Words Unspoken
2001; Elsevier BV; Volume: 21; Issue: 4 Linguagem: Inglês
10.1016/s0885-3924(00)00268-2
ISSN1873-6513
Autores Tópico(s)Grief, Bereavement, and Mental Health
ResumoWhat does this young man mean with his statement: “My hope is that my friends join me in helping me to die a good death?” For many, the fear would be that this is a request for assisted suicide or euthanasia. Although this may be the case, it may also be the fantasy of caregivers who are frightened by these requests. I do not plan to focus on assisted suicide or euthanasia. The discussion for this case should be much broader. Probably the most important task for those who are involved with caring for this individual is to explore what the person means by “a good death.” There are a lot of clues already. He has emphasized quality of life, pain control, and maintaining relationships. Central values for this man are enjoying the companionship of those whom he loves, trying to live each day fully, and remaining generous and focused on others. Searching for cures or sacrificing time, money, and strength in medical treatments that probably will not work are not what this individual desires. A key step in honoring this man's request to help him die a good death is to be very explicit about the goals of care and to tailor treatment, to the extent possible, to meet these goals. A necessary part of clarifying his wishes is a discussion, if it has not already occured, about the formulation of an advance directive and provision for a surrogate decision maker. There is another set of tasks, perhaps a bit less obvious than coming up with care plans and advance directives, that also need to be explored. What makes a death happy? How can death be good? There is a long tradition in Christian spirituality of looking to “the grace of a happy death,” a recognition that dying may be difficult but can bring deep contact with meaning, true happiness, wisdom, and love. Regardless of faith tradition, or rejection of a religious perspective, the end of life raises questions about what it means to be human, the meaning of a limited life, the value of one's personal existence, and the way in which one comes to grips with these questions. Broadly speaking, dying has a spiritual dimension. And that spiritual dimension needs to be explored, at a level to be determined by the openness of the person who is dying. That does not mean that it is appropriate to push explicitly religious issues down the throats of people at the end of life. Neither is it appropriate to run away from questions of meaning, transcendence, faith, and what happens after death. Palliative care will do little to palliate existential distress if issues of the spirit are avoided. It is hard to address a good death without looking to what is good for the spirit. Both a militant atheist and an observant believer think about meaning, death, and causality. The difference in their answers does not mean that individual responses, whether faith-filled or God-rejecting, are to be avoided in trying to limit suffering and not abandon a person to the experience of illness. The man whose case we are considering does not express his hopes for the remaining months in religious terms. He does, however, talk about a love of life, a network of relationships, values that give hope and meaning in difficult times, and a desire to transcend his situation by caring for others and being “a good human being.” This is his spritual framework. Along with the medical care plan, it is worth asking, in an open-ended manner, some further questions: “Is your religious faith or tradition important to you?” “Are there aspects of that tradition that you want me to know about as I care for you?” “Are there rituals or religious obligations I should know about when you are dying?” Another set of more direct questions could well be appropriate, if the person is open to the conversation, about what the individual hopes to accomplish in the time remaining, what tasks are undone, and what are the thoughts on why illness has struck him personally and what, if anything, will happen after death. 1Lo B Quill T Tulsky J Discussing palliative care with patients.Ann Intern Med. 1999; 130: 144-149Crossref Scopus (46) Google Scholar That is not easy, conversations will be hesitant and stumbling, and answers may not be neat. But it is hard to think of a complete vision of a good death, a death that has a holistic dimension and is not simply technically well done, if conversations do not address this man's answers to these questions, especially one who writes in capitals “I HAVE A GREAT LIFE!” and who intends “to suck all the marrow out of life.” Finally, as one accompanies this individual to the end of his life, one will face not only the optimism and gratitude of the engaged realist who wrote the case study, but also someone who will face fear, and discouragement, and regret. I doubt the tears are over, for this man or for those who care for him. Helping him to die a good death means not only listening to his confident proclamation of accepting death, but recognizing someone this much in love with life will not die without a spiritual struggle. To the extent this man will allow it, it would be wrong for those who are trying to provide palliative care to avoid accompanying him in that part of his dying. Myles N. Sheehan, SJ, MD is Senior Associate Dean, Education Program, and Associate Professor of Medicine, Stritch School of Medicine, Loyola University Chicago, Maywood, Illinois, USA
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