**1. Introduction**

The extension and transferability of what has come to be known as PC [1, 2] has become stalled in some countries [3]. Many believe it to be a consequence of inadequate funding or even political indifference [4]; others question whether it might be due to lack of conceptual intelligibility and transferability across languages and call for a fresh PC [5, 6] definition that incorporates its philosophy and ethos while being fully transferable across countries and cultures.

But what can be said to constitute, identify and define the *Palliative Care Ethos?* With the patient at its centre, PC looks for direction in their own and their loved ones' narratives:

*'You can tell them all that it was all right', was the unpretentious and comforting message Cicely Saunders was asked to pass on to a lady's relatives once she had died. It was important for that patient to let her loved ones know that she had not gone through a strange, dramatic, or just unlucky experience, ( … ) written up as such without sentimentality or sensationalism, but a common experience ordinary people have always faced, writes D. Clark* [7]*.* A good example of the rich exchanges full of meaning and depth that can take place within the ordinary *delivery* of PC. So beautifully common in many ways; and yet, so elusive to capture in a defining snapshot to apprehend its uniqueness.

PC changes the perspective from which the world sees health and social care, since its philosophy gives standing to the multiplicity of beliefs and communication

Contemporary literature [3] shows researchers' acknowledgement of historically

patterns manifest in the collective of suffering patients. This motivates the

*The Challenges Facing Palliative Care Advocacy: What Is in a Name?*

relevant milestones in PC roots from bygone days and subsequent evolution, including Palliative Medicine being recognized in some countries as a specialized field of training and work. There is also explicit acknowledgment of the difficulties affecting uniform implementation of its philosophy and principles. Some projects centre future advances and growth in PC provision with promising results in relation to identifying the founding ethos of PC by reproducing its initial way of showing the depth of society's concern for its more vulnerable members, based on its values when alleviating the suffering experienced while facing aging, disease, life

Such ventures highlight the importance of setting the scene for possible advances to integrate ethical, legal and social implications in years to come to benefit the many likely to need it. It likens the development of the field to a journey; one that sets off on the knowledge the fullness of meaning and richness of PC can

A sound understanding of PC foundational bases [2, 14] facilitates answers to many questions needing an answer, although some voices of those who seek a more bio-physical-psychological palliative care model strongly disagree. It is, for example, motivating to take into account the different creative initiatives born in clinical settings in the context of the COVID-19 pandemic; it confirms how man continues to look for ways to alleviate suffering in the most challenging situations making use of what they have to hand. In our time, the inventiveness brought to the bedside of the dying has been astonishing, giving hope to those of us who want to offer holistic care to those who see their lives threatened, including aging and the natural end of

This chapter will aim to identify what constitutes the enduring ethos of PC as it continues to evolve and grow beyond the walls of St Christopher's Hospice, flagship of Cicely Saunders's endeavor to comfort the dying by letting them know that they matter because they are who they are; and they will matter to us until their last

Looking into what is understood by this vocable takes us along surprising trails as a Work of Mercy, with deep ancestral Judeo-Christian roots [2]. It is depicted well in both the Old and the New Testaments, for example, in the Parable of the Good Samaritan and many conceivable and incomprehensible healings. It can be followed in the labour of hospital religious orders over the centuries which persists to this day in initiatives such as the contemporary Pastoral of Health. It is doubtlessly, care that has historically been largely provided by Christian orders that hold

In our time, proud of its origins, it is a formalized and widely recognized as a growing medical field which has its foundational modern roots in (Dame) Cecily Saunders's concern and work to remedy the poor medical care being provided to dying hospital patients. Over time, its medicine had shifted [15] the focus away from the needs of those who could no longer benefit from evolving technology and life-saving treatments. But it did not stop there as the medical world continue in its

Cicely Saunders, established unambiguous foundations for the Modern Hospice Movement [2], one of which is to be found in the togetherness of Head (mind) and

to the divine 'Thou shall not kill', and are moved to love and compassion.

articulation of a good enough ethic.

*DOI: http://dx.doi.org/10.5772/intechopen.97367*

threatening pathologies, dying and death.

only be approached by taking its long view.

life, by some entity threatened life expectancy.

**3.2 Modern hospice movement evolution**

way to ignore those dying in its institutions.

moment of their lives.

**293**

'The joy, purpose and meaning of medicine has been codified, sterilized, protocolised, industrialized and regimented'says Dr. Eric Levi [8]: a stark reminder of the reality in ever-advancing health systems which seem to have forgotten the more *artistic* aspects of medicine which allows compassion to highlight our common humanity, a fundamental aspect of PC.

#### **2. The purpose of medicine**

Medicine is as old as humankind itself [9]. At first it was mythological, the causes of diseases were attributed to the gods or spirits, subsequently acquiring a more scientific character as it was recognized that diseases had physical or environmental causes.

Hippocrates has been considered the father of scientific medicine. The Hippocratic Corpus [10], with its 53 books, has philosophical and ethical writings such as the Hippocratic Oath and Aphorisms, as well as others of medical order consisting of 7 books on Epidemics, 4 on the Regime, 4 on Diseases, 2 on Predictions, 2 on Women Diseases, Instruments of reduction of Joints and Fractures. Writings used by doctors to learn for centuries. One of these texts, the Hippocratic Oath, remains valid- It concisely points out the duties of doctors, duties that were not imposed on them by the authority of the moment but rather, somewhat self-imposed after assessing the value and importance of their own work. This Oath is a model of professional behavior not only for doctors but for all professions.

Medicine is finite, limited. People will die. Diseases will change, but it always comprises great respect for human weakness. Sometimes we will have patients with acute problems, sometimes chronic conditions, some patients will be conscious and sometimes unconscious, sometimes it will be curable diseases and sometimes incurable, sometimes we will have friendly patients, sometimes we will have patients with diseases that we like to treat and sometimes with pathologies that for the doctor are unpleasant, but they are all our patients, all expect us to treat them with respect, they want to feel taken care of, they want humanitarian treatment.

Our medicalised modern cultures tend to render reason and mystery mutually exclusive, defining "death by disease" as failure, and dying as disgraceful. Providers and policymakers alike marginalize aging and dying individuals, while formulating largely ineffective strategies to prevent deaths from violence or epidemics, terrorism, and famines. Policies to nurture care and support the elderly, those with long terms conditions and children [11–13] born with congenital medical conditions, malformations or different capacities, are too often inadequate and departed from reality. They tend to be declarations of intentions lacking in budgetary provision.

#### **3. Palliative care**

#### **3.1 Meaning and fullness of worth within the health and social contexts**

It is palliative care mission to demonstrate that each life is morally significant to its natural end, restoring patients' and families' quality of life where possible, and attending meticulously to the dying period when necessary [3, 4].

#### *The Challenges Facing Palliative Care Advocacy: What Is in a Name? DOI: http://dx.doi.org/10.5772/intechopen.97367*

*'You can tell them all that it was all right', was the unpretentious and comforting message Cicely Saunders was asked to pass on to a lady's relatives once she had died. It was important for that patient to let her loved ones know that she had not gone through a strange, dramatic, or just unlucky experience, ( … ) written up as such without sentimentality or sensationalism, but a common experience ordinary people have always faced, writes D. Clark* [7]*.* A good example of the rich exchanges full of meaning and depth that can take place within the ordinary *delivery* of PC. So beautifully common in many ways; and yet, so elusive to capture in a defining snapshot to apprehend its uniqueness. 'The joy, purpose and meaning of medicine has been codified, sterilized, protocolised, industrialized and regimented'says Dr. Eric Levi [8]: a stark reminder of the reality in ever-advancing health systems which seem to have forgotten the more *artistic* aspects of medicine which allows compassion to highlight our common

*Suggestions for Addressing Clinical and Non-Clinical Issues in Palliative Care*

Medicine is as old as humankind itself [9]. At first it was mythological, the causes of diseases were attributed to the gods or spirits, subsequently acquiring a more scientific character as it was recognized that diseases had physical or environmental causes. Hippocrates has been considered the father of scientific medicine. The Hippocratic Corpus [10], with its 53 books, has philosophical and ethical writings such as the Hippocratic Oath and Aphorisms, as well as others of medical order consisting of 7 books on Epidemics, 4 on the Regime, 4 on Diseases, 2 on Predictions, 2 on Women Diseases, Instruments of reduction of Joints and Fractures. Writings used by doctors to learn for centuries. One of these texts, the Hippocratic Oath, remains valid- It concisely points out the duties of doctors, duties that were not imposed on them by the authority of the moment but rather, somewhat self-imposed after assessing the value and importance of their own work. This Oath is a model of

Medicine is finite, limited. People will die. Diseases will change, but it always comprises great respect for human weakness. Sometimes we will have patients with acute problems, sometimes chronic conditions, some patients will be conscious and sometimes unconscious, sometimes it will be curable diseases and sometimes incurable, sometimes we will have friendly patients, sometimes we will have patients with diseases that we like to treat and sometimes with pathologies that for the doctor are unpleasant, but they are all our patients, all expect us to treat them with respect, they want to feel taken care of, they want humanitarian treatment. Our medicalised modern cultures tend to render reason and mystery mutually exclusive, defining "death by disease" as failure, and dying as disgraceful. Providers and policymakers alike marginalize aging and dying individuals, while formulating largely ineffective strategies to prevent deaths from violence or epidemics, terrorism, and famines. Policies to nurture care and support the elderly, those with long terms conditions and children [11–13] born with congenital medical conditions, malformations or different capacities, are too often inadequate and departed from reality. They tend to be declarations of intentions lacking in budgetary provision.

**3.1 Meaning and fullness of worth within the health and social contexts**

attending meticulously to the dying period when necessary [3, 4].

It is palliative care mission to demonstrate that each life is morally significant to its natural end, restoring patients' and families' quality of life where possible, and

professional behavior not only for doctors but for all professions.

humanity, a fundamental aspect of PC.

**2. The purpose of medicine**

**3. Palliative care**

**292**

PC changes the perspective from which the world sees health and social care, since its philosophy gives standing to the multiplicity of beliefs and communication patterns manifest in the collective of suffering patients. This motivates the articulation of a good enough ethic.

Contemporary literature [3] shows researchers' acknowledgement of historically relevant milestones in PC roots from bygone days and subsequent evolution, including Palliative Medicine being recognized in some countries as a specialized field of training and work. There is also explicit acknowledgment of the difficulties affecting uniform implementation of its philosophy and principles. Some projects centre future advances and growth in PC provision with promising results in relation to identifying the founding ethos of PC by reproducing its initial way of showing the depth of society's concern for its more vulnerable members, based on its values when alleviating the suffering experienced while facing aging, disease, life threatening pathologies, dying and death.

Such ventures highlight the importance of setting the scene for possible advances to integrate ethical, legal and social implications in years to come to benefit the many likely to need it. It likens the development of the field to a journey; one that sets off on the knowledge the fullness of meaning and richness of PC can only be approached by taking its long view.

A sound understanding of PC foundational bases [2, 14] facilitates answers to many questions needing an answer, although some voices of those who seek a more bio-physical-psychological palliative care model strongly disagree. It is, for example, motivating to take into account the different creative initiatives born in clinical settings in the context of the COVID-19 pandemic; it confirms how man continues to look for ways to alleviate suffering in the most challenging situations making use of what they have to hand. In our time, the inventiveness brought to the bedside of the dying has been astonishing, giving hope to those of us who want to offer holistic care to those who see their lives threatened, including aging and the natural end of life, by some entity threatened life expectancy.

This chapter will aim to identify what constitutes the enduring ethos of PC as it continues to evolve and grow beyond the walls of St Christopher's Hospice, flagship of Cicely Saunders's endeavor to comfort the dying by letting them know that they matter because they are who they are; and they will matter to us until their last moment of their lives.

#### **3.2 Modern hospice movement evolution**

Looking into what is understood by this vocable takes us along surprising trails as a Work of Mercy, with deep ancestral Judeo-Christian roots [2]. It is depicted well in both the Old and the New Testaments, for example, in the Parable of the Good Samaritan and many conceivable and incomprehensible healings. It can be followed in the labour of hospital religious orders over the centuries which persists to this day in initiatives such as the contemporary Pastoral of Health. It is doubtlessly, care that has historically been largely provided by Christian orders that hold to the divine 'Thou shall not kill', and are moved to love and compassion.

In our time, proud of its origins, it is a formalized and widely recognized as a growing medical field which has its foundational modern roots in (Dame) Cecily Saunders's concern and work to remedy the poor medical care being provided to dying hospital patients. Over time, its medicine had shifted [15] the focus away from the needs of those who could no longer benefit from evolving technology and life-saving treatments. But it did not stop there as the medical world continue in its way to ignore those dying in its institutions.

Cicely Saunders, established unambiguous foundations for the Modern Hospice Movement [2], one of which is to be found in the togetherness of Head (mind) and Heart (compassion and our own vulnerability) when caring for these people. It was not, she explained, an idea that occurred to her, but rather the mandate received from David. David Tasma, a Polish Jew, mortally ill with pancreatic cancer, when, broken by the profound suffering he was experiencing, as he was facing his own mortality so far away from his own country and those he knew and loved well asked her:

The clinical situation might be extremely complex leading to a binary status quo in which the options are either vigil and in unbearable anguish or unconscious and calm. In this scenario, the alternatives are either dying with intolerable suffering while being aware of it or dying comfortably while unconscious. There is no real choice here – the only morally good course is to address the patient's symptoms accepting the side effect of sedation that inevitably accompanies this. The Lex Artis requires that all intervention is proportionate and relief of symptoms and suffering

A frequently held fear or misapprehension when working to control symptoms is that the therapeutic maneuvers used in the process might be also shortening life and hastening death. Medication used need to be clearly explained regarding its purpose, effects and side effects; morphine is regarded with particular fear and suspicion. However, in most situations its careful titration following best practice guidelines under specialist's advice will alleviate symptoms with no noticeable shortening of life. On the contrary, we should not underestimate the potentially life-shortening effect caused by the stress, and distress, of severe uncontrolled

PC is certainly able to deliver sound, scientific based care with the vulnerable friendship of the heart. Not many could openly object to these foundations. Yet, many committed practitioners ignore them in their daily practice. Could there be a different reason behind? Or, could it be due to a lack of proper understanding of its

Approaching Palliative Care from the point of view of its conceptual basis opens a fascinating quandary for the studious physician when the need to clarify to others, patients, family, cares, health and social professionals, society in general, what PC is and what is not, presents itself. It takes time and effort to work through it all when helping someone accept our help in a timely fashion. Communicating it in a

There are definitions put forward by organizations such as WHO and IAHPC. And there are also well defended theses, such as Randall's, to deconstruct and determine how such definitions are rather aspirational "declarations of intention". WHO's [17, 18] definition includes quality of life in their declaration of intentions. Unquestionably, a very important aspect of the palliative philosophy is its commitment to taking care of well-being by excellent symptom control to help maintain the quality of that life for as long as it such. For many, however, life -in its sanctity- cannot be classified and protected in direct relation to its perceived quality

While life itself is an objective good, necessary to enjoy many others, its quality or lack of it, is a subjective good, dependent on many factors. For example, for many, happiness is essential to life and it is the pursuit of that happiness that gives meaning to life. It is particularly suggestive to understand the quality of life perceived by those who have learned to live life through the small, insensitive things that adorn it. While others think that the "core" of life can only make a concrete

Dr. Pettus [19], a political sociologist claims that our modern and medicalized cultures make reason and mystery mutually exclusive, defining death from illness as a failure, and dying as shameful. Suppliers and legislators similarly marginalize older citizens and the dying, while formulating ineffective strategies largely to prevent deaths from violence or epidemics, terrorism or famine. The goal of PC is to support those with an incurable disease so that they can live the rest of their lives as well, and with as much sense as possible, giving them the necessary support when, eventually, they reach the natural end of their lives, and die from their

sense among those who believe in the Transcendent, be it God or not.

sought at all times by proportionate means, and regular reviews.

*The Challenges Facing Palliative Care Advocacy: What Is in a Name?*

*DOI: http://dx.doi.org/10.5772/intechopen.97367*

symptoms. This is an area in which good *Palliative Care* is able to help.

place in science, health and social care?

conceptual nugget what PC is a complex task.

at a given time.

illness.

**295**

"Can you say something to comfort me?" taking Cicely Saunders away from *doing* something to him, or giving him some medication to soothe his distress. A little later, he added "I only want what is in your mind and in your heart."

The Modern Hospice Movement, generally known as *Palliative Care* outside Great Britain, was thus born to use scientific rigor to research and treat symptoms such as pain. Its focus on the holistic needs of patients: physical, emotional, social and spiritual, without forgetting the professional dimension. *Palliative Medicine* is the only medical specialty that recognizes care of the spiritual person as part of its mandate [16]. Its science and care are applicable to any person with an incurable, complex or life-limiting illness; its principles can be applied to that person's care from the time of diagnosis. This means good symptom management plus supportive and holistic care occurring alongside: it may be provided by any health care clinician, using the same principles to provide a 'Palliative Approach' to medical and nursing care.

*Palliative* is derived from the Latin word '*pallium*' meaning to cloak someone who is ill, sick, lonely or needing protection. Symptoms are eased even if the underlying condition be cured.

Maximizing wellbeing and nurturing the hope to maintain or improve perceived quality of life can be achieved in a variety of ways, however, it is imperative to guide all interventions by a common moral compass which indicate the manner by which teams allows someone to be themselves at what can be an extremely difficult time in their lives. PC strives to acknowledge the person as a whole - addressing snags affecting different aspects of their life. A multi-disciplinary approach supported by the skills of different professionals, pooled and utilized as necessary.

Hospices and Palliative Care Units alike house an ethos of care which should extend beyond their walls to places where symptoms need to be eased, the underlying condition not amenable to be cured [14].

#### **3.3 Limits of action: caring, not killing**

PC acknowledges the reality of death and seeks to assist patients and those around them to accept its inevitability accepting dying as a normal part of life, teaching that helping people to die well, i.e. "in peace". Nor should it be confused with actively helping people to die, i.e. to bring their deaths about.

Its distinction with euthanasia is at times obscured by claiming that the outcome (death) is the same for both and that the intention of both is to relieve suffering. These assertions are true, as far as they go, but there is a moral distinction between giving a "lethal injection" and the interventions that constitute palliative care. These interventions include the provision of symptoms relief by titrating medication against the symptoms. The aim being to achieve the best control of symptoms with the least side-effects, for which different medications are available: if one medication does not suit, there are usually others to try. *Giving the right medication for each symptom at the lowest dose necessary to alleviate the symptom.*

Sometimes, there might well be situations where relief of very difficult symptoms, such as pain that does not respond to analgesics and adjuvants or intractable shortness of breath and a number of catastrophic clinical events such as some hemorrhages or pulmonary embolism, can only be achieved by medication doses that result in deep sedation.

#### *The Challenges Facing Palliative Care Advocacy: What Is in a Name? DOI: http://dx.doi.org/10.5772/intechopen.97367*

Heart (compassion and our own vulnerability) when caring for these people. It was not, she explained, an idea that occurred to her, but rather the mandate received from David. David Tasma, a Polish Jew, mortally ill with pancreatic cancer, when, broken by the profound suffering he was experiencing, as he was facing his own mortality so

"Can you say something to comfort me?" taking Cicely Saunders away from *doing* something to him, or giving him some medication to soothe his distress. A little later, he added "I only want what is in your mind and in your heart."

The Modern Hospice Movement, generally known as *Palliative Care* outside Great Britain, was thus born to use scientific rigor to research and treat symptoms such as pain. Its focus on the holistic needs of patients: physical, emotional, social and spiritual, without forgetting the professional dimension. *Palliative Medicine* is the only medical specialty that recognizes care of the spiritual person as part of its mandate [16]. Its science and care are applicable to any person with an incurable, complex or life-limiting illness; its principles can be applied to that person's care from the time of diagnosis. This means good symptom management plus supportive and holistic care occurring alongside: it may be provided by any health care clinician, using the same principles to provide a 'Palliative Approach' to medical and

*Palliative* is derived from the Latin word '*pallium*' meaning to cloak someone who is ill, sick, lonely or needing protection. Symptoms are eased even if the

Maximizing wellbeing and nurturing the hope to maintain or improve perceived

quality of life can be achieved in a variety of ways, however, it is imperative to guide all interventions by a common moral compass which indicate the manner by which teams allows someone to be themselves at what can be an extremely difficult time in their lives. PC strives to acknowledge the person as a whole - addressing snags affecting different aspects of their life. A multi-disciplinary approach supported by the skills of different professionals, pooled and utilized as necessary. Hospices and Palliative Care Units alike house an ethos of care which should extend beyond their walls to places where symptoms need to be eased, the under-

PC acknowledges the reality of death and seeks to assist patients and those around them to accept its inevitability accepting dying as a normal part of life, teaching that helping people to die well, i.e. "in peace". Nor should it be confused

Its distinction with euthanasia is at times obscured by claiming that the outcome (death) is the same for both and that the intention of both is to relieve suffering. These assertions are true, as far as they go, but there is a moral distinction between giving a "lethal injection" and the interventions that constitute palliative care. These interventions include the provision of symptoms relief by titrating medication against the symptoms. The aim being to achieve the best control of symptoms with the least side-effects, for which different medications are available: if one medication does not suit, there are usually others to try. *Giving the right medication for each*

Sometimes, there might well be situations where relief of very difficult symptoms, such as pain that does not respond to analgesics and adjuvants or intractable shortness of breath and a number of catastrophic clinical events such as some hemorrhages or pulmonary embolism, can only be achieved by medication doses

with actively helping people to die, i.e. to bring their deaths about.

*symptom at the lowest dose necessary to alleviate the symptom.*

far away from his own country and those he knew and loved well asked her:

*Suggestions for Addressing Clinical and Non-Clinical Issues in Palliative Care*

nursing care.

underlying condition be cured.

lying condition not amenable to be cured [14].

**3.3 Limits of action: caring, not killing**

that result in deep sedation.

**294**

The clinical situation might be extremely complex leading to a binary status quo in which the options are either vigil and in unbearable anguish or unconscious and calm. In this scenario, the alternatives are either dying with intolerable suffering while being aware of it or dying comfortably while unconscious. There is no real choice here – the only morally good course is to address the patient's symptoms accepting the side effect of sedation that inevitably accompanies this. The Lex Artis requires that all intervention is proportionate and relief of symptoms and suffering sought at all times by proportionate means, and regular reviews.

A frequently held fear or misapprehension when working to control symptoms is that the therapeutic maneuvers used in the process might be also shortening life and hastening death. Medication used need to be clearly explained regarding its purpose, effects and side effects; morphine is regarded with particular fear and suspicion. However, in most situations its careful titration following best practice guidelines under specialist's advice will alleviate symptoms with no noticeable shortening of life. On the contrary, we should not underestimate the potentially life-shortening effect caused by the stress, and distress, of severe uncontrolled symptoms. This is an area in which good *Palliative Care* is able to help.

PC is certainly able to deliver sound, scientific based care with the vulnerable friendship of the heart. Not many could openly object to these foundations. Yet, many committed practitioners ignore them in their daily practice. Could there be a different reason behind? Or, could it be due to a lack of proper understanding of its place in science, health and social care?

Approaching Palliative Care from the point of view of its conceptual basis opens a fascinating quandary for the studious physician when the need to clarify to others, patients, family, cares, health and social professionals, society in general, what PC is and what is not, presents itself. It takes time and effort to work through it all when helping someone accept our help in a timely fashion. Communicating it in a conceptual nugget what PC is a complex task.

There are definitions put forward by organizations such as WHO and IAHPC. And there are also well defended theses, such as Randall's, to deconstruct and determine how such definitions are rather aspirational "declarations of intention".

WHO's [17, 18] definition includes quality of life in their declaration of intentions. Unquestionably, a very important aspect of the palliative philosophy is its commitment to taking care of well-being by excellent symptom control to help maintain the quality of that life for as long as it such. For many, however, life -in its sanctity- cannot be classified and protected in direct relation to its perceived quality at a given time.

While life itself is an objective good, necessary to enjoy many others, its quality or lack of it, is a subjective good, dependent on many factors. For example, for many, happiness is essential to life and it is the pursuit of that happiness that gives meaning to life. It is particularly suggestive to understand the quality of life perceived by those who have learned to live life through the small, insensitive things that adorn it. While others think that the "core" of life can only make a concrete sense among those who believe in the Transcendent, be it God or not.

Dr. Pettus [19], a political sociologist claims that our modern and medicalized cultures make reason and mystery mutually exclusive, defining death from illness as a failure, and dying as shameful. Suppliers and legislators similarly marginalize older citizens and the dying, while formulating ineffective strategies largely to prevent deaths from violence or epidemics, terrorism or famine. The goal of PC is to support those with an incurable disease so that they can live the rest of their lives as well, and with as much sense as possible, giving them the necessary support when, eventually, they reach the natural end of their lives, and die from their illness.

Painful and distressing deaths without palliative care or relief from physical pain, in remote areas, attract neither political attention nor budgets, says Pettus. A growing effort is being made to establish and advance Palliative Care's contextualized advocacy around the world, based on its own "ethos" and spirituality that ensures its implementation and availability for many.

different things in different languages. *Hospices*, as understood from its Anglo-Saxon use, are far more than mere buildings; they house a philosophy of human relationship and hosting which could be considered as direct descendants of the medieval form because behind their assertive philosophy sits a highly personal holistic approach which places the physical, emotional and spiritual welfare of

Still, many still identify them with places where patients go when there is nothing more to be done, where people go to die. The problem with this, is that much of the suffering that could be alleviated in the right space, is not, because it is

Much work is nowadays undertaken to facilitate the understanding of terminology in our field, many researchers look and write about palliative care. In Spain where it has been translated as `*Cuidados Paliativos`*, thus stressing its most physically relevant aspects of care. Research groups such as ATLANTES. Instituto Cultura y Sociedad. Universidad de Navarra look for its secret, which they call "The

Our own research to define the ethos of PC moves in the same lines, recalling The Little Prince affirmation "And now here is my secret, a very simple secret: It is only with the heart that one can see rightly; what is essential is invisible to the eye." [23], which links seamlessly with the thoughts of those pioneers whose legacy is now ours to work with and transmit forward "All those intangible values are expressed in concrete actions able to transmit unconditional acceptance and the

Having set its humanistic aspects, it is imperative to look for PC scientific

Much has been written and researched around "the scientific" and the Ethos of Science, which refers to the "toned affective complex of values and norms that is carried out to be binding on the man of science. Rules are expressed in form of

It is acknowledged that the end of all science is the extension of agreed knowl-

PC has a strong humanistic element but it is also science [25, 27]. Predictions are even more important in this field, where informed assumptions are regularly made to underpin decision-making as it is also science and, as such, it must be governed by laws ordering any other science. This issue, together with poor conceptualization, could have contributed to the deficient PC extension [28] and expansion; the fact that some have arrogated themselves the right to choose what aspects of the palliative philosophy and principles to apply, choosing them at convenience, either

Cicely Saunders is known to have been a woman of multiple interests which she followed by training to be a nurse, almoner and a doctor. She had other interests such a full understanding of Christianism, Philosophy and is considered to be a humanist. She liked to read and study the different aspects of things in depth, often citing authors and philosophers such as Francis Bacon. Philosophy as science certainly underpins the philosophy of the Hospice Movement. Understanding this,

edge and that it must be able to be explained through its technical methods: "empirically confirmed and logically coherent statements of regularities (these are

patients and their families at its heart.

*DOI: http://dx.doi.org/10.5772/intechopen.97367*

Intangible ".

**3.4 Scientific aspects**

often predictions)" [26].

*3.4.1 The science and its philosophy*

bearings.

**297**

left too late, thinking they are places one might go to die.

*The Challenges Facing Palliative Care Advocacy: What Is in a Name?*

affirmation of the patient's worth as a person [24].

instructions, prescriptions, preferences and licences" [25].

out of ignorance or neglect might have arrested its expansion.

Those who work advocating PC believe that, to be faithful, the its safeguarding should reflect the "ethos" of the hospice movement. This is a central concern for many, particularly concerned to understand how such ethos could be established and how it could dissipate into loss, disappearing. It is worth knowing the work done by those who care about those intangible aspects of the hospice movement that precisely make it so. A particular apprehension is the one that asks how the "ethos" could be lost by spreading more widely t is marketed while losing its wellfounded and carefully established training its approach to transmitting its philosophy and principles.

Cicely Saunders left a great number of written documents. This one is particularly representative of her work:

"The longer I work with the dying and their families, the more I learn about life and the small things that are so important to each one of us. Dying is never easy, it is done differently by each person. Fear of the unknown is what most of us can identify with. Having a terminal illness including diseases of cancer, MND and other neurological illnesses, Dementia will take us all, whether patient or a loved one, to places in our lives we would rather avoid and will often include fear of unknowns. How we often support our patients & families is to get alongside them as best we can and share some of our skills and experience to break down these fears. We don't always get things right because dying is not an exact science. What I think is also true is, yes, we put ourselves forward as a resource for the community, to show leadership in this field, but we can't do this on our own" [16]. She was not a theorist and understood others´ suffering and distress and led the way to alleviate their suffering, advocating for a more comfortable dying process and a more acceptable memory of it to their loved ones who live on.

Nobody should be expected nor forced to consent to all life-prolonging treatment; *Palliative Care* does not preclude receiving life-prolonging treatment and, delivered alongside those treatments and interventions can be really productive. Each person should be able to choose for themselves how much treatment they are willing to tolerate for limited gains in life expectancy, and to refuse treatment they do not wish to receive. There is, however, a responsibility to use this life well in service to the end (and to reach one' full potential).

The challenge is perhaps discerning when is it time to let go of this life, and so it has been since humans inhabit the earth. St. Paul's illustrates this tension well in his letter to the Philippians (1:21–24).

Each individual will expect their remaining life to allow them to be and do what their very own idiosyncrasies such as age, illness or responsibilities to others requires to complete their lives. Often, we meet people who may feel that their life is approaching its natural end and are ready to relinquish this world when their time comes. Nowadays, PC has evolved to offer other services under the name *Supportive Care* [20, 21] based on patient's needs*,* increasingly used in the acute sector and well accepted by both patients and professionals in the context of potentially curative or life sustain treatments which, nevertheless, can be onerous to receive and follow. To many, the adjective *Supportive* is better accepted and understood than *Palliative.*

It is important to find a common base which help recognize PC under whatever wrapping it might come in. Much confusion has come from the different, often random translations of the vocable *hospitium* [22] which has come to be understood

#### *The Challenges Facing Palliative Care Advocacy: What Is in a Name? DOI: http://dx.doi.org/10.5772/intechopen.97367*

different things in different languages. *Hospices*, as understood from its Anglo-Saxon use, are far more than mere buildings; they house a philosophy of human relationship and hosting which could be considered as direct descendants of the medieval form because behind their assertive philosophy sits a highly personal holistic approach which places the physical, emotional and spiritual welfare of patients and their families at its heart.

Still, many still identify them with places where patients go when there is nothing more to be done, where people go to die. The problem with this, is that much of the suffering that could be alleviated in the right space, is not, because it is left too late, thinking they are places one might go to die.

Much work is nowadays undertaken to facilitate the understanding of terminology in our field, many researchers look and write about palliative care. In Spain where it has been translated as `*Cuidados Paliativos`*, thus stressing its most physically relevant aspects of care. Research groups such as ATLANTES. Instituto Cultura y Sociedad. Universidad de Navarra look for its secret, which they call "The Intangible ".

Our own research to define the ethos of PC moves in the same lines, recalling The Little Prince affirmation "And now here is my secret, a very simple secret: It is only with the heart that one can see rightly; what is essential is invisible to the eye." [23], which links seamlessly with the thoughts of those pioneers whose legacy is now ours to work with and transmit forward "All those intangible values are expressed in concrete actions able to transmit unconditional acceptance and the affirmation of the patient's worth as a person [24].
