End-of-Life Shows Signs of Life in Congress
End-of-life care and planning is something we’re passionate about here at GHG, and I’ve gotten in some trouble over the last couple years in arguing Sarah Palin’s “death panels” distortion set the debate back a decade. I may have been too pessimistic, or over-estimated the former half-term Alaska governor’s influence: end-of-life planning is showing signs of life in Congress. Politico had a great story out profiling Rep. Earl Blumenauer (D-OR) and his bipartisan crusade on the issue, reprinted in full below.
The ‘death panel’ bill lives
By Joanne Kenen | 7/21/13 4:00 PM EDT
Rep. Earl Blumenauer wants Congress to talk about death.
Much of Congress would rather walk over hot coals.
The bow-tied, bike-riding Oregon liberal was the author of the 2009 bill aimed at encouraging doctors and physicians to talk to patients about what kind of care they want near the end of life. It notoriously became known as the “death panel.”
The bill is back. Or rather, it’s never gone away.
Each Congress, Blumenauer reintroduces it. He’s even added a few new elements, for instance to make sure that care preferences are incorporated into electronic medical records, not stuffed in someone’s bedside table. He’s picked up 15 co-sponsors, including a few Republicans. Among them is Rep. Phil Roe (R-Tenn.), an outspoken member of the conservative House GOP doctors caucus, which helps drive an unwavering opposition to Obamacare.
Since the heated “death panel” days, Blumenauer’s “made it less radioactive,” Jon Keyserling, senior vice president and health policy director of the National Hospice and Palliative Care Organization, said of the congressman’s persistence.
But “less radioactive” isn’t a glide path to passage, particularly not in a highly partisan Congress with Obamacare still rolling out amidst charges and countercharges about rationing, care quality and Big Government intrusion.
Blumenauer talked to POLITICO about his bill this spring and allowed a reporter to listen this month as he addressed critical care physicians who deal with life-and-death situations all the time — and who too often face ambiguity or dissension within families about what their loved one would have wanted.
He says he’s convinced his measure calling for doctors to get compensated for these voluntary conversations could “pass pretty comfortably” — if it were to reach the floor. That’s a big “if.” The hangover of 2009 has not totally dissipated. A lot of people still don’t want to go anywhere near the volatile issue four years after the “death panel” summer.
The ongoing conflict over health care reform adds to the difficulty. “There are some people so invested in repealing Obamacare that they don’t want distractions,” Blumenauer said.
That frustrates him.
“We have allowed people with ideological or political agendas to play this out,” Blumenauer said. “We’ve really obscured the fact that this is all about making an informed decision that is respected. ”
Roe doesn’t see eye-to-eye with Blumenauer about Obamacare; he’s voted to repeal all or part of it repeatedly and would do so again.
But he’s been reaching out to colleagues, trying to explain that this end-of-life medical consult legislation isn’t Obamacare. It’s about getting people the care they want and helping document their wishes, which may change over time. Both lawmakers noted that an advanced directive doesn’t mean a do-not-resuscitate order. People can and do opt for very aggressive do-everything care.
No companion legislation has yet been introduced in the Senate, but Sens. Mark Warner (D-Va.) and Johnny Isakson (R-Ga.) are working on a separate bill addressing several aspects of advanced care planning as well as care for people with life-threatening illness. The bill, which could be introduced soon, won’t be identical to the House version, which could prove another impediment to passage.
The heart of the Blumenauer bill is simple: Doctors and patients should talk about aging and about how a disease is likely to progress so that the patient can make clear and informed choices and the doctor can understand and respect them. Those conversations can and should take time.
Doctors get well-paid for doing procedures, Blumenauer said. They should also be paid for the time they talk to a patient about something this important. The bill calls for Medicare to reimburse the physician for one such conversation with the patient every five years, more frequently if the patient’s health deteriorates.
Blumenauer notes that Medicare will pay doctors, hospitals and rehab centers tens of thousands of dollars for a terminally ill 90-year-old to get a hip replacement. But it won’t pay a couple hundred bucks for a conversation about other dimensions of that terminal illness.
That’s not how the legislation got framed in the summer of 2009. Rather than being about finding out what granny wants, it became about throwing granny off the cliff. The measure stayed in the House health care reform bill — but didn’t make it into the Senate legislation, which eventually became the law.
“We had over 400 experts and professional organizations come forward and say this is silly, there are no death panels,” Blumenauer recalled. “It’s simple common sense.” That message didn’t get through. It fueled the tea party, nearly derailed the health law and left large swathes of the public convinced that death panels exist, that a group of government bureaucrats will say who lives and whose time is up.
Roe knows a lot of that death panel rhetoric came from within his own party — and as much as he dislikes Obamacare, he finds this vein of attack disturbing. The political discussion is so far removed from what people — Democrats and Republicans, lay people and doctors — experience in their own families, he says. He’s gone through hard conversations and hard choices himself, he says, both in his own family and as a physician.
Many Oregon lawmakers have taken an interest in end-of-life care as the state pioneered legalization of physician-assisted suicide. That, Blumenauer stresses, is not part of his bill.
He says he really got engaged with the issues during the Terri Schiavo case — or the Terri Schiavo “debacle,” as he calls it.
“It was one family’s tragedy turned into a national political spectacle,” he said. “It could have been avoided if she had documented her wishes.”
That made him think about policy steps that could encourage making advanced care planning simpler and more routine. “It struck me as perfect alignment of policy, politics and personal empowerment,” he said. “And nothing that I’ve seen since suggest that it isn’t.”
Blumenauer doesn’t describe his mission as quixotic. It’s like any other bill, he says. Building support is a process. Just keep plugging away, one vote at time. He’s set a goal of talking personally to every single House member, all 435 of them, in the coming months.
He sees some signs that society may be hitting the tipping point. A lot more books and memoirs are being written about aging, caregiving and death. Millions of Americans are helping care for elderly relatives and finding themselves thrust into wrenching choices, wishing they had more guideposts. No family, Democratic or Republican — or even member of Congress — is immune.
Roe shares that belief, and he joins Blumenauer for strange bedfellow presentations to health and medical groups. But he’s less sanguine about how much the winds have changed in Congress.
The bill will pass someday, he said. Asked when that may be, he replied with a joke: “Maybe after I retire.”
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