However, in the July/August 2012 edition of Gray Matters, Jerome Groopman MD and Pamela Hartzband MD cited Muriel Gillick, MD, a geriatrician at Harvard Medical School and a researcher in end-of-life care, saying that “‘… the consensus … is that the directives have been a resounding failure.’” Nevertheless we are now to believe that we should be able to circumvent current euthanasia/ MAID restrictions by signing an AD even after a dementia diagnosis.
Groopman and Hartzband said the signatories “… cannot accurately imagine what they will want and how much they can endure in a condition they have not experienced.”
Caregivers tend to believe they know what care recipients experience, not understanding that their experience is of caregiving, not of receiving care. They can’t understand the recipient’s perspective any more than men who used to think they spoke for the women in their lives.
Secondly, many people change their minds after signing such a document. Would the authority figures interpreting the directive allow a change of mind or assume it is a product of the disease or disability, not to be taken seriously?
According to Richard Weikart, author of Unnatural Death: Medicine’s Descent from Healing to Killing, the first case of a physician being prosecuted in the Netherlands after euthanasia was legalized in 2001 involved a woman with an AD requesting euthanasia in the event of dementia.
But when her fears materialized, she changed her mind, rejecting the fatal injection three times. The doctor drugged her coffee. Still she struggled. Family members then restrained her to facilitate the euthanasia. Four years later, the doctor was acquitted.
In Canada, despite 428 breaches of current euthanasia/ MAID law in Ontario alone, no one has been prosecuted.
A third reason ADs don’t work is that the prevailing narrative views “disabled” people as lives not worth living.
In an American survey reported in Health Affairs in February 2021, more than 80 per cent of U.S. physicians perceived significantly disabled people’s lives as diminished, “… an attitude that may contribute to health-care disparities among people with disability.”
However, Lisa I. Iezzoni, a health-care policy researcher at Harvard-affiliated Massachusetts General Hospital told the Atlanta Journal-Constitution “Studies of people with disability show that most don’t view their lives as tragic … and view their lives as good quality.”
But wouldn’t authority figures interpret an AD in the light of the ableist narrative reflected in the survey?
Current legislation targets people with disabilities. If the euthanasia/MAID practitioner sees disabled people as having low “quality of life,” wouldn’t that person be inclined, consciously or unconsciously, to interpret an AD differently than the signatory intended?
Since the majority of non-disabled Canadians perceive the ableist narrative as truth, anything else will be and is ignored.
Would any other marginalized group face the same legal discrimination?
A fourth strike against ADs is our current stressed health-care system. What about the interpreter’s level of fatigue, social and other pressures? Fatigue and stress make most of us less tolerant than stress-free environments.
A fifth strike, as Groopman and Hartzband said, is that ADs “cannot encompass every possible clinical scenario.”
A sixth strike is that interpreters, usually medical practitioners, may well be strangers relying on maybe a cursory examination and other people’s notes in the signatory’s medical chart. Wouldn’t a lack of familiarity with the person tilt interpretation toward prevailing biases?
A seventh strike asks: is the euthanasia/MAID provider qualified or willing to assess the reasons prompting the request?
For example, is Dr. Ellen Wiebe in B.C., an enthusiastic and vocal member of the euthanasia/ MAID advocacy organization, Dying With Dignity, qualified to assess the person’s mental health?
Does she bother addressing social and economic pressures?
She has said she determines the person’s eligibility on her assessment of their “quality of life” rather than medical assessments. “Quality of life” is a vague catch-all phrase encompassing anything from economics to end-of-life distress.
As of March 2023 she had “helped” 431 people into the nearest hearse and faces no legal consequences, although she is getting pushback from her own clinic and others.
But what then? How are these directives to be used? As a yes-no shortcut for medical end-oflife decision-making? As legal protection for the interpreters?
Instead of ensuring choice, doesn’t signing ADs actually abdicate choice? Who is really empowered by such directives? The signatory or the interpreter? Are they not simply a manifestation of ableism?
If ADs don’t deliver on their promises for anyone, how can they deliver those promises for those diagnosed with dementia? Doesn’t that make vulnerable people even more vulnerable?
Groopman and Hartzband said, “… there are no shortcuts around emotionally charged and time-consuming conversations that involve patients, families and physicians.”
But who has time, resources and patience for such conversations these days?
Ruth Enns writes from Winnipeg.
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