By Susan Rosendahl-Masella, PhD
Ethics Network Coordinator
“We know with near certainty that the majority of patients who die in this country die with pain that they do not need to have, with dyspnea that could be relieved, in isolation rather than in the comforting presence of loved ones, with desperate meaningless, last-ditch therapies they do not want and that cannot help them. We have some great examples of world-class end-of-life care in this nation. Best practice is based on best science. But these are not the prevailing practices. They are not even the common practices. They are the rare practices. The best is rare.”Dr. Donald M. Berwick, MD, MPP, President and CEO of the Institute For Healthcare Improvement, made the above remarks in a keynote address at the American College of Physician’s Annual Convention in 1999. Similar words are echoed more recently on the Cover of the September 18th issue of Time magazine (Volume 156, No. 12)—“ Too many Americans spend their final days in a hospital or nursing home, alone and in pain. It doesn’t have to be that way.”
Standards and best practices in end-of-life care are beginning to evolve albeit not without controversy. One of the areas of controversy pertains to the role of antibiotics in end-of-life care. As Dr. Hallenbeck (1999) notes, antibiotics can give relief to discomfort associated with certain infections. On the other hand, life-prolonging effects, if present, may be seen as burdens if the goal of care is comfort only. At present there is no clear answer, and a cost-benefit analysis of the benefits and burdens will need to be explored and discussed. To read more about best practices in the care of the dying, including the areas of consensus and controversy regarding pain management, non-pain symptom management, communication, ethics/difficult decisions, psychosocial and spiritual care, and system issues (i.e., interdisciplinary approach) see Dr. James Hallenbeck’s article, Best Practices in the Care of the Dying, published in the Annals of Long-Term Care in 1999. The article can be accessed on-line at: http://www.mmhc com/nhm/articles/ NHM0007/
hallenbeck.html.
John Cloud writes in Time magazine about a kinder, gentler death. He states that while many of us plan for major events in our lives (e.g., two weeks away from work or our retirement), one of the areas that we are unlikely to plan for is dying. According to Frank Ostaceski, who runs a San Francisco home for the dying, many of us “have more preparation for how to operate our VCRs than we do for how to die.” And, as Molière remarked several hundred years ago, “we die only once—and for so long! ” So we should choose to die well. Cloud’s article discusses such issues as how to prepare for death and pain management. Also, five stories of individuals in their last days are presented. Bill Moyer’s program On Our Own Terms is also mentioned in some detail.
In Time there is also a short article called A Physician’s Lament written by Dr. Sherwin B. Nuland, clinical professor at Yale and author of several medical books including How We Die. Dr. Nuland discusses the fact that most physicians are trained in curative medicine and that they are motivated by the challenge to fight the disease, and when they are able to cure or bring about improvement they feel victorious. But when people are dying, there are no more challenges for the physician. The physician is first psychologically defeated, then physically defeated, and eventually withdraws from the situation and the patient. According to Dr. Nuland,
“We must begin by becoming more willing to recognize the moment when our efforts serve to worsen an irretrievable situation. Having acknowledged such a time has come, we must abandon not the patient but the barricades on which we have been fighting the inevitable. For many of us, this is the most difficult moment of all. But it can be made easier by looking to rewards that accrue, for us and for those who depend on us for the relief that we can bring them. . . . If we cannot heal in one way, we must learn to heal in another (p. 67)
.”
Above all we must respect the individual’s wishes and preferences regarding treatment, which hopefully has been documented and/or discussed with the physician, as well as the family.
It is possible to order reprints of the articles appearing in Time by calling 212-522-1770 or e-mail TimeReprints@timeinc.com.
Posted on 12/22/00.
Who is the Author of the Quote? was published in the Winter 00-01 edition of the Ethics Network News and is posted on-line at https://www.angelfire.com/on/NYCLTCethicsnetwork/dec_jan00-01quote.html
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