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."
A 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.
"You don't want to be put in this awkward position of pushing too hard against an administration or executive branch that has largely been doing many positive things," says Peter Hollmann, a board member of the American Geriatric Society and a practicing physician in Rhode Island.
Medicare sat on the codes for two years. But in early 2015, rumors started to ripple through Washington's health policy circles: This would be the year that Medicare started paying for end-of-life discussions.
The timing made sense: This was, arguably, the last moment the Obama administration had to create the benefit. If the administration waited until 2016, it would be making the change mere days before the presidential election — a risky time for any policy change. Late 2015 appeared to be the Obama administration's last shot.
"People felt this was the last chance to do this," Hollmann says. "No one knows what can happen in an election year, with the potential for shenanigans."
On July 8, Medicare published draft plans to pay doctors to talk about death (about $80 for the first 30 minutes, and another $75 for an additional half-hour). The agency invited comments, which came back near universally positive.
"I am a healthcare professional in palliative care and advance care planning is critical to patients and their loved ones," one doctor from California wrote in.
"Patients and families deserve to have realistic information provided by their doctors, rather than relying on their assumptions often fed by the popular media about what 'life support' and 'rehabilitation' can actually look like," another in Oregon commented.
"Please add the codes below," another Tennessee doctor requested, "so end-of-life suffering can be minimized."
There was no outcry, and no doctors objecting to the new Medicare benefit. On October 30, Medicare made the decision official: Beginning in January 2016, it would pay doctors to talk about death.
"It's a terrible, terrible way to die"
Much like in Washington, bills that changed end-of-life policy never had much luck in California before.
Advocates there, however, wanted to go much further: They had pushed legislation that would allow doctors to prescribe lethal medication to terminally ill patients — in other words, physician-assisted suicide.
But efforts failed in 2005 and 2007, as the California legislature rejected the proposal. Only small, decidedly liberal states like Vermont and Oregon seemed willing to pass those laws.
That all changed with Brittany Maynard, a 29-year-old who died in late 2014 from a rare brain cancer called glioblastoma multiforme. It's a fatal disease that typically causes massive cognitive decline in the last months of lives. Patients can become unable to remember their own last names or to distinguish between a trash can and a toilet.
"My glioblastoma is going to kill me, and that's out of my control," Maynard told People at the time. "I've discussed with many experts how I would die from it, and it's a terrible, terrible way to die."
Maynard looked at that future and made a firm decision against. She moved to neighboring Oregon, which allows doctors to prescribe lethal medications to terminally ill patients like her. Maynard used that law to take her own life on November 1, 2014.
Before her death, Maynard also recorded a series of videos imploring California's legislature to pass a similar law — which would allow other Californians to choose the same death without moving hundreds of miles north. She recorded testimony that was presented to the legislature in March 2015 — five months after her death.
"Brittany helped normalize the discussion around end-of-life care," says Kim Callinan of Compassion and Choices. "Here was this beautiful 29-year-old woman whom we could really relate to. Her coming forward helped transform the conversation that was taking place already, and raised the issue’s visibility."
Compassion and Changes ran its largest-ever campaign for a state bill, putting a half-dozen organizers on the ground throughout the state. It had a watershed moment when the California Medical Association, which had opposed previous aid-in-dying bills, agreed not to take a stance on the new legislation.
Maynard’s illness caused the group to "start taking a look at our historical positions," California Medical Association spokesperson Molly Weedn told me over email. "The decision was made to remove any policy that we had on the books that outright opposed aid in dying. We wanted to ensure that it was a decision made between a physician and their patient and determined around individual instances.
On October 5 — 340 days after Maynard’s death — California Gov. Jerry Brown signed Assembly Bill 12 into law. In one fell swoop, Brown tripled the number of Americans who live in states where doctors can prescribe lethal medications to patients whom they expect to live six or fewer months. In his signing statement, he cited the letters he’d read from Brittany Maynard’s family.
"I do not know what I would do if I were dying in prolonged and excruciating pain," Brown wrote. "I am certain, however, that it would be a comfort to be able to consider the options afforded by that bill. And I won’t deny that right to others."
A saner approach to death in 2016?
In some ways, the 2015 changes to end-of-life policy in America were large. Medicare didn't pay doctors to talk about death. Now it does. This year, 13.7 million people live in places where it's legal for physicians to help terminally ill patients end their lives. Next year, that number will jump to 52.2 million people.
But in other ways, these changes are still quite small. Data from Oregon suggests that the number of people who use the California law, for example, will be relatively small. And advocates for end-of-life care planning see much work to do when it comes to ensuring that Americans' preferences for care at the end of life are met.
Lee Goldberg directs Pew Charitable Trusts' improving end-of-life care project, and he sees the new Medicare benefit as a first step rather than an end goal. There's work to be done to ensure that doctors are equipped to have these conversations — and that patient preferences that do get recorded are easily accessible when patients have emergency situations.
"The odds are no better than chance right now, so that's a big challenge, making sure this patient data is available when it's needed," he says.
Goldberg and others see 2015 as something akin to a proof of concept: proof that the American political system and state governments can pursue changes to end-of-life care policy without getting shouted down about death panels and rationing. This doesn't guarantee future change but at least allows for the possibility. Because in 2015, it wasn't impossible for Blumenauer to get the administration to pay attention to his pocket cards.
"It does wear you down sometimes," he says of sticking with the issue for so long and seeing so little progress until now. "How many times do you answer the same questions on something that seems so compelling, and every year have the answer be no? But every year the case became stronger, and that's more difficult to say no to."