Alzheimer’s patients who did not want to be kept alive with feeding tubes or other artificial means have for years had a way out. They signed a document to halt such interventions, using advance written directives. While still lucid, they wrote down these crucial end-of-life decisions before the disease robbed them of their mental capacity. But this practice has rarely, if ever, included provisions to refuse food and fluids offered by hand. Until now.
A Washington state agency that advocates for medical aid-in-dying has now 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 new “Instructions for Oral Feeding and Drinking” on its website. 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, said the executive director of EOLWA.
Alzheimer’s: Positive Effects of Advance Directives
Proponents of the guidelines say the advance directives allow alzheimer’s and dementia patients to die in dignity and on their own terms.
Bob Free, a Seattle lawyer who helped draft the document, says: “What we are saying is that there are objective and somewhat subjective conditions in the future where you can say ‘I’m giving you instructions now to help you interpret my wishes,’” said “We have never really seen a standard form or advance directive to govern this.”
The guidelines do not apply to people with dementia who still get hungry and thirsty and want to eat and drink. “If I accept food and drink (comfort feeding) when they’re offered to me, I want them,” the document states.
But if the person shows signs of not wanting food, for example, turning away, spitting food out, coughing or choking; the document says attempts to feed should be stopped. And the guidelines tell caregivers to respect those actions.
Alzheimer’s: Negative Effects of Advance Directives
Critics say the new document raises concerns about potential mistreatment of vulnerable patients, arguing that such “instructions” could be used essentially to starve the elderly or incapacitated.
Stephen Drake, research analyst for the disability rights group Not Dead Yet, points to other so-called right-to-die efforts, such as the refusal of artificial nutrition and hydration, saying they started out narrowly defined and then became common practice.
“It really is a big game changer in the number of people whose lives can be ended when they’re in vulnerable situations,” Drake said. “In legal situations, this is a door-opener.”
The new advance directive guidelines are not binding, legally or ethically. Currently, two dozen states have laws that address assisted feeding, including many that prohibit withdrawing oral food and fluids from dying people. Nevertheless, these advance directives do open the pandora box type door to potential abuse.
Whether VSED, which stands for “voluntarily stopping eating and drinking,” can be authorized in advance by people diagnosed with dementia remains unclear. The question has gained traction in a nation where dementia cases in people 65 and older are projected to reach 7.1 million by 2025.
It is plausible to expect future court cases filed by right-to-life-advocates.