How can we make advance care planning easier for patients and families?

Dr. Robert Penfold talks about how his father’s death inspired him to work on advance care planning for people with mild cognitive impairment.

by Robert Penfold, PhD, associate investigator at Kaiser Permanente Washington Health Research Institute

Thinking about death isn’t easy. Especially when it’s our own. So when it comes to deciding what kind of medical care we want — or don’t want — at the end of life, there’s natural inaction.

But for people with early signs of cognitive impairment, delaying these decisions can have unique consequences. What starts out as mild problems with thinking or memory can develop into full-blown Alzheimer’s disease or another kind of dementia. And at that point, being clear about preferences for end-of-life care can be challenging, if not impossible.

That’s why it’s so important to reach out to people whose cognitive impairment is still in early stages — so they don’t lose their window of opportunity to make their wishes known. Here at Kaiser Permanente Washington Health Research Institute (KPWHRI), we’re helping find ways to make that process easier.

Talking about — and documenting — our choices eases the burden for families

Kaiser Permanente and other health systems already provide resources to help people decide what kind of medical care they want as they near the end of life or lose the ability to make their own decisions. One great example is Your Life, Your Choices, a free two-hour workshop offered at several Kaiser Permanente clinics in Western Washington and in Spokane.

Advance Directives | Classes
Your Life, Your Choices offers free, two-hour group sessions directed at helping you make informed decisions about your care.

The goal of the workshop is to help people with advance care planning (ACP), a process in which people:

• Talk with their loved ones and care providers;
• Make informed decisions about their end-of-life care; and
• Document their wishes so their families and providers know the choices they’ve made.

My father’s death a couple years ago brought me face to face with the importance ACP. He had a terminal illness that took away much of his cognitive ability as it progressed. But while he still had his critical faculties, he’d made his wishes known to me, my mom, and my brothers. And he had talked with his doctor about what he wanted to happen as he neared death.

Unfortunately, his conversation with his doctor was not written down. And when it came time to take the path my dad had wanted us to take, his doctor claimed this was the first he’d heard of it. It was stressful for all of us, but especially my mom. The experience really cemented in my mind how important it is to have your end-of-life preferences clearly documented. You’re not only making it easier on yourself, you’re making it easier for everyone who cares about you.

Patients and families support ACP conversations

Around the same time, I was asked to take on a Partnership for Innovation project that dealt with this very issue. The goal was to reach out to people with early signs of cognitive impairment and encourage them to think about ACP and fill out the necessary forms while they still have full decision-making capacity.

But how could we do that in a way that honored the difficulties families face when they talk about the death of a loved? To learn more, we started by holding focus groups with people with mild cognitive impairment and their loved ones — some of whom had filled out their ACP forms and some who hadn’t.

We learned that this population enthusiastically supported the idea of their family physicians suggesting ACP early, often, and in a way that normalized the process. So we built resources with that objective in mind, including:

• A web page and video that describe the Your Life, Your Choices workshop and links to helpful resources and ACP forms;
• A tool in the electronic health record that physicians can use to place a link to the web page in after-visit summaries for patients who are experiencing mild cognitive impairment; and
• A referral for those patients to attend the Your Life, Your Choices workshop.

Next steps: Preparing for the coming wave

We completed the Partnership for Innovation project last year, but my work in this area is just getting started. As a next step, I’m working with my KPWHRI colleague David Carrell, PhD, on a project that will use natural language processing to identify patients who have mild cognitive impairment that hasn’t been formally diagnosed.

Finding and reaching out to these patients is more important than ever. Experts predict that new diagnoses of Alzheimer’s disease and other types of dementia will increase by the millions in the next 20 years or so as the boomer generation ages. Dealing with that will put a big strain on families, nursing homes, caregivers, and the medical system in general. So we need to do everything we can to get ready for that coming wave.

For more information or to register for the Your Life, Your Choices workshop, call the program coordinator at 1–866–458–5276 or send an email to yourlifeyourchoices@ghc.org. You don’t have to be a Kaiser Permanente member to attend.

Learn more about Kaiser Permanente Washington Health Research Institute. Sign up for our free monthly newsletter.