Is death better than disability?

Michael Cook
11 January 2010
Reproduced with Permission

When assisted suicide is legalised most of the people who will die are disabled. And American disability advocates take a very dim view of it. This is the theme of a hard-hitting series of articles in the latest issue of the Disability and Health Journal.

The editor, Suzanne McDermott, of the University of South Carolina School of Medicine, writes that she changed her own mind after studying the issue. At first she believed that assisted suicide was solely a personal autonomy issue. But eventually she was persuaded that it is at the heart of the movement for disability rights: "Almost all people at the end of life can be included in the definition of 'disability'. Thus, the practice of assisted suicide results in death for people with disabilities."

The special issue is a response to a controversial 2008 decision by the American Public Health Association (APHA) to back "aid in dying" (ie, assisted suicide). This slipped almost completely under the media's radar, but it means that the official policy of the "oldest, largest and most diverse organization of public health professionals in the world" - 30,000 of them - is to support assisted suicide to the hilt. Or, as they prefer to call it in Oregon, "patient-directed dying" or "physician aid-in-dying".

Rather than worrying about some ambiguous language in the Obama administration's health reform legislation or scrutinising the publications of his health advisors for a few indiscreet phrases, the elderly and their relatives ought to be worried about the 30,000 members of the APHA. They are the ones who could be sitting on the "death panels". The authors of the articles in the Disability and Health Journal certainly are worried.

Several themes emerge from the articles.

First, the very existence of legalised assisted suicide leads to an expectation that the disabled, elderly and infirm should shuffle off their mortal coil a bit early to relieve the burden on their carers.

This fear has been ridiculed by supporters, who contend that all they want is choice at the end of life and that a lifelong experience of disability is different from the pain of seeing one's life ebb away. They think that disability advocates are demonising euthanasia lobby groups and exaggerating their own vulnerability

Nonsense, says Diane Coleman, of the lobby group . She points out - quite eloquently - that pity can be more dangeNot Dead Yetrous than a mad doctor in a nursing home. We are, she says, "more frightened by the doctors who are out to help us but who see our lives as burdensome and who know little about options that make life with disability valuable."

Why should valuable resources be wasted on them, anyway? "Every week, I hear another person with a disability recount a disturbing interaction with a physician, nurse, or other health professional who clearly transmitted the view that life with a disability is inherently burdensome," she writes. "It does not feel safe to have one's life in the hands of someone who views that life as unfortunate, maybe even tragic or unfair."

Second, advocates of assisted suicide and euthanasia ignore the experience of the disabled because they think that a dying 80-year-old is radically different from someone who has spent a lifetime in a wheelchair. Show me the evidence for this, Ms Coleman demands. Anyone, at any age, can learn to cope with disability. "To dismiss these efforts as futile because the individual is near the end of life has no empirical foundation and raises questions about the commitment of assisted suicide proponents to the genuine self-determination of people with terminal illnesses."

What these articles convey strongly is that supporters of assisted suicide simply do not care how much collateral damage their campaign for "dying with dignity" will do to people who have lived with their disability for years. Ms Coleman savagely comments: "Proponents of legalized assisted suicide are willing to treat lives ended through abuses of the practice as 'acceptable losses' when balanced against their wish for a pleasant way out and their unwillingness to accept disability, or responsibility for their own suicide."

Third, the danger is not mandated euthanasia, as in Nazi Germany. Rather, it is a subtle and widespread expectation that death is better than disability. "If the legalization of assisted suicide continues, I believe the rank and file will some day see nothing wrong with hastening the deaths of many people," writes Dr Carol J. Gill, director of the Chicago Center for Disability Research. "They will stand by and do nothing to stop it and will endorse the policies and institutions that advance it - not because they are evil people but because it will no longer be evil in our culture to do so. It will be compassionate, respectful, routine."

Fourth, several authors argue forcefully that Oregon's Death with Dignity Act, which is the model for assisted suicide in the US, is deeply flawed. After about 15 years, several intractable problems have emerged. The authors claim that there is very little patient control; that statistics are incomplete; that oversight is minimal and secretive; that safeguards are easily circumvented; and that negligent doctors cannot be prosecuted. Allegations that in Oregon and in the neighbouring state of Washington, which has also legalised assisted suicide, the circumstances of deaths are routinely falsified are especially disturbing. In fact, Washington actually requires that doctors falsify the death certificate by listing the terminal disease as the cause of death rather than the lethal dose of barbiturates.

Nearly always the debate over assisted suicide focuses on disabled people who want to choose death. Why not ask disabled people who want to choose life? They are the biggest stakeholders. Like most academic publications, the Disability and Health Journal normally offers obscure and specialised reading. But this month's issue is a must-read for anyone interested in the future of "death with dignity".