by JONEL ALECCIA
Nora Harris, who died in October after a battle with Alzheimer’s disease, signed an advance directive stipulating no care to prolong her life. Her husband took the state of Oregon to court because she was spoon-fed against her wishes. PHOTO/Jim Craven for KHN
People who abhor the thought of being kept alive with feeding tubes or other types of artificial nutrition and hydration have, for years, had a way out: They could officially document their wishes to halt such interventions using advance directives.
Even patients diagnosed with progressive dementia who are able to record crucial end-of-life decisions before the disease robs them of their mental capacity could write advance directives.
But caregivers and courts have rarely honored patients’ wishes to refuse food and fluids offered by hand.
Margot Bentley, 85, of British Columbia, died last year. She was a retired nurse who had cared for dementia patients before being diagnosed with Alzheimer’s in 1999. In 1991, she wrote a statement stipulating that she wanted no nourishment or liquids if she developed an incurable illness. However, the nursing home where she was a patient continued to spoon-feed her, despite her family’s protests. A court ruling upheld the nursing home’s action, saying that food is basic care that cannot be withdrawn.
Nora Harris, 64, of Medford, Ore., died on Oct. 11 after an eight-year struggle with early-onset Alzheimer’s disease. More than a year earlier, her husband had gone to court to stop caregivers from spoon-feeding Harris, who had an advance directive that called for no artificial nourishment or hydration. A judge declined, siding with officials who said the state was required to feed vulnerable adults.
To try to reverse this trend, a Washington state agency that advocates for medical aid-in-dying has created guidelines for dementia patients who don’t want to be spoon-fed at the end of life.
The group End of Life Washington, or EOLWA, which assists people using the state’s 2009 Death with Dignity Act, recently posted a guide called Instructions for Oral Feeding and Drinking on its website.
Aimed at people with Alzheimer’s disease and other progressive dementias, the document provides a two-page template for patients to instruct caregivers not to provide oral food or fluids under certain circumstances. There’s another document explaining the do’s and don’ts of using it.
The instructions are ground-breaking for patients who fear losing control not only of their faculties but of their free will to live and die on their terms, says Sally McLaughlin, executive director of EOLWA.