New Healthcare Directive: Facing Dementia with a Plan
Dr. Barak Gaster is a Seattle internist who spent three years working with specialists in geriatrics, neurology, palliative care and psychiatry to create a dementia-specific advance directive. The document maps out the stages of dementia: mild, moderate and severe; it asks patients to specify which medical interventions they would want at each phase of the illness.
Identifying end-of-life care while still able to make decisions
“Patients stumble into the advanced stage of dementia before anyone identifies it and talks to them about what’s happening,” said Dr. Gaster. “At what point would they not want medical interventions to keep them alive longer?” Dr. Gaster wants his patients to respond to his directive before the disease has left them unable to make choices.
Ann Vandervelde, 71, is an abstract painter who was familiar with dementia. Her father had died of dementia and, as a hospice volunteer, she had spent time with dementia patients. She also was well aware of the family conflicts that can accompany critical medical decisions.
Not all experts are convinced that another directive is needed
But as Dr. Gaster and his co-authors argue in the JAMA, the current directive doesn’t address dementia and the disease’s progressive nature. Dementia progresses slowly, and in the early stages, patients can still enjoy a high quality of life and are able to make decisions about their care.
An estimated 20%-30% of us will at some point develop dementia
Last year, the journal Demography estimated that for someone born in 1940, the lifetime risk of having some form of dementia at age 70 was 30.8% for men and 37% percent for women. Dr. Gaster has offered his directive to patients qualifying for Medicare. Not surprisingly, those families who have experienced dementia are most responsive to the more comprehensive directive.
Highlights of Dr. Gaster’s directive include the following:
For each stage of dementia, the patient can choose among four options, from full efforts to prolong life to comfort care only.
Patients can opt for lifesaving treatments.
They can opt to receive care where they live but avoid hospitalization, which can be frightening for a dementia patient.
Doctors and nurses are concerned that these end-of-life documents get filed away—it’s not uncommon for documents to be unavailable when it’s time to make critical decisions.
Healthcare professionals are trained to save lives—not allow patients to die
One of the problems with directives is that healthcare professionals are trained to save lives, not necessarily to administer palliative care that will allow their patients to die. It’s not uncommon for family members to ignore the wishes of their loved ones and keep someone alive against their documented wishes.
The takeaway: Families need to get involved
We need to be discussing quality of life issues with our families and healthcare teams–identifying what we find acceptable or unacceptable, what interventions we agree to. The decisions should be documented and shared with family, friends and doctors. For Ann Vandervelde, knowing that she had carefully detailed her end-of-life wishes and shared them with her family gave her a sense of calm. She trusted that the people she loved and trusted would carry out her final wishes.