“We’re thrilled so many people are calling and writing for information on VSED and other peaceful, legal end-of-life options.”
This post on the Compassion & Choices
(C&C) website signals one of the right-to-die movement’s most skillful strategies of recent years.
VSED stands for “voluntary stopping of eating and drinking.” In 2011, C&C launched a nation wide campaign entitled, “Peace at Life’s End — Anywhere” to educate people on the virtues of VSED as a legally protected way of committing suicide in all 50 states. Since suicide is no longer criminalized, and competent persons cannot be forced to eat and drink, patients who want to die are advised to choose to stop eating and drinking.
A case study published last fall on Medscape by Arthur L. Caplan, head of Bioethics at New York University Medical Center, revisits the topic. A man in his eighties hospitalized by a series of minor strokes was told by his doctors that he could no longer live independently at home but would need to go to a nursing home. The proud World War II veteran found the prospect so repugnant that he withdrew permission from his nurses to turn him in bed, understanding that in so doing he risked developing serious skin ulcers (bed sores). His doctors and nurses warned him that the ulcers would grow painful and eventually cause infections that could kill him. He told them that this is what he wanted to happen. Psychiatric evaluations determined that he was competent which ruled out court authorized force-feeding on grounds of incompetence. At length, the man died in the hospital, covered with huge bedsores. “Basically, his body fell apart,” Caplan reports.
The story illustrates the limitations on caregiving when patient consent is refused.
Caplan likens the man’s refusal to the refusal of life support such as dialysis and ventilators. Because such decisions are guaranteed by patient autonomy, patients have a “right” to say to caregivers “don’t turn me.” But Caplan also defends the right of healthcare institutions to establish policies stating that they always turn people in bed when needed. Thus he frames the ethical question in terms of a conflict of rights between patient autonomy and the rights of institutions: “The nurses cannot work if the unit becomes a smelly, untenable mess, and although this man had his rights, other people have their rights too…. That is a tradeoff that has to be weighed at all times.”
Should all refusal decisions be honored? Ordinary vs. extraordinary care
Caplan says something revealing. Hospitals, he says, have a right to say in their policies: “We always turn people and we do not shut off the heat in a patient’s room. There are certain things we are not going to do, and as soon as someone says they do not want that, we need to talk about moving them home or moving them elsewhere because there are some steps that we will not take here.”
Likening bed turning to leaving the heat on tells us that Caplan sees some relevant difference between refusing treatments such as use of a ventilator and refusing to be turned in bed. Catholic healthcare ethics formulates that difference by appealing to the distinction between “extraordinary” (or “disproportionate”) means of medical care and “ordinary” (or “proportionate”) means. Ordinary means, such as shelter, basic forms of hygiene, feeding and repositioning are not, strictly speaking, medical procedures, even though some of them, like artificial feeding, may require technical intervention. They are basic and obligatory forms of human care.
As a self-professed “progressive bioethicist” Caplan would surely support the right of patients to refuse food and water and oppose hospital policies that refused to honor such requests. And yet he supports hospitals in establishing policies that refuse to honor requests against repositioning. His misgivings against the latter stem from his concerns that some patient decisions can “affect nursing and staff morale and…become a problem in the delivery of care for others.” He does not frame his objection in terms of right and wrong. But why might a patient’s refusal of repositioning damage morale? Perhaps because caregivers believe that complying with such a request is wrong? But caregivers might also think that refusal of food and water is wrong, as did some who cared for Terri Schiavo. If their morale is harmed by such decisions, should policies be passed stating that such refusals will be denied?
Voluntary refusal and VSED: the role of intention
VSED specifically concerns itself with the refusal of food and water. The elderly man apparently only refused repositioning. But refusal of food and water and refusal of repositioning are ethically similar if the reason that refusal is chosen is to bring about death. Caplan says nothing about the man’s intention for his refusal. But Compassion & Choices defends VSED precisely as a legally protected form of suicide. It argues, in effect: ‘If the law prevents you from healthcare assistance in self-killing through acts of commission, then use the system to assist you through acts of omission.’
Rita Marker has an excellent article on VSED and the Caplan Case in the most recent edition of Update (published by the Patients Rights Council). She says that although it is legal for competent adults to refuse forms of care that are (morally speaking) ordinary and proportionate, nevertheless, healthcare institutions and individual providers may refuse to support decisions they judge to be inappropriate—“but only if they do so in a legally acceptable way.” She urges institutions and providers to establish in writing principles and policies that set forth clearly the kinds of refusal requests they deem inappropriate and consequently will not honor.
Federal law as well as state laws permit this refusal, but only if patients and staff are informed of those principles and policies in a timely manner—generally at the time of admission. Failure to formulate such principles and policies will force health care providers to be enablers of self-destructive behavior or face legal jeopardy.