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

It becomes necessary to position ourselves and acknowledge the conceptual mare magnum which too often blurs and disorders the delivery of timely PC, its scientific structures perhaps too vague to work on.

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

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 of very strong contrasts.

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

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

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 actively involved or not adequately trained.

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 yet have reached the limits of its possibilities.

Palliative Care might well be the force able to bring forward the life that remains as such, as an evolving universe, says R. Bruening, an organic chemistry scientist who says his work is that of anti-cancer drug maker and CEO. Practising good Palliative Care can help whoever receives it to reach their own, yet unrealized, potential as a human being.

director of a well-rehearsed orchestra and the entire palliative team came up with a

*Patient choice*, as an entity, must become part of the medical Curriculum and

cake or fruit to let the professionals know they are grateful for the great care provided to their loved one. They do not mention a single common research metric, but the team are motivated by their gratitude in remembering their patient. It is a very humbling experience as we are reminded of the uniqueness of each life and the

Bereavement is not to be forgotten. Frequently, the bereaved come with a card,

After almost 30 years of combining multilingual medical care in three countries with a special interest in *Palliative Care* practiced at all levels of care in the country in which it had its modern origin and at the political-organizational level of the country of origin itself, the pressure to address its expansion from different perspectives: conceptual, semantic and semiotic; anthropological, philosophical, political and welfare, of confronting the intrinsic philosophy seeking what imprints character on a multi -professional attention at the international level at a time when there is great confusion as to what constitutes the delicate spirit of a movement that has its roots in medieval *hospitium*. What remains today in a health system carelessly over-mechanizing its practice within a society that turns its back on the truth of that fluid *charity* of religious orders that knew how to welcome, attend, assist, care for and treat exhausted pilgrims [35] who had undertaken journeys with genuine hardship of those who did not know whether they would be able to return

The rigorous search for intangible fundamentals to make them available to all involved, within a strict research framework will result in new knowledge that, made available to all, results in undisputed palliative conceptions and important

The real impact on the defense of life in the context of an announced death is indisputably revealed by the immediate practical applicability of the theories used. These are issues that arouse great interest in acquiring greater knowledge, appre-

The Anglo-Saxon *Palliative Care*, known among Spanish speakers as "*Cuidados Paliativos*", changes the perspective from which we see the process of dying and death itself contributing to facilitate vital fullness and that the sick or close individ-

Cicely Saunders'original biography [36] relays how she established that one of its the modern Hospice movement underpinning values would be thinking and incorporating "Those who one day will come to join us" referring to professionals from diverse specialties, countries and bringing their own contribution to the field

International contemporary PC has not always made full conceptual incorpora-

Undoubtedly the urgent demographic need means that many of us allow ourselves to call what is nothing more than a part of the original Palliative Care, a successor of Canadian origin of the previous "Terminal Care" [30, 32]. Contemporary Palliative Care has not made a full conceptual incorporation making, in my

hensible by those who develop their clinical activity in this field.

opinion, imperative the need to adjust foundational concepts.

tion, making it necessary the effort to adjust current impressions to the

ual achieves his or her potential as a person even in the midst of complex

plan of care to meet those goals to the greatest extent possible.

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

impact of our common humanity.

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

home?

new paradigms.

multidimensional needs.

strengthening.

**303**

**4. Chapter motivation and scientific interest**

take its rightful place as a basic starting point of all good medicine.

These profound understandings come from experience; the problem is that trying to quantify subjective experience is like trying to create a metric for a favorite color. Or flavor of ice cream. Or to measure suffering by the volume of tears cried. It is also possible to use Scientific constructs and models to objectivize the experience.

Indeed, WHO's definition of Palliative Care, considered by some authors to be mere statement of intentions, incorporates the concept of quality of life since a very important aspect of palliative philosophy is its commitment to well-being, quality of life, as long as it exists. Many consider happiness to be essential to closing a full life, and their pursuit of what gives meaning to life. It is particularly suggestive to have learned to live life through the small, insensitive things that adorn it. Others say that the "essence" of life comes to its full meaning depending on how transcendent.

From a metaphysical (spiritual) point of view the essence, as in any matter of vital nature, and Palliative Care is very much about life and living it, incorporates static-dynamic, negative–positive, pain-welfare, darkness-light, night - day, death life, soul-body duality, which make this field one of very strong contrasts.

It might be that experiencing the essence of Palliative Care is possible: combination- synthesis- of the positive aspects described, experienced in situations of suffering, uncertainty and very, very relational. If these moments pregnant with human intensity are symbolized by a single quality, it would be a very close to life, the very life characterized by - light, beauty and love – gathered in one and become like One, that could be identified.

The European Consortium in Healthcare Outcomes and Cost–Benefit Research's extensive study concluded that those theories based on a QALY approach do not give a true account of the manner real populations performance outlines (Quality Adjusted Life Year) is a non-specific measure of disease burden, which tries to encompass value and amount of life lived; used in economic appraisal to weigh the cost of healthcare interventions and their impact on society as a whole. An entirely foreseeable result: we can no more predict what patients will want or need when a given disease takes hold, than guess that their favorite color or the ice cream flavor they disfavor. Such understandings only come when know when we know them and we spend time with them and they tell us themselves. Or we observe their behavior and possessions as well as their loved ones.

Enabling patients to choose what they can has consequently become very relevant and organizations such as "Nothing about me without me" [35] leading the way help bring forward the more humanistic dimension of PC.

Consent laws focus on the ability to understand illness and treatment options, as well as the consequences of treatment selection or refusal. As patients often are not aware of their own goals and values because and they have not specifically paused to think about them or make them explicit, getting to know the patient through asking the right questions and listening carefully to answers which can be new to the person, can help us understand their choices. We learn what is most important to patients in their life right now, and what would their ideal end of life look like. *Active listening* [35] will afford us the knowledge of their wishes relating to spending time or even dying at home, not wanting to be in bed attached surrounded by machines. We often listen saying little while the patient comes to realize what they want and vocalize some outstanding goals of care. After this, the patient -as the

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

Palliative Care might well be the force able to bring forward the life that remains as such, as an evolving universe, says R. Bruening, an organic chemistry scientist who says his work is that of anti-cancer drug maker and CEO. Practising good Palliative Care can help whoever receives it to reach their own, yet unrealized,

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

These profound understandings come from experience; the problem is that trying to quantify subjective experience is like trying to create a metric for a favorite color. Or flavor of ice cream. Or to measure suffering by the volume of tears cried. It is also possible to use Scientific constructs and models to objectivize

Indeed, WHO's definition of Palliative Care, considered by some authors to be mere statement of intentions, incorporates the concept of quality of life since a very important aspect of palliative philosophy is its commitment to well-being, quality of life, as long as it exists. Many consider happiness to be essential to closing a full life, and their pursuit of what gives meaning to life. It is particularly suggestive to have learned to live life through the small, insensitive things that adorn it. Others say that the "essence" of life comes to its full meaning depending on how

From a metaphysical (spiritual) point of view the essence, as in any matter of vital nature, and Palliative Care is very much about life and living it, incorporates static-dynamic, negative–positive, pain-welfare, darkness-light, night - day, death -

It might be that experiencing the essence of Palliative Care is possible: combination- synthesis- of the positive aspects described, experienced in situations of suffering, uncertainty and very, very relational. If these moments pregnant with human intensity are symbolized by a single quality, it would be a very close to life, the very life characterized by - light, beauty and love – gathered in one and become

The European Consortium in Healthcare Outcomes and Cost–Benefit Research's extensive study concluded that those theories based on a QALY approach do not give a true account of the manner real populations performance outlines (Quality Adjusted Life Year) is a non-specific measure of disease burden, which tries to encompass value and amount of life lived; used in economic appraisal to weigh the cost of healthcare interventions and their impact on society as a whole. An entirely foreseeable result: we can no more predict what patients will want or need when a given disease takes hold, than guess that their favorite color or the ice cream flavor they disfavor. Such understandings only come when know when we know them and we spend time with them and they tell us themselves. Or we observe their

Enabling patients to choose what they can has consequently become very relevant and organizations such as "Nothing about me without me" [35] leading the

Consent laws focus on the ability to understand illness and treatment options, as well as the consequences of treatment selection or refusal. As patients often are not aware of their own goals and values because and they have not specifically paused to think about them or make them explicit, getting to know the patient through asking the right questions and listening carefully to answers which can be new to the person, can help us understand their choices. We learn what is most important to patients in their life right now, and what would their ideal end of life look like. *Active listening* [35] will afford us the knowledge of their wishes relating to spending time or even dying at home, not wanting to be in bed attached surrounded by machines. We often listen saying little while the patient comes to realize what they want and vocalize some outstanding goals of care. After this, the patient -as the

life, soul-body duality, which make this field one of very strong contrasts.

potential as a human being.

the experience.

transcendent.

**302**

like One, that could be identified.

behavior and possessions as well as their loved ones.

way help bring forward the more humanistic dimension of PC.

director of a well-rehearsed orchestra and the entire palliative team came up with a plan of care to meet those goals to the greatest extent possible.

*Patient choice*, as an entity, must become part of the medical Curriculum and take its rightful place as a basic starting point of all good medicine.

Bereavement is not to be forgotten. Frequently, the bereaved come with a card, cake or fruit to let the professionals know they are grateful for the great care provided to their loved one. They do not mention a single common research metric, but the team are motivated by their gratitude in remembering their patient. It is a very humbling experience as we are reminded of the uniqueness of each life and the impact of our common humanity.
