Life, love and palliative care

My greatly beloved sister Jane died this morning, a peaceful end to 84 years of a life extraordinarily well lived. For a few days she had been on palliative care.

Palliative care. File that term away for yourself, your parents, your friends and family. It’s the new best thing, even though for centuries it was the old best thing: keep me comfortable and let life come full circle. For centuries we believed that life was a cycle: birth, Stuff, death. Some people’s stuff was better than others, but there was a general agreement that death happened, so it made sense to ease it along when the time came. Usually it didn’t take long. Often, if ease was not to be had, the family doctor invited everyone in briefly to say goodbye, closed the door and administered a shot of morphine.

Then we invented chemotherapy and ventilators and feeding tubes and miracle drugs and adopted the national attitude that one is supposed to live forever. Plus, we invented lawsuits. So dying turned into something horrid and often painful, something one is really not supposed to do. Physician aid-in-dying for the terminally ill became illegal; even talking about it gave Sarah Palin the death panel willies.

My sister Jane was a gifted artist who told me, a few days before she died, that she’d reached the apex of her career because one of her recent paintings was stolen from a show currently on view. (She was also delighted that others were selling well.) She was a remarkable mother, hostess, book-lover, friend, and about the world’s best big sister. The day after our last conversation she had respiratory failure (quit smoking, please, if you haven’t already) and began to die.

Jane was briefly on a ventilator, which I hated as much as she, but one does what needs to be done. Very quickly she moved from that to palliative care. Her husband, four daughters and assorted grandchildren gathered around to sing songs, hold hands, administer foot rubs, report to her remaining two sisters and innumerable friends that all was well.

This is not an argument against miracle drugs or aggressive interventions when appropriate, or even against feeding tubes and ventilators — although if you catch my children approving such things after I conk my head on the curb please remind them of my explicit instructions to the contrary. But it is an argument to confront mortality, complete your advance directives, talk to family and friends about your own wishes no matter how young and immortal you feel yourself to be, support compassionate and humane dying. Advocating for decent health care for the living wouldn’t be a bad way to start.

Palliative care is a valuable new/old thing. So are big sisters like Jane, although they are hard to come by.

Boomers & the high cost of dying

As health reform slogs along, a few critical pieces are already gone for good — or for now, at least. One of the saddest is coverage for end-of-life conversations; one of the saddest elements of our culture in general and healthcare mish-mash in particular is the tendency to treat death as a curable disease. Timothy Egan, in a recent blog for the New York Times, makes an eloquent case for injecting a little reality into all this.

In the last days of her life, Annabel Kitzhaber had a decision to make: she could be the tissue-skinned woman in the hospital with the tubes and the needles, the meds and smells and the squawk of television. Or she could go home and finish the love story with the man she’d been married to for 65 years.

Her husband was a soldier who had fought through Europe with Patton’s army. And as he aged, his son would call him on D-Day and thank him – for saving the world from the Nazis, for bequeathing his generation with a relatively easy time.

That son, John Kitzhaber, knew exactly what his mother’s decision meant. He was not only a governor, a Democrat who served two terms in Oregon as it tried to show the world that a state could give health care to most of its citizens, but a doctor himself.

At age 88, with a weak heart, and tests that showed she most likely had cancer, Annabel chose to go home, walking away from the medical-industrial complex.

“The whole focus had been centered on her illness and her aging,” said Kitzhaber. “But both she and my father let go that part of their lives that they could not control and instead began to focus on what they could control: the joys and blessings of their marriage.”

She died at home, four months after the decision, surrounded by those she loved. Her husband died eight months later.

The story of Annabel and Albert Kitzhaber is no more remarkable than a grove of ancient maple trees blushing gold in the early autumn, a moment in a life cycle. But for reasons both cynical and clinical, the American political debate on health care treats end-of-life care like a contagion — an unspeakable one at that.

Kitzhaber, having seen the absurdities of the system — Medicare would pay hundreds of thousands for continuing treatments but not $18 an hour for an in-home caregiver to help her die as she chose — was among the thousands of us who were distressed to see the debate get sidetracked by misinformation and outright lies. He knows the truth: that changing the way we treat dying people is the only way real economies and compassionate reform will happen. He is not only a politician, currently running for a third term as governor of Oregon, the state that has shown us the way, but a physician. And he’s smack in the middle of the Baby Boomer generation. Egan cites the recent Newsweek cover article by Evan Thomas, “The Case for Killing Granny,” and its on-target line about this being the elephant in the room, “Everybody sees it, but nobody wants to talk about it.

John Kitzhaber, M.D., politician, and son who watched both parents die in a dignified way, cannot stop talking about it. His parents’ generation won the war, built the interstate highway system, cured polio, eradicated smallpox and created the two greatest social programs of the 20th century — Social Security and Medicare.

Now the baton has been passed to the Baby Boomers. But the hour is late, Kitzhaber says, with no answer to a pressing generational question: “What is our legacy?”

The Way We Die Now – Timothy Egan Blog – NYTimes.com.

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.