End-of-Life Choice, Palliative Care and Counseling

The Way We Die Nowby Sonja

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Timothy Egan
The New York Times

PORTLAND, Ore. —– 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.

Nobody was more frustrated than John Kitzhaber as the health care debate got hijacked over the summer by shouters and misinformation specialists. And no politician is more battle-scarred on this issue. He looks, at 62, still the Western man, with his jeans, his shag of gray hair, the face weathered by days spent trying to lure steelhead to the surface in the Rogue River. It has been his life work to see if at least one part of the country could join the family of nations that offers universal coverage.

With his mother’s death in 2005, Kitzhaber lived the absurdities of the present system. Medicare would pay hundreds of thousands of dollars for endless hospital procedures and tests but would not pay $18 an hour for a non-hospice care giver to come into Annabel’s home and help her through her final days.

“The fundamental problem is that one percent of the population accounts for 35 percent of health care spending,” he said. “So the big question is not how we pay for health care, but what are we buying.”

He is not, he says, in favor of pulling the plug on granny. The culture of life should be paramount, he says, following the oath he took as a doctor. But Oregon, years ahead of the rest of the country, has talked and talked and talked about this taboo topic, and they’ve voted on it as well, in several forms. They found — in line with national studies — that most people want to die at home.

In addition, Oregon was the first state to allow terminally ill patients to take medications to end their lives. The fear was, Oregon would become a death magnet, drawing suicide tourists and put itself on a slope to euthanasia. But it has not worked out that way. Since the change in the law in 1997, only about 33 people a year with terminal illnesses have ended their lives by their own hand with a doctor’s prescription.

In last year’s presidential campaign, Kitzhaber tried to make health care the top domestic issue. After the campaign, he was on the short list to become President Obama’s secretary of health and Human Services. Now he’s running, next year, for a third term for governor.

He was appalled when Sarah Palin and Senator Charles Grassley of Iowa started stoking fears of nonexistent death panels. At last, public officials were talking about death — but only to scare the elderly and win political points.

More sensible voices have since joined the debate, asking how we reform a system that lavishes most of its benefits on a cure for the “disease” of aging. President Obama has talked about squeezing billions of waste, fraud and abuse from Medicare. But he has yet to admit the obvious: those savings can only come from changing the way the system treats dying people.

About $67 billion — nearly a third of the money spent by Medicare — goes to patients in the last two years of life. The need to spend less money at the end of life “is the elephant in the room,” Evan Thomas wrote in “The Case for Killing Granny,” the cover story in last week’s Newsweek. “Everyone sees it but no one 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?”