Back Off on Hospice Care
Charlotte Allen set back our nation's already inadequate knowledge of hospice care and other end-of-life issues with her grossly inaccurate article, "Back Off! I'm Not Dead Yet," in Sunday's Washington Post Outlook section. Allen depicts hospice as a cold-hearted and foreign place that intentionally snuffs out dying patients. She supports this depiction with nothing but the flimsiest anecdote, buttressed by loaded vocabulary. But it is dangerous myth perpetuation, all the same.
Allen's impression of hospice appears to be based largely on an anonymous call she answered while visiting her 93-year-old father, when he was dying of prostate cancer. She writes: "The phone rang, and I picked it up. On the other end, a middle-aged male voice inquired about my dad's condition. 'Sooner or later he's going to go into a coma,' said the voice, which never got around to identifying its owner but was presumably a friend of my parents'. 'Then, what you have to do is take him to a hospice. That's what we did with my mother. They'll put him on a morphine drip, and he'll be gone in a few days. They know what to do.'" Had Allen availed her father of hospice care, for the five additional months that he lived there would have been a team of medical, social and spiritual professionals, as well as volunteers, to assist him and the family -- at home and at Medicare expense. Without having had that experience, Allen remains misinformed about hospice care.
First, most people are not "taken to a hospice." Inpatient hospices are few, and most hospice patients remain at home. Ninety percent of people interviewed on the subject say that's where they prefer to die.
Although Allen writes that "not all hospices engage in practices that deliberately hasten death," hastening death has nothing to do with any hospice. Rather, the focus of hospice care is to make a dying patient more comfortable. And, in some cases, effective pain and symptom management has actually been shown to extend life.
Allen also mischaracterizes a practice that she calls "terminal sedation" and alludes to it as a close cousin of assisted suicide. More appropriately called "palliative sedation," this is a last-resort measure that uses sedative drugs to reduce awareness of pain, sometimes to the point of unconsciousness, while disease takes its normal course. There is nothing "ethically murky" about it. It is initiated only at the request of the patient or at the direction of the living will, power of attorney or health-care proxy. It is sometimes used in parallel with, but does not by definition involve, voluntary cessation of eating and drinking. And it is used only when nothing can be done to control excruciating pain and unbearable symptoms that sometimes occur near the end of life.
Very separate is physician-assisted suicide, a highly regulated practice, legally limited to one state. Assisted suicide has nothing to do with hospice -- except for the fact that it may be requested by terminally-ill people, who may or may not be receiving hospice care. In Oregon, assisted suicide requires a request witnessed by two people, a 15-day waiting period, a review by a doctor who agrees that the patient is terminally ill and has come to the decision voluntarily and with sound mind, and a confirmation of those findings by a second physician. Though Allen claims that the American Academy of Hospice and Palliative Medicine "effectively endorsed the practice," the academy's position on assisted suicide, and whether it should be regulated or banned, is one of "studied neutrality."
Finally, Allen suggests that "people facing end-of-life decisions may well feel subtle pressure from the medical and bioethical establishments to make the choice that will save the most money, as well as spare their relatives and society at large the burden of their continued existence." This is most certainly not true of hospice, which is itself designed to alleviate the burden on family and friends. And, if we're going to be crass, no institution dealing with the ill has a financial incentive to hasten death. That includes hospice, which is mostly covered by Medicare.
Allen champions the idea of keeping a person in a vegetative state endlessly on life-support, a preference she reached watching Terri Schiavo. What she should examine is the reality of death and dying, a situation which we all must face, made infinitely better by the palliative care that hospices are dedicated to providing.
Myra MacPherson is a writer and member of the board of directors for the Hospice Foundation of America.