> John Adams wrote:
>
>> This case is an issue because the part of the concern which should
>> be private--an end of life decision about an individual--has been
>> made public rather than private
>
> Not exactly - defining the end of life and how to deal with these
> matters is a very political problem. It involves technology, finance,
> and meaning-of-life issues, which are all very public concerns.
Exactly. While I agree strongly with Marta (and the great group Not Dead Yet) in reminding people of disability perspectives, I do think there are larger issues. For example there are important issues of life and personhood and all that stuff which I think I should stay out (even though I studied these issues many years ago I cannot tell you that my thoughts should have sway on you).
There are other important disability and economic perspectives being missed here though that relate to "end-of-life" care. On the disability side, I am a strong supporter of treating people in the least restrictive environment (and that includes not just setting but also the least invasive technology). While some people need feeding tubes, that certainly does not describe the majority of cases--health care providers offer feeding tubes as an economic expedient. They do not have the person-power or the trained personnel to do otherwise (but that is a choice). I don't think there is anything wrong with respecting the legal right not to use "extraordinary means" (and I want it to be clear that I am talking the long term!). I do see that as more akin to seeking independence (even if that independence fails).
This is directly relevant to disability struggles to get people out of nursing homes and institutions and into the community. Many of the people in the institutions will be "better off" in the sense their are fewer risks to their life, but that is true of all of us--we could all live in padded boxes in our basement (no internet because their are viruses!)--but thankfully we do not. I want people with disability to experience as much of life as they can. That is what is horribly wrong with Kevorkian; he wants to commodify death so he can influence decisions. He wants to reinforce the prejudice that a disabled life is to be valued less (note those who foolishly invoke Kevorkian--he had no problem assisting people who were merely diagnosed with chronic conditions--i. e., nothing was wrong with them and they had not even experienced disability and he was encouraging them to die).
Also, the Schiavo case is argued about as if it is somehow (with so many interested parties that their is a conflict) the norm for people whose end of life care is in dispute. Nothing could be further from the truth. Private insurance dramatically influences decisions be limiting care. This is the end of the story for most people--it is not a moral or legal issue--just a lot of economic pressure. People can transfer assets and get care through Medicaid but the timing is seldom so neat in real life.
Most people want to die in their home or be cared for in their home but our health care delivery system is not set up that way (both in payment and provider wishes). Hospice care is in short supply.
There was a great article in the American Journal of Geriactrics showed that "living wills" were ignored in over half of the "end-of-life". Take that legalism over all! (Most people do not know what the law entitles them too and the health care system generally controls what goes on). The primary variable in understanding where people die is NOT their wishes (written or spoken by family members!) but the availabilty of an empty bed and a willing payer. People need to be much more dramatically empowered than they are today in order for their wishes to be heard. When people are most vulnerable, the medical system is far better mobilized to maximize their interests.
Jim
"The challenge to doctors is to learn as much as possible about the scientific-technological skills of medicine, while maintaining the wisdom to integrate these skill into what are fundamentally moral and interpersonal relationships with their patients."
-John Abrahamson, M. D., *Overdosed America*