The search for a peaceful death & why directives can failIf advance care planning is not all there is to the search for a peaceful death, what else is there? The author of this web site found the expression "search for a peaceful death in the subtitle of Daniel Callahan’s book "The Troubled Dream of Life." This book is not an every man’s guide to the search. It is a thoughtful examination how our culture’s relationship to modern medicine often tends to undermine the prospect of peaceful death. In his book, Callahan talks about what a peaceful death has come to mean to him (pages 195 and 196, Simon and Schuster paperback edition). While he includes things he personally wants or wants to avoid, the emphasis on his connections to his personal community is striking. For example, in addition to "I hope my death will be quick and not drawn out." he states "I would like my death to matter to others, to be seen in a larger sense as an evil, a rupturing of human community…." Callahan demands are rather modest and his expectations realistic. "I recoil at the prospect of…pain…though I hope I will bear it well if that is unavoidable." And, "I do not want to be an undue burden on others in my dying, though I accept the possibility that I may be some burden." Callahan’s definition of a peaceful death will probably appeal to many people, but he leaves it to each one of us to fashion our own particular definition. By the way, he also emphasizes that this is a task that should not be done alone. It may not be wise to defer completing directives until you have discovered your definition of a peaceful death and feel prepared to die.Perhaps the decision to complete advance health care directives is a beginning point for a process of preparing for death. Or, it may be a point along a journey that you have already undertaken. There are practical reasons for not delaying completing your directives, even while in robust health. Serious illness may strike us at anytime and foreclose additional preparation. Completing advance directives can be part of a gradual exploration and unfolding of the personal meaning of death; and, at the same time, prudent preparation for unanticipated developments. Why do advance directives sometimes fail to control health care decisions in the way that they want?Here is a common idea of what advance care planning means:
Every assertion of that paragraph is either misleading or simply wrong. That includes the last one about prolonging life in the absence of directives. Decisions to forgo life-sustaining treatment that result in death have been made for years and continue to be made in the absence of advance directives. Too much has been expected of advance directives. The movement that established advance directive laws in every state and the District of Columbia defined the problem of unwanted medical treatments at the end of life as a procedural and legal problem. With the liability protection for providers and the vague, standardized forms published in state statutes (and readily available from local hospitals, aging services organizations, and national organizations such as Choice in Dying), the overuse of life-sustaining treatment was supposed to subside. "Living Wills Are Rarely of Aid..." (The New York Times, April 8, 1997) The article following this disconcerting headline reported on the first large-scale study of decision-making involving patients who were near the end of life. Among other things, this study found that physicians were often unaware of a patient’s treatment wishes even when advance directives were available. This lack of awareness did not materially overcome this problem. The study found that few of the available advance directives had medically useful information. No directives, including the ones available at this site, can anticipate all of the possible medical circumstances that you might experience. The forms at this site go well beyond the vague language of the documents that most people have completed. However, the real source of the difficulties sometimes experienced with end-of-life decision making may have more to do with cultural and professional attitudes than it does with the availability or content of advance directives. According to Callahan, these attitudes may well be the result of the transformation of medicine during the last fifty years into a science-driven practice in which the conquest of death became the overriding value. There is much in health care settings that works against careful attention to the end-of-life wishes of patients.In every relationship with a professional or expert, client dependence on the professional invites the professional to over reach his or her authority. (In fairness to physicians and other professionals, over reaching one’s authority is common in all types of relationships.) When the expertise is great, as it is with physicians, and the stakes high, as it is in the care of seriously ill patients, the risk of over reach is perhaps greatest. Physician training and their practical experience, including their experience with advance directives may, at times, work against maintaining a focus on a patient’s well being, as defined by the patient. Physicians sometimes intimidate their patients and surrogates even without trying. Studies have shown that physicians frequently truncate communication into a one-way flow from them to their patients. They are, after all, under tremendous pressure to deal quickly with their patients. Patients and their agents and families are highly dependent on their physician’s emotional support, as well as their superior knowledge. The understandable tendency of patients to defer to physicians can lead to physician assumption of all decision-making authority, and to taking exception if patients and health care agents do not agree with them. It has been frequently observed that physicians tend may become concerned about the decision-making capacity of a patient only when the patient disagrees with their recommendations. Physicians who have studied physician behavior have found that physicians tend to view all treatment decisions as technical decisions; that is, decisions only requiring their good medical judgement. There is little room for patient values when treatment decision making is viewed in this way. Both the law and medical ethics make it very clear that only a patient knows whether the benefits of a particular treatment outweigh the burdens. Even physicians who acknowledge this may assume that they know better than anyone else does what an incapacitated patient would want. Research has shown they don’t. Many physicians consider advance directives to be of little value in guiding health care decision making.It has become politically correct to endorse living wills and other advance directives. The evidence suggests that physicians still don’t take them very seriously. This probably should not come as a surprise. It may say as much about the directives they are presented with as anything else. Following a written treatment instruction that may have been signed years, possibly decades, ago to make a life or death decision must take some getting used to. Physicians are accustomed to making medical treatment decisions at the time that all of the medical facts are available. They are accustomed to talking with family about treatment choices if the patient cannot communicate or if they think the patient probably can’t understand. (This may be why physicians are, by and large, comfortable with the health care power of attorney appointing a legal spokesperson for a patient.) In addition, most directives contain vague treatment instructions. Vaguely worded statutory living wills are what nearly everyone in health care has been promoting for years. Physicians, with the possible exception of geriatricians, are provided directives for only a minority of their dying patients. Thus, experience has probably taught most physicians not to expect that any advance directive to be available, much less a useful one, will be available for a patient who is no longer able to make his or her own medical decisions. At best, many physicians are apt to believe that the most advance directives can do is to provide legal protection when life-sustaining treatment is forgone—a many still refuse to believe that they are adequate in this regard. If decision making for an incapacitated patient is going smoothly, physicians may see no reason to consulting the patient’s prior treatment instructions. The message in what has been learned about how decisions are made in health care is not to distrust physicians. To the contrary, it is to emphasize the importance of your relationship with your physician. It should be emphasized that the "best deaths" are most likely marked by the involvement of a caring, competent physician. Many times it is the compassion and skill of a physician that enables patients and families to work through difficult decisions and arrive at a choice that truly respects a patient’s values. There has been a fair amount of railing about physician failure to attend to a patient’s wish to forgo life extending treatment as assiduously as they attend to saving life. Is it a little disingenuous to expect physicians not to echo the overwhelming denial of death and aging that characterizes American culture? It sometimes hard to know who will be caring for us should we become gravely ill. This means we need to take special care in our selection and preparation of both our documents and our health care agents. It has been suggested that the cost conscious managed care systems will be only too eager to avoid unwanted life-prolonging medical care. That may or may not be true; but physicians in managed care and elsewhere are under increased time pressure. This is apt make it more difficult for physicians to devote the time to seriously ill patients and their families that good end-of-life care requires. Patients, their families, and their agents need to be able to depend on their physicians. Genuine efforts to improve end-of-life care are underway. Meanwhile, vigilance is also needed to help keep the focus in the proper place: what are the patient’s values and wishes and how do we best honor them.
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