Margaret Morganroth Gullette on the vote for physician-assisted dying

October 22, 2012
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This election day, voters in Massachusetts will face the option of following the examples of Washington and Oregon, in choosing to legalize physician-assisted suicide for the terminally ill (in Massachusetts, this option is currently banned by common law, rather than outright prohibition). Here,  Margaret Morganroth Gullette, resident scholar at Brandeis University’s Women’s Studies Research Center and author of Agewise: Fighting the New Ageism in America (along with Aged by Culture) weighs in on the Act Relative to Death with Dignity, placing its concerns in a broader context of conversation surrounding American ageism and government rhetoric.

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“Why I am, after all, voting for Massachusetts’s Act Relative to Death with Dignity”

Massachusetts’s voters will decide on physician-assisted dying in November, yeah or nay.  Positions are hardening, but there are more balanced views yet to be heard, on cultural contexts which may affect everyone who hopes to grow old in America.

Choice is the major argument in favor, as was the case in Oregon and Washington, which passed bills similar to our “Act Relative to Death with Dignity.” Those in favor say that giving the dying more choice in how and when they die relieves deep apprehension and provides some measure of control and comfort. “Autonomy” is now widely understood as a synonym for freedom. People who think they can do it themselves without medical assistance should think again: nobody wants to bungle the endgame. Those with only six months to live, who are capable of making decisions–the intended beneficiaries of the Massachusetts Act–deserve the option of getting the drug dose right.

But even those who believe firmly in choice have a significant worry. Many gerontologists and advocates for the disabled fear that given the increasingly virulent spread of ageism and ableism, the Act will put coercive pressure on people to refuse treatment that might prolong their lives, and to go quietly and cheaply so as not to be “a burden.”

This worry responds to real facts. In the past few months, three major mainstream American publications have had articles about dying that should alarm people of any age thinking ahead to whether they might be considered burdens by their adult children or by society.

The Atlantic Monthly permitted Sandra Tsing Loh to tell, at length, “Why caring for my aging father has me wishing he would die.” She invaded his privacy to reveal his weaknesses.

Joe Klein, in a Time cover article, “How to Die,” seems to begrudge his mother a heart operation at the age of eighty that cost $100,000, even though she lived over a decade longer. He signed a DNR (“do not resuscitate”) order for his father even though Klein admitted that his father “probably would want to be resuscitated” (italics in original). Felicia Nimue Ackerman, a philosopher at Brown, comments in the Providence Journal, “This admission is disquieting to people who believe that medical treatment should accord with a patient’s own values rather than those of his children or his doctors.”

Many sick people, older and younger, rely on the good will of their adult children—as well as their doctors and possibly their nursing-care administrators and aides—to help them with decision-making. I, for one, would find my dying embittered if I thought that saving money for Medicare, rather than my own good, would be a factor in anyone’s advice about my dying. Over a third of the 596 Oregon patients feared becoming a burden on family, friends, or caregivers.

David Leonhardt, writing “Old vs. Young” in the New York Times, hints that saving money on end-of-life care would be fair.  Using the much-discredited “canes vs. kids” argument, he states that “Medicare, in addition to being the largest source of the country’s projected budget deficits, is a transfer program from young to old.” He forgets that it is a program that the young will count on when they become old—unless people like him turn it into an inadequate voucher scheme. He naively believes that the $100,000 operation that might give me a decade of life, if not spent on me, would go to Pell grants—rather than toward, say, another killer drone.

Before the debate becomes excessively heated, reading the Act itself is useful. The Act steers clear of many potential abuses, but it has three problem areas.

Especially given enmity toward parents now publishable in the mainstream, Section 3, which states who may witness the request for assistance, should say that neither of the witnesses can be relatives, potential heirs, or persons connected to a health-care facility where the qualified patient is receiving care. (Facilities have a stake in keeping the patient a paying customer). If impartial witnesses are needed, as with notarized documents, another patient or even a person off the street could be invited in.

There is accumulating evidence that women, people of color,and poorer people do not get what they want at the end of life. Over 80 percent of the Oregonians who have chosen suicide had cancer. Over 14 years, only 600 applied, and the age range was 25 to 96. 98 percent were white. 52 percent were men. This data suggests, though it cannot prove, that women, the old, people of color, and the depressed, would not be at greater risk should the law pass. Section 2 (2) should therefore read: “A person does not qualify under this chapter solely because of age and disability, or economic circumstances, or race or gender.”

Section 4 (1a) raises a related issue for the Act: denial of the option because of “cognitive impairment.” Many people, even with a diagnosis of Alzheimer’s, remain rational and volitional for a long time, even years. (Some write books about their experiences.) Yet in the Age of Alzheimer’s, AD is likely to become diagnosed earlier and earlier.

Medical doctors, even geriatricians, are better trained to recognize cognitive failures than to notice the many powers that remain. Many fail to treat depression, which can be caused by diagnoses of cognitive impairment. “Mild cognitive impairment” is likely to be termed a “mental illness” in the next Diagnostic and Statistical Manual. Given our terror of forgetfulness, people will be “diagnosed” (often incorrectly) younger and younger. Might a doctor, or even two doctors, deem a terminal patient not “capable” simply because of such a diagnosis?

There is no way of remedying the Act itself to prevent such problems, because larger social changes are required. Longer term, old age in the Age of Longevity requires long-term care insurance, which has been cut from Obamacare. Dying as-well-as-possible involves training doctors far better in end-of-life care and anti-ageism. In present-day America, with deficit fears and smaller-government rhetoric rampant in discussions of Medicare, all of us need to recognize how the ageist language of “burden” affects public conversations, and thus intimate decisions, about the end of life.

I was one of the undecided all summer. But I have changed my mind. My father died of Amyotrophic Lateral Sclerosis, at the young age of 69, with my mother and me at his side.  He was paralyzed for an entire month beforehand, unable to talk or swallow on his own. But even before that, he had no option to end his life at a moment and in a way of his choosing. Given the terrible unknowns of the end of life, we need this new choice. I am voting for the Act.

 

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