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Palliative Care Perspectives : Chapter 7: Psychosocial and Spiritual Aspects of Care : Each Person Dies His or Her Own Death

Of course, how could it be otherwise. Nevertheless, people try to impose their notions of a good death on the dying all the time. All of us have some idea of what it would mean to die well.59-62 For some, dying well is not "spiritual" at all. It is about pain control and, perhaps, taking care of business, such as wills and funeral arrangements. For many it is about relationships - asking forgiveness, being forgiven, expressing one's love and thanks, and saying goodbye. For others, dying well means an essential preparation for an afterlife with eternal consequences. If one believes that he or she will spend all eternity in hell if certain things are not accomplished, the stakes are very high indeed.

It can be very difficult to accept that others choose to live and die in a manner that we may judge to be foolish or harmful. It can be very difficult for me, personally, when I see a dying person or family approach death in a manner that seems to actively generate suffering. I have to remind myself that my job is not to fix, not to eliminate, suffering, but to alleviate it. Well-intentioned interventions may be declined. This saddens me, but it must be so. Sometimes, I am angered by the misery patients and families seem to heap upon themselves. I think, "Can't they see what they are doing, the fools?" Sometimes, I have to remind myself that dying is part of living and that, just as people have every right to be "fools" in everyday life (in my very biased view), so they do in dying. What makes it difficult for me, I think, is that if people are "foolish" in everyday life, it is relatively easy to ignore them. However, the dying and their families depend on us for care. Their suffering is all too visible, even palpable. We cannot walk away. To the extent we can empathize, we, too, will suffer. One of the hardest things in palliative care is to maintain a passion and commitment to good care balanced by a certain detachment - to do the work for the doing without getting hung up on the outcome. Not everybody wants what we have to offer. Not everybody has the same idea as to what constitutes a good death or a good life.

People who choose palliative care as a profession tend to be incorrigible do-gooders. We like to see people who are suffering healed by our hands. Many of us also thrive on the praise and adulation we receive from patients and families for our work. Thus, if patients or families choose a different path and spurn our efforts at healing, or if we are criticized, we tend to take it hard and personally. When this happens to me, I try to remind myself, again and again, that it is not about me, it is about our patients and families. We are not in charge of the outcomes. This is not some symphony we are conducting; we are just there to try to help, to lend a hand. That some will accept our help and some not, that some peoples' dying will seem easier than that of others, is just the way it goes.

Although this material could have been written in any part of this book, I chose to include it here, as our spiritual beliefs and biases tend to run deep. As we come to understand how much suffering relates to spiritual distress, it is tempting to share our own beliefs and practices with those who suffer. However, my impression is that most people are remarkably immune to spiritual imposition. Most of us, I think, would resent the imposition of a form of alien spirituality. It does not work, and it is irritating. This does not mean, however, that our own spirituality cannot serve us. To the extent spirituality is important to us as clinicians, I believe it can invest every aspect of our work. How you feel a pulse or perform a rectal examination will say more about your spiritual practice than will any philosophical comments you might make on the meaning of life and death.

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Palliative Care Perspectives

James L. Hallenbeck, M.D.

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Copyright 2003 by Oxford University Press, Inc.

The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.