National Healthcare Decisions Day: Count Me Out

In case you missed it, today is National Healthcare Decisions Day (NHDD). We’re all invited to “join Americans across the country to talk to others about your future healthcare decisions and to complete your advance directive!”

We’ll pass, at least when it comes to joining with the coalition promoting this effort.

If you check the NHDD’s list of particpants, you’ll find that the only disability-related organization included is the Judge David L. Bazelon Center for Mental Health Law. (I can’t say for sure how the Bazelon Center got involved, but I know that many of our friends and allies in the psych survivor movement favor the use of advance directives to limit or prohibit forced treatment if they are deemed incompetent – a worthy cause.)

The simple fact is, we’ve spoken to some of the major players in NHDD over the past two years in token, essentially dead-end discussions over bioethics, disability and advance directives. Specifically, these organizations include National Hospice and Palliative Care Organization, Center for Practical Bioethics and The Hastings Center.

Apparently, our complaints about the exclusion of disability advocates from the health policy discussions involving our lives made it obvious that some minimal level of involvement was needed to negate the charge of exclusion. When it comes to the topics of “advance directives” and “end of life” care, the exclusion was deliberate, absolute and longstanding.

So what were the kinds of discussions/projects we were invited to, along with other disability advocates?

• A discussion of disability ethics issues that couldn’t be further discussed, shared or disclosed with anyone – at least not by us;
• Participation in a “workgroup” tinkering with deficits in “advance directive” literature in which relatively little input from disability advocates looks like it made it anywhere.

In the meantime, we’ve been invited to “participate” in the “social marketing” of advance directives. Frankly, we have a problem with going full bore with the “social marketing” of a product that was devised by a relatively narrow range of professionals.

There are many problems with the marketing and the promotion of advance directives right now, but I’ll focus on two:

• There is no warning to the public that advance directives might not be of any use at all if physicians don’t agree with your choices. Under the ever-increasing influence of “futile care” policies, physicians and hospitals may deny you life-saving treatment even if your advance directive calls for it and your health-care proxy demands it. At least part of the reason this “elephant in the living room” isn’t addressed may be that many of the medical organizations participating in NHDD support “futile care” policies.
• In discussions with disability advocates, advance directives are described as a way to state what you do want in the way of treatment as well as what you don’t want. And, in all fairness, some of the forms being used provide space for those options of desired treatments. However, the long-term focus on – and usage of – the problematical term “end of life,” has resulted in “advance directives” being framed as an “end of life” issue, as can be seen in the “facts” section of the NHDD website. On this page, you’ll see that the discussion quickly leaps from “advance directives” to “end of life” issues. This inevitably encourages most people to think about “advance directives” as being about ending their lives, rather than making a clear statement of “treatment preferences.”

So forgive us if we don’t join the current effort. We do think it’s best to make sure you pick someone you trust to make decisions on your behalf should you need that while in the hands of the medical system. We just don’t want to sign onto this flawed effort and product.

And while it’s true that we can’t complain of total exclusion right now, we’re a long way away from inclusion. A couple of token efforts don’t come near to making up for the years and years of excluding disability advocates from the public policy discussion table.

So we’ll pass on being part of this parade. –Stephen Drake