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First published in Hospitals & Health Networks OnLine, December 7, 2004
The death of Elisabeth Kübler-Ross earlier this year makes it an appropriate time to look at what we are doing right, and wrong, with patients at the end of their lives.
Elisabeth Kübler-Ross--physician, visionary and advocate for the dying--died at the age of 78 on Aug. 24 of this year. The author of the best-selling book On Death and Dying (1969), she was a controversial figure for much of her adult life, for reasons ranging from her passionate efforts to bring end-of-life issues out of the clinical closet to her professed belief, toward the end of her days, that there was life after death. Along the way, she revolutionized the way many patients and providers viewed dying and the way terminally ill patients were and are treated. As Susan Levine, executive director of Hospice of the Valley in Phoenix, said, "She got people talking about death and dying. It was the last taboo after sex and money, [in terms of] things you don't talk about in polite company."
Kübler-Ross' most famous contribution to this once-touchy debate was her description of the five stages of confrontation with one's own death: denial, anger, bargaining, depression and acceptance. This brilliant paradigm seems to me to be a perfect framework for examining how health care is doing with regard to those who are coming to the end of their life's journey.
Anyone confronted with a dreadful truth--whether it is news that aircraft have been rammed into the World Trade Center or the announcement that nothing more can be done for your illness or condition and that you are going to die soon--will at first try to deny it. The natural reaction is that it can't be true, not you, not the person you love, it's too soon, she's so young, he has a family. Some patients and families face the truth head-on and make appropriate plans; many others refuse to believe it.
This latter group, unfortunately, may find perfect partners in the health care system among providers who also refuse to believe that death is ever inevitable. Despite all that has been done to promote hospice care, advance directives and other ways of making dying easier and more in the control of the patient, every day futile care is provided to--or forced upon--patients who cannot benefit from it. Sometimes this is due to providers' refusal or unwillingness to believe that there is nothing more they can do. Sometimes it is family members or other loved ones who simply can't let go.
Sometimes third parties get involved, and then it's a real mess. One recent case, among many, is that of Terry Schiavo, a Florida woman who has been in a persistent vegetative state for 14 years. Her husband sought to have her feeding tube removed; her parents bitterly opposed it. After a state court ruled in favor of the husband, the Florida legislature rushed through a law allowing the governor to order that the tube be re-inserted. The governor exercised his new prerogative. As of this writing, Mrs. Schiavo's husband's wishes have been upheld by the courts, but appeals were planned.
This is not the first such case, but it is a particularly wrenching one because the health care professionals caring for Mrs. Schiavo are caught between two warring parties, each with a different agenda. And because Mrs. Schiavo left no written advance directive, the fight is likely to go on for some time.
On the other hand, denial on the part of providers is also common; the searing Pulitzer-Prize-winning play W;t portrayed the struggle of a terminally ill, highly intelligent patient to die on her own terms despite the efforts of the health care system to thwart her. I remember a friend of mine telling me that her grandmother received CPR 70 times in the last week of her life.
According to the most recent available data, despite the fact that the Medicare program covers six months of hospice care, 30 percent of patients died within a week of being admitted to hospice, an increase of 9 percent from 1992 to 2000. A 2002 study by the Medicare Payment Advisory Commission suggested that the main reasons for this were "the difficulty of making prognoses of death within six months, unwillingness of beneficiaries to give up curative care, and the greater availability of nontoxic therapies that make continuing treatment more palatable." Undoubtedly so; but the resistance of providers to the fact of death, and their unwillingness not to try "just one more thing," remains part of the equation.
Anger in the face of death is nothing new; it is one of the visceral responses. Indeed, recently a man who had just been told that his Marine son had died in the Iraq war responded by setting fire to the van in which the Marines who informed him had arrived; he suffered severe burns.
Frustration and anger on both the patient and the provider side remain characteristic of end-of-life care. Patients and families are angry that nothing more can be done, and are even angrier if the death could have been prevented (if they know that this is the case). The patient-safety movement may be gaining a little steam, but the fact remains that patients die every day from sloppy care, understaffing, medication errors, surgical errors, treatment errors, dehydration, inattention and the occasional serial-killer nurse or physician. This anger is often directed at health care professionals who have done their best, and can be extremely damaging.
On the other hand, health care providers also get mad at patients who have the bad taste to become terminally ill. And, tragically, one of the most common manifestations of that anger is abandonment. On Aug. 10 of this year, a letter was published in the New York Times that had been sent to a cancer specialist at a hospital in New York. I cannot quote it all, but the gist of it was that the man who wrote it believed that the physician who had treated the writer's wife for seven years walked away from her once it was clear that nothing more could be done for her:
There is no such thing, legally, as emotional malpractice, but this certainly sounds like it.
Anger at the prospect of death is best channeled into research, better hospice and end-of-life care; efforts to prevent patients from being overtreated or even tortured at the end of their lives; protecting patients from abandonment; more use of advance directives; and better family counseling. We should not be taking it out on each other.
I do believe that the health care system is doing a better job of trying to strike a bargain with death. I wish I were as confident about the reasons. I am haunted by the document that crossed my desk that listed advance directives as a cost-containment mechanism. I remain opposed to physician-assisted suicide, although I know there are times when patients feel they have no other options, given this country's stupid and puritanical attitude toward pain control and our continued lack of emotional support for the dying.
I also know about the demographics, about the huge dome of baby boomers headed for Medicare (if it still exists in 2011); the stresses on hospitals and nursing homes; the medical and nursing education establishments' distaste for long-term care, management of chronic disease and terminal illness; the erosion in retiree health benefits; and our youth-crazed culture. The statisticians continue to prattle about how most health care expenses occur in the last six months of life, as though that were inappropriate; would you prefer that they take place in six months of a completely healthy person's life?
Nonetheless, we are fortunate that the bargaining positions of both patient and provider have strengthened in recent years, even if the reasons are suspect. It is estimated that approximately 20 percent of U.S. adults have living wills or other advance directives. The majority of hospital patients now die after having rejected at least one form of life support. More patients are able to die at home.
Health care professionals, too, are learning. More medical and nursing education addresses the topic of death. More oncologists are being trained to understand that not every patient can be saved. And more nurses and physicians are learning that there is a middle ground between making every last-ditch effort and abandoning the patient.
I also think there is more sophistication in the evaluation of any given situation. Years ago, David Jackson and Stuart Youngner wrote a now-classic piece in the New England Journal of Medicine (Aug. 23, 1979) in which they warned that there are factors influencing a patient's decision to refuse treatment that should be examined. Among these were a fear of burdening one's family, financially or physically; depression; and concern about conflicts with family members' wishes. These complications are still with us, but they are likely to be more manageable now, partially because physicians, nurses, bioethicists and chaplains are far more skilled at dealing with them.
Creative artists have long pondered the human effort to bargain with death, from the Bible to the great film The Seventh Seal. In these latter days, it seems to me that one's chances of success depend on what it is one is trying to bargain for.
Regardless of one's religious beliefs, or lack thereof, death is generally not a positive event. Even if one believes that the loved one is going to a happier place, those of us left here on earth will have lost the pleasure of that person's company. I believe there are stages in the misery of loss, just as Kübler-Ross saw the larger picture. After altogether too many deaths among those I cared about, I would characterize those stages as shock, stoicism, acute unhappiness, depression and partial recovery. I say "partial" because I do not think anyone really totally recovers from the loss of a loved one, and I don't think there is anything wrong with that.
In the face of death, even if we knew it was coming, we are first shocked because the actual fact of death is so complete; then, at least in this culture, we are supposed to be stoic, to keep a stiff upper lip, to follow the example of Jackie Kennedy, numb but dignified, doing what had to be done. At some point after that, we dissolve into tears and suffer severe emotional pain, for which we are often ostracized as being weak. I believe that is followed by classic depression, which can be more or less acute, and then, finally, we crawl out of it and go on, however wounded.
The problem, of course, is that when everyone is bummed out, bad decisions can be made, about everything from lawsuits to disposition of the body to appropriate memorials. From extremely bitter experience, I know that people can behave worse in connection with a death than they might behave at any other time in their lives. All that can be asked is that we be patient with each other, and have the wisdom to know that we have all been touched by a profoundly powerful, and irreversible, human event.
The idea of accepting any limitation is not present in the American lexicon, and death is the ultimate limitation. I think that if we were to spend more time learning from the Britons who survived the blitz, the Jews of World War II Europe, the survivors of Srebeniça and Kosovo, the refugees of Rwanda and Cambodia and Sudan, and others for whom death was and is a daily meal, a commonplace event, we would not be so arrogant with regard to what can and cannot be done about the end of lives.
What is bad about our lack of acceptance of death is that patients, families and health care professionals have unreasonable expectations and do unreasonable things in pursuit of them. What is worse about our lack of acceptance of death is that there are many predators lurking out there, preying on the sick and defenseless, offering laetrile and herbs and electric pulses and other useless approaches that turn hope into a sickness in itself. They get fat on suffering.
What is good about the American tendency to stand up to death is that it represents one of our quintessential qualities, which is our apparently endless capacity for hope. There is probably no more admirable emotion, other than love, than hope; it is always a light in the darkness, a crevice in the insurmountable wall, a moment of peace in the endless battle. It is a healing force, and one that should never be discounted. Our job in health care is to strike a balance between the healing power of hope and the necessary truths of death and dying, so that those who are on that journey, and the people who are caring for them along the way, can retain hope while accepting the most basic human reality of all.
If you or those you love have not executed a living will, I urge you to explore the option at either www.partnershipforcaring.org or www.lastactspartnership.org. And make sure the important people in your life know your wishes.
First published in Hospitals & Health Networks OnLine, December 7, 2004
© Emily Friedman 2004
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