January 18, 2006

Why Disability Rights Activists Oppose Physician Assisted Suicide

The U.S. Supreme Court, in a 6-3 ruling, has said Oregon's "Death with Dignity" law trumps federal authority to regulate doctors.

From the Washington Post:

Justice Anthony Kennedy, writing for the majority, said the federal government does, indeed, have the authority to go after drug dealers and pass rules for health and safety.

But Oregon's law covers only extremely sick people -- those with incurable diseases, whom at least two doctors agree have six months or less to live and are of sound mind.

The Jan. 17 ruling is yet another round in the ongoing "right to die" debate. Only one state so far has such a law, although others are in the works.

The "right to die" is what the media calls a "hot-button" issue, and in the wake of the ruling, news organizations are readying another round of "in-depth coverage" on both Oregon's law and the broader "Death with Dignity" (or "Right to Die") movement in the U.S.

There's little reporting on the U.S. disability rights movement's take on the issue of physician-assisted suicide. So it's time for Ragged Edge to take a closer look at this.

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 progressives' versus the 'religious right,'" said Not Dead Yet's Diane Coleman today in a press release responding to the ruling.

Although it is true that people who have disabilities are widely divided on the issue as to whether physician-assisted suicide is a good thing or not, the fact is that almost all of the major U.S. disability rights organizations have come out opposed to legalizing physician-assisted suicide. Ten major groups filed an amicus brief opposing the Oregon law in the Supreme Court case, including Not Dead Yet, which leads disability rights opposition to physician-assisted suicide; ADAPT; the Center on Disability Studies, Law and Human Policy at Syracuse University; the Center for Self-Determination; the Hospice Patients Alliance; Mouth Magazine/Freedom Clearinghouse; the National Council on Independent Living; the National Spinal Cord Injury Association; Self-Advocates Becoming Empowered; TASH and the World Institute on Disability.

Why do disability rights activists oppose physician-assisted suicide?

Disability groups, in their amicus brief, said that legalizing physician-assisted suicide for only one group of people -- the ill -- was discriminatory.

"We're disappointed that the Supreme Court, which had an amicus brief about the discrimination inherent in the assisted suicide law, ignored that argument," said Coleman. "If the values of liberty really dictate that society legalizes assisted suicide, then legalize it for everyone who asks for it, not just the devalued old, ill and disabled. Otherwise, what looks like freedom is really only discrimination."

One might think that disability rights activists would be strong supporters of the "right to die" -- after all, the independent-living movement's core beliefs -- that people should be able to make their own choices and control their own lives -- seem to be exactly the beliefs that drive right-to-die advocates.

The problem, say disability rights activists, has to do with the society in which we find ourselves -- and society's attitudes.

Life with a disability is so devalued, society is so bigoted against the idea that life with a severe disability can have quality, that in such a climate the "right to die" becomes a "duty to die." Activists fear that people who become disabled will choose suicide over living with disability. They fear that people whose disabilities make them burdens on family members will be pressured -- subtly or not so subtly -- to end their lives.

Disability studies scholar and historian Dr. Paul Longmore says that if it were legalized, "assisted suicide would be practiced within a health care system rampant with disability prejudice and discrimination," adding that people with serious disabilities report hospital staffers pressuring them to sign Do Not Resuscitate forms.

Within disability studies circles, rancorous debate broke out last summer and fall over whether such fears were realistic or overblown.

Many activists and academics who oppose physician-assisted suicide point to an article published in 2000 by disability studies scholar Carol Gill. Gill looked at attitudes of "health professionals" toward "life with a disability."

"If the attitudes of health professionals regarding life with a disability significantly influence their patients' view of disability," she wrote, "and if physicians .... play central roles in legalized assisted suicide," then their own attitudes toward disability are important.

After examining a number of studies of attitudes of health personnel to disability (detailed in her article "Health Professionals, Disability, and Assisted Suicide: An Examination of Relevant Empirical Evidence and Reply to Batavia," in the March 2000 issue of the journal Psychology, Public Policy, & Law), Gill reports her findings: in all of the studies, doctors were more negative about life with disability than were the disabled people themselves.

One study Gill looked at showed that while almost all of the spinal cord injured people in the study reported they were glad to be alive, less than one in 5 of the doctors in the study said they'd want to be alive if they themselves had spinal cord injuries. The actual numbers were 92 percent of the disabled people themselves, versus 18 percent of the "health professionals" in the study. A number of other studies she cites have similar findings.

No one has ever turned up a study in which physicians and disabled people have similar views -- always the studies report that doctors are more negative about life with a disability than the disabled person herself.

There are actually quite a few studies that discover that people with disabilities or "chronic health conditions" judge their lives to be better than the nondisabled people observing them think they are. Jacob Riis, in his own 2005 study about this in the Journal of Experimental Psychology, cites nearly a dozen.

It's not just doctors who believe that life with a disability isn't worth living. Almost everyone who's not disabled thinks being disabled is a horrid fate -- and many disabled people do, too.

In last year's Golden Globe winner, Clint Eastwood's "Million Dollar Baby," now-paralyzed boxer Maggie begs for -- and gets -- Eastwood's assistance ending her life. The film's romanticization of Maggie's assisted suicide angered many disability activists. Ed Smith's essay made a point other disabled people were making privately: "So it's what the boxer wanted, right? It's what I wanted, too, when I discovered I was paralysed in almost 90 per cent of my body," he wrote in an essay for the Canadian Broadcasting Company.

Smith continued,

I pleaded with my wife to have me shot or put down in some merciful fashion. At the time, I didn't even care if it was merciful. That was for the first two days. Now, six years later, I'm rather glad she didn't.

Actor Christopher Reeve had a similar experience. So did many people I know who have suffered from catastrophic injury. Incredibly, a preponderance of the population, even in our "enlightened" Canadian society, agrees with Jack that we're better off dead. Some years ago I did a short editorial segment for CBC radio in which I defended Robert Latimer's second-degree murder conviction for having taken the life of his multiple handicapped daughter Tracy. I disagreed strongly with those who wanted him pardoned and set free. The producers told me later that calls and e-mails were running five to one against my position. (Read essay.)

Anecdotes abound of people who, when first disabled, wanted to end their lives, only to later discover a rich and fulfilling life. It's almost a staple of the disability memoir. In his book Moving Violations, journalist John Hockenberry's reports read much like Smith's.

David Jayne, who has ALS, writes,

It is extremely easy for a healthy individual to say how they would not live. I am guilty myself. If someone had told me prior to the diagnosis that I would be totally paralyzed, fed by a feeding tube, communicate via computer with a voice synthesizer and tethered to a ventilator that I would find more meaning in life and living I am certain that person telling me such a tale was insane.

Yes, my life is very difficult and requires a lot of resources to keep me alive, human and financial. I have considered disconnecting from the ventilator several times, but the reason is never because I had lost my appreciation for life and living.

I was admitted into the hospital and scheduled for tracheotomy surgery the next morning. That night my now ex-wife told me how selfish I was for wanting to live. That my young children had suffered enough and it would cause them only more pain. It was a sickening sense of abandonment. I have absolutely no doubt if I did not have the ability to communicate my desires the surgery would have not taken place. (Read essay.)

Rhoda Olkin came to the 1996 Northern California Consensus Development Conference for Guidelines in Aid-In-Dying at Stanford University "neutral" on the issue of in physician-assisted suicide but "tending toward supporting the concept." She left at its end "a rabid supporter of Not Dead Yet."

"This transformation was not a result of persuasion by people with disabilities," she writes in the June, 2005 issue of the Journal of Disability Policy Studies, "but rather [of] being immersed in a group of educated people utterly ignorant of disability issues. Olkin, at the time a professor of clinical psychology, was only one of 5 people with any visible disabilities at a conference of nearly100 people (and she saw only 3 African-Americans in attendance, she adds).

One of the problems, she writes, had to do with the way people conflate "disability" with "terminal illness." Although Oregon's law restricts itself to people with six months or less to live, in fact, say advocates, no one can predict how long individuals have to live. And there's no guarantee, they say, that other assisted-suicide laws that are bound to follow in the wake of the Supreme Court decision will have the "six-month" caveat.

Three of the most publicized right to die cases of recent decades --Elizabeth Bouvia in California (early 1980s), Larry McAfee in Georgia and David Rivlin in Michigan -- all involved people who were referred to as "terminal" in the media but who in fact only had severe disabilities. At the conference Olkin attended, "the language that was being used to define terminal illness included phrases like 'life support'" -- which, she noted, could include people with disabilities who used respirators. But conference participants, she said, didn't seem to be making this distinction.

Olkin's mind was changed as a result. And a recent study by Carol Gill and Larry Voss found that when people with disabilities actually attended presentations both for and against legalizing physician-assisted suicide, they "tended" to change "toward opposition to legalized assisted suicide."

Public attention focuses on the hot-button issue of "physician assisted suicide" -- framed as a personal choice made by a dying person. But away from this media spotlight on the "right to die," people are almost routinely being removed from ventilators -- without their consent in a number of cases. These cases often get no attention. "Treatment decisions" to issue "do not treat" or "do not resuscitate" orders are being made by medical professionals whose views of whether someone has a decent "quality of life" or not can differ radically, studies show, from that of the person they're "treating."

A few weeks ago, many blogs were alight with the story of Tirhas Habtegiris-- an African immigrant with "terminal cancer" -- who was taken off her ventilator at Baylor Regional Medical Center in Plano, Texas, because she reportedly could not pay for her care. Many people commenting on that story were unaware that there were such things as futility policies in place not just in Texas hospitals but throughout the U.S.

Futility policies are a real and present threat to people with disabilities today -- offering concrete proof, it seems, that activists' worries are real: that life with serious disabilities and costly care is indeed considered an economic burden -- and the solution, from the healthcare system's standpoint, is death. Which is called "withdrawal of treatment" or "withholding treatment."

Conflicts between the values of physicians and the healthcare system and disabled people are already leading to decisions to withdraw treatment, or to withhold it -- even if the person wants treatment "and the physician knows this," says University of Akron psychology professor James Werth, who has published a number of articles on end-of-life issues.

To Werth, it's inconsistent -- "artificial," he calls it -- to protest the dangers of legalizing assisted suicide "and not raise red flags about actual incidents involving withholding and withdrawing treatment." Yet that's what happens, he says, "when assisted suicide is singled out as a potential danger for persons with disabilities."

The decision that treatment is "futile" is "inherently value-laden -- they are not objective medical decisions," Werth writes. A number of the studies he reports on show the "patient" and the "health care team" "in opposition -- especially if the emphasis is on perceived quality of life."

Werth cites another study: "of the eight times in which 'patients or their surrogates insisted that all treatment be continued and would not consider limiting therapy,' six had been born outside the U.S." and the 7th was African-American.

In 1995, researchers who surveyed nearly 900 physicians practicing in adult intensive care units reported that "among the physicians who withheld life-sustaining treatment on the basis of futility, 25 percent did so without the written or oral consent of the patients or their families." The study, which Werth cites, is reported in the American Journal of Respiratory and Critical Care Medicine (Vol. 151, pp 288-292).

In their amicus brief to the Supreme Court, disability groups wrote that many people now "identified as candidates for assisted suicide" would likely not seek assistance ending their lives if they could change other things. Among the things they list are "in home personal assistance," "their perceived burden on family members" and "their lack of independence and choice."

"We may spend thousands of dollars on assessing competence and little in care directed to the day-to-day life and morale of the person," said a psychiatrist quoted in an April, 2000 article in the American Journal of Psychiatry (Linda Ganzini et al., Evaluation of Competence to Consent to Assisted Suicide: Views of Forensic Psychiatrists , 157 Am. J. Psychiatry 595 (Apr. 2000)). The quote was included in the brief as well.

"The question how to address the needs that underlie the desire to die ... is typically lost," they wrote.

This same point has been made by the National Council on Disability, who this past summer reissued its "Assisted Suicide: A Disability Perspective." "Improving laws, policies, programs and services for people with disabilities ... would go a long way toward assuring that any self-assessment or decision about the quality of life of an individual with a disability would be made in an optimal context of independence, equality of opportunity, full participation, and empowerment," they wrote.

In an article in the medical Journal The Lancet (Dec. 28, 2002), researchers reported that most terminally ill people who reported having a sense of "fractured dignity," as the researchers termed it, had been put into institutions -- nursing homes. They wrote that what they'd found suggested "that the degree of autonomy and independence that can be maintained in a home setting with community based care, as opposed to care enabled by an institution, is an important mediator of one's sense of dignity." Disability groups referred to this study in their brief to the Court, adding that the researchers in the study had pointed out that " loss of dignity, and the corresponding feelings of depression and hopelessness, are 'strong predictors of desire for death and suicidal ideation.'"

The study, "Origins of the Desire for Euthanasia and Assisted Suicide in People with HIV-1 or AIDS: A Qualitative Study," reported one participant saying "I'm still inconveniencing other people who look after me and stuff like that ... No, I'd rather die." Another described himself as "a bag of potatoes to be moved from spot to spot."

One of the criticisms leveled by those who think disability rights activists are over-reacting in their worries is that they're upset without reason: no proof exists that people with disabilities are being forced to end their lives against their will.

Quite a bit of documentation exists if people dig for it. It is published in academic and medical journals. Authors of studies, and researchers on the issue, generally do not seek publicity. Right to die groups, which have managed the lion's share of publicity and who work to obtain publicity for their efforts, naturally do not publicize research that counters their position.

The most sobering research is being done not around physician-assisted suicide itself -- because it exists nowhere in the U.S. other than Oregon -- but on the medical trend to withdraw or withhold "treatment" -- and on futility policies in place in hospitals around the U.S. There are scores of studies on these issues, studies which show the very real danger the disability rights movement worries about in the legalization of physician-assisted suicide.

News media have help in fashioning coverage and analysis stories in the wake of the Supreme Court ruling. "The groups that support the Oregon law have set up Web sites with resources, which include talking points and strategies for responding to journalists' questions," writes the Poynter Institute's Al Tompkins -- and he offers a link to a special site set up by those groups specifically to respond to the ruling. Groups opposing the Oregon law have fewer links on the Poynter site -- the one link provided is to the website of Physicians for Compassionate Care.

And Poynter doesn't have a direct link at all to Not Dead Yet.

More from Ragged Edge about physician-assisted suicide:

At the foot of the steps (Edge-Centric blog)

The right to die and disability rights: an interview with Lennard Davis (Edge-Centric blog)

The 4 Ws (Edge-Centric blog)

Physician-assisted suicide is legal (Edge-Centric blog)

Unanswered Questions (Disability Rag archives)

Posted on January 18, 2006