Forbes: Article on “end of life” provisions in House health care bill quotes Diane Coleman and Marilyn Golden

Today, Forbes.com published an article by David Whelan entitled “ObamaCare Dives Into End-Of-Life Debate.”

Lead sentence:

Buried halfway through the current version of “America’s Affordable Health Choices Act,” the House version of ObamaCare, is a set of proposals pertaining to end-of-life care.

What follows is a pretty balanced and nonhysterical look at what is in the bill and what people are saying about it. The whole article is worth reading, but I want to share the closing paragraphs, devoted to comments from Marilyn Golden of DREDF and Diane Coleman of NDY:

Still, some activist groups that are not necessarily opposed to ObamaCare are concerned about the end-of-life proposals in the bill. Marilyn Golden, of the Disability Rights Education and Defense Fund in Berkeley, Calif., has been active in opposing physician-assisted suicide at the state level. Many disabled people worry legalizing suicide would lead to euthanasia.

Golden points out that many doctors, when counseling patients, push for do-not-resuscitate orders or have them sign boilerplate documents that can lead to the premature denial of lifesaving medical care. “I don’t want to say we’re opposed to the language in the bill,” she says. “But there are legitimate concerns about how advanced directives are administered.”

“There is reason to be concerned,” says Diane Coleman, of Not Dead Yet, a group in Rochester, N.Y., that opposes physician-assisted suicide and what it calls medical killing. “The disability community,” she says, “often experiences pressure to sign treatment-withholding orders.”

She cites a case of a woman who works in her building who became a quadriplegic 11 years ago. Her physicians encouraged her family to remove life support while she was on a ventilator for five months, even though she was improving and eventually recovered to the point where she could live independently with a wheelchair.

Those concerned about unwittingly getting the plug pulled are advised to make it very clear to all their medical providers that they do not have a “DNR,” and that if they stop breathing or their heart stops they want to be revived.

“Society does devalue older and disabled people,” Coleman says. “And the medical profession is not always very accountable.”

There is a “comments” section for the article, so please check out the whole article and leave a comment. –Stephen Drake

Peter Singer in the NY Times: Disabled Lives Worth Less, Hypothetically

The New York Times, which seems to be absolutely enthralled with Peter Singer, has a long essay written by him in its magazine section right now – and which will be in Sunday’s edition.

Titled “Why We Must Ration Health Care,” it’s a complex discussion of public policy and health care drawing on a multitude of facts, statistics, surveys and studies.

Complex, that is, until he gets to a certain segment of the population. Then he relies solely on the “hypothetical.” That segment of the population would be people with disabilities, of course:

Health care does more than save lives: it also reduces pain and suffering. How can we compare saving a person’s life with, say, making it possible for someone who was confined to bed to return to an active life? We can elicit people’s values on that too. One common method is to describe medical conditions to people — let’s say being a quadriplegic — and tell them that they can choose between 10 years in that condition or some smaller number of years without it. If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.) If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar.

For Singer, this is a typical maneuver when promoting the devaluation of people with disabilities. He doesn’t bother to use any empirical base for his assertions, and he probably figures he won’t need to. For one thing, he can pretty much count on the prejudices of the nondisabled readership of the paper to take what he’s said here as objective. Second, since people have imperfect memories, many readers are likely to remember his “hypothetical figures” as facts – since so much of the analysis is based on using some sort of informational source (even individual stories are an information source and a source Singer favors).

After asserting that value-based formulas (or rather formulas that devalue PWDs) must form the basis for allocation of health care resources, Singer continues:

Some will object that this discriminates against people with disabilities. If we return to the hypothetical assumption that a year with quadriplegia is valued at only half as much as a year without it, then a treatment that extends the lives of people without disabilities will be seen as providing twice the value of one that extends, for a similar period, the lives of quadriplegics. That clashes with the idea that all human lives are of equal value. The problem, however, does not lie with the concept of the quality-adjusted life-year, but with the judgment that, if faced with 10 years as a quadriplegic, one would prefer a shorter lifespan without a disability. Disability advocates might argue that such judgments, made by people without disabilities, merely reflect the ignorance and prejudice of people without disabilities when they think about people with disabilities. We should, they will very reasonably say, ask quadriplegics themselves to evaluate life with quadriplegia. If we do that, and we find that quadriplegics would not give up even one year of life as a quadriplegic in order to have their disability cured, then the QALY method does not justify giving preference to procedures that extend the lives of people without disabilities over procedures that extend the lives of people with disabilities.

This alleged interest Singer puts forth in soliciting the evaluations of quadriplegics isn’t something I take too seriously. He’s spent enough time in the field to know that there are plenty of medical professionals who are operating on the assumption that life with a significant disability isn’t worth living – and acting on those assumptions. Just ask Terrie Lincoln and Baroness Jane Campell.

Singer finishes his assault on people with disabilities with the following:

If life with quadriplegia is as good as life without it, there is no health benefit to be gained by curing it. That implication, no doubt, would have been vigorously rejected by someone like Christopher Reeve, who, after being paralyzed in an accident, campaigned for more research into ways of overcoming spinal-cord injuries. Disability advocates, it seems, are forced to choose between insisting that extending their lives is just as important as extending the lives of people without disabilities, and seeking public support for research into a cure for their condition.

This is nothing less than a deliberate dumbing-down of the issues surrounding medical research and disability. First, there are disability advocates who say they are concerned with the way “cure” research is pitched to the public – concerned with the way in which medical research is seen as more important than including and accommodating the people with disabilities that are trying to live their lives. There’s no excuse for this misrepresentation – Singer made much of his assocation with Harriet Johnson, who was proud of her participation in Jerry’s Orphans – a group of people with disabilities who regularly protest that cure-oriented fundraising event. Most recently, self-advocates who have autism have joined the list of people saying they aren’t interested in a cure.

Most people with disabilities don’t think too much about “cures,” but many would approach any “cure” with some careful apprehension: What are the benefits? What are the risks?

Again, typically for Singer, what he’s saying is this: If we’re going to debate or discuss the positions of disability advocates, then these terms that I’ve laid out are the ones that we’re going to use.

If that sounds like Pat Buchanan laying out the terms for a discussion of racial discrimination, you’d be right. As a white male, Buchanan is representative of the type of cultural conservative who demands to lay out the terms for discussing racial discrimination and injustices in this country. As a regular watcher of MSNBC in the morning before work, I get to see him do his schtick on a regular basis.

While Buchanan and Singer may not agree on other issues, their tactics for dealing with debate have some similarities. –Stephen Drake

UK: New Swiss Suicide Tourist Case – Double Suicide

I’ll say something that others are probably too polite to say:

Pro-euthanasia advocates in the UK have got to be very very grateful to the children of Sir Richard Downes and his wife Joan. Why? They went public with the story that they accompanied the couple to Switzerland for a double suicide – and chased the story of Jane Campbell’s “near death” experience with doctors out of the media spotlight.

Notably, Jane Campbell’s story was limited to coverage by the UK media. The story of Downes and his wife, though, is international news – as evidenced by coverage in the NY Times:

Attempting suicide has not been a criminal offense in Britain since 1961, but assisting others to kill themselves is. But since the Zurich clinic run by Dignitas was established in 1998 under Swiss laws that allow clinics to provide lethal drugs, British authorities have effectively turned a blind eye to Britons who go there to die.

None of the family members and friends who have accompanied the 117 people living in Britain who have traveled to the Zurich clinic for help in ending their lives have been charged with an offense. Legal experts said it was unlikely that that would change in the Downes case.

But British news reports about the Downeses’ suicides noted one factor that appeared to set the case apart from others involving the Dignitas clinic: Sir Edward appeared not to have been terminally ill. There have been at least three other cases similar to the Downeses’, in which a spouse who was not terminally ill chose to die with the other.

Note – the reporter has his facts hopelessly mangled here. There have been a significant number of people getting “assistance” to commit suicide in Switzerland. So there’s really nothing that “sets this case apart.”

Friend and colleague Gary Presley has posted his thoughts at the blog on his website and also at Seven Wheelchairs. This is a direct link to his post.

Excerpt:

And I understand the reaction of euthanasia advocates. Downes’ choice takes the argument for assisted suicide to the ultimate, far past their dream that euthanasia be incorporated into the dynamic of medical treatment.

Read the rest here. –Stephen Drake

UK: Our Time To Die? A satirical look at media coverage of assisted suicide

Originally made for the Society for Disability Studies (SDS) Conference, 2009, this film by Liz Carr and Katherine Araniello, is a satirical look at the media coverage of assisted suicide in the UK. While folks in the UK or people who follow this topic will be able to identify the specific video clips most readily, the message is clear to anyone, I think.

Great video – features, among other things, excerpts of “Euthanasia Blues” by Norm Kunc and Emma Van der Klift.