Friday, January 8, 2010

Disability and Health Journal Special Issue on Assisted Suicide.

I heard this issue of Disability and Health Journal was coming but I have not yet had a chance to read it. On the outset, from a quick scan of the content, I will say there are a number of things that should be kept in mind when reading it:

*The term "disabled" is currently ill-defined as it applies to various groups. As McDermott (see below) uses it, we will all, should we eventually die of old age or disease, be considered disabled at some point. This is a fantastic position for disability rights to espouse - that disability is not just common but normal. But such a definition of disability does not make the case for or against aid in dying. However, when this definition is coupled with state, church or medical opinions of who should make health care decisions for the patient, patients' rights get very murky.

*A profound fear of the medical profession exists among the disabled. As much as the profession is comprised of members of society, society has discriminated long and hard against disabled persons. And our history, including early to mid-20th century euthanasia activism, has erred on the side of discrimination against the disabled. A fear of society's and medical practitioners' intentions regarding the disabled is understandable. But that does not mean that laws regarding end of life care, or specifically, aid in dying are based in rational and provable science.

*The studies here of how Death with Dignity is used in Washington and Oregon, and public opinion in those states, must be understood against the absence of studies regarding how people die in the rest of the country (absent because end of life care outside of Wash and Oregon is not as scrutinized) and how public opinion of DwD or aid in dying is influenced by misinformation, death taboos, and religious ideology. Public opinion does not determine a law as just or humane. Until more is understood by the general public about how people die, how DwD works, and what forces (and their motivations) work against aid in dying, public opinion cannot determine the Constitutional or humane viability of a law. Education is needed.

*US laws must be addressed as they exist. Opponents of aid in dying have a great propensity for conflating Death with Dignity laws with how the legalization of assisted suicide works in other countries or in their "Culture of Death" construct. The argument that DwD laws will lead to killing of the disabled (or other vulnerable members of society) is not based in fact. Though there are collapsed and imperfect parallels in history of the devaluation of life (WWII) doesn't mean that DwD laws will lead to euthanizing the disabled here in the US in the 21st century. (Using the same faulty logic, "pro-life" groups have argued that legalization of DwD laws are the result of Roe v Wade. They call it the slippery slope.)

*The rights of some patients should never be sacrificed for those of others. It's the lesson of the health care bill, sacrificing women's rights for expanded (but still for-profit coverage). It's the lesson of Catholic hospitals serving pluralistic communities according to Catholic doctrine. It's the lesson of our existing failed health care system which has disenfranchised the most needy. Protection of the rights of the disabled should be considered a fellow-traveler issue with protection of a terminal patient's choice to hasten their death. I look forward to the day when the disabled, the elderly, women, gays and all citizens come together under the rubric of patients' rights.

*Fear of coercion is real. Disability activists fear that assisted suicide will send the message to the disabled that their lives are less worthy or valuable. Yet there is a world of difference between a leukemia patient, ten years into their diagnosis, who has exhausted all treatment options and is given only months to live and a paraplegic patient diagnosed with treatable breast cancer. The role of medicine is to inform the patient of all options. The role of the patient and/or their guardian/proxy is to use their own conscience to make the choice. Death with Dignity, the actual laws as written, in no way violate those sacred roles.

I've looked forward to this journal issue for a long time. I can't wait to reading it.

Editor of the
Disability and Health Journal, Suzanne McDermott, writes about the current special issue:

All of the articles published in this special issue emerged during the 2 years the APHA struggled to adopt a policy on assisted suicide. During that time, I personally went from seeing this issue as a personal right to understanding that assisted suicide is at the heart of the disability movement. The broadly used definition of “disability” includes individuals who have limitations in their functional status and/or use assistive devices to maintain function. 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. People with disabilities have been recognized as a health disparity group (included in Healthy People 2010); they experience substantial discrimination in society, and yet they can live extremely high-quality lives. The ADA is civil rights legislation that guarantees equal treatment under the law. From the perspective of the ADA, the assisted suicide debates raise the question: Should we have laws that give physicians the ability to prescribe lethal doses of medicine to people, who are told they have less than 6 months to live, OR should we provide the supports, services, and pain management they need to continue living?

Ethics Forum writes that the reasons disabled persons are vulnerable under laws that allow assisted suicide are:

First, the very existence of legalised assisted suicide threatens disabled people. It will lead 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. Dream on, says Diane Coleman, of the lobby group Not Dead Yet. "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. We disagree."

Second, 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. "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."

Third, 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. ~
Disability and Health Journal, January

Giant ht to JS on my thinking about this.

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