Summary: This article explores an ethical responsibility for treating the whole body in end-of-life palliative care. When a terminally ill patient is facing a serious illness, they need relief: relief from pain and relief from stress and many other symptoms. Health care professionals often think that Palliative and Hospice Care need to focus on improving patients' ability to tolerate aggressive medical treatments. But terminally ill patients themselves feel the need for more than just medical or psychological support. They need also bodily or embodied support from all involved into their care.
The question of embodied subjectivity and ethical responsibility for terminally ill patients has risen to great prominence within the context of contemporary philosophical, theological, ethical, sociological, legal and political debates in today's society. The ethical criteria for the care of such patients are developed in this paper within the context of anthropology based on the writings of Maurice Merleau-Ponty very well known French phenomenological philosopher. In order to begin to address the "phenomenon" of human life at the stage of end-of-life palliative care, the methodological structure of this paper will examine: 1) how life of terminally ill patient is experienced and lived, and 2) how health care professionals along with families and community are responsible for caring of terminally patient's life.
In seeking to offer such a contribution to end-of-life care, I shall first present specific problems and method dealing with existential phenomenology that can be used as approaches for understanding living body as "embodied" linked to the ethical responsibility of terminally ill patient who are in end-of-life care. I shall then develop a deeper understanding of the human person and her/his bodily existence in light of Merleau-Ponty. I shall thirdly explore an ethical responsibility for treating the whole body in end-of-life palliative care. Finally, my conclusion explore the questions of whether we need reform in palliative care in the future, and how the topic of this paper challenged me as a person, student and priest. In addition to my reflections on phenomenology and ethics, I also draw upon a selected body of bioethical, philosophical and social theoretical literature to present a broader understanding of the human condition in its richness.
Since 1960', the field of end-of-life ethics has been dominated by "quandry ethics". Any considerations of the embodiment or the evolution of the experience of dying were omitted. This has changed as ethicists explore other methods and emphasize a multidisciplinary approach for future research in this discipline. It is undisputed today, that as in medicine also in ethics we must rediscover a way of asking the questions of being and living that justifies a new approach to understand the embodied experience of human body in end-of-life care today.
Most challenging question which helps us to understand the embodied experience are following: 1) What does it mean to be human? 2) What does it mean to be terminally ill? 3) What is embodied subjectivity? 4) What does it mean to care for a person as embodied subjectivity? 5) What is the distinction between subject and object when we speak about the body? 6) What does it mean to treat the whole person in palliative care? 7) What is the conceptual basis in those relationships? 8) How might one endeavour to die well? Or let us even ask this: Is it only those people who are lucky enough to remain in control of their intellectual, emotional, and physical capacities as they near death who can die well?
In seeking to offer such a direction and focus on embodied experience of terminally ill patient in end-of-life care it is important to use phenomenology as starting point, because as a philosophical movement and method it takes its point of orientation from our situatedness in the world. Whether one speaks about patient consciousness or her/his bodily experience, one have to begin from her/his concrete situatedness in the world. The body of a concrete person-patient is presented here on earth as the basis of experience. In addition, phenomenology is also concerned with fundamental questions of meaning and explores this "phenomenon of life". To understand the "phenomenon of life" and the living experience of a terminally ill patient, we must brings both the past and future together and opens the door to a deeper understanding of the human person while offering a continuous dialectical exchange with the world and other embodied subjects.
However, before any contribution or ideas on ethical responsibility and improving end-of-life care for terminally ill patients are develop, let us first of all focus on a deeper understanding of the human body and her/his bodily existence in light of Merleau-Ponty whose understanding of embodiment helps us to more fully understand human body in wholeness and point out to our ethical responsibility.1
Any elaboration of Merleau-Ponty work must follow his two most important observations: subjectivity is embodied and all subjectivity is intersubjectivity.
From the beginning of Merleau-Ponty book, Phenomenology of Perception, Merleau-Ponty expresses his notion of bodily existence of a person as not reducible to the law of mechanistic physiology, but is imbued with meaning by our "being-in-the-world". The lived body of an embodied person is transcendent and reaches beyond itself to meet and relate to the world in which it is situated. The embodied body, according to phenomenological perspective, composes both a habitual and present body-subject, and is the meeting place of the past, present and future; it is carrying forward the past, outlining the future and is in the present living in this bodily momentum. Most importantly, the embodied person cannot detach herself/himself from her/his body. Her/his body is permanently present for her/him without ever being able to observe it like an object. Yet the permanent presence of her/his body is what enables her/him to observe objects. Her/his embodied body is situated in a dynamic envelopment of her/his limbs and organs into an organic whole or synthesized organism.
In addition, we also have to examine the "schematic unity" (live body or body schema), which is experienced regardless of any of its parts, functions or materiality. Moreover, as we refer to the "body schema", it does not limit itself to the contents of the actual lived experience or nature, or even the global awareness of the existing parts of the body.
But what is really the "body schema"? The "body schema/live body" here is both dynamic and open-ended. It only orients itself inasmuch as it occurs within and through a lived body. The lived body or embodied person body does not even consist as a totality of its functioning physical parts, and exists apart from its materiality altogether. According to Merleau-Ponty, the lived body is oriented primordially as an absolute in the here and now, and that the lived body has a base-line point for spatial orientation. Bodily spatiality, bodily unity, and bodily intentionality, all inherently dynamic, are the very conditions for coming into "being-in-the-world".
Thus, it subtends the embodied person's entire existence as a human being. Here, Merleau-Ponty description of body shifting replaces the concept of "purely bodily" with the notion of "incarnate subjectivity", in which all aspects of experience are interfused. The body is a body instead of a corpse only because existence animates it, and conversely, existence must incarnate itself and in so doing bring about an incarnate meaning. Merleau-Ponty here reminds us that we are not an uneasy alliance of matter and mind, but are really a 'third kind' of being.
Lastly, an embodied body situated in her/his own body and culture, and related to a public world, always reaches an ethical decision. An embodied person is never hermetically sealed! Her/his body's insertion into the world is a condition for his interacting with other people and will be elaborated further in our paper. Essentially, "embodied subjectivity is grounded in social, sensual and energetic interactions between embodied beings that exist within social relations of power."2
To be human, a person is essentially directed toward others. At our core, we are all communal by nature. Generally speaking, all human beings are dependent on the care of other human beings from birth until death. We depend3 on one another at every stage of our life and we also belong to different communities. Because of our embodied awareness and relational character we all have ethical responsibilities to provide loving and qualified care for terminally ill patients. We must provide them with all possible treatment and to help them understand their suffering in end-of-life palliative care.
Before delving further into our ethical responsibility for treating the whole - subject who is terminally ill, it is good to once again look for clarification on embodied awareness by Merleau-Ponty and his emphasis on connectedness to others: "The phenomenological world is not pure being. The meaning which appears at the intersection of my experience with those of others, by the enmeshing of the ones with the others, is therefore inseparable from the subjectivity and the subjectivity and the intersubjectivity which from their unity by taking up my past experiences in my present experiences and those of others in my own."4 The most important Merleau-Ponty idea which help us understand an experience of terminally ill patient is that subjectivity is intersubjectivity. In sum, patient embodied body is describes the relation between self and world. Her/his relation with others is one in which she/he attempts to influence others while others are simultaneously seeking to influence her/him. When she/he dies, the whole body dies and affects or changes others!
This relational character along with embodied awareness which I am trying to present as argument for improving the end-of-life palliative care are also presented in ethical literature by ethicist Gail Weiss in her book Body Images. From her unique viewpoint, Weiss elaborates upon Simone de Beauvoir's narrative story from her memoir, A Very Easy Death, where Beauvoir describes and evaluates her mother's death. This story presents a fundamental relationship between people in their embodied existence, and the association filled with other's demands. It is good to point out, that Beauvoir's memoir presents the dramatic changes of her own life, and how her mother's body was a fundamental aspect in relating to each other.
Importantly, Beauvoir's memoir to recognize a terminally ill patient not as an object, but as a subject, or as a person with specific needs and wishes. Weiss emphasizes this concept when she says, "Beauvoir herself is compelled to grant the moral legitimacy of these bodily imperatives, despite the fact that her mother's interests, needs and desires are so very much in conflict with her own".5 Weiss goes even further by saying that Beauvoir experienced this fully by her responsiveness to her mother's tacit wish to not be told that she is dying. What is important here for my thesis is that Weiss's notion of the bodily imperative is in its demand on the moral subject's attention to the specific and changing needs of others.
Further, by focusing on the living relationship between a terminally ill patient and her/his physician, professional health care providers, or proxy or family members, have to enact a caring concern for the other! The feminist ethicist Margaret Farley added that we must "bear with the sufferer, in love and respect," an idea that all caregivers might embrace.6
However, if we are struggling with our own embodied awareness (as often presented in media and medical journals today)7 and if in our society is this personal ethic of care" construed as a negative regarding the self-sacrifice needed in caring for others, we have to remind ourselves of our relational responsibility to each other as both internal and external links of our existence! This specific struggles of not being able to handle pressure and tension in end-of-life care for terminally ill patient, health care professionals, families or communities call for more attention and support today than any other periods before. It seems that ongoing dialogue between health care professionals and consulting specialist teams or committees, better preparation of medical students, nurses, chaplains and other personnel by their supervisors in team building and continuity would help improve end-of-life care rapidly.
Finally, before closing my argument why it is important today to improve the end-of-life care and particulary emphasize ethical responsibility for terminally ill patient, it is good to also point out that our body image is also a reflection of embodied social relations.8 All individuals embody social relations, including relationship pertaining to our gender, race, ethnicity, age, class status and communities.
We are all social creatures, dependent upon faith and equal in our dignity and responsibility for one another. We are all dependent and responsible to "open up to the other and to take that other in charge - for the sake of the other."9
Ethicists Christopher Vogt, who develop also the idea of the new framework for end-of-life care suggests in his book, Patience, Compassion, Hope, and the Christian Art of Dying Well following: "Adding care for the terminally ill and dying to the social ministry of parishes is one possible way to mainstream such care to see it as a part of life. Everyone should play a role as a member of community in supporting and caring for those who are dying."10 Vogt's point is relevant today for each one of us, as it reminds us of our mutual connectedness within the total web of social relations.
Do we need reform in palliative care? I think yes, because the end-of-life care is now entering a new moral frontier. It has been and remains a complex and difficult task for terminally ill patients and their families, as well as for health care professionals who provide them with daily care and treatment, but the depth of the promises it holds remains perennially valid and appealing. Its complexity also gives it the insight that is essential in dealing with ethical-social issues, especially those that touch upon human life, human responsibility and human health.
However, I think we also need reform regarding a person's responsibility for her/his beliefs and practices, which she/he holds with universal intent. With this affirmation, a new picture of the person as an agent emerges. However, along with personal responsibility we also have spiritual responsibility. The excellent article by S. Strang and P. Strang refer to it when they say that "even the role of the hospital chaplaincy has changed. Today, it entails specialized competence and is needed in existential discussions with different patients in crisis, regardless of their personal faith or lack thereof."11
In conclusion, let us also quote from Doctor Talk to Me by the editor and essayist, Anatole Broyard: "Not every patient can be saved, but his illness may be eased by the way the doctor responds to him. In learning to talk to his patients, the doctor may talk himself back into loving his work. He has little to lose and much to gain by letting the sick man into his heart. If he does, they can share, as few others can, the wonder, terror and exaltation of being on the edge of being."12
1 See Maurice MERLEAU-PONTY, The Phenomenology of Perception (London: Routledge & Kegan Paul, 2002. [Back]
2 Jean S. JONES, Narrating multiple selves and embodying subjectivity: Female academics from the working class (PhD Diss.: Boston College, 1998), p. 43. [Back]
3 For more details about "dependency" see Eva F. KITTAY, Love's Labor: essays on women, equality and dependency (London, Routledge: J.A. Parks, 2003), especially p. 17. [Back]
4 MERLEAU-PONTY, The Phenomenology of Perception, p. xx - introduction. [Back]
6 Margaret FARLEY, Compassionate Respect (New York & Mahwah, N.J: Paulist Press, 2002), p. 10. [Back]
7 The New England Journal of Medicine [NEJM] in last no. 20/2008 presents this concern and problem in their article Perspective Roundtable: Redesigning Primary Care by Thomas LEE, T. BODENHEIMER, Allan GOROLL, B. STARFIELD, K. TREADWAY. Available at http://content.nejm.org/cgi/content/full/359/20/2085 (downloaded November 13, 2008). [Back]
8 See also, Lisa Sowle CAHILL, Sex, Gender, and Christian Ethics, New Studies in Christian Ethics (Cambridge, UK: Cambridge University Press, 1996). [Back]
9 Enrique DUSSEL, Ethics & Community (Maryknoll, NY: Orbis, 1989), p. 39. Dussel's book has been not only been translated into many languages but his message and especially his emphasis on "ethical conscience and the voices of the poor" bears important validity today not just in liberation ethic but ethics in general. His voices of the poor may be easily interpreted as being the voices of the patients. [Back]
10 Christopher P. VOGT, Patience, Compassion, Hope, and the Christian Art of Dying Well (Lanham, MD: Rowman & Littlefield Publishers, 2004), p. 150. [Back]
11 STRANG, S.; STRANG, P. "Questions posed to hospital chaplains by palliative care patients", in Journal of Palliative Medicine 5 (6) (2002), p. 857-864. [Back]
12 Anatole BROYARD, Doctor Talk to Me (NY/Mahwah: Ballantine Books, 1993), p. 50. [Back]