The recent Washington Post article entitled, “Who decides when medicine prolongs dying, not living?” perfectly captures my earlier blog on why we’re afraid of death. An excerpt from the Post piece:
[There's a] 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.
*This blog post was originally published at A Medical Writer's Musings on Medicine, Health Care, and the Writing Life*