Health Care Reform Hysteria – and My Own Version of Reality

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, 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

4 thoughts on “Health Care Reform Hysteria – and My Own Version of Reality

  1. As a long time single payer advocate, I am concerned that older and disabled people sometimes face pressure to forego medical treatment, while the insurance industry and pharmacutical companies continue to waste health care dollars on marketing, excessive salaries and administrative costs and profits. When will the priority for health care dollars be providing health care to people? Industry advocacy against the “public option” is offensive.–Diane Coleman, JD, President, Not Dead Yet

  2. Well, the easy way to handle this would be for everyone to convert to Catholicism. No pressure. I’m just saying…

    Meanwhile, I suggest that we stop talking about “advance directives” and instead use the term “prior medical decisions declaration.” The connotation of these seemingly identical phrases is that “advance directives” or “living wills” give doctors permission to commit murder under certain circumstances, and that “prior medical decisions declarations” are specifically for people opposed to medical murder, and who demand to be seen as fully human under all circumstances.

    Personally, I think “advance directives” are not about medical murder to the same degree that Obama is sincerely concerned about lessing the number of abortions in the world, i.e. not one damn bit.

  3. Diane Coleman’s comment is to the point. I appreciate the history
    from Stephen Drake, as I’m only online about 20 months (more or less). When more ill than I am,
    same illness, I was completely
    “out of the loop”. That factor,
    people who are so ill they are not
    completely informed, is a real issue. Even if someone has a reasonably informed caregiver.
    I’ve had a health “directive” for
    years, but wonder if I’d change my mind on any of it. (I’d like some
    data, doubt if possible, on how often advance health care directives, living wills, etc.
    are ignored by the medical “profession”.) And who knows
    how often people are coerced? No doubt, often. With or without directives. Caution is always good.

  4. Thank you for intelligent contribution to the discussion. As a supporter of the latest incarnation of health industry reform (the best phraseology I can think of) there has been an incredible lack of focus and inattention to framing and language (something that the previous administration excelled at). If they had had advocates for the disabled, such as yourself, at the table some missteps might have been avoided. As a disabled person (MS) and a caregiver for my 88 y.o. mother with Alzheimer’s, I’m very sensitive to these issues, and I’m very offended when this issue is demagogued for political advantage, or especially when I sense that it’s to feather the nest of an insurance company executive.

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