Delicate but crucial: Advance care plans for people with early dementia

Medicare will soon pay for advance care planning discussions. A GHRI study is finding ways to ease the conversation for people with early Alzheimer’s

In summer 2009, the weather and the politics in Washington, D.C. were hot. The health care reform controversy roiled and one issue was: Should we reimburse doctors for talking with patients about advance care planning (ACP)—that is, their preferences for care near the end of life? Opponents equated ACP with government panels deciding who lived and died, so ACP reimbursement was dropped. Until now.

Paying for ACP

In 2016, Medicare will begin paying doctors to talk with patients about ACP. The shift happened after 68 organizations including the American Medical Association, the Alzheimer's Association, and the AARP representing seniors called for ACP reimbursement. The change does not affect Group Health directly because of its reimbursement structure. But Dr. Barbara Walker, a Group Health physician in hospice and palliative care, approves. "I tell patients that talking about care preferences is something you do for your loved ones because it's easier to make decisions for yourself than to make them for someone else," she says.

Dr. Walker is part of a project funded by the Group Health Foundation’s Partnership for Innovation that will ease the approach to ACP conversations for people with potential early dementia. Oncologist Dr. Elizabeth Loggers initiated the project before leaving Group Health Research Institute (GHRI) for a full-time clinical position at Seattle Cancer Care Alliance. GHRI Associate Investigator Rob Penfold, PhD, now leads the work. "We're reaching out to folks with possible mild cognitive impairment to engage them in thinking about ACP," says Dr. Penfold.

"We want these conversations to happen when people can actively participate in making their own decisions."— Rob Penfold, PhD

Group Health and other health systems already encourage ACP conversations and ACP forms to guide medical decisions if a patient can't communicate. But Dr. Penfold notes that only half of people over 55 with Alzheimer's disease or dementia have ACP documents before their diagnosis. "That's the gap we're trying to fill," he says. "We want to know how to approach and engage people with only mild impairment."

Most physicians want families to have ACP discussions. They know such talks are difficult, but they see how stressful it is to make decisions for loved ones without knowing their wishes. "It's difficult for all of us to talk about end-of-life care," says Dr. Walker. "But it's especially important for people who might have dementia to talk about ACP when they still have full decision-making capacity."

How to start

Approaching an ACP discussion is delicate. The project led by Dr. Penfold will begin gathering information about this step in focus groups starting this month. Participants will have visited a physician because of a memory complaint and they will bring a family member or friend. The focus groups will explore how to start talking about medical plans in case of serious memory loss in the future. Explains Penfold, "We'll be asking them, 'When is a good time to reach out? Who do you want to have ACP conversations with? And what do you want to know about Alzheimer's and dementia?'"

"Earlier and better outreach could help people prepare."

To help find potential study participants, the researchers developed a natural language processing (NLP) tool: a computer-based method that searched medical records for keywords and phrases indicating possible early dementia. Dr. Penfold says he will be applying for funding to further develop this tool for research. For example, NLP could be useful in longitudinal analysis of how cognitive decline progresses to different types of dementia or in studies on early dementia detection. "Earlier and better outreach could help people and their families prepare and do as much prevention as possible," says Dr. Penfold. "Because we know that exercise, social activities, and scheduling events to look forward to can improve quality of life for people with cognitive decline."

For now, Dr. Penfold and his team are preparing for their focus groups. Based on what they learn, they'll launch a website, planned for March 2016, with resources such as ACP forms and links to organizations that offer dementia information and support. This will help primary care physicians and patients participate in shared decision making, says Dr. Penfold.

To Dr. Walker, the focus group discussions alone are progress. "I'd like all of us to be thinking and talking about our wishes at the end of life," she says. "The more we raise awareness and normalize these conversations, the easier it will be for everyone."

by Chris Tachibana

In addition to Drs. Penfold and Walker, the research team for the ACP project is Group Health Physicians Carol Hartley, MD, and Timothy Scearce, MD; and Group Health Home Health & Hospice's Susan Powell, LICSW, and Shannon Callin. Also on the team are Steve Balch, Emily Bourcier, Sarah Evers, Lisa Ross, and Tyler Ross from Group Health Research Institute.