Creating Oregon's advance directive for health care in1989 was one of the first issues I worked on in the Oregon legislature.  My role was to assure protection of people with disabilities and mental illness in "surrogate decision-making."  The bill finally passed after many, many hearings, some contentious and emotional. 

Talking about death in public, I learned, is not an easy thing.

Four years later, Disability Rights Oregon (then Oregon Advocacy Center) played a central role in drafting a bill to create an advance directive for psychiatric care.  This bill did not touch upon end-of-life decision-making, yet fears still ran high among many consumers of mental health services that an advance directive would be used to force them into treatment and institutionalization.  Many, many safeguards were put into place to allay those fears.

Since then, I've followed discussions and studies about advance directives.  In Oregon, psychiatric advance directives are hardly ever used because doctors won't accept them.  Nationally, doctors accept health care directives less than half the time.  Studies show that white, middle and upper-middle class people are far more likely to use advance directives.  One explanation is that minority and low-income individuals are less likely to trust doctors to treat them fairly and are more likely (particularly immigrants) to believe in miracle cures.

I'm sure you know where this is leading: to the present health insurance reform debate.  I'm not going to talk about the "death panel" thing.  What more can one say?  I'm more interested in the trust thing.  Why are so many people convinced that expanding health coverage through government action is a scary proposition?  Many of these folks must have had the experience of being turned down for coverage or payment by their private insurer.  Most must have had a friend or family member denied.  Why are they not upset about that?

Perhaps one answer hearkens back to those studies of advance directive usage.  Remember that minorities and low-income folks are less trusting of professionals who they feel may devalue them.  But what if the tables were turned?  What if the main proponent for changing how health decisions are funded is an African-American with a Harvard education?  Private insurance companies, in contrast, seem to have no ethnic identities or motives other than making money.  Does health insurance reform seem like just one more threat to people who are used to being in the majority but whose complacency is being eroded by increased national diversity?

People with disabilities have always been concerned that their lives are devalued by medical personnel.  The evidence to support this fear is plentiful.  In an earlier posting, I discussed the work of philosopher Peter Singer and his proposal to treat a quadriplegic's life as half as valuable as an able-bodied person's life.  (Consider the similarity with the US Constitution that originally designated slaves as 3/5 of a human being.)  The demand of any minority population is not to be judged according to standards that dismiss its equal value.  Perhaps the demand of a majority population is to retain its perceived  advantage.

Advance directives are specifically designed to give people more personal choice in how decisions are made about their health care.  But many people who came to the legislature back in the day thought that directives would do just the opposite.  In the health insurance debate, some people feel that having more choices of coverage will eventually take away their choices.  In both cases, some feel that being given a choice means that one's choice may be coerced.  They may feel that it is better to leave these decisions to some other realm.  But that is also a choice.