16 Dec 2015

2015 is the year America started having a sane conversation about death

Earl Blumenauer had become accustomed to losing.
During the health reform debate, the Oregon congressman pushed a provision that would reimburse doctors for helping Medicare patients draw up advance care directives.
Blumenauer's proposal quickly became the most politically toxic section of a law rife with contested projects and programs. It's the part of Obamacare that Sarah Palin termed "death panels." In August 2009, amidst ugly skirmishes at angry town halls, legislators relented. They left the end-of-life planning provision on the cutting-room floor.

But Blumenauer was undeterred. He quickly began lobbying the Obama administration to create the advance care benefit through regulations that Congress wouldn't have to approve.
"It was very difficult, in part because of the lingering death panel cloud," Blumenauer told me in a recent interview. 
Since 2009, Blumenauer has doggedly — and unsuccessfully — badgered any Obama administration member who might listen to his cause. But the White House, for five years, wouldn't budge. Every year, it would put out the list of services Medicare would reimburse. And every year, advance care planning would not be on it.
Blumenauer recalled once attending a picnic at the White House — and pestering administration officials to take small cards he'd had printed up to summarize his case.
"At this year's White House picnic, around the Fourth of July, there was some indications it could go our way," he says.
On November 2, Blumenauer finally won: The White House finalized rules that will allow doctors to be paid for every discussion they have with patients about creating an advance directive.
The United States has — quietly and with little fanfare — begun to do something quite remarkable. We've started to have a more sane conversation about death, something that just this spring, as I wrote in a lengthy essay, seemed near impossible. That has allowed for significant policy changes that will, starting in 2016, begin to revamp the way Americans plan for the inevitable.
I've spent much of the past month asking legislators, doctors, government officials, and advocates about how that happened. They say health care became a much less heated topic. Doctors and patients, meanwhile, began to take a bigger leadership role. And the White House, cognizant of Obama nearing the end of its term, appeared to see a last moment for action — and decided to seize it.
"As a country, we're more willing to have a conversation around the end of life," says Kim Callinan, chief program officer for the end-of-life advocacy group Compassion and Choices.

Medicare spends billions on end-of-life care. But patients aren't getting the care they want. 

Dying in America is expensive. The 6 percent of Medicare patients who die each year typically account for 27 to 30 percent of the program's annual health care spending. Medicare spent an average of $33,500 for beneficiaries who died in 2011 — four times the amount it spent on the seniors who lived.
Health care providers often make heroic efforts to save patients' lives in their final days and weeks. The average Medicare patient who dies from cancer spends 5.1 days of his or her last month of life in the hospital. A quarter of these cancer patients are admitted to the intensive care unit over the same time period.
But surveys of patients with terminal disease suggest this isn't what they actually want. One survey of 126 patients facing near death found they had five priorities at the end of life — and prolonging life was not actually among them.
Patients told researchers they wanted their pain controlled, a sense of control over their care, their burdens relieved, and time to strengthen relationships with loved ones. They also specifically did not want the "inappropriate prolongation of dying."
2012 paper found that cancer patients who have less intensive care at the end of life — who have fewer hospitalizations and intensive care unit visits in their last week of life — report the best quality of life at the time of death.
In Washington, something so costly that leads to worse patient outcomes would be, in other public health programs, a no-brainer. But with end-of-life care, the opposite tends to be true: We can't talk about the cost of dying because it sounds like a discussion about rationing. Taking cost into account feels callous and inappropriate in the context of death. For years now, that's made end-of-life care an unapproachable topic on Capitol Hill.
That the already-polarizing health reform law included policy changes for end-of-life care certainly did not help matters.
"This was toxic for a while because of the gross mischaracterization of what we wanted to do," says Sen. Mark Warner (D-VA), who has worked on end-of-life care legislation.
Warner, like many other legislators who work on the issue, had his own personal story of attempting to care a loved one — in his case, his mother, as her Alzheimer's worsened.
"I was someone who was relatively informed; I was the governor of Virginia," he says. "We knew something was coming, but we never had the conversation within our family that we needed to. This is an issue that has touched every family, and touched all the ups and downs of the health care debate."

How 2015 changed the way America talks about death 

The first two attempts to pay doctors to talk about death started in Washington. And both were abject failures.
The first attempt touched off the "death panel" outcry during the summer of 2009.
The second came in the winter of 2010, when the Obama administration tried quietly slipping the new benefit into regulations that outline how much Medicare doctors get paid for various procedures. That approach seemed to work — until an eagle-eyed New York Times reporter noticed the regulatory bombshell and wrote a story for the paper's front page. Within days, the Obama administration retreated.
"We were, to put it mildly, disappointed when the administration changed course at the end of 2010," says Blumenauer. "Any poor soul who happened to be the secretary of Health and Human Services or high ranking at the Center for Medicare Services has heard from me about it."
Any federal proposal to change the way Americans die was met with immediate skepticism and framed as a government takeover of health care. 
This last successful attempt didn't start in the White House. It didn't even begin in Washington. It began far outside the Beltway, at the 2012 meeting of the Illinois State Medical Society.
That's where two doctors from the DuPage Medical Society — which covers the county just west of Chicago — brought to the floor a resolution to ask the American Medical Society to create a billing code for advance care planning discussions. Somewhat confusingly, the AMA creates all the billing codes that Medicare uses, while the government decides how much to pay for each code.
"This was the voice of doctors saying, 'We want this,'" says Scott Cooper, executive director of the Illinois Medical Society. "Because it came from physicians and was based on clinical experience, and not some policy wonk who had some idea in Washington. It's an easier sell when you have the voice of the medical community."
The resolution passed — and a handful of Illinois State Medical Society members flew to an AMA meeting in 2013 to deliver their request in person. They were successful, and the AMA created two codes.
"It's not every day you just create a new procedure for Medicare," says Cooper. "We'd never done it before. But this was relatively seamless and easy. It didn't face any pushback."
After that 2013 meeting, the billing codes existed — but Medicare never attached any money to them. If a doctor had tried to bill for an end-of-life planning discussion, no reimbursement would show up. Advocates pushed delicately on the issue, knowing that Medicare was a massive agency they had to work with on countless other issues.

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