A Story of AIDS & Living Well

As he lay dying of AIDS, my friend Michael gazed over my head in the general direction of the bathroom, managed an almost-chuckle and said, “Nahh, not yet.” This was in 1995, on a foggy gray day in San Francisco, before the discovery of protease inhibitors that would alter the course of the disease. Michael and I had sat together at a dozen similar bedsides as members of the same AIDS support group, but he knew the scene far better than I.

Michael’s sister was due in from the east coast that day. In the bathroom medicine chest were the drugs he knew could end his life in hours rather than in the days or weeks he might have left. Michael’s body had grown frail, but his mind and spirit still soared.

AIDS is a terrible way to die. So are any number of other debilitating illnesses. But many of us believe that honest discussion of prognosis, possible treatments and options are not just empowering, but sane. There is a lot of insanity loose in the land.

A study to be published in the August 15 issue of the American Journal of Respiratory and Critical Care Medicine suggests that many surrogate decision-makers actually don’t want doctors to tell them about options and potential outcomes. I say, OK, fine; don’t ask.

But for someone critically ill who wants to know, why shouldn’t physicians be allowed to tell the truth? How likely am I to regain any quality of life? While my bad cells are being destroyed, what other destruction will happen? What if I choose no treatment at all?

Throughout decades of volunteer work with hospice, AIDS and most recently Compassion and Choices (counsel and support for terminally ill, mentally competent adults) 99% of the critically ill adults I have encountered have gained both power and peace from knowing their choices. They could tell you: it is not about death, it’s about living. Dying is going to happen. Living well takes effort.

In the 1990s almost everyone I knew who had AIDS also had a stash of drugs that could bring his life to a swift end. Very few of them used those drugs. Check the Oregon statistics: far more people request life-ending drugs than ever actually use them.

It’s about safety valves. It’s about  personal choice. It’s about control of one’s own life. It’s about living well.

For anyone to oppose the piece of our complicated health reform that provides coverage for critically ill (and other) individuals to gain understanding of their conditions is irrational and unreasonable. If those opponents choose to keep their heads in the sand that’s fine with me; but why deny the rest of us the right to reason?

Michael died that night, without opening the medicine chest. He could have told you he’d had enough. He would have told you that knowing the means to end his suffering was available had given him great strength and a degree of peace for over a year. He would have told you that straight talk from his physician (who also died of AIDS a few years later) empowered and emboldened him in a remarkable battle for life.

It was never about dying; it was about living well.

4 responses

  1. Fran: Thanks for this. There’s something particularly craven, isn’t there, about an argument that takes the idea of of informed self-determination re end-of-life issues and somehow twists it into the exact opposite — this insane notion that GOVERNMENT BUREAUCRATS WILL DECIDE WHEN YOU HAVE TO DIE. Shame on anybody who pushes that ugly distortion.

  2. Amen. But watching and reading about those angry and misinformed people at town hall meetings, and the supposed leaders who are feeding their anger & misinformation, indicates how hard we’re going to have to work to inject sanity. My best efforts are in keeping communications open with my conservative friends. It’s tough these days!

  3. When you lose any fantasy of control to terminal illness, the only control you have left is when or how to end it. I agree that’s up to a patient to decide.

    I don’t envy you trying to persuade conservative friends. People insist on seeing these changes as a zero-sum game, and maybe that’s Obama’s weakness in not presenting it better or more clearly. Or not.

    • I surely don’t think Obama has handled it as well as he might have, which makes me sad because he’s our best hope. But the bills are such a mish-mash I’m not sure any presentation could pull it all together. Which of course is leaving the field open to the crazies. I’m not really trying to persuade my conservative friends of anything right now other than the wisdom of keeping a teeny opening in their minds.

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