Bioethics Forum Essay

A Peaceful Death or a Risk to People with Disabilities?

Armond and Dorothy Rudolph of New Mexico were evicted from their assisted living facility in January 2011, after administrators called the police and rescue workers and informed them the couple, who were in their early 90s, were attempting suicide. A chaotic scene ensued and the Rudolphs were permitted to remain in their apartment for one more night. The following day the Rudolphs’ children rented a nearby home and 10 days later after refusing food and water Armond and Dorothy Rudolph died.

This incident generated national headlines, and it continues to be widely debated. Many were shocked that an assisted living facility would evict an elderly couple who wanted to die in their own apartment. The Rudolphs’ son, Neil, stated the administrators at the assisted living facility were “inhumane” and along with Compassion and Choices used the death of his parents to advocate for VSED (voluntarily stopping eating and drinking for the sole purpose of causing death).

Barbara Coombs-Lee, president of Compassion and Choices, has consistently maintained VSED is “universally available, legal, safe, painless, and suitable for the gentle parting in one’s own home with loved ones present.” Compassion and Choices created a national campaign “Peace at Life’s End. Anywhere” to advocate for VSED. In my estimation this effort has clouded the ethical conundrums at the end of life and blurs the lines between how we perceive assisted suicide, palliative care, and terminal sedation.

Dying by VSED has sparked an intense and polarizing debate. On one side you have Compassion and Choices maintaining that VSED is a panacea for those who want to end their lives in the absence of assisted suicide legislation. On the other hand you have groups such as Not Dead Yet and the Anti-Euthanasia Coalition arguing that VSED is inherently flawed and poses a serious risk to vulnerable populations such as the elderly and disabled. What is absent in discussions of VSED, assisted suicide, and euthanasia in general is a disability rights perspective.

This omission is unfortunate in part because the fear of disability, cognitive and physical, at the end of life is palatable. Indeed, fear of disability, dementia, and the loss of independence and personal autonomy are often cited as the reasons many people Oregon choose assisted suicide. Ira Byock has written: “Americans are scared to death of dying. And with good reason. While rarely easy under any circumstances, we make dying a lot harder than it has to be.”

The vast majority of Americans continue to die in hospitals. Far too many people needlessly suffer at the end of life, and deaths perceived to be bad leave a lasting and negative impression of the American health care system. Death, like disability, is a complex amalgamation of issues: existential angst, physical pain, loss of independence and control of one’s bodily functions, and situational depression are but a few of the variables people must cope with. Moral and ethical questions abound and I would argue that people with disabilities are uniquely suited to have a prominent role in discussions about end-of-life care.

We Americans are fiercely committed to equality, and yet most will admit that some populations are devalued: people with a disability, the elderly, and terminally ill.  According to Carol Gill, when a person who is not in one of these groups expresses a desire to die via VSED, “it is characterized as ‘suicidal,’ and the individual is treated accordingly.”

But, she adds: “For persons with severe disabilities, however – particularly persons who use a respirator, feeding assistance, or other life aides – the desire to die has acquired labels such as ‘refusal of treatment,’ a wish to avoid prolonged suffering or dying, a desire to let terminal disease take its natural course (used in cases of long-term disability lacking any evidence of terminal illness!), and ‘not committing suicide.’ The implication is that there is something natural, reasonable, or proper about a disabled person’s dying as opposed to a nondisabled person’s dying.”

Theoretically, the belief of Compassion and Choices that any person can opt to end his or her life by VSED is correct – anyone does indeed have this option “when physical decline and suffering become pointless and unbearable.” What advocates for VSED conveniently ignore is the cultural response when an individual actually expresses such a desire.

It does not take much effort to find examples of people with a disability who are applauded because of their brave desire to die. In The New York Times, Jane Gross writing about her mother’s death and Dudley Clendinen writing about his desire to die before ALS locked him in spring to mind. These are well known end-of -life stories.

Contrast them with Larry MacAfee, David Rivlin, and Christina Symanski, quadriplegics who all expressed a desire to die. Few people outside of the disability rights community will know these names. Symanski who did in fact die via VSED reinforced an ugly truth about how people perceive disability – that one is better off dead than disabled. Of course few people will openly admit this. Jackie Leach Scully identifies this nonverbalized bias “disablism.” “People who are nonconsciously or unconsciously disablist do not recognize themselves as in any way discriminatory,” she wrote; “their disablism is often unintentional, and persists through unexamined, lingering cultural stereotypes about disabled lives.”

In its opposition to VSED Not Dead Yet has noted: “The disability community can readily empathize with chronic pain and the struggles to get the medical profession to address it with competence and commitment. We can empathize with what it feels like to lose mobility and need help with daily tasks. But we also know from experience that independence is not really about whether we need mobility devices or personal assistance, it’s about whether we have control over the way those needs are met.”

This is not an abstract issue. This affects real people. People like Thomas Young, a disabled veteran shot and paralyzed in Iraq in 2004 who has expressed his intentions to die via VSED next month. Young, a so-called Wounded Warrior, and subject of the critically acclaimed film Body of War, might die not because he has a severe disability but we as a society have failed him and countless others.

William J. Peace is an independent scholar. His research interests include disability rights, bioethics, body art and modification, and the history of anthropology. His blog is Bad Cripple.


Posted by Susan Gilbert at 03/19/2013 05:42:50 PM |

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