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Doctors at Gundersen Lutheran, long a pioneer in ensuring that the care provided to patients in their final months complies with their wishes, ask a terminally ill patient how staff members can help her be comfortable. (Sher Stoneman)
The Spirited Atheist is back, after a break for obligations associated with impending book publication. One of the most irrational news developments I missed last month (there were so many) was President Obama’s abandonment of a modest, commonsensical proposal to allow Medicare to pay for voluntary consultations between patients and their doctors about end-of-life care. This was a cave-in to the extreme religious right, which takes the absurd position that merely talking with your doctor about this subject constitutes a “death panel.”
In my book Never Say Die: The Myth And Marketing of the New Old Age, I discuss the huge gap between Americans’ wishes about end-of-life care, as expressed in numerous public opinion polls, and what actually happens in too many instances–futile, expensive, often painful procedures performed on people too sick to leave the hospital alive–much less survive with a decent quality of life. Ninety percent of Americans say they want to die at home but only 20 percent do so. Half of Americans die in hospitals and another 25 percent in nursing homes, after a long period of suffering from chronic, incurable conditions that finally become untreatable. An astonishing one out of five die in intensive care units, often unconscious, isolated from loved ones and hooked up to machines that do nothing but prolong an inevitable death.
This happens partly because of the natural human tendency to procrastinate about addressing painful subjects with relatives and partly because doctors are often too pressed for time–and too uncomfortable with death and dying themselves–to respond when patients do bring up such issues. Just try to get a straight answer out of an oncologist, as an 89-year-old friend of mine did when her doctor advised another course of chemotherapy even though her cancer had metastasized to her brain. “Doctor,” she asked, “what chance is there that I’ll have a few months more of life that I can enjoy with my family?” He replied, “We can’t know these things.” She replied, “No, but we can use our common sense,” and declined further treatment. She died a month later in hospice, surrounded by her children, grandchildren and great-grandchildren. What if she hadn’t been clear-minded enough to to speak for herself? What if her children, out of love, guilt or a combination of the two, had subjected her to treatment that she wouldn’t have wanted? That is what advance medical directives are intended to prevent.
Voluntary consultations with doctors are not about physician-assisted suicide–or about denying aggressive medical care to anyone who wants it. They could, however, be the first step for adults who want to make their wishes known, in a legally binding way, before a crisis arrives. A conversation with a doctor might encourage people to go home and have conversations with either their spouses or adult children about what they do, and do not, want to have done to them medically if they are unable to speak for themselves. In most states, not only a living will but the designation of someone else as a health care proxy–a person legally authorized to make medical decisions if the patient is unable to do so–is needed.
There are two basic positions about medical care as the end of life approaches. The first is, “Do everything–no matter what.” The second is, “Do everything possible only if there is a reasonable chance of my recovering.” Only a third of Americans, in a fascinating survey conducted by the Pew Center for the People and the Press, say they would tell their doctors to “do everything” regardless of the likelihood of recovery. Yet only 30 percent of Americans now have living wills and even fewer have named a health care proxy. And more than 40 percent of adults have never even had a conversation with their parents about what either parent wants.
So why is the religious right so opposed to providing a forum in which such conversations might begin? Leon Kass, a conservative bioethicist and chairman of the President’s Council on Bioethics under George W. Bush, is a longtime opponent of living wills because “it’s preposterous to think that we can have the kind of foreknowledge to cover the myriad of circumstances in which we may find ourselves. Nor can you accurately pass judgment on how you’re going to feel about your life in a different circumstance…No kind of legal approach and no kind of medical approach are going to take the place of a loving, prudent, caregiver on the spot.” And what if there is no “partner,” prudent or otherwise–as is the case for most women over 80? Of course it’s preposterous to assume that we can know exactly how we will feel about every unknown circumstance in the future, but there is much we do know.
My mother knew, when she was in her 70s, that she never wanted to die attached to machines in an intensive care unit. She wrote down her wishes, appointed my brother and me to act for her in the event that she cannot act for herself, and–thanks to her–we are in no doubt about what to do. Her views at 90–when she is obviously much closer to death–have not changed at all. I hold the same views. I also know that I would never, if I had Alzheimer’s disease, want to undergo major surgery on, say, my heart and prolong a life that could only be a continuing descent into darkness. I may not know exactly what I would want in every conceivable circumstance, but I know a great deal about what I would want in most circumstances. To say, as Kass does, that because we cannot control everything, we should not try to control anything, is an insult to human intelligence and reason.
The heart of the religious right’s opposition to advance planning for end-of-life care is its disdain for human reason. It should be noted here that most mainstream religions have no objection at all to living wills, although many do oppose phsyician-assisted suicide–or any other kind of suicide.)The right to refuse treatment is viewed by nearly all religions in a very different light from suicide. I do favor the right to physician-assisted suicide (and will write more about this subject in future columns), but this has nothing to do with the kind of advance directives that my mother has drawn up to ensure that her medical care reflects her values. As Oregon’s physician-assisted dying law has demonstrated over the past decade, few people will ever avail themselves of the suicide option even in extreme circumstances. But the question of whether we want medicine to be used aggressively to prolong our lives–however unbearable those lives have become–is one that nearly everyone eventually must face.
If more Americans are not encouraged to think about what kind of care they want and to spell out their wishes to doctors and relatives, we are headed for the worst kind of health care rationing–based solely on age–in view of the rising cost of Medicare as the baby boom generation ages. Right now, one-third of the entire Medicare budget is spent on care in the last year of life. According to a study by the Dana-Farber Cancer Institute, an astonishing one-third of the total–much of it in ICUs–is spent in the last month of life. If even a third of Americans decided, after consultations with a doctor and their families, that they wanted to draw up an advance directive like my mother’s, the saving to Medicare would be vast. No, we cannot know exactly when the last year of a life begins, but most of us have a pretty good idea of when the last month is at hand. As my 89-year-old friend said when she declined further chemotherapy, common sense tells you that if you have a cancerous tumor in your brain and cancer in your bones at such an advanced age, it makes sense to spend your remaining time saying good-bye to the people you love instead of injecting more nausea-inducing poison into your body in an effort to live an extra week or month.
Among the boomers, there is a pervasive fantasy that we will drop dead of a heart attack at some point in our nineties, preferably while making love, skydiving, or climbing a mountain. Wouldn’t it be pretty to think so? In reality, most of us will endure a long period of disability, either mental or physical, before death. It is up to the individual, insofar as possible, to take responsibility for decisions about end-of-life care and not relegate the choices to an impersonal institution, a doctor, or even to a relative whose values may be very different. The time to think about these matters, and talk about them with medical professionals as well as loved ones, is when we are well–not when we are already sick. As for those who believe all such matters are the province of God alone, they are welcome to rely on the mercy of the God who presumably decreed that Alzheimer’s, Parkinson’s and the many other age-related killers and mind-destroyers were part of his divine plan.