzo Region, with only 4 ASLs, and by Umbria, which passed to 2 ASLs.

Further examples can be given on the choice of reduction. Puglia already after the health reform of 1992 had gone from 55 Local Health Units to 12 ASLs, but in 2007 it decided to carry out another merger until it reached only 6 ASLs.

In 2015, the Tuscany Region reduced the ASLs from 12 to 3, and 4 university companies were added to these. In 2014, the Emilia Romagna Region created a single ASL (for the territories of Forlì, Cesena, Ravenna and Rimini) with over 1 million inhabitants, 12,000 employees and a budget of 2.2 billion euros.

In 2015, on the other hand, the Lombardy Region replaced the ASLs with 8 Health Protection Agencies and 25 Territorial Social and Health Companies.

Analyzing the different choices of the Italian Regions, in an effort of synthesis it can be said that the mergers were designed to create economies of scale, to simplify administrative procedures, to eliminate duplications. It should also be noted that these choices, in the medium term, can also cause inefficiencies linked to the excessive size of the ASLs and difficulties in creating middle management.

The above must be completed with an assessment of the evolution of the hospital organization.

The Law Decree n. 95 of 6 July 2012 provided for a reduction in hospital beds, so much so that a maximum value of 3.7 beds per 1,000 inhabitants was reached, compared to the previous value of 4 beds per 1,000 inhabitants. To this was also added an evaluation of small public hospitals in order to dismiss these structures and favor home care.

The process of reducing the number of beds and reorganizing the network of small hospitals was implemented with the decree of the Ministry of Health no. 70 of 2 April 2015 which defined the qualitative, structural, technological and quantitative standards. This legislative choice was aimed at reducing health care costs, reorganizing the hospital network and moving health care for many chronic diseases outside hospitals to put it at the expense of "territorial assistance".

In reality, however, this reorganization made the mistake of having accelerated the rationalization of hospitals by the Italian Regions, but it was not as effective

as regards the creation of a new territorial assistance which, therefore, remained incomplete in many parts of the national territory.

#### **4. Effects of public policies on the National Health Service**

After the economic crisis of 2008 there was a gradual reduction in the financing of the National Health Service. In the period between 2009 and 2014, Italian public health expenditure increased each year by 0.7%, while from 2003 to 2008 the growth in health expenditure was equal to 6%.

These policies to contain national health expenditure and the choices of the Italian Regions to reduce their budget, have had undeniable positive effects both on the national budget and that of many Regions that were in financial crisis (think of Regions such as Lazio, Campania and Sicily). At the same time, however, these choices have had an impact on health care.

The first effect of the reduction of economic resources for the National Health Service was the reduction of some assistance services. This aspect had a fundamental impact on citizens as those who had the financial availability were able to turn to private health facilities, while those who could not afford this expense independently had to give up temporarily.

This has also led to an increase in patient waiting lists at public health facilities. The "Annual report on hospitalization activities" of the Italian Ministry of Health (2019) contains some significant data. For example, in 2017 the average expectations were over 27 days for breast cancer, 53 days for prostate cancer, 119 days for tonsillectomy, 90 days for inguinal hernia [16].

In Italy 40% of specialist health visits, 49% of rehabilitation services and 23% of diagnostic tests are paid directly by citizens [17].

In addition, the policies to contain health costs also had a direct influence on medical personnel. In Italy there is no shortage of doctors, so much so that every year there are about 9,000 graduates in medicine and surgery, but only 6,000 graduates each year can receive a specialist scholarship. This means that every year in Italy about 2,000 doctors live in the uncertainty of their professional future, despite the enormous need for new doctors by the National Health Service.

To confirm what has been said, the fact that in the Veneto Region there is a deficit of 400 doctors, in the Piedmont Region and in the Puglia Region there is a need for about 300 doctors. If we look up to 2025, a national shortage of about 16,700 medical specialists is expected. An incredible paradox [18].

#### **5. A change of legislative step and the possible repercussions deriving from the COVID19 emergency**

It must be borne in mind that in recent years there has been a change in the choices of health policies. The resources allocated to the National Health Service have been slowly increased, although still largely insufficient. In the 2019 Economic and Financial Document, health expenditure for 2018 was estimated at approximately 115.4 billion euros, recording a growth of 1.6% compared to 2017.

This precarious balance has, however, been completely upset by the emergency caused by the spread of COVID-19 which has imposed a campaign of staffing and a sudden technological and infrastructural investment of which the exact extent is not yet known. In this regard, it must be taken into account that the first legislative intervention approved in 2020, in full epidemiological emergency, was the "Cura Italia" Law Decree, which immediately provided for the following emergency measures: additional funding for incentives to healthcare personnel (Article 1); hiring by the Minister of Health of 40 medical executives, 18 veterinary executives and 29 non-executive personnel, allocating over 5 million euros for 2020, 6,790,659.00 euros for 2021 and 2022 and almost 1,700 € .000.00 for 2023 (Article 2); possibility for the Regions to purchase medical equipment also from private health facilities (art. 3); an increase in the financing of healthcare for an amount of almost 2 million euros (Article 17).

This was only the first step in a series of economic increases which during 2020 (and also at the beginning of 2021) were expected to address a condition that has upset not only Italian society, but above all the entire National Health Service.

All this must also be taken into account the impact that the national and global financial crisis that was triggered by the pandemic, moreover on the Italian economy, which even before the health emergency had shown signs of weakness [19]. One of the first reports by the Moody's agency supported a possible recession in the Italian economy with a reduction in GDP of over 10%. For this reason, what must be watched carefully is the behavior of both the European Union and that of the ECB.

#### **6. Is Italian healthcare likely to be unequal?**

The evolutionary framework of the interventions of economic and organizational policies in the health field gives us a plurality of indices from which multiple inequalities emerge, so much so as to touch the foundations of the constitutional right to the protection of health.

The first imbalance is between Northern Italy and Southern Italy. Already today in the Northern Regions the life expectancy for men and women is respectively 81.2 years and 85.6 years, while in the South the life expectancy for men and women is 79.8 and 84.1 years. Years.

An index of inequality is represented by healthcare mobility between Regions, so much so that in 2017 88% of Nitalians who moved to be treated were hospitalized in Lombardy, Emilia Romagna, Veneto, while 77% of citizens who moved to try to be treated came from the Regions of Central and Southern Italy (Puglia, Sicily, Lazio, Calabria and Campania).

A further sign of inequality is linked to the renunciation of care by the poorest sections of the population. 43% of Italians with serious economic difficulties declare that they are not in good health, while only 23% of those who do not have economic difficulties believe that they are not in good health [Italian Higher Institute of Health, "Report on inequalities", 2019]. It must also be assessed that 55% of people with a low level of education report that they are in poor health (compared to 20% of Italian graduates) and 12% say they have depressive symptoms (compared to 4% of graduates).

This context of inequalities is even more relevant if we consider that over 11 million Italians in 2017 gave up on treatment for economic reasons and 7 million Italians went into debt to take care of themselves.

This fragile health care landscape is also characterized by significant paradoxes, the first of which is linked to the ineffectiveness of care services. It has been estimated that 19% of public spending, 40% of private household spending and 50% of the expenditure incurred by insurance policies, is used for diagnosis or for inappropriate or ineffective health services.

All this represents the photograph of a National Health Service that was already present before the COVID-19 emergency was characterized by gaps and contradictions and that, with absolute probability (if not certain), the spread of the virus will only exacerbate, especially with regard to of the poorest faces of the population, those socially more fragile and, in particular, towards the elderly.

#### *The Risk of Inequality in Italian Healthcare Due to Covid-19 DOI: http://dx.doi.org/10.5772/intechopen.97514*

We are in the presence of welfare, territorial and access to care inequalities that risk completely undermining not only the foundations of the National Health Service, but also those of the constitutionally protected right to health protection.

Furthermore, still on the subject of inequalities, the annual reports of the World Bank, the International Monetary Fund and the OECD, which constantly provide data on the increase in the concentration of wealth, cannot fail to have reinterpreted on the welfare state and, consequently, on the gap between the assistance potentials provided by technical-scientific progress and the actual levels of assistance provided.

From the above it follows that the picture of the evolution of Italian healthcare, also in the light of the contingencies that the current health emergency, opens the way to pressing fundamental doubts about the effectiveness of the principles of universality, equality and equity that inspired the creation of our SSN and which today risk being only chimeras.

Faced with this complex picture, it is necessary to think not only about how to convert entire healthcare companies into hospitals dedicated to the care of patients suffering from Covid-19, moving patients with other diseases to other small hospitals, but it is also urgent to already start planning a future in which there are integrated assistance systems, with large hospitals that are centers in which investments are concentrated and specialization is developed, connected in telemedicine with small hospitals.

In this new vision, one cannot imagine addressing the issue of small hospitals only with a view to reducing costs, but it is necessary to plan their use in a perspective of continuity of care and strengthening of territorial assistance.

On the side of medical personnel, the time has now come to face the season of the shortage of doctors and nurses with determination, nor can we think that this problem can be solved exclusively with urgent procedures for the recruitment of usable staff to fight the pandemic. Instead, it is necessary to design new care models and launch real training programs for the phase following Covid-19. The contingent criticality must be transformed into an opportunity to strengthen a poor health system, first of all, from the point of view of the staff. It will be possible to plan the reconversion of services by leveraging the energies and skills of young doctors to be included in the National Health Service.

Furthermore, it would be short-sighted to limit ourselves to asking for economic policies to increase public spending to be allocated to the health service (back to a percentage of about 7% of GDP), nor would it be satisfactory to limit ourselves to hoping for investments for the adaptation of structures. Hospital. Instead, it is necessary, right from the start, to train young doctors and nurses, as well as new professional figures capable of bringing new services.

Finally, any reorganization of the National Health Service would be empty if the problem were not raised (and the solution started) of strengthening local health care, because only through this simple (but essential) Copernican revolution will we be able to address both the needs imposed by the pandemic and the needs that health care has to face every day in order to provide answers to the many health protection questions raised by the population.

*Bioethical Issues in Healthcare*

#### **Author details**

Carlo Ciardo University of Salento, Italy

\*Address all correspondence to: carlociardo@hotmail.com

© 2022 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/ by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

*The Risk of Inequality in Italian Healthcare Due to Covid-19 DOI: http://dx.doi.org/10.5772/intechopen.97514*

#### **References**

[1] G. Cazzola, *La sanità liberata*, Il Mulino, Bologna 1994, p. 23; F. Longo, E. Vendramini, *La nuova riforma NHS: è morto il foundholding, viva il foundholding*, in Mecosan, 1999, 2.

[2] This WHO deficit was reported by G. Cilione, *Diritto Sanitario*, Maggioli, Rimini 2005, p. 15. On the right to the protection of health as a balance between "soma" and "psyche" see also the jurisprudence of the Italian Constitutional Court, sentences nn. 161/1985, 215/1987, 167/1999, 181/2002.

[3] M. Luciani, *Salute*, *Diritto alla salute (dir. Cost.)*, cit., p. 6. Cfr. M.S. Giannini, *"Ambiente": saggio sui diversi suoi aspetti giuridici*, in *Riv. trim. Dir. pubbl.*, 1973, p. 23 ss.; B. Caravita, *La tutela dell'ambiente nel diritto costituzionale*, in Aa.Vv., *Diritto pubblico dell'ambiente*, Cedam, Padova 1996, p. 43 ss.

[4] OECD, 2019, www.oecd.org 17/03/2020.

[5] The European House-Ambrosetti, *Meridiano Sanità - Rapporto 2018*, https://www.sanita24.ilsole24ore.com 12/01/2020.

[6] EUCOMED 2011 in Ministero della Salute – CERGAS*, Report on the expenditure recorded by the public health facilities of the NHS for the purchase of medical devices*, Roma, dicembre 2011, www.salute.gov.it 17/03/2020. Sul punto cfr. R. TARRICONE, *Innovation and competitiveness in regulated industrial systems. Medical device companies,* Milano, 2010.

[7] D. MORANA, *La salute nella Costituzione italiana, profili sistematici*, Milano, 2002. B. CARAVITA, *La disciplina costituzionale della salute*, in *Diritto e società*, 1984, p. 31; M. LUCIANI, *Diritto alla salute (dir. Cost.)*, in *Enciclopedia Giuridica*, Roma, 1989, 21, p. 5. A. PACE, *Problematica delle* 

*libertà costituzionali, parte generale*, Padova, 1990, p. 44.

[8] Corte Costituzionale n. 992/1988. Corte Costituzionale nn. 103/1977, 88/1979, 184/1986, 559/1987, 992/1988, 1011/1988, 298/1990, 184/1996. B. PEZZINI, *Principi costituzionali e politica della sanità: il contributo della giurisprudenza costituzionale alla definizione del diritto sociale alla salute*, in C.E. GALLO, B. PEZZINI (a cura di), *Profili attuali del diritto alla salute*, Milano, 1998, p. 19. A. COSENTINO, *Diritto alla tutela della salute e terapie alternative, le scelte dell'amministrazione sanitaria ed il controllo dei giudici: riflessioni in margine al caso Di Bella*, in E. BRUTI LIBERATI (a cura di), *Il "caso Dibella" nella giurisprudenza civile*, Milano 2003, p. 18.

[9] A. ANZON, *L'altra "faccia" del diritto alla salute*, in *Giurisprudenza costituzionale*, 1, 1979, p. 656; R. FERRARA, *Il diritto alla salute: i principi costituzionali*, in S. RODOTÀ, P. ZATTI (diretto da), *Trattato di biodiritto*, Milano, 2010, 4, p. 21.

[10] F. CERNIGLIA, *La spesa pubblica in Italia. Articolazioni, dinamica e un confronto con gli altri Paesi*, Università cattolica del sacro Cuore - Vita e Pensiero, 2005 pp. 34-47.

[11] A. SPADARO, *I diritti sociali di fronte alla crisi (necessità di un nuovo "modello sociale europeo": più sobrio, solidale e sostenibile)*, in *Rivista AIC*, 4, 2011, pp. 1 ss.; D. MORANA, *I diritti a prestazione in tempo di crisi: istruzione e salute al vaglio dell'effettività*, in *Rivista AIC*, 4, 2013, pp. 1 ss.; E. CAVASINO, G. SCALA, G. VERDE (a cura di), *I diritti sociali dal riconoscimento alla garanzia*, Napoli, 2013; S. GAMBINO (a cura di), *Diritti sociali e crisi economica. Problemi e pro-spettive*, Torino, 2015. R. NANIA, *Il diritto alla salute tra attuazione e* 

*sostenibilità*, in M. SESTA (a cura di), *Attuazione e sostenibilità del diritto alla salute*, Roma, 2013, pp. 29-44.

[12] R. FERRARA, *Tutela della salute: prestazioni amministrative e posizioni soggettive*, in M. ANDREIS (a cura di), *La tutela della salute tra tecnica e potere amministrativo*, Milano 2006, p. 44.

[13] B. PEZZINI, *Principi costituzionali e politica della sanità: il contributo della giurisprudenza costituzionale alla definizione del diritto sociale alla salute*, in C.E. GALLO, B. PEZZINI (a cura di), *Profili attuali del diritto alla salute*, Milano, 1998, pp. 28 ss.

[14] Corte Costituzionale n. 304/1994. In tal senso, *ex multis* Corte Costituzionale nn. 309/1999, 432/2005, 269/2010, 61/2011.

[15] Corte Costituzionale n. 111/2005; in tal senso altresì cfr. Corte Costituzionale n. 94/2009.

[16] Ufficio parlamentare di Bilancio, *Lo stato della Sanità in Italia,* Focus n. 6, 02.12.2019.

[17] CENSIS-RBM, *9 Rapporto Rbm-Censis 2019,* www.welfareday.it *17/03/2020.*

[18] ANAAO Assomed, 2019.

[19] ISTAT www.istat.it 11.01.2020*.*

#### **Chapter 5**

## Radical Bioethics: Difference, Disability, and Desiderata

*Mary Jo Iozzio*

#### **Abstract**

With diatoms—globally abundant single cell algae—as both a model and an extreme example of diversity among a single species, Radical Bioethics examines narrow constructions of human diversity as a failure of imagination and a refusal to recognize disability as another instance of difference. Along with other disciplines, bioethics has been slow to consider its biases, inherited from a history of social constructions, against people with disability. Both desire and desiderata offer an alternative to harms committed against people with disability in matters relating to initiatives that foster their inclusion as critical participants in and rightful recipients of the commonweal.

**Keywords:** bioethics, desire, desiderata, disability, diversity, historical consciousness, theological anthropology, United Nations Convention on the Rights of Persons with Disability, World Health Organization

#### **1. Introduction**

Knowingly or not, disability in the human community is a global reality about which too few register a thought concerning its prevalence. As a result of this unrecognizability, this failure to register, too few people without immediate experience of or any regular encounter with persons with disability remain unconcerned with this largest and most diverse minority of people across the globe (by the World Health Organization estimates, at least 15% of Earth's human population). Moreover, the likelihood of able-bodied/able-minded persons joining this minority increases with age if not by accident or by diagnosis of, for example, Alzheimer's Disease, arthritis, depression, diabetes, heart disease, mental illness, multiple sclerosis, Parkinson's, and other conditions. No geographic location is immune from this prevalence, particularly in relation to the vicissitudes of contemporary life—for example, travel, trudgery, terrorism. Unsurprisingly, both poverty and place of residence both increase and exacerbate the vulnerability to being born with or acquiring a disability in one's lifetime. My focus on "Radical Bioethics" offers one response to a dearth of theo-ethical and bioethical reflection on a critical concern for this population. This concern includes the requirements of justice that have been largely ignored in the vein of care for the support and development of basic human functioning capabilities that are available in the common good, the means of which "commons" would be distributed with a preferential justice and safeguard for persons and communities of people with disability [1].

The ethics of critical medical and essential health care for people with disability remains under-considered explicitly, except perhaps as an aside to the focus of

research in bioethics and healthcare ethics more broadly. Nevertheless, a growing number of academics in the humanities and social sciences recognize the need for bioethical, philosophical, and religio-theo-ethical reflection on the subject of disability. Many have begun to notice and reflect upon the ways in which people with disability have been ignored and/or grossly underestimated as participants in and rightful recipients of the commonweal: the common goods of health, education, recreation, employment, commerce, social and political affairs, and religious observance.

What follows continues work I have done on theological anthropology, exploring the diversity of creation, and the radical dependence that characterizes all people—not singularly or especially people with disability but—a dependence that characterizes all people, from the most robust to the infirmed. Such dependence raises critical questions of procedure in theological ethics, bioethics, and healthcare. Among the obstacles frequently encountered in this work are the persistent attitudes, notably identified by the social constructions of disability, that preclude many initiatives that would attend to both critical and basic health care for people with disability. Nevertheless, and even as most are not likely to have been exposed to the histories of the many tragic and rather appalling experiences that people with disability have endured, the good news is as important as the sad and scandalizingly brutal treatment people with disability have received at the hands of their caregivers, communities, and medical professionals in addition to abuse from strangers. Thus, as more people with disability participate today in many different settings where previously they had been excluded de rigueur, nondisabled people have become more accustomed to both casual and commercial interactions with them; my hope is to further the work of removing the obstacles to care and the inclusion of people with disability throughout the commons of human encounter.

In this essay I offer a broad look at the current lack of sustained attention in bioethics to the social forces and inherited assumptions that the field has failed to recognize particularly in an unexamined critique of its power and influence to shape the medical and social imaginary. Before entering into bioethics, I offer two precises, first a theological anthropology of radical dependence and second why radical bioethics –both viewed through a lens that includes an often-overlooked history of the experiences that people with disability have endured over the millennia. Theology undergirds the challenge of wholesale inclusion of people with disability in the main as well as in considerations of how people with disability are to be engaged in participatory bioethics like other moral agents in their exercise of autonomy and self-determination. I then explore the contours of a radical bioethics as it is rooted in principles with which I approach bioethics, namely, a radical posture and proclamation that people with disability are people first. I move then to difference and diversity as key to the root of the participation of people with disability in the commons and the professions. I conclude with a desiderata-like meditation on a radical embrace of flourishing for all.

#### **2. A theological anthropology of radical dependence**

People with disability and the non-disabled belong to a common humankind that is deigned the *imago Dei* and in which, through the *Kenosis*, God identifies with all human joys and sorrows, births and growth, disability and deaths, as well as the past and the future. As *imago Dei*, humankind takes its primary data from the Christian tradition's teaching on creation, the Incarnation, and Trinitarian theology. The implications of this theology extend beyond a facile nod to the identification of God with humankind: if the Trinity is the theo-anthropological ground

#### *Radical Bioethics: Difference, Disability, and Desiderata DOI: http://dx.doi.org/10.5772/intechopen.97654*

of being human, then the Trinitarian symbol of God must function as a template for all divine and human affairs [2]. The critical importance of a Trinitarian theological anthropology cannot be overstated. If the datum of the tradition is to be believed, then we must be earnest in engaging with God and with one another along the lines of relationship and relationality that is the manifest expression of God for Us [3].

The Christian tradition has long discussed and defended the doctrine of the Trinity and the Trinity's action in the world as Father, Son, and Holy Spirit. However, the Trinity carries doctrinal importance beyond the formulaic introduction to prayer: the doctrine of the Trinity holds the potential of transformative practice among believers and nonbelievers alike. If every person is created in the image and likeness of God, and as God has been revealed to us in triune relationality *in se* and *ad extra*, then relationality—not isolating autonomy or dogged selfreliance—is the form of the *imago Dei*.

"Trinitarian theology is the language of relationality *par excellence*" [4]. not only *in se* but *ad extra* for us and for our salvation. The relationality that subsists within the Trinity is a relationality of a willed quasi-dependence of the Three Persons in One God. We Christians do not know God in any other way than in this Tri-Personal Relationality. This relationality is as God wills it to be in salvation history, *in se* and *ad extra* dependent in form and matter though uniquely unified and subsistent in effects: "the economic trinity is the immanent trinity and *vice versa*" [5]. It is thus *in se* wherein God enjoys/relates in God's own company and *ad extra* wherein God enjoys/relates to all that God has wrought for us—the symbol of a relational God functions.

"That symbols are signs is certain: they are expressions that communicate a meaning; this meaning is declared in an intention of signifying which has speech as its vehicle" [6]. Christian theology speaks of God in the terms of an I-Thou relationship. If the symbol of God functions in a vehicle of relationality and to be in relation suggests dependence within the one and the three, then relational dependence holds first place in the ways that we are to envision the *imago Dei*.

Of course, dependence in inter- and intra- Trinitarian relationality differs exponentially from the dependence experienced by the *imago Dei*, nevertheless dependence is in this anthropology relieved of its burdensome negative connotations. Dependence in this sense is neither a bad word nor a bad idea. It is, alternately, liberative. I am suggesting that unity in diversity translates to the *imago Dei* as radical dependence, human dependent relationality: we human beings are dependent upon God and upon one another from our conceptions and births, through childhood, adolescence and adulthood (to think otherwise is foolhardy) [7]. This symbol of God for us expresses intentional relationality as the ontological ground for understanding the function of the symbol that is the *imago Dei* rightly inclusive of every manifestation of God's creative incarnate sanctifying love or wrongly exclusive of any.

In this theology, relations exist on account of difference. God is conceptualized through a medium of difference or diversity as the Trinity of Divine Persons, different *and* related: God as Father and Creator, God as Son and Incarnate Word/Jesus of Nazareth/the Risen Christ of Faith, and God as Holy Spirit and Transcendent Love within the Godhead and to all the world. "The mystery of God is revealed in Christ and the Spirit as the mystery of love, the mystery of persons in communion who embrace death, sin, and all forms of alienation [e.g., difference] for the sake of life" [8]. In Christian terms, the only way for us to know God is through God's own self-disclosure as the divine being in relation with Godself in Trinitarian union and in relation with the rest of creation and perhaps we human beings in particular, in anthropological terms. As beings created in God's own image, we human beings are

known only in relation to God and to one another: our self-knowledge is dependent on the diversity of persons and all other beings and things in the world.

I propose that we take difference or diversity as the key to our being in the world and in relationality with all reality thereby. While we may hesitate to consider disability as the sine qua non condition of humankind, it behooves us to recognize diversity and the dependence that attends to all beings and to all of our relationships, of intimate and of distant or impersonal kinds. This dependence on "the other"—all too frequently assumed true especially (only?) for people with disability—unfolds in both deliberate and indeliberate ways, by choice or by literal or figurative accident. However, whatever our present status on the ability- disability spectrum, our task is to become ever more mindful of the other(s) among us and to recognize the webs of connection in place of potential self-loathing or of rejection, disdain or fear of the unfamiliar/not related/unrelatable other. Such a potential is a blasphemy against God in whose image we are all created and by whose begetting us makes us members of a single family, more than neighbors, sisters and brothers all. And we need to confess the sins and the near occasions of these blasphemous sins against God, ourselves, and our siblings near and far. The radical dependence of being in the world belies autonomy and the "self-made man."

Thus, when we turn to disability identity with a posture of humility, we may soon discover the magnificent diversity in the ways that persons become themselves and we may soon find them and ourselves beautiful. Consider the tendency of delight many of us experience at the sight of a majestic mountain scape, a field of wildflowers, a herd of buffalo, a night sky filled with stars, or the songs of wild birds. We marvel at nature's diversity, but we may be stingy in recognizing diversity in humankind. In the world of dualistic segregations, superficially identifiable differences have been used to categorize and, invariably, establish hierarchies that ranked individuals and communities on the basis of their conformity to a norm. In the case of human norms the dualisms of male/female, spirit/ body, white/non-white, heterosexual/homosexual, and non-disabled/disabled have designated de facto the second part of each pair as a defective version of the first part; those designations subsequently led to the oppression or patronization of the second by the first. However, when diversity, inclusive of people with disability, is presumed as normative, these dualisms lose their power to elevate one expression of diversity, however narrow or large, over the diversity of other expressions. When diversity is normative dualisms no longer make sense and an anthropology of inclusion can emerge in their place.

#### **3. Why "radical" bioethics?**

#### **3.1 Meanings and implications of Radicality**

The *Oxford English Dictionary* offers three meanings of the term "radical," each referring to the defining nature of someone or something as 1) fundamental or basic, essential, quintessential; 2) inherent or innate, intrinsic, structural; and 3) comprehensive or constitutive, organic, root [9]. I start with the notion of "radical" as root to agitate any personal complacence toward what we in the "west" have inherited as a hierarchy of being, at least since Linnaeus in the eighteenth century if not well before, with the 6th century BCE pre-Socratic philosophers to the Aristotelian trajectories in metaphysics of the 4th century BCE. Additionally, with the anti-racist, feminist, and LGBTQ critiques, I hold a view toward a sociopolitical and theological kind of disruption about the taxonomic hierarchy and the subsequently normative ways of thinking about ourselves as members of the family

#### *Radical Bioethics: Difference, Disability, and Desiderata DOI: http://dx.doi.org/10.5772/intechopen.97654*

hominid, genus *homo*, and species *Homo sapiens*. I challenge determinations at the root of "Who Counts" as members of the human fold at the fundamental, inherent, and comprehensive levels of this hierarchy. And I challenge the agency that some members of the species have exercised in determining restrictively the agency of most others—those many others classified as marginal to the social, political, and religious, let alone the academic and professional elite.

I am suggesting a radical/root change in the way people with disability are perceived by many among the nondisabled community and the subsequent ways in which they—people with disability—are disabled by the social, medical, philosophical, political, and theological constructions of non-normative "being" in the world. The idea of constructions that cohere with the now widely accepted rejections of and efforts to dismantle racial, ethnic, and gender biases is critical to the work of dismantling stereotypical assumptions about disability and about people with disability. Briefly, the social construction approach presents the contemporary critique of long-held-to-be true determinations about individuals and groups of "like" individuals such that all persons belonging to the class have uniform experiences of "being" a Woman or Black or Indigenous or Gay … or Disabled. Moreover, individuals and the groups to which they have been "assigned" are stigmatized for being … women, non-Anglo, Native/Indigenous, Queer, and/or Disabled [10]. Thus, following the lead of people with disability and their co-agitators in the radical disability movement, my approach to disability has matured from a focus on individual problems experienced by individual persons with this or that particular impairment "to the wider oppression and social barriers that [have historically] excluded and disabled people" [11].

For all its efforts to promote autonomy, beneficence, nonmaleficence, and justice, bioethics is not immune to the inherited social constructions of disability. These constructions hold alongside the inherited assumptions about people with disability and the various ways in which they, people with disability, have been and continue to be calcified, categorized, and classified as, mostly, unfit to share space with the nondisabled. However, since none of us are immune from these inherited assumptions and their subsequent applications to real people, it is important to unpack the assumptions about disability for the dangers that lurk within them. Similarly, it is important to dismantle the oppressions that accompany the constructions that build on these assumptions. Granted, none of us likes to think that we can be mistaken about the values inherent to this or other concepts (like beauty, strength, and adaptability). Nevertheless, glaring examples of the misappropriation of personhood abound: for example, some of the handing down of religious practices from generation to generation were conducted under penalty of death if refused and, just as mistakenly, imperial conquests (e.g., by the Portuguese, Spanish, British, French, Chinese, Ottomans, and the United States) denied the humanity of many indigenous peoples in Africa, the Americas, and Asia. Let us not be fooled. Many people today suffer enslavement in the form of human trafficking for exploited labor, organs, or reproductive service, and sex [12]. In ways similar to the contemporary enslavement of people who occupy places hidden from a decidedly prejudicial social history and from "polite" company, too few people register a thought about the similarly prejudicial, marginalizing, and oppressive experiences of people with disability.

With exceptions, people with disability have not been treated well. Their treatment has been identified and outlined for us by social science academics, psychology and nursing professionals, and humanities scholars in a system of models that distinguish one manner of treatment–with positive or negative effect—from another manner. Contemporary studies offer an approach to this history through the models of disability, developed by people with disability, that are related closely to the ways in which the non-disabled and dominant codified their perceptions of people with disability according to the social roles to which they were assigned. The most common models of disability are the religious-moral model where individuals or their parents or communities are responsible for disability as a punishment from God for sin or sins committed; the medical model, which "conceptualizes disability as deviance and lack within the individual, and therefore all medical interventions are geared toward bringing the individual as close to normalcy as possible" [13]; and the social construction model of physical and attitudinal barriers of exclusion, like stairs and inaccessible educational, commercial, health, political, or recreational opportunities. In addition to these three, other precisions have been offered with the tragedy/charity, expert/professional, rehabilitation, economic, and rights based, customer/empowering models [14]. Parallel to these models are social roles to which people with disability have been assigned as their being sick or sub-human, a menace, pitiable, a burden, holy innocent, inspirational, amusing, and a blessing [15]. Regardless of model or role, each of these assignments includes greater or lesser degrees of stigma: the defining mark of otherness that clears the way to marginalization and to greater or lesser degrees of direct marginalization, oppression, and violence [16]. The models offer a shorthand reference to understanding the presumptive attitudinal barriers that people with disability and their companions encounter all-too-frequently to this day [17].

As disability advocates remind us: "it's important to remember here that throughout recorded history all forms of inequality, injustice, and oppression have been sanctioned in one way or another on the basis of assumptions of biological inferiority" [18]. Contemporary efforts to decry these injustices and to reject these assumptions, such as to include the perspectives and insights of people with disability, are rare and, when present devolve all-too-easily into patronizing thanks and nods. "Why, at almost the end of the second decade of the 21st century, are the [basic and fundamental] human rights of people with disability still ignored?" [19].

As suggested above, those with the power to make and shape societies have been grossly mistaken in their judgment about the inherent human value and dignity belonging to people with disability and others who do not conform to hegemonic norms. Those mistaken judgments are the bases of a history of maltreatment that people with disability have endured, a history that has been largely ignored and likely intentionally unrecorded; in effect, people with disability themselves and their stories of success and failure and of loves and losses have been silenced over the course of time. However, that culture of silence is no longer acceptable: the truth to be told is that newborns, infants, children, and adults have been neglected, abused, and exterminated on account of the presence of disability in their lives [20].

I now turn to the historically prevalent exclusion of people with disability to contextualize their experience and its residue in the main and in bioethics today.

#### **3.2 A brief survey of historical experiences**

With 15% to potentially 25% of people worldwide having one or more disability today (up to 1.75 billion of 7.6 billion people), it is undeniable that people with disability have been among the members of the human economy from antiquity to the present. Combining the models of disability (medical, moral, and social) to parallel social roles (menace, burden, clown), individuals were identified taxonomically as other. Given the lessons that contemporary retrievals of the historical experiences of many members of minority populations have uncovered, this "othering" of people with disability has resulted in their oppression as a class that, like racism and sexism, can no longer be tolerated.

To the extent that those who have held power and authority record history, resolutions concerning people with disability resulted in their marginalization on account of the causes those powers presumed were at fault from: divine punishment for some sin (either one's own or one's parents) or a pre-emptive warning show of divine power; consorting with evil; an imbalance of humors; maternal stress during pregnancy; bestiality; menstruation; and astrology. Each of these causes encouraged perceptions that people with disability were more animal or otherworldly than human, that they could tolerate environmental extremes and malnutrition, and that they were dangerous to the societies in which they lived—conclusions that gave license to harm them with impunity by taming, exhibiting, sequestering, and worse.

Scandalously, many individuals with disabilities–feared and/or loathed by the non-disabled—would have been exposed at or near birth or otherwise ostracized once the presence of a disability became known [21]. Infanticide by exposure was widespread and, in some state-sponsored cultic systems, the practice was mandatory. Some early Greek medical texts instruct on recognizing defects at birth, in the first months, and early years so as to determine a child that is not worth raising [22]. Aristotle too recommended laws to prevent the rearing of "deformed" children and to deny deaf children access to schools, since they would burden the progress of the non-disabled children/boys of the community [23]. In Greco-Roman antiquity it would not have been uncommon for newborn girls or a newborn with observable disability to be abandoned or left in a crude cradle at a crossroads or near a market, gymnasium, or temple with some possibility of being taken (and likely enslaved), or tossed into a river by their patriarchs. Equally troubling and perhaps more horrifying, some parents or overseers and other wardens, who depended on "income" from begging, would mutilate their biological or "adopted" children with disability to increase the pity-value that patrons might assess on them and thereby increase almsgiving to their cause of household maintenance [24]. Among other curiosities, the Roman gladiator games included the spectacle of fights between little people, the deaf, other people with varying disability, women, and animals. Less brutal but not less disturbing were practices that exhibited individuals with disability in courts of power: as a sign of blessing, entertainment, or pity to extend telethon-like charity.

The early medieval period made way for the custom of caring for the sick, those with disability, and the poor. Outside of the support of their natal homes, people with disability were reduced often to poverty and they resorted to begging as a principal means of income. Wanting to follow the example of Jesus, who attended to those who were marginalized for this or that stigma, Christians began to extend compassion on the less fortunate. By the height of the Middle Ages in Europe, a "period of organized beggary" led to guilds open to people with disability wherein leaders emerged, and rules and languages developed by guild members [25]. The guilds represent a welcome initiative by today's standards. Yet, this same period saw the institution of "idiot cages" that kept people with disability confined, while the cage protected those beyond the bars. And where cages were insufficient or when the masses tired of this or that caged group, the "ship of fools" provided another form of distance to keep people with disability separate and exploited as members of a traveling carnival-horror-freak sideshow for port residents and visitors alike.

And then came the development of institutions. Founded as a result of a system of hostels for pilgrims on their way to a holy site for both blessings and cures, hospitals for the sick and incurable became asylums for the insane and invalid. With the advent of the Enlightenment project to reject the old and quaint in favor of a rational order, new scientific ways of conceiving the individual in society and the common good brought to the fore utopian concerns of a more perfect communion, overtly including an underlying concern for the dangers lurking in any near

presence of people with disability. The isolation of institutions provided safety for the non-disabled as well as it gave rise to better or worse care for those institutionalized where—up to and including the 21st century—as a captive population, they could be studied "objectively." With concentrated access to people with a diverse array of disabilities, doctors and scientists began to investigate the causes of disabilities using then newly advanced medical and empirical methodologies. Some of this early science fueled the later nineteenth and early to mid-twentieth centuries' eugenics movements through the subsequent sterilization of people with disability and other suspicious folk [26]. Consider the scientific "proofs" of a biological basis for the categories of race and the subsequent discrimination against non-white peoples, especially peoples of African descent, that labeled many deviant. People from Mediterranean countries and Asia were considered to be of "questionable genetic stock" and likely to increase the number of feebleminded or criminals that would become wards of the state; it would be better to prevent them from reproducing altogether [27]. As long as people were institutionalized and isolated from general human commerce, they were–and those who remain institutionalized are—vulnerable to abuse, exploitation, and other dehumanizing injustices.

The confluence of social progress, science, and rational self-interest led to the systematic individualization and medicalization of all persons–those deemed "normal" and those deemed "othered"—as subjects (the normalized) and as objects (the aberrant/abnormal/disabled). This systematic program led to a widespread ideology of disdain for, dis-ease with, and distrust of any who did not/do not conform to the hegemonically putative/normative/ideal modern man. By the twentieth century, eugenic initiatives were set in Europe and the United States with sterilization programs and final solutions in a murderous holocaust of untold, unnumbered, and unaccounted hundreds of thousands of people with disability. Scandalously still, eugenics and euthanasia by a different name continue apace with neonates, children, adolescents, and adults in their prime and elderly with disability as today's principal populations that are vulnerable to medical-social-scientific control. While eugenics may not be institutionalized, it holds ideological power and is practiced widely in reproductive medicine and the selective abortion of fetuses. Similarly, euthanasia remains a threat as the contemporary equivalent of exposure by withholding life support from a person–neonate or adult—who could thrive if given the chance, not with heroic or extraordinary intervention but with the radical bioethics notion of ordinary care.

#### **4. A disability-informed bioethics**

#### **4.1 Disability is multi-dimensional and multi-experiential**

"Disability is a multi-dimensional concept, which should be understood in terms of a continuum" [28]. This continuum is true for all people once born and throughout the days of our lives. Even so, a disability continuum may have more dramatic punctuations than the general population. As such, bioethics attention to the multifaceted experiences of people with disability has the potential to integrate disability experiences in both critical interventionist care for things like substance abuse or cancers as well as the more mundane and presumably easier access to routine health checks and preventive holistic services like nutritional support, exercise, education, and social interaction in arts and leisure and recreation. Bioethics will need to approach the subject with humility, since any attempts to categorize disability in generic terms will fail, especially since the human organism is itself complex; nevertheless, the phenomena of disability are expressed in the literature

#### *Radical Bioethics: Difference, Disability, and Desiderata DOI: http://dx.doi.org/10.5772/intechopen.97654*

as physical impairments, sensory impairments (e.g., blind and deaf), cognitive and/or developmental difficulties, mental health, and chronic illness.

While disability has been a feature of human life throughout the millennia, the contemporary climate suggests that the phenomena is rare or, if not rare, better to be left unspoken and closeted. The history above belies the rarity of disability and the suggestion that a culture of glamor or power or the accumulation of wealth is sufficient to disguise the presence, the challenges, the joys, the hopes and sorrows, as well as the contributions of persons with disability in ways grand and small yesterday and today [29]. The initiatives of the United Nations in its *Convention on the Rights of Persons with Disabilities* (2006) are key for advancing the cause of recognition and self-determination for all people with disability. Although the United States has signed, it has not ratified the *Convention* and remains thereby not bound by its statutes. Article 4 notes nonetheless that "States Parties undertake to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability" [30]. The full realization of all human rights requires that persons with disabilities, like the nondisabled, have access to the basic goods of safe housing, potable water, nutritious food, education, family relations and friendships, healthcare, employment, recreation, public services, and religious or other spiritual practice. Additionally, Article 10 reaffirms "that every human being has the inherent right to life and [States Parties] shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others" [31].

In 2001 the World Health Organization published the *International Classification of Functioning, Disability, and Health* (ICF) and in 2007 the *ICF-CY* (children and youth) as the framework for measuring health and disability at both individual and population levels. In these texts and in the related 2011 *World Report on Disability*, WHO conceptualizes a person's level of functioning as a dynamic interaction between her or his health alongside environmental and personal factors, with a comprehensive basis for the definition and measurement of health and disability [32]. The idea of functioning as a measurement standard was inspired by the work of economist Amartya Sen and philosopher Martha Nussbaum, who developed the "capabilities approach" to discern an individual's functional development and attainment of health [33]. In brief, the capabilities approach holds that all human beings have a virtual obligation to develop the abilities–inherent to each albeit in variable and disproportionate measure across the capability spectrum— as a positive natural right and the province of human initiative that lead, if given the opportunity, to flourishing and a good human life. Nussbaum articulates these capabilities as the basic human rights to acquire functional development of life: bodily health; bodily integrity; senses, imagination, and thought; emotions; practical reason; affiliation; concern for other species; play; and control over one's environment [34].

As used in the ICF, the capabilities approach offers a holistic metric to determinations of health and well-being based on individuals' development of abilities aligned with the personal, local, regional, national, and global infrastructures—of educational, occupational, medical, recreational, and social opportunities—that are necessary to support that development. In matter-of-fact straightforwardness, WHO admits "Disability is part of the human condition" [35]. WHO argues further:

*[The] ICF is named as it is because of its stress is on health and functioning, rather than on disability. Previously, disability began where health ended; once you were disabled, you were in a separate category. We want to get away from this kind of thinking. We want to make [the] ICF a tool for measuring functioning in society, no*  *matter what the reason for one's impairments. So, it becomes a much more versatile tool with a much broader area of use than a traditional classification of health and disability.*

*This is a radical shift. From emphasizing people's disabilities, we now focus on their level of [functioning and] health [36].*

#### **4.2 A radical shift in understanding disability**

The ICF distinguishes between body functions, body structures, activities and participation, and environmental supports or lack thereof. To use the language of more common parlance: the functions reflect the purpose of mental, sensory, voice, organ, metabolic, reproductive, neural-muscular-skeletal, and skin systems; the structures refer to the engagement of procedures or steps involved with voluntary and involuntary movement. Activities and participation consider the degree to which individuals engage both functions and structures from cognition, affect, and locomotion, to self−/family−/community−/social−/civic-care. Environmental factors include considerations of the presence or absence of support for integral human development and flourishing.

Thus, given the complexities of functions and structures, disabilities fall into one or multiple classifications. In a similar vein, many people have co-occurring symptomatic dysfunctions, particular disabilities, and health complications with their primary mental, sensory, voice, organ, metabolic, muscular-skeletal disability. Under the Americans with Disabilities Act (ADA), the categories that qualify a person for accommodations of individualized support or relief are expressed in physical or mental impairments that interfere with major life activities [37]: Affective Disorders, Autism, Blindness, Cognitive Disability, Deafness, Emotional/Development Delay, Hearing Impairment, Intellectual Disability, Muscular/Physical/Skeletal Impairment, Neurological Impairment, Other Health Impairment, and Specific Learning Disability. These initiatives and legal precedents cohere with a baseline understanding of human capability that takes the contexts and particularities in which individuals and communities live as key to unlocking and supporting everyone's basic human functioning capabilities. Nevertheless, "People with disability are characterized by low human and social capital" [38]. Thus, to consider health on the basis of functional capabilities development is both promising and dangerous for people with disability. Promising since focus is placed on the determinations of an individual's capabilities and efforts in collaboration with social systems to develop those capabilities; dangerous since location will determine access to those necessary support systems. As a cause and consequence of disability, poverty remains the single most difficult obstacle to overcome, and poverty is directly related to an individual's ability to both develop and then exercise her/his basic functioning capabilities and thereby to thrive.

#### **5. The difference of radical bioethics**

The thing I propose as "radical" here is not in the sense of "protocol-be-damned" but in the more mundane and more nuanced frame of the ways in which a fundamental set of attitudes and actions can take hold in matters pertaining to bioethics in general, to the subject of disability and, more importantly, toward persons with disability in particular. The radical nature of this inquiry hearkens to the origins of the discipline of bioethics begun with the Hastings Center in New York (1969),

#### *Radical Bioethics: Difference, Disability, and Desiderata DOI: http://dx.doi.org/10.5772/intechopen.97654*

the Kennedy Institute for Ethics at Georgetown University (1971), and to Van Rensselaer Potter (1970), the oncologist who coined the term (at least in its English usage) [39]. Potter was particularly interested in the intersections and shared information of findings between the biological sciences and the humanities so as to ensure the benefits of research would yield results that attend to real persons and the eco-systems that support life: "global in scope, transdisciplinary in method, and, most importantly, compelled by a commitment to action that demanded personal engagement with social issues" [40]. This inquiry is radical in its adherence to the foundations of the discipline per Potter and our early colleagues at the Hastings Center and Kennedy Institute—many if not most of whom were trained as undergraduate students in philosophical and/or theological disciplines and for whom the sciences of medical care and interventions were perforce designed for human health and the social good. Further, my project invites you to adopt this interdisciplinary approach of a radical bioethics of dependence on the whole sphere of human commerce, with dependence as a normative key thereby for all persons inclusive of persons with disability across the millennia.

Difference is key to appreciating the diversity of persons and the perhaps even greater diversity of experiences among people with disability as equal to those among the general population. In order to ensure a comprehensive view, the insights of sociological critiques, which approach bioethics with quasi casuistry from the particularity and context of specific cases, offer a compelling argument that attends to lived experience, institutional culture, and structural injustice as the starting places to uncover the realities that honor persons with disability [41]. These approaches recognize that determinations of functioning capabilities depend upon considerations of interpersonal relations, institutional structures, and the overall social world wherein the subjects of concern, whether persons with disability or women or people of color, are situated in real time and place.

Moreover, "We cannot reduce the complexity of disability to either a biological problem, a psychological problem, or a social problem" [42]. All the factors of an individual's life must be considered and interventions—of medical and rehabilitation kinds, assistive devices, psychological support, barrier removal, welfare benefits, legal protections, and cultural change—must be engaged at different and particular levels for the benefit of the individual in need of care (there is no one protocol that fits all persons adequately). As many in the field of Disability Studies argue forcefully, disability may present as a health concern, but it is more an issue of social and economic concern. As noted above, across the world people with disability lack access to basic health and rehabilitative services as well as a lack of social support in the development of their basic human functioning capabilities. "They face barriers and prejudice, or poorer quality of healthcare. This [subpar access to care] means their health outcomes are worse—not as a result of their underlying impairments, but because of failures of [access to] general care" [43].

But what is difference at its root? Difference is a condition of being or a relation of distinction or diversity between one thing or person and another. An older Latin connotation points difference in the direction of diversity and is suggestive of variety, a point of dissimilarity but similar enough as to be recognizable as this or that thing or person. I have argued that diversity is the distinguishing feature of all creation, human beings included [44]. And I argue that diversity is the signature of God's handiwork throughout the known world and beyond. I recognize this diversity as God's own "calling card" and the way that God, in the Christian tradition, reveals Godself to us in relation with self and with others.

#### **6. Radical bioethics: desiderata**

I have long avoided the question of desire in Ref. to interrogating my own life and its wondrously circuitous and amazing turns except to ponder the opportunities given alongside the choices made that brought me to this moment in time, and to give thanks. I've led a charmed life, not without roadblocks here and there but, charmed, nonetheless. For an even more conscious period of time, I have avoided the question of desire in Ref. to the lives of people with disability. I like to think that this avoidance is rooted in a posture of humility by virtue of not knowing in any intimate sense what life is like in another person's shoes. I cannot truly fathom another person's "longing for something lost or missed," "to feel the loss of," or "to be wanting" [45], the root meaning of desire. Nevertheless, I am drawn now into this subject in recognition of the sad history of medical and social treatment that people with disability have experienced across the millennia from exposure to bullying, abuse, and murder—and to conversations that many academics, medical professionals, and policy makers have regarding the spoken and unspoken assumptions that "they"/people with disability would be better off dead. I am drawn also into the subject of desiderata by genuine calls initiated by some persons with disability and their family members, friends, and caregivers for interventions that promise rightly to relieve some of the conditions—especially physical pain and the internalized suffering of rejection—that compromise human flourishing.

"Disability, in everyday thought, is associated with failure, with dependency, and with not being able to do things. [Many of the nondisabled] imagine it must be miserable to be disabled. [But] both empirical evidence and anecdotal testimony reveals that for many people with disabilities, life is surprisingly good" [46]. Moreover, when asked, many people with lifelong disability say, "we don't want to be cured." For many, except for bouts of pain (it is initially very different for people who acquire disability in their teen and adult years), their lives are fulfilling the way they are and their disability is part of their identities such that it is near impossible to envision a life without disability. "The medical focus of cure and change [is] linked to an assumption that disabled people want to be cured. … The dominant discourse fail[s] to recognize disability as a desired differentness, which can be core to an individual's identity" [47].

Despite the best of intentions of family members and caregivers, like the nondisabled, persons with disability are themselves the principal subjects of their own lives and desires and they are thereby entitled to the exercise of autonomy. I am presuming a degree of cognitive and communicative autonomy that may be absent on account of age or developmental disability. Age aside, unfortunately, their desires were rarely taken into account across the standard practices of paternalism, such that past discussions in the medical arena on life with disability were often limited to questions of "to treat or not to treat" (and to let die) [48]. Today, with increasing Disability Rights Advocacy and given the voices of people with disability on the subject of cure, questions of intervention point more directly toward facilitating life with disability through barrier removal alongside of relief for sickness when autoimmune responses or influenza or cancer or diabetes or other calamity present. Thus, not unlike preferred choices when it comes to the dinner menu, decisions regarding this or that intervention, care protocol, or cure demand the exercise of personal autonomy and must be solicited from persons with disability in as equally an informative measure and accessible language as are decisions solicited from the nondisabled: the desires of people with disability must be honored.

As I return then to desiderata, a minimum desire among the communities of people with disability is to recognize their agency. Granted, the spectrum of

#### *Radical Bioethics: Difference, Disability, and Desiderata DOI: http://dx.doi.org/10.5772/intechopen.97654*

conditions that qualify as disabling are themselves diverse and often overlapping, both identity and agency diversities will emerge between physical, cognitive, and developmental disabilities but social stigma—the historically definitive construction of people with disability as inferior "to the main" and, as such, "other"—remains a common experience across the spectra. The de-construction of stigmatizing "otherness" remains the principal desiderata of my work. From that recognition, the tangible desires voiced by people with disability include minimally [49]: 1) the removal of barriers both physical and attitudinal to wholesale inclusion throughout the many avenues of social commerce—oppression remains the single most problematic of personal barriers to overcome; 2) reasonable accommodations to facilitate participation (e.g., accessible communication formats like sign language, braille, and illustrations); 3) an overall slower pace in language and in movement from place to place and for task to task; 4) attention and equitable access to basic and critical healthcare, education, and employment; and perhaps most of all 5) friendship and other personal relationships beyond kith and kin in educational, social, commercial, employment, political, recreational, and religious arenas.

What else is to be desired?

Since many disabilities are acquired over the course of a person's life, prevention of disabling impairments is an obvious desire. Hence, practical initiatives to reduce acquired disability include hard hats and other protective gear for manual laborers, immunizations from communicable diseases, reduction of exposure to hazardous materials, balanced diet for all and nutritional support especially for women who are pregnant or planning pregnancy, moderate alcohol and other "recreational" drug consumption, respect for speed limits and traffic conditions, avoidance of violent games and guns. We delude ourselves into thinking that any of us are immune from any of these eventualities.

On immediately practical and tangible levels, people with disability globally face obstacles to living and to living well that many of us see only as voyeurs during newscasts or from charity appeals for help. But the daily needs of most people with disability are embarrassingly simple: mobility aids like wheelchairs and rollators, barrier removal, reliable electricity, access to potable water, protein and carbohydrate, contained human and animal waste, basic healthcare and primary education. Let us recognize that meeting the desires of people with disability is not rocket science but, until we break free of these attitudinal and ideological barriers to recognition that people with disability are people first, these basic needs of common goods remain out of reach. It's rather simple to admit, but not easy to make the changes necessary for a tomorrow that all can better enjoy.

#### **7. Concluding thoughts on radical bioethics**

I started this work with an invitation to consider today's more than one billion people with disability as one of the most diverse populations—15% to potentially 25% of the 7.6 billion people worldwide. This population is a mass of people relegated to the margins of the larger social groupings to which they belong. In a time when gender, race, and bio-ecological diversity are championed and barriers to inclusion dismantled for some, the margins of human commerce to which many if not most people with disability are consigned are no longer tolerable.

Truth be told, medical and healthcare professionals have approached care concerning persons with disability with a jaded view and a jaded past regarding their worth as marginal at best or their status as less than deserving of either routine or critical care. In response, I suggest, this "radical bioethics" that 1) invites healthcare and bioethics professionals to recognize that a patient with disability

is a patient first; 2) points to a lack of attention on the part of these professionals and the discipline of bioethics to be aware of the similarities and differences that disability presents in deliberations of treatment protocols; and 3) as WHO admits, "from emphasizing people's disabilities, we [have made a radical shift to] now focus on their level of [functioning and] health." Thus, following the lead of members of the communities of disability who have engaged legal argumentation on behalf of their vulnerable sisters and brothers with disability who have not received a fair hearing regarding their care, this disability consciousness is best informed before considerations about medical interventions available to persons with disability are pronounced.

As Professor of Law and Bioethics Alicia Ouellette observes:

"bioethicists tend to support individual choices to refuse medical care, family decision making, and advance directives. Members of the disability community are often skeptical of or opposed to these practices. Some disability experts view medically assisted nutrition and hydration as a basic human right; bioethicists tend to think of medically assisted nutrition and hydration as no different from other medical treatments [that may be withheld or withdrawn]. Bioethicists support efforts of doctors to "fix" physical impairments; disability scholars question the need to "fix" the bodies of individuals with disability and look instead for societal solutions. Many bioethicists view persistent vegetative state as something entirely different from other disabling conditions; some disability activists deny those differences. [And] many people in bioethics seek to resolve individual cases without taking into account social and community concerns, whereas social and community concerns are central to the disability community" [50].

Desiderata.

And a final word regarding the title of this work. Philosopher and lawyer Max Ehrmann wrote the poem "Desiderata" in 1927, it was published posthumously in 1948. Its popularity may have waned of late but we human beings continue to burn with desires/*desiderata* of many kinds, some mundane and others profound. Whatever the desires of people with disability, their family members, friends, those who care for and about them, and those who do not, I think we can take Ehrmann's word to head and heart in our strivings for a better tomorrow:

*Go placidly amid the noise and haste, and remember what peace there may be in silence.*

*As far as possible, without surrender, be on good terms with all persons. Speak your truth quietly and clearly; And listen to others, even to the dull and ignorant; they too have their story. …*

*Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; [And] you have a right to be here.*

*…*

*Radical Bioethics: Difference, Disability, and Desiderata DOI: http://dx.doi.org/10.5772/intechopen.97654*

#### **Author details**

Mary Jo Iozzio School of Theology and Ministry, Boston College, Boston, MA, USA

\*Address all correspondence to: mary.jo.iozzio@bc.edu

© 2021 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/ by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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*Radical Bioethics: Difference, Disability, and Desiderata DOI: http://dx.doi.org/10.5772/intechopen.97654*

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[28] Shakespeare. Disability, 5

[29] Among others, see Swinton J. Becoming Friends of Time: Disability, Timefullness, and Gentle Discipleship. Baylor University Press, Waco, TX; 2017; Burch S and Rembis M. Disability Histories. University of Illinois Press, Urbana; 2014; Erevelles, Disability and Difference in Global Contexts; Reynolds TE. Vulnerable Communion: A Theology of Disability and Hospitality. Brazos Press, Grand Rapids, MI; 2008; and Mitchell DT and Snyder SL. Narrative Prosthesis: Disability and the Dependencies of Discourse. University of Michigan Press, Ann Arbor; 2000

[30] United Nations, Convention on the Rights of Persons with Disabilities. New York, 2006; Art. 4.1; https://www. un.org/development/desa/disabilities/ convention-on-the-rights-of-personswith-disabilities/article-4-generalobligations.html

[31] UN, CRPD, Art 10; https://www. un.org/development/desa/disabilities/ convention-on-the-rights-of-personswith-disabilities/article-10-right-tolife.html

[32] World Health Organization. World Report on Disability. WHO and The World Bank, Geneva; 2011; https:// www.who.int/disabilities/world\_ report/2011/en/

[33] See Sen A. Collective Choice and Social Welfare: An Expanded Edition. Harvard University Press, Cambridge; 2017; Nussbaum M. Frontiers of Justice: Disability, Nationality, and Species Membership. Harvard University Press, Cambridge; 2006; and Sen A. Capability and Well-being, in Nussbaum and Sen, eds, The Quality of Life. Clarendon Press, Oxford; 1993; 30-53

[34] See Nussbaum M. Capabilities and Human Rights. Fordham Law Review. 1997;**66**(20):273-300 at 287-288

[35] WHO. First World Report on Disability. Geneva: WHO, 2011; 4

[36] WHO. Towards a Common Language for Functioning, Disability and Health: ICF. World Health Organization, Geneva; 2002; 3 https:// www.who.int/classifications/icf/ icfbeginnersguide.pdf?ua=1.

[37] I am here combining the terms of Federal Regulations regarding the Americans with Disabilities Act and the specific disabilities covered for children under the terms of the Individuals with Disabilities Education Act (re-authorized 2004, amended in Every Student Succeeds Act of 2015). See ADA. Law/Regulations. United States Department of Justice, Civil Rights Division; 2010, https://www.ada. gov/2010\_regs.htm, and Individuals with Disabilities Education Act,

"About IDEA," US Department of Education n.d. https://sites.ed.gov/idea/ about-idea/

[38] Palmer M. Disability and Poverty: A Conceptual Review. Journal of Disability and Public Policy 2011;**21**.4: 210-218. On the agenda of capitalism and the impoverishment of people with disability and other minorities, see Erevelles, Disability and Difference in Global Contexts

[39] See Rensselaer Potter V. Bioethics: The Science of Survival. Perspectives in Biology and Medicine. 1970;**14**(1): 127-153

[40] Johnson J. Bioethics as a Way of Life: The Radical Bioethics of Van Rensselaer Potter. Literature and Medicine. 2016;**34**(1): 7-24 at 8

[41] Among others, see Sherry M. Disability and Diversity: A Sociological Perspective. Nova Science Publishers, New York; 2008; Cheng RP. Sociological Theories of Disability, Gender, and Sexuality: A Review of the Literature. Journal of Human Behavior in the Social Environment 2009;**19**(1): 112-122; and Erdman JN. Commentary: Bioethics, Human Rights, and Childbirth. Health and Human Rights Journal 2015;**17**(1) https://www.hhrjournal.org/2015/06/ commentary-bioethics-human-rightsand-childbirth/

[42] Shakespeare, Disability, 21.

[43] Shakespeare, Disability, 88.

[44] See Iozzio. Radical Dependence and the Imago Dei. Christian Bioethics. 2017;**23**(3): 234-260

[45] See OED Online. s.v. desire, n., 1 and 5; s.v. desire, v. 4

[46] Shakespeare, Disability, 46

[47] Among others, see Beauchamp-Pryor K. Impairment, Cure, *Radical Bioethics: Difference, Disability, and Desiderata DOI: http://dx.doi.org/10.5772/intechopen.97654*

and Identity: 'Where do I fit in?' Disability & Society 2011;**26**(1): 5-17 at 6; many online forums include discussions concerning the pursuit of cure or acceptance of life with disability. Among others, see eparent.com. Curing or Living with Disability: Your Choice Would be …; Special Needs Resource. http://www.eparent.com/features-3/ curing-living-disability-choicecommentaries/. Klenke M. How Society's Focus on 'Curing' Disability Can Harm Disabled People. The Mighty https://themighty.com/2017/09/ societys-focus-on-curing-disabilitycan-harm-disabled-people/ September 13, 2017. Wentzel J. Researchers Discuss Ethical Considerations of 'Curing' Disabilities. Vanderbilt University https://news.vanderbilt.edu/2011/04/14/ curing-disabilities-ethics/ April 14, 2011

[48] Among others, see Mercurio MR. The Aftermath of Baby Doe and the Evolution of Newborn Intensive Care. Georgia State University Law Review 2009;**25**(4): 835-863; White M. The End at the Beginning. The Ochsner Journal 2011;**11**(4): 309-316; and Annas Ag. The Case of Baby Jane Doe: Child Abuse or Unlawful Federal Intervention. American Journal of Public Health. 1984;**74**(7): 727-729

[49] Among others, see Wong A, ed. Resistance & Hope: Essays by Disabled People, Crip Wisdom for the People. Disability Visibility Project/https:// wordpress.org, 2018; ADAPT, Free Our People, https://adapt.org (2019); Shakespeare, Disability, 48-50

[50] Ouellette A. Bioethics and Disability: Toward a Disability-Conscious Bioethics. Cambridge University Press, New York; 2011. p. 363-364.

Section 3
