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.
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food is basic care that cannot be withdrawn.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.
“We get calls from folks with concerns about dementia and concerns about
the fact that loved ones with dementia feel like they’re being force-fed,”
McLaughlin says. “Many, many folks understand that as they stop eating, they
would like no one else to feed them.”
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.
“It really is troubling,” says Stephen Drake, research analyst for the
disability rights group Not Dead Yet.
He 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 says. “In legal
situations, this is a door-opener.”
Proponents of the guidelines say they fill a gap in information for
people already interested in navigating the uncertain landscape that surrounds
assisted feeding at the end of life.
“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,’ ” says Bob Free, a Seattle lawyer who helped
draft the document. “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, the authors note.
“If I accept food and drink (comfort feeding) when they’re offered to
me, I want them,” the document states.
But if the person appears indifferent to eating, or shows other signs of
not wanting food — turning away, not willingly opening their mouth, spitting
food out, coughing or choking — the document says attempts to feed should be
stopped.
And the guidelines tell caregivers to respect those actions.
“No matter what my condition appears to be, I do not want to be cajoled,
harassed or forced to eat or drink,” the document states. It adds that the
“reflexive opening” of the mouth should not be interpreted as consent to
eating.
“We think this is a fairly objective test, which in real life will be
clear,” says Free.
The new guidelines aren’t binding, legally or ethically, experts say.
Nearly two dozen states have laws that address assisted feeding,
including many that prohibit withdrawing oral food and fluids from dying
people.
“The hard part about advance directives is even though you put your
wishes there, it doesn’t mean a medical professional will honor it, or that a
facility will honor it,” says Jonathan Patterson, staff attorney for Compassion and Choices, a group that supports
medical aid-in-dying. But having a template should help make those wishes more
clear.
Cases like Harris’ and Bentley’s horrify people who fear the same fate.
Nancy Christensen, 60, a Seattle nurse, says she updated her living will
herself within days of reading about Harris.
“I thought, ‘Wow, I need to be much more specific,’ ” says Christensen,
who appended notes saying she doesn’t want assisted feeding if she can no
longer feed herself. “I don’t think anybody thinks about this until they’re too
far into it.”
Free, 71, says he plans to fill out the new documents himself.
“It’s been a personal desire of mine to have a dignified death,” he
says. “The idea that my sons would have to witness me in a deteriorated state
is very frightening and demoralizing.”
Whether the decision to voluntarily stop 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.
Paul Menzel, a bioethicist and professor emeritus at Pacific Lutheran
University in Tacoma, Wash., says some people want to avoid the most
debilitating stages of the disease. “It’s not misery they’re afraid of,” he
says. “They just don’t want years of withering.”
The End Of Life Washington document is a novel tool, but it may not go
far enough, says Judith Schwarz, clinical
director for End of Life Choices New York, which advocates for medical
aid-in-dying. The conditions it lists typically apply to the final stages of
dementia, she says. Some patients want the right to refuse food earlier in the
disease process in a deliberate effort to hasten death.
Until now, however, there have been few models for articulating those
desires.
“It certainly is an improvement over no previous mention of
hand-feeding,” Schwarz says. “Maybe this is where it must begin.”
SOURCE: wabe.org, Jonel Aleccia
