Health Care Reform Hysteria – and My Own Version of Reality

"end of life", advance directives, Our News & Commentary Blog, policy, politics, reality check

As readers of this blog might remember, last May I was confronted by a representative of Lyndon LaRouche’s organization at an anti-euthanasia conference. I felt compelled to address his rather shrill attack on what he termed Obama’s “Hitler Health Care” from the podium and followed up the next day.

Since then, it seems a lot of folks are taking their lead from Lyndon LaRouche. I’ve grown tired of reading and deleting the references to Nazis and Hitler in emails and blog entries from right-wing opponents of the Obama administration – and of any kind of health care reform.

Backing off from the extreme fringe have been the accusations that certain proposals regarding the funding of counseling sessions for advance directives are actually a form of stealth euthanasia aimed at the elderly population. According to factcheck.org, the claims are demonstrably false.

Nevertheless, the continued the alarm about the promotion of advance directives seems to be reaching a bigger part of the population than those inclined to believe the worst about anything coming out of the Obama administration and a Congress controlled by members of the Democratic party.

Frankly, I think part of the reason that the public is nervous about the pitch on advance directives is that they’ve been promoted in a way that encourages mistrust.

To be fair, the first person I read to express alarm at one of the ways in which “end of life care” gets promoted was from Donald Gibson, writing in the journal Mental Retardation 25 years ago. Here is an excerpt from the article, which I used in an essay I wrote several years ago:

A careful examination of the hospice movement reveals the following. First, justifications for the hospice program are similar to those offered for non-treatment or active euthanasia of the individuals with mental retardation. Generally, these justifications are based on “quality of life” and economic cost considerations. Second, hospices may become the basis upon which a national death establishment is to be constructed. Third, the rejection of medicine’s obligation to preserve life which is contained in the hospice literature and the tendency in the hospice movement to broaden the categories of people eligible for “care” suggest the possibility that hospice programs might be used for people with mental retardation who are denied medical treatment.

Some of what Gibson predicted has come to pass. We’ve seen court cases in both Pennsylvania and Wisconsin that were fought to reinforce the protections for people with intellectual disabilities – after one or more persons had been denied lifesaving care even though they weren’t terminally ill.

Most of the concern, though, is about the growing population of elderly people. And that’s where the marketing of advance directives becomes a problem for the Obama administration and Congress.

Over the past decade, advocates of advance directives and “end of life” care have increasingly touted advance directives in terms of expected savings of health care resources. So, on the one hand, the public is being told to fill out an advance directive as an exercise in autonomy while on the other hand, policymakers are being told that an advance directive results in less money spent during someone’s final months of life.

For many of us, that raises a red flag, or at least a yellow flag of caution. I don’t think that most of us think that the insurance companies, medical organizations, hospitals or the government value our autonomy that much. If they do, they’re certainly good at keeping it secret.

Guess what? Touting advance directives as a way of reining in health care costs makes a lot of people nervous – even suspicious – about filling them out. If this comes as a surprise to the ethicists, medical professionals, policy wonks and legislators it just goes to show that they’re not as smart as they think they are.

As to health care reform itself and what it will mean for people with disabilities…

For years, we’ve been finding ourselves fighting the advance of “futile care” policies and health care policies that threaten our health and safety. Personally, I expect those trends to continue. We’ll be fighting those fights no matter which political party is in power or whether or not we get health care reform.

In the meantime, it might be nice if fewer people were excluded from affordable access to medical care. –Stephen Drake

Update: (NYS) Chemung County Attorney Withdraws Request to Remove Gary Harvey’s Feeding Tube

life-ending decisions, litigation, neglect, Our News & Commentary Blog, Surrogate Decisions & Guardianship

Earlier this month, I shared the story of the fight to save the life of Gary E. Harvey. His wife, Sara, has been in a battle with the Chemung County Attorney over guardianship and an imminent threat to have her husband’s feeding tube removed.

There is some good news to report, although the fight is hardly over. From the Corning Leader:

Elmira, N.Y. – A comatose Chemung County man at the center of a legal battle over his medical condition will not have his feeding tube removed.

A request by the Chemung County Attorney’s Office to remove Gary Harvey’s total-parenteral-nutrition (TPN) tube was formally dismissed Monday.

The county Attorney’s Office filed the motion to remove the feeding tube in early June but informed state Supreme Court Judge Judith O’Shea late last month it was withdrawing the request, according to a letter from Assistant County Attorney Donald Thomson.

In early June, the St. Joseph’s Hospital Ethics Committee recommended the removal of Harvey’s feeding tube because it was no longer a viable source of nutrition and was causing fungal septicemia, according to an affidavit completed by Rita Gould, the supervisor of Adult Services for the Chemung County Department of Social Services.

Fungal septicemia is an infection that in Harvey was located where the feeding tube was inserted.

Later in June, however, the infection began responding to treatment, and the county withdrew its application to remove the feeding tube.

Harvey’s case is still far from over, said his wife, Sara Harvey, who called Monday “a big victory.”

Remaining open is the issue of a do-not-resuscitate (DNR) order. According to Thomson’s letter, a DNR order has been issued in the case.

As the article indicates, this doesn’t end the struggle. Ultimately, Sara wants to have her husband home where he can be supported and cared for.

There’s more to the article – Sara invites people to leave comments on the article on the newspaper site. –Stephen Drake

Time Magazine: Nancy Gibbs Voices Concerns Over Assisted Suicide

assisted suicide, euthanasia, final exit network, media coverage, Netherlands, Our News & Commentary Blog, Time magazine

(note: for a variety of reasons, the comments have backed up in the moderation queue. I plan on posting backlogged comments tomorrow, with replies.)

The new issue of Time Magazine has an interesting essay by Nancy Gibbs, who is a pretty mainstream journalist. What makes this interesting is that she has taken a look at recent developments on the assisted suicide front, and she’s uneasy with what she sees and what more may be coming.

Here is an excerpt from “Going Too Far with Assisted Suicide?“:

We allow for the removal of feeding tubes, the withdrawal of respirators, the replacement of aggressive treatment with palliative care; these can all be wise and merciful choices. But each step forward gets a little more slippery. Is there some point, visible in the cloudy moral distance, where the right to die becomes a duty to die? We don’t need to set Grandma adrift on her ice floe; the pressures would be subtle, wrapped in the language of reason and romance — the bereaved widower who sees no reason to try to start over, the quadriplegic rugby player whose memories paralyze his hopes, the chronically ill mother who wants to set her children free. Already in Oregon, one-third of those who chose assisted suicide last year cited the burden on their families and caregivers as a reason. A study in the Netherlands found that one in four doctors said they had killed patients without an explicit request–including one doctor who believed that a dying Dutch nun was prevented from requesting euthanasia because of her religion, so he felt the just and merciful thing to do was to decide for her.

There are problems with her analysis. For one thing, she is simply wrong when she implies the Netherlands eligibility for euthanasia is to be “suffering intolerable pain.” In fact, the key term in the Netherlands has always been the fuzzy and expansive term “suffering,” which has enabled expansion of eligibility for euthanasia over the years.

She might have been even more concerned about recent developments if her own magazine hadn’t completely mangled and misreported the basic facts surrounding the Final Exit Network.

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

"end of life", advance directives, diane coleman, legislation, Marilyn Golden, media coverage, Our News & Commentary Blog

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