Talking Early About How Life Should End


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For many years now, my mother has talked to my brother and me — often — about how she wants to die. She is still in good health. But when it happens, we both know that she wants above all to die quickly and without pain. She wants no heroic measures. Because my brother and I know this, and because she has the proper legal documents, she is likely to die as she wishes.

My mother is unusual. Not in what she wants — a Pew Research Center study indicates that 57 percent of Americans would ask their doctor to stop treatment so they could die if they had an incurable disease and were suffering a great deal of pain. What sets my mom apart is that she has been unafraid to talk to us about her wishes.

Most Americans don’t do that. Of adults 75 and over, the study found that only 17 percent had talked to their families about their end-of-life wishes. It is an uncomfortable conversation. It always seems too early to talk to a loved one about how she wants to die — until it’s too late, and she can no longer make decisions for herself.

But perhaps soon, more Americans will be like my mom. On Jan. 1, Medicare will begin reimbursing doctors and other health professionals for time spent talking to patients about their end-of-life wishes. This is a big deal, but far from enough. End-of-life conversations need to become something families just do.

There’s one place in America like that now: La Crosse, Wis.

La Crosse started down this path in 1984, when Bernard Hammes, a philosopher by training, was hired as director of medical humanities at the Gundersen Lutheran Medical Foundation. His job was to work with medical personnel to improve their skills and help them make decisions in ethically fraught situations.

In one two-month period, Hammes saw three very elderly patients who had suffered devastating strokes and kidney failure, were being kept alive with dialysis, and could not speak for themselves. If the doctors stopped dialysis, the patients would die. But even on dialysis, the patients would never recover from their strokes.

Credit Rebecca Norris Webb/Magnum Photos

“None of the families had ever talked with the parent about the parent’s perspective on dialysis and when to stop,” Hammes said. “Families were going to have to live with the question of ‘did I do the right thing for my mom or father?’ and they would never know the answer.” These patients had not gotten sick suddenly. They had long, progressive illnesses and had been in care at Gundersen for years — and no one had thought to begin that conversation.

The lack of communication is often catastrophic for patients who do not want heroic measures. When family members don’t know a relative’s wishes, they often feel they must show their love by asking that everything be done. Anything short of the maximum seems like abandonment or betrayal.

And that makes the choice also terrible for families. “I witnessed frequent and repeated moral distress that health professionals and families had making decisions when there were no good decisions,” Hammes said. “It was almost exclusively based on the fact that we didn’t know what the patient wanted.”

Research shows that families who are unaware of a patient’s wishes suffer much more stress, anxiety and depression than those who are aware. “It was a difference of night and day,” said Hammes. “The difference it makes in people’s lives is so clear and big that not to do it seems cruel.”

Hammes started a program to begin end-of-life conversations with dialysis patients and their families. Within two years, he said, almost all the families of dialysis patients knew their loved one’s wishes.

In 1991, Gundersen set up a task force to spread the program throughout La Crosse, which included the Franciscan Hospital and the Skemp Clinic, alongside the Gundersen Lutheran Medical Foundation’s hospital and clinic. All four collaborated, along with nursing homes, hospices and smaller hospitals.

The goal was not simply to have people fill out an advance directive and put it in their medical records. A written directive alone, members of the task force reasoned, could do more harm than good if it came as a surprise to the family, said Hammes. “We don’t think mom understood what she signed,” was a common response.

Just as important as the legal document was a conversation with the patient and her family. The patient would need to understand the options — for example, that “do everything necessary to keep me alive” can mean intubation and cardiopulmonary resuscitation, which on a frail elderly person can break her ribs and sternum; those who survive it often do so with abdominal bleeding and neurological damage. And the family had to agree to support the patient’s decisions.

“We really changed the nature of the question,” said Hammes. “It’s not: ‘How do you fill out this legal document,’ but ‘What does good care look like if you become ill and may not recover?’ At the most basic human level, what families face in those moments is, ‘What does it mean to love my mom or dad when they’re not going to recover, but we could still do some things to keep them alive? What does it mean to take good care of my mom at this point?’”

The task force brought its message to local churches, senior centers and community groups. Inside health care organizations, it became evident that doctors didn’t have time for these conversations, but also that doctors weren’t required. Instead, the task force trained nurses, social workers and chaplains.

Today, Hammes said, 96 percent of people who die in La Crosse County have had a conversation with relatives about how they want to spend their last days, and those wishes have been entered into their electronic medical records.

More From Fixes

Read previous contributions to this series.

President Obama tried to include reimbursement for end-of-life conversations in the Affordable Care Act. Sarah Palin derailed it with a single Facebook post: “The America I know and love is not one in which my parents or my baby with Down syndrome will have to stand in front of Obama’s ‘death panel’ so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care.” With that, she gave a rallying cry to the anti-ObamaCare right. Palin’s post won PolitiFact’s 2009 “Lie of the Year” award.

A year later, the Obama administration tried again to cover advance care planning decisions. Again, it proved too politically toxic.

Today the political climate has improved. Advance care planning is no longer coupled to Obamacare, and Medicare’s decision to cover end-of-life conversations will have a ripple effect. Some private insurers already cover these conversations, and when Medicare starts, the rest will most likely follow. Last Thursday, WPS Health Solutions, Wisconsin’s largest nonprofit insurer, announced that its WPS Health Insurance and Arise Health Plan would begin to cover advance care planning conversations as of September.

Senator Mark Warner, a Virginia Democrat, has introduced legislation each year to reimburse and encourage care planning conversations, on a scale going beyond what Medicare is proposing. This year, his Care Planning Act has three Democratic and three Republican original co-sponsors and the endorsement of dozens of organizations.

The issue is personal for Warner. His mother had Alzheimer’s disease for 11 years before her death in 2010, and during the last eight or nine years she didn’t speak. “My father and sister took care of my mom 24/7 at home with a little bit of extra help until the last week or two,” he said. “I was a well-informed citizen” — exceedingly so; for much of that time he was governor of the state — “but we never had the conversation in our own family. Even though both of Mom’s parents had Alzheimer’s, we never sat down with my mom and asked her and thought this fully through. It is not always the easiest thing to talk through.”

Gunderson has bundled its strategies, training curriculum and materials into a package called Respecting Choices, which, according to Hammes, is being used in about 125 American hospitals and several other countries. The program is also being studied in a randomized control trial with sites in six European countries.

Others are now spreading Gundersen’s program. Minnesota was the first of a half-dozen states to establish a program called Honoring Choices. One other was Wisconsin; John Maycroft, the director of policy development and initiatives at the Wisconsin Medical Society, said that Honoring Choices Wisconsin works with 28 health care organizations — covering about half the state’s patients — to train staff to use Respecting Choices. The group also helps health care organizations make these conversations a part of routine care — for example, by finding a physician to champion it at each site. It trains advocates for it in community settings like churches, and makes videos for Wisconsin public television.

As Respecting Choices spreads, it encounters a major obstacle that was not present in La Crosse. At Gundersen and the other founding organizations, doctors and other staff members did not (and still do not) bill for each procedure, a system called fee-for-service. Instead, they draw salaries. This mattered because insurers and Medicare don’t reimburse health care personnel for having these conversations — it’s unbillable time. Because staff members in La Crosse are largely salaried, that’s not an issue for them.

But fee-for-service does matter on another level, even in La Crosse: Having end-of-life conversations often results in patients choosing less invasive health care. Gundersen spends less than the vast majority of American hospitals to care for inpatients in the last two years of their life; in 2010, for example, its spending was 40 percent below the national average. (The end-of-life conversations were not the only factor, but they were undoubtedly a major one.)

Since the last two years of life for patients with chronic illness are responsible for a third of Medicare’s costs, eliminating unwanted invasive care is great for taxpayers. But it’s not as great for hospitals, which take in less money if they can’t fill those beds. Although hospitals are switching slowly — too slowly — to value-based medicine, which pays according to quality, not quantity, of care, most hospitals still have a perverse incentive to provide as much medical care as possible.

Even so, many fee-for-service hospitals are beginning to adopt advance care planning. “So many clinicians have the experience of performing CPR on a 90-year-old woman with heart disease,” said Maycroft. “They remember what they felt and saw in the patient, and they’re doing that because they never had a conversation. This is really important. It affects everyone in the world — literally. That’s what motivates people to do this.”

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Tina Rosenberg

Tina Rosenberg won a Pulitzer Prize for her book “The Haunted Land: Facing Europe’s Ghosts After Communism.” She is a former editorial writer for The Times and the author, most recently, of “Join the Club: How Peer Pressure Can Transform the World” and the World War II spy story e-book “D for Deception.” She is a co-founder of the Solutions Journalism Network, which supports rigorous reporting about responses to social problems.

Correction: October 27, 2015
An earlier version of this article incorrectly identified the director of policy development and initiatives at the Wisconsin Medical Society. The director is John Maycroft, not Maywood.