Compassion and Choices Archives - Page 3 of 3

August 12, 2009

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.

General interest

July 17, 2009

Grassroots Healthcare Reform

by Fran Johns

If we get a health reform bill, it may be thanks in part to a push from the ground up. That belief is leading to a variety of grassroots support endeavors.

At a hospital-sponsored town hall meeting on the issue this week in San Francisco attendees were invited to take the microphone to tell their stories. Probably a bad idea at any meeting, since such an invitation guarantees off-point rambles and rages and this one certainly proved the point — but there were enough horror stories to assure everyone that our current non-system is a train wreck.

A cardboard cut-out of President Obama stood at the back of the room (there was a lot of photo-op going on before things got started) and the promise was that videos of the stories would go straight to Washington to help speed passage of the hoped-for health reform bill.

Participants told of needed care that couldn’t be found, needed drugs that couldn’t be bought and the widespread suffering of the un- or under-insured. A panel of local experts presented aspects of the hoped-for national plan and spoke of San Francisco’s own moderately successful effort to provide health coverage for all.

Speakers were asked to keep their remarks to under three minutes, another dictum doomed to failure, and a few did. My own plea (one minute, forty seconds) was for inclusion of some guarantee/protection of individual choice at the end of life. It stemmed from working for many years (as I still do) with terminally ill adults who seek options including hastening their dying. It was tempered in deference to the hosts, since St. Francis is a member of Catholic Healthcare West and the opposition of the Catholic Church was largely responsible for defeat of a widely popular physician aid-in-dying bill that narrowly failed in California two years ago. And the likelihood of such a controversial issue getting into the massively complex bill we may or may not get is somewhere between slim and none, but what the heck. With Mr. Obama standing there, I couldn’t resist.

At similar gatherings around the country, I suspect the message and the messengers are much the same. Health reform is a national need that translates in millions of heartbreaking individual stories.

My personal favorite message came from panel member Catherine Dodd, PhD, RN, District Chief of Staff for Nancy Pelosi in her pre-Speaker days. Dodd explained the current three-fold status (two in the Senate and one in the House) of the healthcare bill and defended its probable cost. Then she threw out one new number: 19.7. After everyone had let 19.7 sink in, she told us that is the number of years it has taken this country, every time a health reform bill has been floated, to bring it up again. “We can’t afford another 19.7 years,” she said. I think she’s right.

General interest

July 16, 2009

Sir Edward's Choice

by Fran Johns

It is ironic that while some of us were offering mostly light-hearted comments about how we might choose to die, news circulated that Great Britain’s reknowned conductor Sir Edward Downes and his wife had just made that very real decision for themselves.

Sir Edward and his wife Joan, a ballerina before she gave up her own career in support of his and of their family, flew to a Swiss clinic sponsored by the Dignitas organization with their two grown children to end their lives together. He was 85, almost blind and losing his hearing; she was in the final stages of terminal cancer.

I strongly support the right of terminally ill, mentally comptetent adults to hasten their own death. While there is a very distinct line between hastened dying for the terminally ill and “suicide,” it would seem almost cruel to criticize Sir Edward’s choice. And the key word is choice.

What most of us would choose is precisely what Sir Edward and his wife did indeed have: a swift, peaceful end with loved ones at the bedside. Few of us would choose what actually happens too often in the U.S.: prolonged pain and indignity, often a death that follows extended, expensive, frequently futile treatment, in circumstances we would never have chosen for ourselves.

Physician aid in dying, now legal in Oregon and Washington, is one good way to put rational choice back in the hands of mentally competent adults. The Oregon law has been in effect for over a decade and has proven that such legislation works. It offers comfort and compassion and has not been abused. Efforts to extend this humane law into other states have been vigorously fought by religious groups, but end-of-life choice is just as much a right as is reproductive choice; like other individual rights, it will eventually come.

Given the enormous financial cost of the universal healthcare system most of us want, and the enormous human cost of futile end-of-life treatments and denial of physician aid to terminally ill adults, the time has come for serious dialogue about the right to die.

Sir Edward Downes left a remarkable legacy in his music. A very private man throughout his long life, he nonetheless left another admirable legacy in his poignant death. Maybe those of us over here in the colonies can learn something. Maybe we could at least honor him with a little civilized discourse.

General interest

July 15, 2009

A Novel Idea for Healthcare Reform

by Fran Johns

Not long ago I attended an event at San Francisco’s Commonwealth Club, featuring a speech by the President’s Council of Economic Advisors Chair Christina Romer. Dr. Romer’s talk, “The Great Credit Freeze and the U.S. Economy,” was all about improving healthcare while slowing down the growth of its cost. We know we can’t reduce costs, she said; what we hope to do is reduce the rate of increase. And one way to contain healthcare costs might be to find out what the patient wants. Imagine.

This observation was not in direct response to a question, but could well have been. Dr. Romer was asked, by more than one audience member, about how to address excessive expenditures at the beginning and end of life. A grossly disproportionate share of costs, she conceded, “are spent on the last six months of life. And one thing we’re not doing enough of is letting patients express what they want.”

If the issue were not so grim and sorrowful it would call for a “Well, duh.”

It would be hard to find many people saying they’d like their last few days on this planet to be spent semi-conscious or in pain and distress, hooked up to a tangle of wires and tubes in a blue-lit hospital room (see Scott Bowen’s post 7/14.) But this is in fact the system we have created: we focus on prolongation of life without regard to quality, we aid and abet doctors who equate death with failure, we never talk about our own mortality as if in silence we can become immortal. Most of us would choose to die at home , properly medicated for pain and surrounded by our loved ones; most of us will die in an institution

Audience members had a wide assortment of questions, and Dr. Romer had plenty more to say. But finding out what the patient wants, and acting accordingly, is surely one excellent path towards better care – and even contained cost growth — and everyone in America could begin that process today.

It is an easy solution, even if only a small, partial solution, to this piece of the muddled medi-puzzle of our healthcare system: talk. Tell your doctors, caregivers, loved ones what you do or don’t want. Write it down. Use the forms universally available (Advance Directives, POLST, others.) You might even wind up with what you actually want in your final days. Christina Romer is on your side.