Loved ones may make their end-of-life wishes clear—only to express different wishes after dementia takes hold. In an opinion piece for STAT News, Judith Graham grapples with the question of what families should do in those instances.
The question is personal for Graham, whose sister told her family she wanted "no aggressive life-sustaining measures" if she had a terminal illness. Graham suspects that stance came from a component of her sister's personality that "couldn't tolerate the prospect of severe impairment. Or dependency. Or exposure. Or vulnerability."
But after Graham's sister was diagnosed with dementia, she began to change.
"It seemed she had entered a different dimension of human experience," Graham writes, "the world of dementia, where a different set of rules applied."
As her sister's dementia progressed, Graham says, "Her demanding nature softened. She seemed to enjoy life more ... It was as if her super-ego had disappeared. The internal critic that had bothered my sister for much of her life was gone."
Her sister was severely impaired and relied on family members and aides for tasks as simple as feeding herself or walking the dog. But even though she "had reached that state ... she seemed happy."
Graham recalls, "We who spent time with my sister during her final months may have thought, 'This is horrible' ... But my sister was glad to be alive."
Now, Graham and her family were faced with a difficult question: Should they respect the wishes her sister expressed before her disease progressed, or should they respect the wishes of the woman in front of them?
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As the sister's illness got worse, she was moved into an inpatient hospice facility, and her family had to make tough decisions about her end-of-life care, such as whether to administer a feeding tube.
In the end, Graham's family chose not to administer the feeding tube.
"It was what she'd said she wanted," Graham writes, but that wasn't the deciding factor. Instead, the family was "honoring both the person she had been and the person she had become by making sure she didn't suffer unnecessarily."
"We never sat down and talked about my sister's wishes," she writes. "But they informed what was happening along with another set of wishes, which we all understood but had never been articulated: 'Treat me with respect. Be there by my side. Love me. Remember me'" (Graham, STAT News, 9/16).
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Despite mounting evidence of the broader benefits of palliative care, many administrators and physicians still think of palliative care as a way to provide a better experience for terminally ill patients.
What many don't realize, however, is the best palliative care programs also yield longer survival rates, lower costs, and improved quality. In profiling palliative care initiatives around the country, we identified five characteristics of the most effective programs.
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