What’s the Path Forward for Advance Care Planning?

Reverberations from Dr. R. Sean Morrison’s Notes from the Editor column in the June issue of the Journal of Palliative Medicine, where he described advance directives and advance care planning as “clear, simple, and wrong,” continue to echo across the field of serious illness care, raising important questions about the future of the advance care planning movement.

Following the column, UC San Francisco palliative care physician Eric Widera, MD, hosted Morrison on a GeriPal podcast and in a description about the podcast compared Morrison’s post to dropping a bomb on the field.

Lively debates about the issue ensued in Zoom sessions at some recent national conclaves: Two workshops hosted by the National Academy of Sciences, Engineering and Medicine on “Advance Care Planning: Challenges and Opportunities”(Oct. 26 and Nov. 2); and the Coalition to Transform Advanced Care’s National Summit on Advanced Illness Care, Oct. 29-30.

Morrison, head of palliative care at Mount Sinai School of Medicine in New York City, told Widera that he wasn’t trying to do away with advance care planning and advance directives, exactly, but he argued that enough research has been done on them already. More than $300 million research dollars have funded more than 1,600 published studies, encapsulated in 80 systematic reviews—and even a systematic review of the systematic reviews.

Yet the empirical data have yielded only modest evidence of achieving the goal of advance care planning: ensuring that patients receive the care they want and don’t receive care they don’t want. “We can’t even seem to find a hint that the needle has budged,” he said.

Whether the failure is conceptual, attitudinal, operational, or other, hardly matters. Comparing advance care planning to his father’s Ford Pinto of years ago, Morrison said, “It’s not fair to our patients and families to keep trying to get this car to run…Let’s stop putting resources into making advance care planning and advance directives work, after decades of trying.”

Rather than emphasizing the need to make treatment decisions in advance, “the real question is how do we help families make better decisions at the point when important decisions need to be made?” Morrison said during the podcast.

The important work of real-time goals-of-care conversations between doctors and patients and/or their families – talking about likely prognoses and alternatives – is hard work, but the skills can be taught.

Hurdles to Advance Care Planning

Morrison also said that if the holy grail of advance care planning is goal-concordant care, that won’t happen until the financing of health care is reformed and the influence of the profit motive is removed from end-of-life treatment decisions.

“If we really try to get people to think ahead and plan ahead, are we selling them a bill of goods because the engine of the health system and profit motive will take over anyway?” he said.

Speakers at the recent virtual meetings highlighted the public’s persistent and widespread misconceptions about advance care planning, with considerable resistance to some of the messages commonly used to promote it. “Language like ‘goals, values, and preferences’ sounds to many people like we’re talking about death,” said Anna Gosline, executive director of the Massachusetts Coalition for Serious Illness Care, in a session at C-TAC on reimagining advance care planning.

Unsurprisingly, several speakers disagreed with Morrison’s conclusion that advance care planning is wrong. During a C-TAC session, Stephanie Anderson, executive director of Respecting Choices, said her organization advocated for a de-medicalized approach to ACP but believes it should be a standard of care for every health system.

And Jennifer Moore Ballentine, executive director of the CSU Shiley Institute for Palliative Care, countered the characterization that Morrison had spoken out against advance care planning overall. Rather, she said, he wanted to see the time and money that has been devoted to improving ACP and proving its efficacy better spent on other issues in palliative care.

That point, she said, is well taken. “While I think even Dr. Morrison would agree that any amount of advance care planning – especially appointing a surrogate decision maker – is not wasted, it’s time for the field and the funders to move on to other issues that matter,” Ballentine said.

Where’s the Infrastructure?

Susan Tolle, MD
Susan Tolle, MD

Susan Tolle, MD, Director of the Center for Ethics in Health Care at Oregon Health Sciences University, offered an alternate perspective on ACP in a recent phone interview. Advance care planning done far in advance of the actual need hasn’t been shown to significantly impact patient outcomes such as location of death, she said.

“We’ve known that for a long time,” Tolle said. “We’ve also known that a lot of people just don’t engage with advance care planning.” By contrast, POLST [Physician Orders for Life-Sustaining Treatment], for which she has been a leading standard bearer, is not so much advance care planning as current care planning—working with the health care team once the patient has been diagnosed with a serious illness.

“People often have a simplistic, piece-of-paper kind of thinking, ‘Oh, I’ve done my advance directive, I’ve taken care of things, I’ll get what I want at the end of life,’” Tolle said. The ability to honor the person’s wishes – for example, to not go back to the hospital with an advanced illness – depends more on having options and services available and accessible when they’re needed.

“That’s about having the pieces in place that allow you to die at home—which requires a huge, organized, multi-pronged coordinated effort,” Tolle said.

“The percentage of people who say they’d like to die at home is not different across states,” she added, but the proportion that is able to have that preference honored is highly variable.

For instance, if you can’t get oxygen into the home quickly, or a visit from the hospice team when requested, then a preference to stay at home will be harder to honor. Primary care physicians also have a major role, but they need to be backed up by essential services in the community.

“It makes a bigger difference if the infrastructure is there when it’s needed. We’re talking about the creativity of the whole community taking care of its own, about hospices doing creative things above and beyond the hospice benefit,” Tolle said. And that’s what’s seen in Oregon, which consistently posts higher scores than other states on end-of-life quality measures.

In the end, Ballentine asserted, Morrison’s argument is that we need a paradigm shift, away from advance care planning to in-the-moment shared decision making, for which a different type of training in communication skills will be needed across the board.

“I worry that the big headlines generated by his provocative editorial have a real risk of throwing the proverbial baby out with the bathwater,” she said, “He’s not advocating that we give up on discerning patients’ goals or ignoring the need for surrogate decision makers – all that is good. But we do need more emphasis on how to have tough conversations right now, in the cancer clinic, in the ICU, in the nursing home, in the emergency room.”

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