Death with Dignity

Death with Dignity

Death with Dignity

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Much of the American debate over physician assisted death (PAD) is framed as an ideological split between conservatives and liberals, pro life and pro choice advocates, and those who emphasize morality versus personal autonomy. Less examined, but no less relevant, is a split within the ranks of progressives – one that divides those supporting a right to die in the name of human rights from disability rights activists who invoke human rights to vehemently oppose euthanasia. This paper reviews how “dignity” serves both as a divisive wedge in this debate but also as a value that can span the divide between groups and open the way to productive discourse. Supporters of legalized euthanasia use “dignity” to express their position that some deaths might indeed be accelerated. At the same time, opponents adopt the concept to argue that physician assisted suicide stigmatizes life with a disability. To bridge this divide, the worldviews of two groups, Compassion &c Choices and Not Dead Yet, are studied. The analysis concludes that the two organizations are more parallel than contrary – a finding that offers opportunities for dialogue and perhaps even advances in public policy.

Key words: Compassion & Choices, dignity, disability rights, Not Dead Yet, physician assisted death (PAD), physician assisted suicide (PAS)

The is one typically debate side, over framed are physician liberals as a clash assisted who of ideologies. view death medical (PAD) On is typically framed as a clash of ideologies. On one side, are liberals who view medical

decisions as expressions of personal autonomy, empa- thize with the suffering of those who are dying, and entreat the government to recognize an expansive right to die. On the other side, conservatives refer to the

Hippocratic Oath’s prohibition against taking a life, hear the call for physician assisted death as a cry for better care and support systems, and point to the government’s obligation to protect human life. What this framework ignores, however, is a different divide.

Physician assisted death has fractured progressives who

share an agenda of protecting civil liberties and rights through government actions that work toward a vision

doi: 10.2990/30_1_17

of social justice. Although many progressives are proponents of legalizing physician assisted death, the majority of disability rights activists fervently oppose the practice. Therefore, the characterization of the debate over physician assisted death as a struggle between liberal and conservative ideologies excludes voices from the progressive disability rights movement.

Within the right to die movement is an attitude that

physician assisted death and disability are two separate issues. State statutes legalizing physician assisted death carefully restrict access to the terminally ill, competent adult who chooses whether or not to self administer a

lethal dose of prescribed drugs.1’2’3 In response, some disability activists accuse fellow progressives of dis- missing the concerns they raise against physician assisted death.4 The disability rights movement ex- presses frustratration because they struggle to be heard,

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face marginalization in the debate, and feel betrayed by fellow progressives that claim to embrace the goals of equality and inclusion. To complicate matters even more, while the dominant position among disability rights activists, but not all,5 is opposition to legalized physician assisted death, the position of the general population of people with disabilities is that of cautious support for individual choice with safeguards in place that address the needs of the disabled.6

One especially noteworthy element of this disagree- ment among progressives is their engagement in what Rochefort and Cobb term “problem definition.”7 Both physician assisted death and disability rights activists identify “dignity” as the crucial issue, but each camp uses different conceptualizations of the term. On the side supporting physician assisted death, “dignity” is the emblematic justification as to why competent, terminally ill adults should be allowed to hasten the dying process by ingesting prescribed lethal drugs. Death liberates from the indignities of illness. For opponents within the disability rights movement, this reference to dignity assumes that living with a disability

is per se an indignity. From this vantage point, the call for a right to die with “dignity” sounds like a discriminatory threat, not liberation.

This split among progressives begins with problem definition but then fractures over “strategic portray- als” of differing “world views” (p. 9).8’9’10 designed to affect public policy. This disagreement over “dignity” supports Deborah Stone’s observation that within political reasoning “there are multiple understandings of what appears to be a single concept (p. II).”8 Thus, the physician assisted death debate over “dignity” fits Stone’s definition of a “policy paradox” because the term “cannot be two different things at once (p. I).”8

The objective of this investigation is to examine how “dignity” serves as a wedge dividing progressives over the issue of physician assisted death. Part one examines the integral role of “dignity” in the debate over physician assisted death law by briefly reviewing its use by states, interest groups, and courts. The second part extends this background information by summa- rizing different philosophical and medical understand- ings of “dignity” connected to death and dying. Next, these different approaches to “dignity” are applied to what Faye Ginsburg calls narrative “world views” of opposing interest groups; in this case, Compassion & Choices, a physician assisted death group, and Not

Dead Yet, comprised of disability rights activists who oppose physician assisted death (p. 133). 9 Finally, the paper concludes by suggesting how framing this conflict as one of parallel world views rather than as an ideological clash creates a space for dialogue about common concerns that could lead to enhancing dignity for both those with disabilities and the dying.

The problem of policy definition does not exempt scholars who struggle over the appropriate terminology for when a physician legally prescribes a lethal dose of opioids to a terminally ill, adult patient. Known in the earlier literature as physician assisted suicide (PAS), proponents of legalization objected to the word “suicide” as inaccurate and inflammatory while opponents highlighted the word. Alternatives such as physician aid in dying and “death with dignity” lack specificity as to the nature of the practice and can be read to include not only contested forms of euthana- sia – terminal sedation or active killing – but also the widely accepted practice of palliative care. The term physician assisted death (PAD) is used throughout the article because of its specificity as to the practice referenced and because it appears to be the most politically neutral term.

Dignity and the law

The concept of “dignity” played a central role in both the political and legal struggles over physician assisted death. It has renamed the former euthanasia

movement; determined the names of state laws; played a dominant role in the way interest groups argued their

positions during state campaigns involving voter initiatives and as litigants and amici curiae before the courts; and altered the very language and reasoning employed by the courts.

Interest group politics Initially, the Euthanasia Society of America, founded

in 1939, advocated that it was humane to hasten the death of suffering patients. From the start, conserva- tives, moralists, and even some progressives raised concerns about the society’s agenda. Progressives grew concerned when the society’s president explained its position as allowing for the painless killing of “born defectives who are doomed to remain defective, rather than for normal persons who have become miserable

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Death with “dignity”

through incurable illness (p. 83). “n The timing could not have been worse. Nazi Germany’s combination of euthanasia with eugenics and genocide during WWII made horrifically clear the potential for abuse. Should there be any chance of liberalizing state laws, changes in names and terminology needed to distinguish “good death” from genocidal practices. The Society for the Right to Die emerged in 1976 and spoke the language of individual rights in a practice now called “mercy killing.” Acknowledging the suffering involved in a prolonged death, the Society embraced the position that it was ethically sound to end this suffering by killing the patient, and that hastening death was a personal entitlement supported by a legally cognizable “right to die.” The Hemlock Society, founded in 1980, set its sights on changing the mainstream repugnance of anything associated with euthanasia by redirecting attention toward medical technologies that prolonged suffering and the dying process. Emphasizing individ- ual control and empowerment, the organization offered suffering patients instruction on how to use medications to end life. Although seemingly radical in advocating actions outside of the law, the Hemlock Society was not a threat to the social order because it emphasized private “self deliverance” rather than challenges aimed at changing public policy.

The major organization dedicated to challenging the state bans on physician assisted death in Washington and Oregon began in 1993 as Compassion in Dying, a name that distanced itself from mercy killing but aimed

to protect physicians who assisted in what was now termed a patient’s suicide. In 2003, the Hemlock Society expanded its mission from instructing people in

self help to more overt political efforts to alter existing law; a change reflected in its adoption of the new name, End of Life Choices. In 2005, Compassion in Dying and End of Life Choices united under the new banner of Compassion &c Choices, a name that references the language of individual “choice.” Even the practice known early on as physician assisted suicide was redefined. Mercy killing and assisted suicide refer to practices where physicians administer the lethal drugs to patients that request the hastening of death. “Aid in dying” refers to patients administering the lethal drugs. The nomenclature importantly shifts the role of the physician from active participants to a more passive one.12 The agenda of the larger move- ment evolved from advocating “euthanasia” to herald-

ing the “right to die” to, finally, promoting “death with dignity.”13

This final change catapulted “dignity” to a starring role in the movement. No longer would proponents of physician assisted death identify with the promotion of euthanasia, suicide, or a right to die. Now the mantra sounded more benevolent and appealing as “death with dignity.” The shift was so complete that following

the passage of Oregon’s aptly named Death with Dignity Act, similar legislation proposed in others states used the exact same title; hence, Washington passed in 2008 a Death with Dignity Act. Yet, neither statute discussed, much less defined, the meaning of dignity.

In 2008, Montana’s explicit constitutional statement that recognized a right to dignity set the ground for litigating a right to physician assisted death. Robert Baxter, a terminally ill patient with lymphocytic leukemia, contested the law banning physician assisted death. Baxter’s statement to the trial court, synthesized

the concept of dignity with autonomy and privacy:

I have lived a good and a long life, and have no wish to

leave this world prematurely. As death approaches

from my disease, however, if my suffering becomes unbearable I want the legal option of being able to die

in a peaceful and dignified manner by consuming medication prescribed by my doctor for that purpose.

Because it will be my suffering, my life, and my death

that will be involved, I seek the right and responsibility

to make that critical choice for myself if circumstances

lead me to do so. I feel strongly that this intensely

personal and private decision should be left to me and

my conscience – based on my most deeply held values and beliefs, and after consulting with my family and

doctor – and that the government should not have the

right to prohibit this choice by criminalizing the aid in

dying procedure.14

Baxter and the other litigants, including Compassion &C Choices, had a textual basis on which to argue the point: Article II, section 4 of Montana’s Constitution states, “The dignity of the human being is inviolable (p. 14). “15 “Dignity,” then, would have its day in court.

Judicial politics Even before it heard cases on the issue of physician

assisted death, the United States Supreme Court set the

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groundwork for the prominent role of “dignity” through its rulings in two other cases: Cruzan v . Director, Missouri Department of Health,16 a right to die case, and Planned Parenthood of Southeastern Pennsylvania v. Casey 17 an abortion case. In Cruzan , Chief Justice William Rehnquist, speaking for the majority, cited Superintendent of Belchertown State School v. Saikewicz18 to reason that since a competent individual has the right to refuse life sustaining treatments an incompetent person retains the same rights “because the value of human dignity extends to both” [emphasis added] (p. 745). 16 The discussion of the importance of dignity continued in Casey , a pivotal

abortion case that upheld Roe v. Wade’s19 position that a woman has a constitutionally protected right to abortion right up until the viability of the fetus. In their

plurality opinion, Justices O’Connor, Anthony Ken- nedy, and David Souter wrote a now oft-quoted passage concerning what was at stake in abortion rights:

These matters, involving the most intimate and personal choices a person may make in a lifetime, choices central to personal dignity and autonomy, are

central to the liberty protected by the Fourteenth

Amendment [quoting from Eisenstaedt v . Baird , 1972].

At the heart of liberty is the right to define one’s own

concept of existence, of meaning, of the universe, and

of the mystery of human life. Beliefs about these

matters could not define the attributes of personhood

were they formed under compulsion of the State [emphasis added] (p. 851). 16

With these precedents in place, it was little wonder that once physician assisted death began its trajectory from the lower courts, the language of dignity would figure prominently. The Court of Appeals in Compas- sion In Dying v. Washington struck down the state ban on physician assisted death quoting from Casey : “Like the decision of whether or not to have an abortion, the decision how and when to die is one of ‘the most

intimate and personal choices a person may make in a lifetime,’ a choice ‘central to personal dignity and autonomy”‘ [emphasis added] (pp. 813-814).20

Once the twin cases of Washington v . Glucksberg 21 and New York v. Quill 22 arrived at the Court, the concept of dignity was so embedded in the cases that four of the six opinions directly referenced the word.

Chief Justice Rehnquist noted, “[p]ublic concern and democratic action are therefore sharply focused on how best to protect dignity and independence at the end of life” [emphasis added] (p. 716).21 Justice Kennedy reduced the issue at hand to a question of dignity: “This legal circumstance means that the state laws before us do not infringe directly upon the (assumed) central interest (what I have called the core of the interest in dying with dignity) as, by way of contrast, the state anti contraceptive laws at issue in Poe ” (p. 833).21 Justice Stevens wrote, “This freedom embraces, not merely a person’s right to refuse a particular kind of unwanted treatment, but also her interest in dignity , and in determining the character of

the memories that will survive long after her death” [emphasis added] (p. 802).21 He also flipped the term to explore its negative: “Avoiding intolerable pain and the indignity of living one’s final days incapacitated and in agony is certainly [a]t the heart of [the] liberty … to define one’s own concept of existence, of meaning, of the universe, and of the mystery of human

life” [emphasis added] (p. 803).21 And finally Justice Souter opined, “The State does not dispute that each [patient] faced a passage to death more agonizing both mentally and physically, and more protracted over time, than death by suicide with a physician’s help, or that each would have chosen such a suicide for the sake

of personal dignity , apart even from relief from pain” [emphasis added] (p. 808).21

Approximately twelve years later, the call to recognize a right to dignity proved persuasive in Baxter

v. Montana.23 Judge Dorothy McCarter voided Mon- tana’s ban on physician assisted death by relying on the

connected rights of privacy and dignity. She explained:

Taken together, this Court concludes that the right of

personal autonomy included in the state constitutional

right to privacy, and the right to determine “the most

fundamental questions of life” inherent in the state

constitutional right to dignity , mandate that a compe-

tent terminally ill person has the right to choose to end

his or her life [emphasis added] (p. 18).15

In a 52 decision on December 31, 2009, the Montana Supreme Court upheld the trial court’s voiding of the state’s physician assisted death ban.24 However, while holding that state law protects physicians who assist in death from prosecution, the

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Death with ” dignity ”

Supreme Court failed to address whether a constitu- tional right to die exists under the state constitution.

There is little doubt, however, that the concept of dignity influenced the politics of the interest group movements and the states, as well as the language and reasoning employed by the courts. Such a focus therefore begs the question: What indeed is the meaning of “death” when qualified by the goal of dignity?

Different understandings of “dignity”

As Arthur Derse has observed, the phrase “death with dignity” is “not of medical coinage” (p. 283). 25 It is unlike the term “brain death” or the doctrine of the

“double effect” because each of these have an agreed upon meaning used to define the legality of specific circumstances. And Derse’s pronouncement that “death with dignity” does “not share a consensus in meaning in bioethics” is an understatement (p. 280).24 Although most commentators use the term to indicate recognition of human worth, value, and respect, “dignity” within the physician assisted death debate has many meanings and emphases.

Jyl Gentzler examines and finds deficient five different notions of “dignity” used by proponents of physician assisted death.26 These include Kant’s view of dignity as absolute and intrinsic, the indignity of unbearable physical pain, the indignity of dependency, the dignity of control, and the dignity of integrity – living in “accordance with our own coherent answers to the most important questions about life’s meaning and value” (p. 474).26 Instead, she argues in favor of an Aristotelian dignity where “‘deaths with dignity’ are deaths that are consistent with a life lived with dignity”

(p. 478).26 The discourse about what dignity means in the

context of death and dying raises fundamental ques- tions that transverse the concept of dignity by means of

several vectors. Although influenced by Gentzler’s study of the term, this examination of “dignity” is not so much about its varying shades as delineating the

questions that cut through the concept. First, there is the question of whether dignity is

something inherent, bestowed, or something people earn. At one end of the spectrum is Immanuel Kant who maintained that dignity is an unconditional

attribute of human beings as rational creatures. “As such, ‘human dignity’ is something human beings can no more lose any more than they can gain it.”27 At the other extreme is Arthur Caplan who maintains that dignity is a moral creation, bestowed by the commu- nity, and so is not an attribute inherently possessed by

28

any person.

The exact nature of dignity is a second area of disagreement. “Autonomy” is among the most fre- quent synonym used to explain “dignity,” and applied to physician assisted death it refers to a personal right over decisions affecting one’s own life and dying (p. 189). As Shepherd notes, although dignity is evoked but rarely defined within the physician assisted death debate, autonomy is a more clearly defined concept (p. 437).29 Autonomy incorporates attributes such as consent, choice, independence, and self determination and puts in motion the rights holding citizen of liberal politics (p. 43 1).29′ 30 This meaning of dignity within the context of physician assisted death has been appropriated, some say mistakenly, from the abortion debate in which dignity is the equivalent of choice (pp. 447-448).29

Some argue that the term dignity is a cover for something else (p. 902).27 Frequent references in the debate over physician assisted death about the indig- nity of incontinence and the wiping of butts,31 led Felicia Ackerman to bluntly criticize those who appear to argue that “human dignity resides in the bladder and

the rectum (p. 151 ).”32 Others emphasize the connec- tion between dignity and control over a person’s own destiny,33 prompting whether it is even accurate to equate dignity with personal control over the dying process – a natural process that eludes human con- trol.34

Third, it is not clear that there is a difference referencing dignity as pain relief versus putting an end

to suffering. In this, there is general agreement that “pain” is a physical condition experienced by a patient. “Suffering” is a broader term that includes not only physical discomfort but also psychosocial, spiritual, and relational distress. However, there is slippage between the terms as they are sometimes used synony-

mously.35, 30 Unrelieved pain is an indignity, especially in a society with the ability to alleviate most pain. Suffering also might be an indignity, even though human mortality is reason enough for existential suffering (p. 118). 34

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A fourth source of disagreement is whether dignity is characteristic of death or only life. Paul Ramsey challenged whether it is accurate to talk of the dignity of death, maintaining that death with dignity is a contradiction in terms.36 Ramsey also noted that attempts to beautify death, particularly by comparing it with birth, are mistaken as death is neither beautiful

nor a beginning; it is instead “oblivion” (p. 48). 36 Surgeon and writer Sherwin Nuland maintains that “the good death has increasingly become a myth” and he has “not often seen much dignity in the process by which we die.”37 Technological intervention, opposed to simply death, may be the crux of the matter because “for many people, death in modern advanced societies is inherently undignified (p. 1997). “38 Others argue that the Death with Dignity movement is not literally concerned with death itself but with the process of dying with dignity (p. 257). 39 Still, “death with dignity” is a stock phrase not only in bioethics, but also in legislatures, courtrooms, and the bedside of patients.

Fifth, dignity can be objective or subjective. A common complaint about physicians is that they view dignity as a commodity given to the patient/customer. Physicians are not required to recognize the patient as a person and to respond according to individual human- ity, but they become customer service providers.40 Allmark examines how health care professionals can affect the experience of dignity, and finds that while they “cannot ensure that someone dies with dignity” they can, on the other hand, “contribute to a death without indignity.”39 In this, dignity is not a defined value but a status that influences behavior. For

Giannet, it means “presence” and a change in medical practices that betters attends to the individual pa-

41 tient.

Finally, there are conceptual versus experiential notions of dignity. Shepherd points out that the “dignity” referenced in the debate over what she refers

to as physician assisted suicide “is not the dignity of philosophers” but of everyday conversation (p. 448). 29 In this, “dignity” is determined not by philosophical musings but by perceptions of others. Dignity is a normative concept undermined when a person becomes “helpless, incontinent, incoherent, dependent, drool- ing, a burden to others, and of poor general deport- ment.”29 Campbell suggests that those in favor of physician assisted death adopt an experiential compo-

nent of dignity that equates physician assisted death with peaceful death (p. 112). 34 She instead conceptu- alizes dignity as a “lifetime art” (p. ИЗ).34 The argument is that an undignified life does not beget a dignified death. Ronald Dworkin argues the flipside, how one dies should be a reflection of how one lived

(p. 199).42 He states, “the emphasis we put on dying with ‘dignity ‘…shows how important it is that life ends appropriately , that death keeps faith with the way we want to have lived.”42

Given these six fundamental disagreements, Ruth Macklin provocatively argues that “dignity” is not even a useful term.43 She observed that “dignity” is either “vague restatements of other, more precise, notions or mere slogans that add nothing to an understanding of the topic,” and argued that dignity was nothing more than respect for autonomy and the term should not be used (p. 141 9). 43 One of the interesting online rebuttals observed that the question of whether “dignity” is useful depends on the ancillary

question – useful for whom? For patients, “dignity” is a meaningful term and one they understand.44

Daryl Pullman integrates much of the previous discussion by drawing on the distinctions between “basic dignity” and “personal dignity.”30 Basic dignity invokes the transcendental realm of Kant, inherent and inalienable universal value for individuals. He con-

trasts this understanding with appeals to personal dignity, a concept “more particular, individualistic, and transient in nature.” Personal dignity ties to elements that define the aesthetic of a beautiful life

such as social circumstances, individual identity, and personal goals (p. 76). 30 Pullman uses this distinction to examine “the ethics and aesthetics of pain and suffering” (p. 75). 30 He argues that “dignity” can serve

as moral grounds for the duty to relieve pain and suffering, but that pain and suffering disrupts the aesthetics of living a meaningful life and individuals perceive a loss of dignity (pp. 78-79, 88). 30 He argues that the concept of human dignity “emerges at the interface of the moral and the aesthetic,” conveying both the “ethically good” and the “aesthetically beautiful” (p. 77). 30 In the end, he proposes placing the aesthetics of suffering in a context of the communal

and relational to continue the beautiful aspects of life during the dying process (p. 89). 30

Pullman’s analysis offers an explanation as to how some within the physician assisted death discourse can

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Death with “dignity”

argue that no matter the disability, disease, or prognosis, a person retains basic dignity, while others argue that those same circumstances rob one of personal dignity. Not Dead Yet generally embraces a notion of basic dignity and questions any references to a particular aesthetic condition that justifies physician assisted death. In contrast, Compassion & Choices adopts the personal model of dignity to support a “moral obligation to relieve pain and suffering,” even if that means the ending of a human life (p. 76). 30 Proulx and Jacelon make a similar argument referring to the internal and external aspects of dignity. The internal aspect recognizes the common human worth of all people, “which is uniquely expressed by their life stories,” while the external protects the particular values held by a specific individual such as “physical comfort, freedom from pain, autonomy, meaningful- ness, preparedness, spirituality, interpersonal connect- edness, and dying at home” (p. 116). 45

Having introduced this array of tensions over what dignity means in the context of death and dying, the next section examines how Not Dead Yet and

Compassion & Choices use dignity to debate physician assisted death from opposite sides. The value of this approach is that it highlights aspects of this political struggle that the left to right framing of physician assisted death fails to capture, and invites discussion about how the two groups could further advance their

agendas by aligning.

Parallel world views of Compassion & Choices and Not Dead Yet

Why have progressives divided on physician assisted death? The answer is that “dignity” is a wedge concept

that divides groups like Compassion & Choices, which emphasizes personal dignity, from groups like Not Dead Yet that emphasize basic dignity. But this answer does not account for why there is no discussion or reconciliation between these differing perspectives of

dignity. The approach and findings from Contested Lives by Faye Ginsburg suggests exploring how words, experiences, and assumptions contextualize a medical practice to produce powerful parallel worldviews that go largely unnoticed.8

Ginsburg’s book studied abortion politics from both sides of the debate in Fargo, North Dakota. She argued

that abortion serves as a “condensed symbol for the devaluation of motherhood and the central attribute

assigned to it in this culture – the self-sacrificing nurturance of dependents” (p. 7). 8 The same could be said about physician assisted death and how its legalization could operate to further devalue people with disabilities. Within a culture that not only celebrates but that even presumes the health, youth, and able-bodiedness of its people, “dignity” attaches meaning not only to dying but also to the conditions of aging and living with disabilities. In this, “dignity” not only defines a physical condition but also the people who have a terminal illness, a disability, or who have lived for many years. The conflict is one that makes it an indignity for a person to become dependent.

Ginsburg also argued that “by casting two interpre- tations of female lives against each other, the abortion debate masks their common roots in the problematic conditions faced by women living in a system where wage labor and individual achievement conflict with reproduction, motherhood, and nurturance (p. 220). “8 Again, a similar analysis of problematic conditions applies to the debate over physician assisted death. The “choice” to use physician assisted death does not appear to be a genuine choice in the larger social context. Choice is not meaningful in a society without universal health care, with limited and fragile support

systems, and where discrimination remains ever pres- ent in the everyday lives of people with disabilities. Framing the disagreement as a battle between the left and right obscures the systemic problems that render choice a fiction even though common ground exists for

advocating shared values such as human rights, equality, and inclusion.

The analysis of these different worldviews briefly reviews the position of Compassion &c Choices and offers a more complete description of Not Dead Yet’s argument against physician assisted death. The ideo- logical views from the left and from the right dominate the discourse about this issue in the media, courtrooms,

and state legislatures. Less noted, and even less examined, are the arguments from progressive disabil- ity rights groups that oppose physician assisted death. Therefore, the focus on Not Dead Yet’s concerns about physician assisted death is intended to mine the overall discourse for places where their worldviews come closest to meeting.

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Compassion & Choices For the “aid in dying” movement, “dignity” is the

touchstone for achieving a “good death.” The aid in dying script draws from three overarching themes: first, bans on physician assisted death force terminally

ill people to endure pain and suffering; second, the terminally ill are denied their legal rights to privacy, liberty, and personal autonomy; and third, the bans on physician assisted death impose indignities on the dying that stand in the way of achieving a “good death.” With this argumentative strategy, proponents offer narratives of emotionally laden personal stories, employ the legalistic language of rights and court precedents, and refer to philosophical discussions of what constitutes the “good” (pp. 190-194).

Best exemplifying this script are the arguments of Compassion & Choices. The focus on individual pain and suffering is present throughout their legal and political documents. Their party brief in Washington v . Glucksberg begins by reviewing the individual stories of the litigant patients.21, 1 For instance, in the Declara-

tion of Jane Roe, one of the patients dying from cancer

describes her deteriorating physical condition, her pain as “unrelenting” with an array of uncomfortable side effects from treatments, and her wish not to have to die

alone and unsupported should she decide to hasten her death (pp. 23-24). 31 Law review articles, Compassion & Choice’s website, press release, and mailers fre- quently reference personal stories of suffering.

The legal focus of Compassion & Choices is on privacy, bodily autonomy, and choice rights. The liberty clause of the Fourteenth Amendment gives textual support to the claim that individuals are free to

determine “life shaping decisions (p. 3).”1 According to this line of argumentation, the state’s interest is not

prohibiting these decisions but that of safeguarding the decision making atmosphere so there is confidence that the person is competent and is in fact dying. “To deny a competent, dying patient the right to choose a humane, dignified death is to condemn the individual to live the final chapter of life in a state controlled and

state approved manner (p. 6).”1 The third dominant theme is that individual patients

should determine for themselves what exactly consti- tutes a “good death.” Such an assessment is deeply personal since it reflects specific experiences, values, relationships, meanings, and spiritual beliefs. Kathryn Tucker, counsel for Compassion & Choices, referenced

philosopher Ronald Dworkin in a speech endorsing his observation that “requiring someone to die in a way in which others approve but the patient believes is a horrifying contradiction of his life is a devastating, odious form of tyranny (p. 170). “46

These themes are interwoven in a March 2010

Compassion & Choices mailing. On the envelope, the slogan, “Help us protect your freedom to choose dignity …” sets the tone for the advocacy letter. The language of “dignity,” “your rights” and “suffering,” is invoked while terminology such as “physician assisted suicide,” “suicide,” “euthanasia,” and “has- tening death” is absent. The opposition is named through ideological references, all of which render the disability rights movement invisible: “anti-choice extremists,” “right wing extremists,” a “powerful coalition of religious and political extremists,” and “the pious and afraid.” Also included is a carefully worded national survey asking: “Do you believe that mentally competent, terminally ill adults should be able

to obtain aid in dying from their physicians?” and, “Should physicians or family members be criminally prosecuted for supporting such patients in seeking a painless, dignified and human death?” Although these questions reinforce the theme of dignity, they do not explicitly ask whether respondents support “physician assisted suicide,” a very specific practice. Instead, “aid in dying” is a vague phraseology, as it constitutes a larger category of actions that can include treatment options such as pain control, palliative care, and spiritual care.

Although far from exhaustive, this brief review suggests a specific worldview held by Compassion & Choices. It is important to control one’s own death and implement one’s own vision of a good death; taking action in response to pain and suffering is an ethical act; and human rights must be recognized as including a right to control and determine the manner and time of one’s own death. “Compassion” is an instructive term as it speaks of sympathy and being “with” a person as they go through the dying process.

Thus, Compassion & Choices adopts the liberal vision of the individual as autonomous, independent, and capable of actualizing choices. This is a perspective that emphasizes loss – that this person so compromised by illness is in danger of no longer existing in a meaningful way, and therefore should not be forced to

live in this undignified manner. Note how this

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Death with “dignity”

perspective must sound to those with disabilities. This form of suffering is quite understandably one to be avoided, and necessitates that individual control be honored and exerted even so far as choosing the timing

of death and the manner of dying. Individual rights trump the interests of groups or the state. This, then, is a world of fundamental rights supported by the assumption that legal lines provide sufficient safe- guards in the practice of physician assisted death so that people with disabilities live unthreatened.

Not Dead Yet

Founded on April 27, 1996 following Dr. Jack Kevorkian’s acquittal in the assisted suicide of two women with nonterminal disabilities, Not Dead Yet actively opposes physician assisted death within the states and in the courts, and yet it has found itself pushed to the sidelines of the debate. For instance, the Court of Appeals in Compassion in Dying v. Wash- ington appeared dismissive of their concerns when the court stated, “Again, the opponents of physician assisted suicide urge a variation of the discredited anti abortion argument. Despite the dire prediction, the disabled were not pressured into seeking abortions. Nor is it likely that the disabled will be pressured into committing physician assisted suicide (p. 825 ).”47 When the Supreme Court upheld Oregon’s Death with Dignity Act in Gonzales v. Oregon , Not Dead Yet responded, “Judging by the split in the Court vote, it’s clear that the Court accepted the usual portrayal of assisted suicide as an issue of ‘Compassionate progres- sives’ versus the ‘religious right,’ completely ignoring the discrimination argument.”48 Indeed, even Justice Kennedy, who voted in favor of the physician assisted death bans in Glucksberg and Vacco , wrote in Gonzales that Oregon’s Death with Dignity Act “limits its exercise to the attending physicians of terminally ill

patients (p. 923). “49 The language and rationales used to promote

legalizing physician assisted death extend beyond references to the dying process. For instance, Judge Reinhardt in the 9th Circuit Court of Appeals spoke of those in a “childlike state of helplessness, diapered, sedated, incontinent” (p. 814)50 – a description that could include many people with disabilities who are not near death. As one critic notes, such court opinions

“are saying that there are some lives which the state has little or no interest in saving (p. 998). “51 Still,

physician assisted death proponents do not concede the connection between having a disability and being vulnerable to physician assisted death. A case in point is Ann Neumann, author of Otherspoon blog: “Again, I sympathize with the fear and vulnerability the disabled community feels toward the medical industry,

the state, and society, but conflating two separate issues is just bad advocacy. With a little paranoia thrown in.”52

Despite being dismissed or marginalized, Not Dead Yet perseveres with numerous position papers, amicus briefs, blogs, and articles that suggest its arguments about physician assisted death. First, there is the issue of inequalities that arise when legal protections applied to the able bodied are either denied to those with

disabilities or constructed in ways that undermine their

strength. Second, proponents of physician assisted death blur any distinction between those with a disability and the terminally ill, thus providing fertile ground for a slippery slope of practices. Finally, the debate over physician assisted death occurs within a cultural context that assumes the indignity of life with

a disability. This three-part script serves as a counter- weight to Compassion & Choices. Rejecting that rights and autonomy lead to choice, disability rights advo- cates maintain, “Pity and fear are important compo- nents of a potentially deadly equation (p. 267). “53

Not Dead Yet’s inequality argument has three components. First, within “legalized medical killing [there] is a deadly double standard” that legally protects the non disabled from suicidal behavior while condoning and enabling the suicide of those with disabilities including the terminally ill.54 Even more troubling, activists say, is that this has occurred since the 1990 passage of the Americans with Disabilities Act (p. 4).55’56 Proponents of physician assisted death dispute this charge by reference to the specific limitations within Death With Dignity laws regarding terminal status and decision making autonomy. Not Dead Yet refutes these reassurances by pointing to lower court decisions that supported Elizabeth Bou- via’s initial decision to end her life, and to the acquittal

of Dr. Kevorkian for assisting in the deaths of people without terminal conditions (pp. 7, 12). 56 These courts,

Not Dead Yet argues, groups the disabled into the category of the terminally ill. If not for a disabling condition, the courts would have insisted that these suffering but not terminally ill patients receive suicide

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Behuniak

prevention counseling rather than assistance in hasten- ing death. As Clair Lewis, a “disabled activist with the Direct Action Network,” wrote in The Independent , “When healthy people are suicidal, the usual response is to try to help them live better lives, not provide a solution which encourages them to die. It seems that disabled people are the only people who can be suicidal and mentally competent at the same time.”57

A second prong of the equality argument addresses how the courts interpret and apply the Fourteenth Amendment’s Equal Protection Clause. Prevailing interpretations inevitably lead to slippage between limiting those qualified to access physician assisted death and others with similar, not even identical, characteristics (p. 278). 53 For example, Equal Protec- tion Clause jurisprudence does not recognize people with disabilities as a “suspect” classification as it does, for example, racial or ethnic classifications. These laws are not subjected to the rigorous analysis of “strict scrutiny.” Laws treating the disabled “differently” are subject to the rational basis test which only requires differential treatment be reasonably related to a legitimate government goal. When applied to early race and gender classification cases – before the Court decided to apply a more challenging test – it validated laws based on what at the time seemed “reasonable”

assumptions about the inferiority or limitations of the classified group.

Related to this, and directly relevant to the concern about slippage in law, is the pattern of how Equal Protection Clause jurisprudence develops. Once a right is recognized for a defined group of people, other groups can then petition the court to expand applica- tion of the right in the name of equal protection to those “similarly situated.” This is what occurred when married couples first won the right to contraception58 and others cited the Fourteenth Amendment’s liberty clause and the Equal Protection clause to secure this right for unmarried couples,59 and minors.60 In this context, it is not a stretch to argue that once a right to

physician assisted death is recognized for terminally ill competent adults, courts could extend the right to others in similar situations.

Would living a life viewed as dependent, incontinent, and painful be an undignified life? In fact, the companion case to Glucksberg , Vacco v . Quill ,22 employed this very equal protection argument to challenge New York’s ban on physician assisted death.

Given the decision in Cruzan that established a right to

withdraw life support even when such an action would likely hasten death, Dr. Quill, a pro-physician assisted death advocate, argued for extending this right to the terminally ill.61 His logic was that patients who sought physician assisted death were in the similar situation of

desiring to preserve their dignity by invoking their right

to die. That argument failed to convince the Vacco court that the two groups were comparable, but within

Not Dead Yet the concern remains that claiming a right to meet death with “dignity” could convince future courts to rule that the terminally ill and those with disabilities are indeed similarly situated.62

A third component of Not Dead Yet’s equality argument is constructed as a challenge: either the law should ban physician assisted death for all or the law should allow all competent adults, no matter their physical condition, to choose physician assisted death.56 “[I]f proponents of assisted suicide believe that adequate safeguards against treatable suicidal feelings can be established, then they should be willing to allow physician assistance for every citizen, regard- less of their health status, after those safeguards have been observed (p. 29). “56

In addition to the Equal Protection Clause arguments is the second theme in Not Dead Yet’s script against physician assisted death – the slippery slope argument. Rather than the concern about expanding the popula- tion eligible for physician assisted death, the slippage argument focuses on the probability of expanding beyond physician assisted death to even more contro-

versial euthanasia practices. From a disability rights viewpoint, there is no safeguard that can prevent a right to die for the terminally ill competent adult who

can self administer a fatal drug from being extended to a suffering patient not dying, incompetent, or unable to

swallow pills (pp. 24-27).56 Rather than serving as a bulwark between these scenarios and physician assisted death, the rhetoric of preserving dignity conjoins.

Fanning this fear is Not Dead Yet’s litany of references to horrific past practices committed in the

name of death with dignity – narratives that directly counter the emotional appeal of stories that Compas- sion & Choices references. The dominant example cited by Not Dead Yet is the systematic extermination of the physically disabled, mentally impaired, and the genetically “tainted” by the Nazis, but other less horrific examples include the expansion of physician

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Death with ” dignity ”

assisted death in The Netherlands to both voluntary and nonvoluntary euthanasia. Also cited are cases in the U.S., where courts agreed to allow the disabled to end their lives prematurely with medical assistance, for

example turning off ventilators of quadriplegics (pp. 6-

14). 56 Having moved far beyond the right to refuse medical treatment, these cases signify something much

more dangerous for the disabled community – a devaluation of persons with disabilities.53 As Paul Steven Miller argues, “When society pities and fears persons with disabilities to the extent that suicide is considered a rational choice, it is difficult to expect that the same society will treat such persons as truly equal (p. 48).”63

The recent case of Baxter v . Montana 64 makes Not

Dead Yet’s point that medical practices tend to slip from the ethically marginal to the clearly unethical. In

Baxter , a 5-2 majority of the Montana Supreme Court found no distinction between the rights to withhold or

withdraw medical treatments and the right to physician

assisted death. Instead, the court determined that physicians were shielded from prosecution for all of these actions under the Terminally 111 Act because all three – withholding, withdrawing, and prescribing le- thal drugs – involve “assistance” by a physician, and are initiated by the end of life preferences of the patient

(p. 20). 15 In so holding, the court agrees with the testimony of Baxter who rejected terminal sedation as an undignified solution to his concerns about suffering:

I am appalled by th[e] suggestion [that terminal sedation could be a replacement for physician assisted

death] and the loss of personal autonomy it involves. I

understand that terminal or palliative sedation would

involve administering intravenous medication to me for

the purpose of rendering me unconscious, and then

withholding fluids and nutrition until I died, a process

that may take weeks. During this final period of my

life, I would remain unconscious, unaware of my situation or surroundings, unresponsive from a cogni-

tive or volitional standpoint, and uninvolved in my

own death. My ability to maintain personal hygiene would be lost and I would be dependent on others to

clean my body. My family would be forced to stand a

horrible vigil while my unconscious body was main- tained in this condition, wasting away from starvation

and dehydration, while they waited for me to die. I would want to do whatever I could to avoid subjecting

my family to such a painful and pointless ordeal. I feel

strongly that my privacy, dignity and sense of self

autonomy will be forfeit if my life has to end in a state

of terminal sedation (pp. 2-3). 14

Baxter’s affidavit referred not only to the fear of pain

during the dying process, but touched upon other quality of life considerations that threaten the disabled

(pp. 1000-1002).51 Namely, patients are confronted with the concerns of dependency regarding personal hygiene, of “wasting,” of being a burden to family, and

of loss of dignity.