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.

Ethical dilemmas for one and all

In case you don’t have enough medical/political/ethical dilemmas on your plate, William Saletan tossed out a hefty bunch, in last Sunday’s New York Times Book Review, to chew on:

The most powerful revolutions of our age aren’t happening in Washington, the Muslim world or the global economy. They’re happening in science and technology. At a pace our ancestors couldn’t have imagined, we’re decoding, replicating and transforming the human body. These revolutions are changing how we live, what we think and who we are.

Bodies used to be unalterably separate. Yours was yours; mine was mine. That isn’t true anymore. Organ transplantation has made human parts interchangeable. Thanks to aging and obesity, global demand for kidneys and liver tissue is increasing. Meanwhile, anti-rejection drugs and other innovations have turned more and more of us into potential donors. But supply isn’t keeping up with demand, so doctors, patients and governments are becoming more aggressive. Death is being declared more quickly so organs can be harvested. Rich people are buying kidneys from poor people. Governments are trying financial inducements to encourage donation. The latest proposals, outlined in Sally Satel’s “When Altruism Isn’t Enough: The Case for Compensating Kidney Donors” (2008), include tax credits, tuition vouchers and cash. As pressure grows from the left through socialized medicine, and from the right through free markets, organs will increasingly be treated either as a commodity or as a community resource.

The one that catches my eye (see Looking at One’s Own End-of-Life Choices, 7/30; Palliative Care: Rush Limbaugh vs the Grannies, 7/24, and a slew of other recent posts) is confronted in a reasonable, head-on fashion.

Beyond transplantation and mechanization looms the broader question of longevity. Over the last half-century, the age a 65-year-old American could expect to reach has increased by one year per decade. In 1960, it was 79. Today, it’s 84. Life expectancy at birth has passed 78 in the United States and 83 in Japan. We have no idea where these trends will end. It’s been just six years since we decoded the first human genome and less than two years since we learned how to make adult cells embryonic.

The cost of caring for old people will be enormous, but that’s just the beginning. We’re fixing and replacing worn-out body parts for older and older patients. How much life do we owe them?

The long-run solution, outlined by Robert N. Butler in “The Longevity Revolution” (2008), is to treat longer life as a resource, not just a goal. That means exploiting its benefits, like wisdom and equanimity, while focusing medicine and lifestyle changes on extending health and productivity rather than dragging out the last bedridden months.

It is well past time for us to stop looking at prolongation of life, regardless of quality, as the be-all-and-end-all of health care. Religious groups, right-wing factions and assorted others are screaming that even coverage of honest conversation with one’s physician about prognosis, treatment and options is going to shove people into early graves. But conversations of such sort, and civil discourse in general, are desperately needed.

OK, according to the above statistics this writer still has eight years before my projected demise; but I am definitely one of the grannies Mr. Limbaugh and his ilk profess to be protecting. Thanks very much; rather than drawn-out bed-ridden months I will take wisdom and equanimity any day, if our health care reformists will please focus on addressing health and productivity for all ages. Problem is, the voices of “protection” are drowning out the voices of reason. Which makes this not just a dilemma but a potential national tragedy.

Crossroads – You – The Updated Owner’s Manual – NYTimes.com.

Palliative Care: Rush Limbaugh vs the Grannies

The patient was in four-point restraint, which means his hands and feet were tied to the bed. He was shouting over and over, in Spanish, “Help me!” but no help came. Until Diane Meier happened upon the scene.

The back story, she learned, was that the man had end-stage cancer for which he had declined treatment. After he fell at home, his adult children had found him on the floor and called 911, landing him back in the hospital. There, among other interventions that were put into play, a feeding tube had been inserted through his nose. When he repeatedly pulled it out, his hands were tied. After he then pulled it out three times with his knees, his feet were tied. You could say these treatments were being performed over the patient’s not-quite-dead-body.

“Why,” Dr. Meier asked, “is it important to have the feeding tube?” The attending physicians answered, “Because if we don’t, he’ll die.”

It was at this point that Diane Meier, M.D., F.A.C.P., already honored for her work in geriatrics and for her personal and medical skills, became a crusader for palliative care. “A light bulb went off,” she told a group of physicians and other professionals in the field today in San Francisco. “I realized it was an educational problem, and thus a solvable problem.” She saw that the doctors and nurses were only doing as they had been taught, and the results were distressing also to many of them. “All I did was say ‘It’s all right to care about your patient.'”

Meier’s pioneering efforts to shift care of critically ill patients from aggressive, often futile treatment to comfort care focusing on the patient instead led to formation of the Center to Advance Palliative Care, which she currently serves as Director. They also resulted in a MacArthur Fellowship she was awarded in September, 2008.

“The MacArthur,” says the self-effacing physician, “was in recognition of the tens of thousands of people working in palliative care.” But those tens of thousands are not enough to have eliminated the tragedies of patients such as the unfortunate man cited above. Walk the halls of almost any hospital, nursing home or similar institution in the U.S. and you will hear the incessant “Help me!” cries of people being treated over their almost-dead bodies.

Helping them with comfort care rather than aggressive treatment, though, is referred to by the Rush Limbaughs of the world as “Killing off the grannies.” It is a handy sound bite, and it is tilting the balance against sanity in our lurch toward health reform. Unless Mr. Limbaugh can convince me I’d rather be 4-point-restrained with a tube inserted in my nose than gently treated with comfort care when I encounter my next critical illness, this particular grannie would appreciate his butting out of my rights. Palliative care should be a right.

It is, unfortunately, a campaign of the political right to keep palliative care out of health reform. They will prevail, Dr. Meier said, unless voices of sanity are raised, whether Democrat or Republican. She urged her audience, representative of a wide variety of compassionate groups, to help get the message out and get the calls, e-mails and letters in. Legislators behind the three bills working their way through Congress, she said, need to hear from the citizenry.

The citizenry is unquestionably in favor of comfort, and where palliative care can be understood it is welcomed. Hosting Dr. Meier’s informal talk were the California HealthCare Foundation, the California Coalition for Compassionate Care, Archstone Foundation and the University of California, San Francisco, four of many organizations committed to making palliative care understood, available and effective.

The question of whether they or Rush Limbaugh will prevail is as yet unanswered. Having Mr. Limbaugh forming our health policy, though, is almost as scary to this granny as 4-point restraint.

A Novel Idea for Healthcare Reform

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.

On Getting Started, and Re-started…

Front pages of the two east coast newspapers that arrive on our west coast doorstep every morning featured references to a few of the primary issues this column proposes to address: staying active and upbeat while confronting one’s mortality; the multiplicity of housing shifts in late generations; and whether one’s life experiences lead to rigidity or understanding.

 

Even the front page of today’s True/Slant, in Scott Bowen’s innovative take on Boston Globe books and publishing writer David Mehegan’s Over and Out, takes up the end-of-life choices question which has consumed much of my time and energies over the past decade and which I tackled (albeit anecdotally) in a 1999 book, Dying Unafraid.

 

Now. If life experience can be applied to mastery of T/S’s technological tools – which are not, after all, quite so daunting as the above – it will be great joy for Boomers &Beyond to explore these through headline grabs, riffs and commentaries and perhaps some lively reader responses. Stay tuned.