DYING WITH DIGNITY?

Why Disability Advocates Say No to Doctor-Assisted Death

Since Brittany Maynard’s physician-assisted death last fall, the right-to-die movement has picked up steam. But an unexpected group strongly opposes it.

02.20.15 10:15 AM ET

Last week, Christie White declared her intention to fight the state of California for her right to die with the help of a physician.

“I am suing the state of California to help me achieve a peaceful and dignified death at the place and time of my choosing,” White said at a press conference, CNN reported. White has either leukemia or lymphoma and has been treated for it since 2007. Several other plaintiffs joined her, including physicians with terminal illnesses.

Public opinion is quickly propelling toward White’s favor, especially since over 11 million people watched Brittany Maynard’s video arguing for her right to die. Maynard passed away in Oregon last October, surrounded by her loved ones. Lawmakers in New York, inspired by Maynard, have recently introduced a bill that would legalize physician-assisted death. Seventy-four percent of the country is now in favor of physician-assisted death, while only 14 percent remain opposed.

The resistance to the legalization of physician-assisted death often seems to originate from religious zeal that, cruelly, would have people suffer rather than violate a divine edict not to kill. Assisted death’s supporters, then, are the forces of compassion, dignity, rationality, and secularity. In many articles on the topic, such as this one, the only opposition to assisted death mentioned is religious opposition. However, many disability-rights advocates are extremely concerned about the increasing societal approval of assisted death, and oppose it for entirely secular reasons.

Samantha Crane is the director of public policy at the Autistic Self-Advocacy Network. Crane recently lost her grandmother, who had Alzheimer’s disease. While Crane mourns her loss, she doesn’t view her grandmother’s final days as a tragic decline or a fall from the dignity of her earlier days. “She didn’t remember a lot of things, but every day she woke up, she was happy,” Crane told me. “She was dignified. I want to reclaim the term ‘dignity.’”

The Autistic Self-Advocacy Network is one of several disability-rights organizations that opposes legal physician-assisted death.

Supporters of physician-assisted death argue, however, that it’s a matter of freedom of choice whether people live or die. They say that no one should die without dignity, that sometimes life is too painful or difficult to be worth living. Thus compassion should compel us to aid someone suffering, and who has a terminal illness, to end their lives. The leading right-to-die organization, Compassion and Choices, did not reply to an emailed request for interview by the time of publishing.

Disability-rights advocates, on the other hand, are concerned that there is a double standard. Suppose a good friend of yours says that she wants to kill herself. You, and most people others close to her, would probably try to help her so she did not feel that suicide was a viable option. Suicide prevention would be the goal of the medical profession, of family and friends. Not, however, in the case of someone seeking physician-assisted death.

“The difference is your health or disability status. Then suddenly suicide is a rational decision,” Diane Coleman, president and CEO of Not Dead Yet, a disability-rights group that advocates against assisted suicide and euthanasia, told The Daily Beast. “We think equal rights should also mean equal rights to suicide prevention.”

Of course, someone who supports the right to legal assisted death would stress that it is in cases of terminal illness and pain, and not disability, in which they wish to allow people the right to die. Disability- rights advocates, however, think this can be misleading because prognoses can so often be mistaken.

“A lot of people say this is not about people with disabilities, this is about terminal prognoses,” said Crane. “Yet the disability community is filled with people who have outlived a six-month prognosis for years.”

Crane was quick to emphasize that she did not believe that people who support a right to die have a monopoly on compassion. “People believe that opposition to physician-assisted suicide is a belief that it’s noble to suffer, or that people shouldn’t have the ability to control their care when they are seriously ill,” Crane said. “That is not the basis of our beliefs. Our goal is to make everyone happier, and to make sure that they have quality lives and help them have access to everything they need so that they do not want to die.”

The thought of becoming disabled can be terrifying, especially to those unfamiliar with disability or who participated in the care of someone with a disability who had inadequate supports. Perhaps what most of us fear most is loss of cognitive abilities, and ultimately the loss of ourselves.

Stephen King, fittingly, captured this fear well when he was interviewed on NPR’s Fresh Air in 2013:

So here’s the movie that scared me the most in the last 12 or 13 years: The movie opens with a woman in late middle age, sitting at a table and writing a story, and the story goes something like, ‘Then the branches creaked in the ...’ and she stops and she says to her husband, ‘What are those things? I can’t think of them. They’re in the backyard and they’re very tall and birds land on the branches.’ And he says, ‘Why, Iris, those are trees,’ and she says, ‘Yes, how silly of me,’ and she writes the word and the movie starts. And that’s Iris Murdoch and she’s suffering the onset of Alzheimer’s disease. That’s the boogeyman in the closet now. ... I’m afraid of losing my mind.”

Yet when reading about places (see, for example, here and here) that provide excellent care to people with dementia, that respect their autonomy, that provide moments of pleasure and love and encourage flashes of sweet memory, that think about the dignity of people with dementia, you begin to see how dementia could be a mournful thing but not an unmitigated horror.

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As Crane says, “Even if you are thinking of progressive cognitive disability as a change to a new person, that person has a right to live.” And there are ways to make that person’s life go better. Momentary pleasures and treasured memories can make dementia seem livable and less terrifying.

Ira Byock, a physician and the director of the Providence Institute for Human Caring, is the author of a recent book on palliative care, The Best Care Possible. He, too, is opposed to physician-assisted death. “I’m motivated by basic social principles more than anything religious,” Byock said. “It is a fundamental principle that doctors should not kill.”

Byock emphasized that palliative and home care options exist for terminally ill patients, but too many doctors do not offer them to their patients. People do not even know what their options other than suicide are.

“Many folks may have experienced death of a loved one where palliative care and support received was insufficient,” said Coleman. “Not everyone is getting what they should from the system. They didn’t get pain relief needed or didn’t get the home care they needed. You can see why the only solution seems like assisted suicide.”

Disability groups believe that much of what motivates people to access physician-assisted death is not pain, but fear of disability. In Oregon, where physician-assisted death is legal, surveys of people who partook of the option showed that while only 28 percent cited pain as a reason for choosing to die, 93 percent cited loss of autonomy. Just about half cited fear of being a burden on others. This suggests that it may not be presently experienced pain that’s motivating people, but imagined future disability.

“As a culture, are ingrained with idea that disability truly tragic, horrible thing,” said Crane. “We can lead quality lives even when having support and assistance with bathing, if we are showing people that they are still valued and respected.”

The question is: How good are we at predicting what our lives will be like if we were to experience a disability? Unquestionably there is a shock and frequently a depression when first experiencing a disability. Some data had previously shown that, after an adjustment period, many people with disabilities soon recovered their original sense of wellbeing. 

Richard Lucas, a professor of psychology at Michigan State University who studies subjective wellbeing—that is, what life events make us happier or sadder—is questioning those data. “I think in general, researchers have interpreted the fact that people with disabilities are not miserable (i.e., they are not all depressed) as meaning that they have adapted back to their original levels,” Lucas wrote in an email to The Daily Beast. “My studies showed that even if they are not miserable, they often experience a relatively large decline in life satisfaction.”

Other researchers, however, emphasize that people do recover some, if not all, of their life satisfaction after experiencing a disability.

“The general finding is that people do adapt—i.e. that they bounce back from becoming seriously disabled (defined as people who declared themselves disabled and are functionally impaired as in they are unable to do day-to-day activities)—but the adaptation is only partial,” wrote Nattavudh Powdthavee, professorial research fellow at the University of Melbourne and London School of Economics, in an email. “On average, they only recover around 30 percent of their initial loss in life satisfaction over time. Adaptation is more complete (at the rate of 50 percent recovery) for moderately disabled people.”

“Overall, there is no doubt that disability by itself lowers the quality of people's lives, but other factors in life can mitigate much of that effect,” added Andrew Oswald, a professor of economics at Warwick University, via email. “All humans have good and bad things happen to them during the sweeping path of life. In our data sets, huge numbers of disabled people live enjoyable lives.”

Research has not yet isolated what differentiates people with disabilities who have enjoyable lives from ones that don’t. But it seems likely, at least, that some of the things that might matter are the ability to continue participating in social activities, being comfortable, and having some control over your life. If these issues were addressed for all people with disabilities, some of the difficulties might be mitigated.

“These issues make me think about the need for consumer-controlled home care. I need that myself as a disabled person,” said Coleman. “If I didn’t have it, I would have a problem in terms of my quality of life.”

Consumer-controlled home care involves assistance with daily living in your own home. You would be able to hire, train, and supervise someone in your care, even if a third party pays. This option would alleviate burdens on families, but it is not a requirement to discuss it with patients considering physician-assisted death.

As for the costs of such care, Byock believes investing in excellent palliative care would be more affordable. “You only have to trade a few days in the ICU for enormous amounts of in-home care and community care.”

Disability advocates also worry about the risk of coercion. Not all families are loving families, and some might make clear to a relative that their presence is burdensome. Some might coerce in other ways. In fact, the Oregon law actually does not require a physician or other witnesses to be present when the lethal dose is administered.

Byock sounded his frustration at talking about physician-assisted death when the conversation should be about how to make people as comfortable as possible at the end of their lives and ease the burdens on their caregivers.

“I feel like Billy Pilgrim in a dark Vonnegut novel where people are suffering,” he said. “Instead of talking about the roots of the suffering and addressing those in a robust way, we’re talking about expanding the scope of physicians’ practice to include the intentional ending of people’s lives.”              

Editor’s Note: Sean Crowley, Media Relations Manager of Compassion and Choices, contacted The Daily Beast after publication to note that “this article’s characterization of Compassion and Choices ‘the leading right-to-die organization’ is not accurate. We are the leading organization that advocates for expanding end-of-life options, including authorizing death with dignity via the medical practice of aid in dying.” He also emphasized that people with dementia are not mentally competent so they are legally eligible to access medical aid in dying, and that polls commissioned by Compassion and Choices show that strong majorities of voters with disabilities in several states support the legalization of medical aid in dying.