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January 30, 2018

Advance directives do a terrible job at handling dementia, experts say. How can we do better?

Daily Briefing

    Providers are increasingly offering older patients at risk of dementia a more nuanced version of the standard advance directive, enabling them to describe their preferences for care at various points in the illness's progression, Paula Span reports for the New York Times' "The New Old Age."

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    According to a 2017 study, the lifetime risk of dementia at age 70 is 30.8% for men and 37.4% for women. While dementia is terminal, it progresses slowly, Span writes—and the point when patients are no longer capable of directing their care "isn't predictable or obvious."

    Yet standard advance directives do a poor job of addressing dementia, argued Barak Gaster, an internist at the University of Washington School of Medicine, and colleagues in a recent JAMA piece. "The standard advance directives tend to focus on things like a 'permanent coma' or a 'persistent vegetative state," Gaster said. "Most of the time, they apply to a person with less than six months to live."

    And according to Gaster, people are much more likely to develop dementia than to end up in a permanent vegetative state.

    The dementia-specific directive

    To preemptively accommodate the effects of dementia, Gaster spent three years collaborating with specialists in geriatrics, neurology, palliative care, and psychiatry to develop what he calls a dementia-specific advance directive.

    According to Span, the dementia-specific directive in simple language lays out the effects of mild, moderate, and severe dementia, and prompts patients to note which medical interventions they want and do not want at each stage of the illness.

    With Gaster's directive, patients can select from four options at each stage. The options include "full efforts to prolong my life" on one end of the spectrum, and "comfort-oriented care only, focused on relieving suffering" at the other. The remaining options include receiving lifesaving treatment except when the heart stops or when a patient cannot breathe independently, or receiving care that allows a patient to live but avoid hospitalization. According to Gaster, a trip to the ED can be "traumatic" and lead to setbacks for patients with dementia who don't fully understand the experience.

    "Patients stumble into the advanced stage of dementia before anyone identifies it and talks to them about what's happening," Gaster said. "At what point, if ever, would they not want medical interventions to keep them alive longer? A lot of people have strong opinions about this, but it's hard to figure out how to let them express them as the disease progresses."

    Gaster has had about 50 to 60 patients fill out the form, Span reports. Some have turned down the offer, while others have taken the form but not returned it, Gaster said. Regardless, he noted that most patients appreciate the effort—particularly those with family members who've had dementia.

    Ann Vandervelde, a patient of Gaster's who completed the form, said she "felt great relief" upon completing the form. She added that it gave her a sense of control, which she said is "really important to [her], to be in the driver's seat all the way to the end."

    Making patients' directives more accessible

    Gaster isn't the only provider thinking about such directives, Span reports.

    For instance, Rebecca Sudore, a geriatrician and palliative care specialist at the University of California, San Francisco, created the Prepare for Your Care online guide for advance care planning, which encourages patients to articulate the reasoning in their decisions. "At the bedside, the 'why' is very important," she said.

    However, some have noted that existing advance directives aren't always accessible in times of crisis, raising the question of whether creating yet another form will really improve care. Ellen Goodman—founder of The Conversation Project, which has dementia-related kit for patient preferences—said, "We need to have families involved."

    She added, "No checklist on earth is going to cover everything you encounter. Most important is the conversation with the decision-maker. That person has to understand what you value and what's important to you" (Span, "The New Old Age," New York Times, 1/19).

    Learn more

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