hawaii helps disabilities

Better Dead than Disabled?  

Wednesday, January 13, 2010 by Michael Cook 

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

The editor, Suzanne McDermott, of the University of South CarolinaSchool of Medicine, writes that she changed her own mind after studyingthe issue. At first she believed that assisted suicide was solely apersonal autonomy issue. But eventually she was persuaded that it is atthe heart of the movement for disability rights: "Almost all people atthe end of life can be included in the definition of ‘disability’.Thus, the practice of assisted suicide results in death for people withdisabilities."

The special issue is a response to a controversial 2008 decision by theAmerican Public Health Association (APHA) to back "aid in dying" (ie,assisted suicide). This slipped almost completely under the media’sradar, but it means that the official policy of the "oldest, largestand most diverse organization of public health professionals in theworld" – 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 Obamaadministration’s health reform legislation or scrutinising thepublications of his health advisors for a few indiscreet phrases, theelderly and their relatives ought to be worried about the 30,000members of the APHA. They are the ones who could be sitting on the"death panels". The authors of the articles in the Disability andHealth Journal certainly are worried.

Several themes emerge from the articles.

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

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

Nonsense, says Diane Coleman, of the lobby group Not Dead Yet. Shepoints out – quite eloquently -- that pity can be more dangerous than amad doctor in a nursing home. We are, she says, "more frightened by thedoctors who are out to help us but who see our lives as burdensome andwho know little about options that make life with disability valuable."

Why should valuable resources be wasted on them, anyway? "Every week, Ihear another person with a disability recount a disturbing interactionwith a physician, nurse, or other health professional who clearlytransmitted the view that life with a disability is inherentlyburdensome," she writes. "It does not feel safe to have one's life inthe hands of someone who views that life as unfortunate, maybe eventragic or unfair."

Second, advocates of assisted suicide and euthanasia ignore theexperience of the disabled because they think that a dying 80-year-oldis radically different from someone who has spent a lifetime in awheelchair. Show me the evidence for this, Ms Coleman demands. Anyone,at any age, can learn to cope with disability. "To dismiss theseefforts as futile because the individual is near the end of life has noempirical foundation and raises questions about the commitment ofassisted suicide proponents to the genuine self-determination of peoplewith terminal illnesses."

What these articles convey strongly is that supporters of assistedsuicide simply do not care how much collateral damage their campaignfor "dying with dignity" will do to people who have lived with theirdisability for years. Ms Coleman savagely comments: "Proponents oflegalized assisted suicide are willing to treat lives ended throughabuses of the practice as ‘acceptable losses’ when balanced againsttheir wish for a pleasant way out and their unwillingness to acceptdisability, 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 betterthan disability. "If the legalization of assisted suicide continues, Ibelieve the rank and file will some day see nothing wrong withhastening the deaths of many people," writes Dr Carol J. Gill ,director of the Chicago Center for Disability Research. "They willstand by and do nothing to stop it and will endorse the policies andinstitutions that advance it – not because they are evil people butbecause it will no longer be evil in our culture to do so. It will becompassionate, respectful, routine."

Fourth, several authors argue forcefully that Oregon's Death withDignity Act, which is the model for assisted suicide in the US, isdeeply flawed. After about 15 years, several intractable problems haveemerged. The authors claim that there is very little patient control;that statistics are incomplete; that oversight is minimal andsecretive; that safeguards are easily circumvented; and that negligentdoctors cannot be prosecuted. Allegations that in Oregon and in theneighbouring state of Washington, which has also legalised assistedsuicide, the circumstances of deaths are routinely falsified areespecially disturbing. In fact, Washington actually requires thatdoctors falsify the death certificate by listing the terminal diseaseas the cause of death rather than the lethal dose of barbiturates.

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