**3.4 Scientific aspects**

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

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

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 philoso-

Cicely Saunders left a great number of written documents. This one is particu-

"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

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

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

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

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

ensures its implementation and availability for many.

acceptable memory of it to their loved ones who live on.

service to the end (and to reach one' full potential).

letter to the Philippians (1:21–24).

understood than *Palliative.*

**296**

phy and principles.

larly representative of her work:

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

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

It is acknowledged that the end of all science is the extension of agreed knowledge and that it must be able to be explained through its technical methods: "empirically confirmed and logically coherent statements of regularities (these are often predictions)" [26].

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 out of ignorance or neglect might have arrested its expansion.

#### *3.4.1 The science and its philosophy*

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,

together with the great value she gave to the scientific foundations of palliation brings us to consider the Philosophy of science as necessary.

To achieve which, the role of creativity and interpretation are essential, as is

For example, about could have been causing the back pain a patent suffers from. Or the reconstruction of a family distress from our knowledge of a patient's disease trajectory. Or extrapolation when a new cluster of symptoms appears in relation to biochemistry analysis results taken a few days before of an election from

A situation which tries to help complexity using models: The model is a scientific construct between theory and reality. On the one hand, it concretes the theory and

Science and scientific proceedings therefore, come supported by complex structures that need understanding and respect. Many work to help others understand these and give us principles to promote respect, setting out the Ethics of Science,

Sociologist Robert Merton [29] identifies four institutional imperatives—universalism, collectivism, selflessness, and organized skepticism—such as the ethos of modern science—its "fundamental values." Mertonian laws cover aspects such as: volume of research funds, consistency of the professional network, community

*Universalism*. Promotes the value of scientific claims for what they bring to society and not by who brings them to the scientific arena or even which personal or scientific background they bring their claims from. Merton recognizes and warns about the power of society at large and a scientific private cosmos which may clash with universalism. "Ethnocentrism is not compatible with universalism," he affirms and requires that "careers be open to talent," because science must be a meritocracy. Therefore, to hinder science ability to nurture knowledge, by excluding capable people from developing their scientific callings on the basis of competence,

This aspect could be detrimental to PC, where the *friendship of the heart* consti-

Data and theories are valuable assets, continues Merton, which can be cond in models or scientific structures, even named after the scientist behind it when thought to constitute a significant contribution to the field and brings prestige to the

tutes one of two foundational cornerstones, without which, extreme over technification and medicalization might overrepresent its science. PC demands more impalpable aspects to achieve its mission and the vast volunteering that support it is testimony of the founder's vision to successfully combine both

so-named person or research group. Such prestige is in itself an honor best

collectivism and involvement in non-academic content.

Scientific statements, are a very varied type of scientific construction. They range from expressing the data obtained to an experimental measure: "You have cancer causing you pain several times in 24 hours as the analgesic effect wears off". Up until a law is formulated: "Patients with cancer who have continuous pain shouldn't have to earn their analgesia; opiates should be given regularly" stated C Saunders. Like models or concepts, they are not an exact translation of what is going on in nature. The statements and laws that are constructed from them are, by definition, approximate, provisional and contextual, because in the future the concepts can be further specified and the measuring instruments can be improved. Theoretical Systems arise from statements and laws that articulate and command each other. Well formulated, they become consistent and are susceptible to improvement, at the same time, they remain always open, i.e. they are not closed systems: at least they have initial conditions and contour conditions. They are formulated in a fragmentary way, just as a child acquires greater ease in the man-

scientific induction, including inference.

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

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

on the other it simplifies reality.

agement of a language.

worth of a chapter to itself.

harms scientific progress at large.

knowledge and compassionate doing.

**299**

surveys.

Science is a limited human activity that has its origin in man's observation of ordinary experiences and his desire to know the truth. In its output, science provides proven knowledge that goes beyond human experience. Its classic ideal seeks to achieve true knowledge based on reason, compatible with that which is provisional and reviewable.

Classical sciences such as philosophy, theology or mathematics share some features with many modern experimental sciences such as physics, biology or neuroscience. However, the notion of science is often applied almost exclusively to experimental sciences.

A broader perspective applies the concept of science in an analogue way. For example, experimental sciences and common philosophy both seek a knowledge that extends beyond ordinary experience; the difference is that the philosophical approach does not willingly exclude anything that can be rationally studied. Experimental sciences self-limit the search for empirical evidence using specific principles of reasoning.

The same reality, for example, the suffering of the human being is the subject of study of different disciplines (biology, sociology, sociology, psychology, medicine, which means that each science has its own objectives, methods and therefore, also, results. A situation which has leads to the fragmentation of knowledge which clouds the understanding of the discipline.

The philosophy of science is a philosophical reflection that seeks to understand the nature and value of science, given that philosophical reflection on scientific activity is carried out from reason. Logic, history, sociology … but, especially from a meta-scientific perspective, experimental science is a clear test of human ability to transcend what is immediately given to observe by the senses.

Philosophy, as science has evolved in time. Among the current main current currents in the philosophy of science, Thomas S Kuhn's historical 'sociological' approach states that the paradigm shift is not due to logical reasoning but to a process of conversion of scientists.

Science needs to be communicated. Scientific communication demands clear conceptualization. Each concept has a meaning and a reference that does not have to be unique. Thus, terms can refer to many semantic fields (evolution of pain, evolution of human suffering) and encompass in their meaning various mechanisms related to their perception by society at that point in history.

But there is more as concepts, these most elementary scientific constructions can be either qualitative or quantitative.

Quantitative concepts are common in healthcare and have a mathematic expression, (temperature, blood pressure … ) and are called magnitudes. They are associated with methods and measuring instruments, acting as bridges between theory and experimentation, because they make rigorous data processing as possible. These concepts, common to physical aspects of medicine are well used and known: they have extended to less measurable concepts such as physical pain by a number of conceptual models.

Concepts are not static. The understanding of the atom, today is much greater than a few years ago.

Science uses models to simplify reality, idealizing some of its aspects. Some models are schematic representations of what you want to study, while others are much more complex idealizations. PC is defined by many as a phenomenon and as such, for its realization the scientist needs to use informed guess (very common in PC advanced communication) to tease out what properties of phenomena form the appropriate basis for idealization and What features can be ignored.

together with the great value she gave to the scientific foundations of palliation

Science is a limited human activity that has its origin in man's observation of ordinary experiences and his desire to know the truth. In its output, science provides proven knowledge that goes beyond human experience. Its classic ideal seeks to achieve true knowledge based on reason, compatible with that which is provi-

Classical sciences such as philosophy, theology or mathematics share some features with many modern experimental sciences such as physics, biology or neuroscience. However, the notion of science is often applied almost exclusively to

A broader perspective applies the concept of science in an analogue way. For example, experimental sciences and common philosophy both seek a knowledge that extends beyond ordinary experience; the difference is that the philosophical approach does not willingly exclude anything that can be rationally studied. Experimental sciences self-limit the search for empirical evidence using specific princi-

The same reality, for example, the suffering of the human being is the subject of study of different disciplines (biology, sociology, sociology, psychology, medicine, which means that each science has its own objectives, methods and therefore, also, results. A situation which has leads to the fragmentation of knowledge which clouds

The philosophy of science is a philosophical reflection that seeks to understand the nature and value of science, given that philosophical reflection on scientific activity is carried out from reason. Logic, history, sociology … but, especially from a meta-scientific perspective, experimental science is a clear test of human ability to

Philosophy, as science has evolved in time. Among the current main current currents in the philosophy of science, Thomas S Kuhn's historical 'sociological' approach states that the paradigm shift is not due to logical reasoning but to a

Science needs to be communicated. Scientific communication demands clear conceptualization. Each concept has a meaning and a reference that does not have to be unique. Thus, terms can refer to many semantic fields (evolution of pain, evolution of human suffering) and encompass in their meaning various mecha-

But there is more as concepts, these most elementary scientific constructions can

Concepts are not static. The understanding of the atom, today is much greater

Science uses models to simplify reality, idealizing some of its aspects. Some models are schematic representations of what you want to study, while others are much more complex idealizations. PC is defined by many as a phenomenon and as such, for its realization the scientist needs to use informed guess (very common in PC advanced communication) to tease out what properties of phenomena form the

appropriate basis for idealization and What features can be ignored.

Quantitative concepts are common in healthcare and have a mathematic expression, (temperature, blood pressure … ) and are called magnitudes. They are associated with methods and measuring instruments, acting as bridges between theory and experimentation, because they make rigorous data processing as possible. These concepts, common to physical aspects of medicine are well used and known: they have extended to less measurable concepts such as physical pain by a

transcend what is immediately given to observe by the senses.

nisms related to their perception by society at that point in history.

brings us to consider the Philosophy of science as necessary.

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

sional and reviewable.

experimental sciences.

ples of reasoning.

the understanding of the discipline.

process of conversion of scientists.

be either qualitative or quantitative.

number of conceptual models.

than a few years ago.

**298**

To achieve which, the role of creativity and interpretation are essential, as is scientific induction, including inference.

For example, about could have been causing the back pain a patent suffers from. Or the reconstruction of a family distress from our knowledge of a patient's disease trajectory. Or extrapolation when a new cluster of symptoms appears in relation to biochemistry analysis results taken a few days before of an election from surveys.

A situation which tries to help complexity using models: The model is a scientific construct between theory and reality. On the one hand, it concretes the theory and on the other it simplifies reality.

Scientific statements, are a very varied type of scientific construction. They range from expressing the data obtained to an experimental measure: "You have cancer causing you pain several times in 24 hours as the analgesic effect wears off". Up until a law is formulated: "Patients with cancer who have continuous pain shouldn't have to earn their analgesia; opiates should be given regularly" stated C Saunders. Like models or concepts, they are not an exact translation of what is going on in nature. The statements and laws that are constructed from them are, by definition, approximate, provisional and contextual, because in the future the concepts can be further specified and the measuring instruments can be improved.

Theoretical Systems arise from statements and laws that articulate and command each other. Well formulated, they become consistent and are susceptible to improvement, at the same time, they remain always open, i.e. they are not closed systems: at least they have initial conditions and contour conditions. They are formulated in a fragmentary way, just as a child acquires greater ease in the management of a language.

Science and scientific proceedings therefore, come supported by complex structures that need understanding and respect. Many work to help others understand these and give us principles to promote respect, setting out the Ethics of Science, worth of a chapter to itself.

Sociologist Robert Merton [29] identifies four institutional imperatives—universalism, collectivism, selflessness, and organized skepticism—such as the ethos of modern science—its "fundamental values." Mertonian laws cover aspects such as: volume of research funds, consistency of the professional network, community collectivism and involvement in non-academic content.

*Universalism*. Promotes the value of scientific claims for what they bring to society and not by who brings them to the scientific arena or even which personal or scientific background they bring their claims from. Merton recognizes and warns about the power of society at large and a scientific private cosmos which may clash with universalism. "Ethnocentrism is not compatible with universalism," he affirms and requires that "careers be open to talent," because science must be a meritocracy. Therefore, to hinder science ability to nurture knowledge, by excluding capable people from developing their scientific callings on the basis of competence, harms scientific progress at large.

This aspect could be detrimental to PC, where the *friendship of the heart* constitutes one of two foundational cornerstones, without which, extreme over technification and medicalization might overrepresent its science. PC demands more impalpable aspects to achieve its mission and the vast volunteering that support it is testimony of the founder's vision to successfully combine both knowledge and compassionate doing.

Data and theories are valuable assets, continues Merton, which can be cond in models or scientific structures, even named after the scientist behind it when thought to constitute a significant contribution to the field and brings prestige to the so-named person or research group. Such prestige is in itself an honor best

respected by those who work in that field, hence the reason why communication of scientific results is prized by science which despises secrecy about them.

many until now, has always being present in any human grouping. It is such an interesting and fascinating aspect that deserves another full chapter to really learn how other communities look after their vulnerable members, the ill, the dying and

It becomes necessary to position ourselves and acknowledge the conceptual mare magnum which too often blurs and disorders the delivery of timely PC, its

Probably, the best way to understand the undeniable value of PC is to allow others, those who have experienced PC, rather than deliver it, to inform our effort. Patients´ narrative recounting their experience is full of details; something we become aware of when we introduce someone, visitor or professional from other specialty, to the dynamic of our consultations. We are talking about its other

As with any vital aspect, and Palliative Care is very much about living life to its natural end, we encounter have a static duality - dynamic, negative - positive, painpleasure, darkness-light, night day, death - life experience that makes this field one

How many times have both patients and their families told us that they are "living on a real roller-coaster of emotions, experiences, illusions and losses."? Hundreds of sick people who tell us about what they experience when the afternoon falls and the day - perhaps their last day - becomes night. Likewise, the desolation of the last sunrise when a new day arrives that they do not know if they will have the strength to face in a dignified way. How much suffering holds the narrative of "I'm afraid of the night in case I die during it. I feel horror at dawn because I am still alive and have to face a new day and I don't know if I can."

As professionals, it is in these moments of very personal, intimate exchange and confidence, when we confirm that something very special imprints character to our work. Yes! something that reaches the other. Just as their desolation reached us. For

Occasionally, it's rare but extraordinarily motivating, people look us in the eye and ask "And how can you do this every day? Sometimes they tell how they have seen us tend to another patient and have seen the pain in our eyes. They insist "where do you get the strength to come back the next day with a smile? Where does the inspiration come from for your eyes to shine when you approach me, broken my useless body? Me who with my pain caused you pain?" We respond with professionalism, humanism and simplicity. In that therapeutic space, we left something of us. It is very likely

It would therefore appear that experiencing PC is possible by both: those who need it and those trained to deliver it. As an experience it falls into the phenomenological sphere which incorporate a combination or synthesis of the positive aspects described, experienced in situations of suffering and uncertainty which can be qualified as intensely relational. If these moments pregnant with human intensity are symbolized by a single quality, it would be one very close to life itself and characterized by light, beauty and love gathered in one. A phenomenon that can be experienced but difficult to describe and be identified by the someone else, not

Thus, life to its end can be a wonder in the development of images and s never seen before, thoughts never before thought, realities never dreamed of, constantly emerging, constantly reminding us that the person's individual universe might not

me, the question is "how could we find what that something is?"

that in such a personal exchange, the very spirit of PC is contained.

actively involved or not adequately trained.

yet have reached the limits of its possibilities.

**301**

**3.5 Patient centred and directed palliation effort: quality of life**

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

how to support those who are bereaved.

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

scientific structures perhaps too vague to work on.

foundation: *"The vulnerable friendship of the heart".*

of very strong contrasts.

He [29] states that *Universalism* is also a democratic principle (laissez-faire), "impersonal criteria of realization and non-fixation of status characterize open democratic society". established scientific knowledge should be accessible to all members of the scientific community to use, explore, etc.

*Collectivism*, also communism, does not refer to the Marxist-Leninist movement, but to the view that scientific knowledge is a resource to be shared with the entire scientific tribe, regardless of which individual scientists in particular have produced a particular discovery.

One of the things a scientist has to do to meet this standard is to communicate his findings to other scientists. Knowledge that is not made public does not help the scientific community.

Interestingly, Cicely Saunders took good care to encourage collectivism of the scientific ethos [30] of the new field of medicine was set to become. *Palliative Care* was born with no scientific secrets as she sought to tell others what she had found to help the dying from the very beginning when every Saturday morning the met to "work and pray fror Hospice".

*Disinterest,* maintains that scientific accounts ought not to be personal in their outlook and, rather than empower the individual scientist own plan, they should bring a greater good to a bigger group. Merton [29] argues that disinterest is an institutional obligation, not be disarrayed by individual motives. Individuals should certainly have personal motivators such as scientific awareness, publications, recognition, curiosity, among others. Such desires are licit as far as that will encourage them to work with others to obtain the results that will made the group shine.

"Institutional control of a wide range of these motivations" better characterizes what is fundamental to science and helps avoid science scam. Merton [29] believes this is reinforced by the rigorous monitoring that scientist undergo at the hands of other scientists. Interestingly, he also highlights the connexion researchers establish with their *customers* different from those other professions. Alarmingly, when lay people and scientists establish closer working links, such connection frequently spurs fraud and pseudoscience.

Finally, Organized *skepticism*, encourage omitting one's own judgment and using only empirical and logical criteria. This is frequently the strained connection between and those vital areas inclined to offer judgment.

While difficult, it is comforting to discover that the scientific aspect of Palliative Care, "its head" is up to any other scientific effort, although it is true that there would be much to analyze and work in order to give greater rigor. It is especially relevant to strengthen the learning in countries where *Palliative Care* and Palliative Medicine are not recognized as specialties. This leads to situations in which the expert becomes such by means of an expensive, often online, master degree and short clinical observational stays with experts who are such by the same method, very distant from the structured learning that a four-year specialist training affords the individual.

From its inception *Terminal Care,* as it was our field originally known, it was ambitious in its founder's commitment to practice within scientific frameworks, to research and treat symptoms such as pain [2, 30–32]. The focus being the person as a whole and responding to patients' physical, emotional, social and spiritual needs. Palliative Medicine, is today a consolidated [33] medical specialty which incorporates the care of the spiritual dimension of the individual as part of its decree although, sadly, not in every country.

On the other hand, most cultures and formalized religions [34, 35] have incorporated palliation to their teachings and fullness in some way, having also "come to join the movement" with their own array of richness which, although not known to respected by those who work in that field, hence the reason why communication of

He [29] states that *Universalism* is also a democratic principle (laissez-faire), "impersonal criteria of realization and non-fixation of status characterize open democratic society". established scientific knowledge should be accessible to all

*Collectivism*, also communism, does not refer to the Marxist-Leninist movement, but to the view that scientific knowledge is a resource to be shared with the entire scientific tribe, regardless of which individual scientists in particular have produced

One of the things a scientist has to do to meet this standard is to communicate his findings to other scientists. Knowledge that is not made public does not help the

Interestingly, Cicely Saunders took good care to encourage collectivism of the scientific ethos [30] of the new field of medicine was set to become. *Palliative Care* was born with no scientific secrets as she sought to tell others what she had found to help the dying from the very beginning when every Saturday morning the met to

*Disinterest,* maintains that scientific accounts ought not to be personal in their outlook and, rather than empower the individual scientist own plan, they should bring a greater good to a bigger group. Merton [29] argues that disinterest is an institutional obligation, not be disarrayed by individual motives. Individuals should certainly have personal motivators such as scientific awareness, publications, recognition, curiosity, among others. Such desires are licit as far as that will encourage them to work with others to obtain the results that will made the group shine.

"Institutional control of a wide range of these motivations" better characterizes what is fundamental to science and helps avoid science scam. Merton [29] believes this is reinforced by the rigorous monitoring that scientist undergo at the hands of other scientists. Interestingly, he also highlights the connexion researchers establish with their *customers* different from those other professions. Alarmingly, when lay people and scientists establish closer working links, such connection frequently

Finally, Organized *skepticism*, encourage omitting one's own judgment and using

While difficult, it is comforting to discover that the scientific aspect of Palliative Care, "its head" is up to any other scientific effort, although it is true that there would be much to analyze and work in order to give greater rigor. It is especially relevant to strengthen the learning in countries where *Palliative Care* and Palliative Medicine are not recognized as specialties. This leads to situations in which the expert becomes such by means of an expensive, often online, master degree and short clinical observational stays with experts who are such by the same method, very distant from the structured learning that a four-year specialist training affords the individual.

From its inception *Terminal Care,* as it was our field originally known, it was ambitious in its founder's commitment to practice within scientific frameworks, to research and treat symptoms such as pain [2, 30–32]. The focus being the person as a whole and responding to patients' physical, emotional, social and spiritual needs. Palliative Medicine, is today a consolidated [33] medical specialty which incorporates the care of the spiritual dimension of the individual as part of its decree

On the other hand, most cultures and formalized religions [34, 35] have incorporated palliation to their teachings and fullness in some way, having also "come to join the movement" with their own array of richness which, although not known to

only empirical and logical criteria. This is frequently the strained connection

between and those vital areas inclined to offer judgment.

scientific results is prized by science which despises secrecy about them.

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

members of the scientific community to use, explore, etc.

a particular discovery.

scientific community.

"work and pray fror Hospice".

spurs fraud and pseudoscience.

although, sadly, not in every country.

**300**

many until now, has always being present in any human grouping. It is such an interesting and fascinating aspect that deserves another full chapter to really learn how other communities look after their vulnerable members, the ill, the dying and how to support those who are bereaved.
