Abstract
When we think about ethics and policies at the end of life, we confront a troubling paradox. Substantial sectors of our society include people who have historically been marginalized, whose decision making capacity has been denigrated or trammeled, or who continue to be vulnerable due to poverty or discrimination. Such groups broadly include women, people of color, and people with disabilities. Ackerman (1998) would include in this category also the demented, the ill, and the aged. Does supporting, even valorizing, their “death with dignity” celebrate these people’s autonomy, or does it express an underlying lack of respect for the value of their lives? Do we need to protect women’s right to end their lives when and how they choose, or do we need to protect their right to continue to live when they are old, ill, disabled, and demented?
This issue is highlighted by the recent suicide of eminent psychologist Sandra Bem, who carried out a plan to end her life with an overdose of phenobarbital, when Alzheimer’s Disease began to threaten her ability to “end her life while she still could” (Ove, 2014). Bem had been a lifelong fighter for equal opportunities for women and a scholar who worked to explode gender stereotypes. Not having had the privilege of knowing Sandra Bem, I do not have the temerity to declaim the “meaning” of her decision. But certainly, her example points us to this very difficult question of what it means to “respect” the end-of-life decisions of people who are members of oppressed or marginalized groups.
I was struck by this dilemma from a different angle, during the national paroxysm in the USA over the death of Terri Schiavo. Schiavo was a young woman who fell in 1990 into a coma that was eventually diagnosed as a persistent vegetative state (PVS). After eight years, her husband requested that artificial provision of nutrition and hydration be removed, so that Schiavo would be allowed to die. Although as Terri’s husband, Michael Schiavo was legally empowered to make this decision, Terri’s parents passionately disagreed. They insisted that their daughter was responsive and not in a PVS. What followed was seven years of battle, in the courts and in the court of public opinion, which served as a conduit for America’s ongoing “culture wars” (Hunter, 1992). Schiavo’s parents, devout Roman Catholics, hired anti-abortion activist Randall Terry as their spokesperson. Florida Governor Jeb Bush, President George W. Bush, and various other conservative lawmakers catapulted themselves into the debate, backing various last-minute legislative attempts to block the removal of Schiavo’s feeding tube. The one discordant note here was the involvement of Senator Tom Harkin, of Iowa. Harkin is best described as “a liberal lion,” a reliable vote over many decades for expanded access to health care, human embryonic stem cell research, reproductive rights, etc. So what was Harkin doing on “the wrong side” of the Schiavo battle? As a long time fan of the Senator, I wrote and asked him. In his answering letter, he reminded me that his greatest legislative achievement had been the passage of the Americans with Disabilities Act (ADA). When introducing the ADA in the Senate, Harkin even gave part of his speech in sign language, so that his deaf brother could understand.
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For Harkin, Terri Schiavo was first and foremost a “disabled” person in need of protection. As Harkin (2005) said in his press release on the subject: I have long been an advocate for the rights of people with disabilities. Many in that community are keenly aware of the risk of incapacitation. In such cases, I believe that every precaution should be taken to learn and respect their desires regarding the removal of life supports.
In fact, there was no way to learn any more from Schiavo herself about her wishes. In the United States, the spouse is the default next-of-kin responsible for medical decision making. Thus, accepting Mr. Schiavo’s decision, as supported by the various state courts that had examined the case, would have respected Terri Schiavo’s desires to the extent possible. But what Harkin’s “defection” from the liberal camp in this case highlights, is the underlying tension in how we view the disabled. Someone in PVS is as disabled as it is possible to get. Should we assiduously protect her autonomy by acting on our best understanding of her wishes, as relayed by her next-of-kin? Or should we disregard her autonomy as no longer relevant, and protect her physical life against those who would devalue it?
This dilemma is sharply displayed whenever a high-profile case catches the public eye. In Canada, Sue Rodriguez, a woman with amyotrophic lateral sclerosis, also called motor neuron disease, went to court in order to legally obtain assistance in ending her life when it became unbearable. The mother of an eight-year-old, she wanted to live her life as long as it was bearable, but she recognized that by waiting as long as possible, she risked losing the physical ability to end her life without assistance, although she would remain mentally competent. Bickenbach (1998) highlights the fascinating dissonance between the views of Coalition for Provincial Organizations of the Handicapped, Canada’s largest disability rights group, and Not Dead Yet, a grassroots disability rights group, each of which employs the concept of discrimination in making their case. The former supported Rodriguez, arguing that the disabled are victimized by stereotypical and paternalist attitudes. Denying people with disabilities the option of suicide (for which they need physical assistance) is an example of this unequal treatment “and must be resisted as demeaning and discriminatory.” Not Dead Yet opposes legalization of assisted suicide and euthanasia as “deadly forms of discrimination.”
We know that women are much more likely than men to fall prey to dementia, only in part because they live longer (Alzheimer’s Association, 2014). Thus, the question of how to view a decision like Dr. Bem’s presents a dilemma to feminists. Do we applaud “strong” women who take courageous action to defend their autonomy against oncoming dementia? Or, do we worry that women, because they have so often been devalued, will devalue their own lives and not think themselves “worthy” of other people’s care and sacrifice? As Sherwin (1996) reminds us, some oppressed and marginalized people do absorb the message that their devalued status is a reflection of their lack of worth. Other writers are concerned that just because women have so often been primary caregivers to dependent family members, they may be especially reluctant to burden others (probably female family members) with their care (Wolf, 1996). A 2014 poll by the Alzheimer’s Association reported that 60% to 70% of “informal” (read “unpaid”) caregivers are women. “Nearly seven times as many women as men went from working full-time to working part-time while being a caregiver, and more than twice as many women as men reported having to give up work entirely or to have lost job benefits” (Alzheimer’s Association, 2014). How should feminist women viewing the end of their lives respond to this reality?
It is difficult in the USA to have an open discussion about suicide. Suicide is legal in all 50 states, so there is no obvious policy issue to debate. The legalization of assisted suicide, however, has been an ongoing topic of fierce debate, and serves as an imperfect proxy for a more direct discussion of suicide itself. As the Court of Appeals for the Ninth Circuit said in Compassion in Dying v. Washington (1996), “the first issue to be resolved is whether there is a liberty interest in determining the time and manner of one’s death,” and only then can one move to the question of assistance in achieving that end. Thus, it is around the topic of legalizing physician assisted suicide (PAS) that we find a robust debate about the support and protection of vulnerable groups. In fact, in striking down the claim that individuals have a constitutionally protected right to aid in dying, the U.S. Supreme Court in Glucksberg (1997) made heavy use of the argument, made by the influential New York State Task Force on Life and the Law, that states have a valid interest in protecting “vulnerable groups” including the poor, the elderly, and the disabled, from “abuse, neglect, and mistakes,” and that this interest goes beyond protecting them merely from outright coercion, but also from stereotyping and indifference. In contrast, the Ninth Circuit decision that the Supreme Court overturned, upheld the right, stating that the choice of “how and when to die” is a choice “central to personal dignity and autonomy.” 2 “A competent terminally ill adult, having lived nearly the full measure of his life, has a strong liberty interest in choosing a dignified and human death rather than being reduced at the end of his existence to a childlike state of helplessness, diapered, sedated, incontinent. How a person dies not only determines the nature of the final period of his existence, but in many cases, the enduring memories held by those who love him.” 3
Feminist writer Tong (2000) expressed a common concern that, if PAS became legal, an accepted part of the landscape, that might engender a “duty to die” that would have a special impact on women, who on average live longer than men and are more likely to be impoverished. The fear is that the very narrow constraints that now govern the practice in states such as Oregon and Vermont, will eventually and inevitably loosen. (Of course, women are also likely to have better life skills and social networks, as it is often shown that widowed women cope better than widowed men.) 4 As in so many cases in bioethics, having more options can result in making some options harder to defend. Having the socially sanctioned option of ending one’s life could make it difficult to defend one’s decision to hang on to the bitter end, using up financial and human resources.
To bring this discussion back to Dr. Bem, we must remember that no American jurisdiction allows assisted suicide for people who are not terminally ill, usually defined as being within six months of their death. The paradox of Alzheimer’s, as I have written elsewhere (Davis, 2013), is that one can live with it for a very long time, but that the ability to act rationally and autonomously is one of the first attributes to be lost. Thus, the legal option of assisted suicide is generally useless to people with diseases of dementia.
In wrestling with this dilemma, I am reminded of a key concept in bioethics: respect for persons. Respect is a term one hears everywhere these days, but we rarely stop to consider its root meaning. To re-spect someone is to look at her, and then to look at her again. To respect me is to see me carefully and clearly. Respect for persons requires that we respect the autonomy of autonomous persons, and respect the need for protection of people who are not competent, due to age, circumstance, or mental infirmity. Thus, the heavy duty of respect again pulls me in two directions.
So it seems as if there is no choice but to leap to one side or the other. For myself, I choose autonomy over protection. And I choose that as a feminist. To end my life when dementia threatens is to say, with feminists, that biology is not destiny, that I am not defined by my biological functions. To end my life when dementia threatens is to say that I am not the passive recipient of whatever life hands out, but an active and dominant person who can seize control of her destiny.
The argument made by writers such as Andrews (2015), Wolf and Tong is essentially a call to self-sacrifice. For the sake of women whose circumstances do not allow them to make autonomous choices, we who are more fortunate should give up our own choice. We should give up a choice “central to personal dignity and autonomy” to avoid giving society a push down the slippery slope in the direction of indifference and callousness to those sick and disabled people who do not wish to end their lives (Davis, 1998). That sounds like a very unfeminist call to women to uphold the moral values of society by limiting their own freedom and behavior. We’ve been there before. Well, I am not willing to end my life watching Teletubbies 5 in diapers, and I bet that neither was Sandra Bem.