Saturday, April 14, 2018
Mahatma Ghandi reputedly said, “A nation’s greatness is measured by how it treats its weakest members.” We could paraphrase this in a contemporary context: a nation’s right-to-die laws are measured by how it treats the disabled.
Our lead story this week deals with the euthanasia of patients with an intellectual disability or autism in the Netherlands. Four bioethicists suggest that the necessary safeguards are lacking in these cases.
That is bad enough. But they go on to point out that the disabled have to deal with nigh-intolerable suffering for their whole lives. How does legal euthanasia make them feel? In the words of another author, “If society endorses the right of a person to seek physician assistance to end his or her life because of increasing loss of functional autonomy, what does that say about how our society values the lives of people who live with comparable limitations every day of their lives for years on end?”
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How do intellectually disabled people fare in a country where euthanasia and assisted suicide are legal? Writing in BMC Medical Ethics, Baroness Ilora Finlay and three colleagues conclude that Dutch criteria for euthanasia “are not easily applied to people with intellectual disabilities and/or autism spectrum disorder, and do not appear to act as adequate safeguards.”
Their findings are based on an analysis of six case studies of people who were euthanased between 2012 and 2016 with intellectual disability and three with autism spectrum disorder. The case studies are publicly available. They write:
Despite the fact that assessing the capacity of intellectually disabled people is very difficult and a task for specialists, the authors found that only in one of the nine cases was a specialist consulted. This suggests that their requests for euthanasia are poorly understood:“Autonomy and decisional capacity are highly complex for patients with intellectual disabilities and difficult to assess; capacity tests in these cases did not appear sufficiently stringent. Assessment of suffering is particularly difficult for patients who have experienced life-long disability. The sometimes brief time frames and limited number of physician-patient meetings may not be sufficient to make a decision as serious as EAS.”
In a concluding reflection, the authors observe that the intellectually disabled may be the “canary in the coalmine” in a society where euthanasia and assisted suicide are legal. “It may well be that the ability to use rationality and logic when weighing up the EAS option, and thus decision-making capacity in accordance with standard capacity tests, is impaired in most people affected by the emotional turmoil of terminal illness or suffering caused by chronic conditions.”The Dutch cases raise the possibility that the bar for assessment of intractable suffering is set lower for people with an intellectual disability or autism spectrum disorder than for the general population, by considering their long term disability as a medical rather than a social condition. We found no evidence of safeguards against the influence of the physicians’ own subjective value judgements when considering EAS decision, nor of processes designed to guard against transference of the physicians’ own values and prejudices.