By JoNel Aleccia August
21, 2017
MEDFORD, Ore. — Bill
Harris is blunt: For more than a year, he has been trying to help his wife die.
The 75-year-old
retired tech worker says it’s his duty to Nora Harris, his spouse of nearly
four decades, who was diagnosed with early-onset Alzheimer’s disease in 2009.
“Let me be honest:
Yes. It’s what she wanted,” he said. “I want her to pass. I want her to end her
suffering.”
Nora Harris, 64, a
former librarian, signed an advance directive after
her diagnosis to prevent her life from being prolonged when her disease got
worse. Now, her husband said, she’s being kept alive with assisted eating and
drinking against her stated wishes.
The onetime Virginia
Woolf scholar and world traveler can no longer communicate, recognize family
members or feed herself. She’s being spoon-fed at Fern Gardens, an assisted
living center in southern Oregon, after a local judge ruled against Bill
Harris last summer, concluding that state law mandates that she continue to
receive help.
“She did not want to
be in a position where somebody had to totally take care of her,” Bill Harris
said. “When nature, through the disease, basically said, ‘I can’t feed myself,’
Nora’s position was, that’s it. Let nature take its course.”
In recent weeks, Nora
Harris has been gaining weight, climbing from less than 100 pounds to 102 or
103 — just enough to keep her stable. Bill Harris learned that, in addition to
three state-required daily meals, staffers have been feeding Nora optional
snacks, too.
Now he’s considering
going back to court to try to stop the snacks in an effort to let Nora Harris
lose enough weight to end her life. Twice before, in 2015 and 2016, she fell to
90 pounds and was enrolled in hospice, with six months or less to live, only to
rebound, he said, when staffers coaxed her to eat.
“You’re denying Nora
the right to die on her terms,” Bill Harris said. “It’s not a right-to-life
issue, it’s a right-to-die issue.”
The southern Oregon
case underscores the complexity surrounding the use of advance directives for
people with Alzheimer’s disease and other dementias.
Advance directives are
legal documents that spell out a person’s end-of-life wishes if they are unable
to make their own decisions.
These directives
generally allow named agents the power to withdraw artificial hydration and
nutrition in the form of feeding tubes, for instance. But when that same
nourishment is offered by hand, several states, including Oregon, draw a line,
said Thaddeus Mason Pope, director of the Health Law Institute at Hamline
University in St. Paul, Minn., and an expert on end-of-life law.
Across the U.S., the
more than 5 million people living with dementia are
typically encouraged to put their end-of-life wishes into writing early and to
pick a trusted person to carry them out, said Beth Kallmyer, vice president of
constituent services for the Alzheimer’s Association.
That’s no guarantee,
however, that those requests can — or will — be honored. In Nora Harris’ court
case, her advance directive and testimony from her husband, her daughter and
two close friends all indicated that she wouldn’t want anything to prolong her
life.
“That court decision
basically condemned Nora to the full extent of the Alzheimer’s disease,” Bill
Harris said. “They gave her no exit out of this situation.”
But Eric Foster, the
court-appointed lawyer who represented Nora Harris, argued that her directive
doesn’t specifically mention food and drink presented by hand. Because she now
opens her mouth and swallows when food is offered, she has, in essence, changed
her mind, he said in a court document.
Bill Harris said that
opening her mouth is a reflex, an automatic response to six decades of habit.
Kallmyer, with the
Alzheimer’s Association, said it’s hard to tell whether someone with dementia
is acting out of reflex or desire. The association recommends against
tube-feeding for patients with dementia, while also advising what they call
“careful hand-feeding.”
“If they’re eating and
they’re opening their mouth, it’s difficult to say they didn’t want it,” she
said.
Foster’s stance was
backed by a judge who sympathized with Bill Harris’ plight, but sided with Fred
Steele, Oregon’s ombudsman on long-term care. Steele said Nora Harris’ advance
directive wasn’t specific enough to advise Fern Gardens staff to withhold food
and water.
“Our concern was just
focused on the administrative rule,” he said. “If the rule exists to prevent a
facility from committing elder abuse, our focus was on what the rule required.
The rule requires the resident be cued with food and they have the choice of
eating or not eating.”
Lynn Rawlins, the
center’s administrator, said her hands are tied.
“We have to feed them
until they stop opening their mouths,” she said before a tour of the center
last month. “Unless feeding them causes more harm from aspirational pneumonia
or a choking factor. We still have to feed them, even if they choke.”
It’s not a
right-to-life issue, it’s a right-to-die issue.
Bill Harris
Nora Harris is a small
woman with graying brown hair and dark, confused eyes. On a recent 88-degree
summer afternoon, she wore a maroon fleece sweater, gray sweatpants and
mismatched socks.
She spoke in urgent
whispers, syllables spilling out, unlinked from words.
Bill Harris put an arm
around her shoulders reassuringly.
“Absolutely,” he said.
“Of course.”
But he added later:
“It’s difficult visiting her, especially when you know what Nora was like
before.”
That’s the thorny
issue at the heart of advance directives for people who lose the capacity to
make their own decisions, said Pope.
If Nora Harris were
aware enough to refuse food, instead of passively accepting it, there would be
no question.
“Do we listen to the
previous Nora or to the current Nora?” Pope said. “That is, unfortunately, not
legally or ethically answered well.”
A bill introduced in
the Oregon Legislature last year would have allowed an appointed committee to
amend the state’s advance directive form. Critics, including Oregon Right to
Life, an advocacy group, opposed the effort, arguing that it paved the way for
mistreatment of vulnerable people, including dementia patients like Nora
Harris.
“OR legislators move
to allow starving, dehydrating the mentally ill,” one headline read.The
bill passed the state Senate, but failed to advance.
Nora Harris’ situation
also raises issues surrounding a controversial method of hastening death for
seriously ill people known as “voluntarily stopping eating and drinking,” or
VSED. It causes death through dehydration, usually in seven to 14 days.
VSED is being used by
a small but growing number of determined patients with the help of their
families, Pope said.
In Washington state,
board members at End of Life Washington, a nonprofit that supports medical
aid-in-dying, created an advance directive focused
on people with dementia. Soon the group plans to release a new form for people
who want to leave instructions for stopping eating and drinking at the end of
life.
Medical experts say
VSED can be a relatively painless, peaceful death. In the absence of nutrition
and hydration, the body produces opiate-like substances that blunt hunger and
thirst. With additional painkillers, comfort can be ensured, they add.
We have to feed them
until they stop opening their mouths.
Lynn Rawlins, Fern Gardens administrator
An analysis of VSED research concluded that
“terminally ill patients dying of dehydration or starvation do not suffer if
adequate palliative care is provided.” A 2003 survey of
nurses in Oregon who helped more than 100 patients with VSED deaths said they
were “good” deaths, with a median score of 8 on a 9-point scale.
Unlike aid-in-dying
laws or rulings now in place in six states, VSED doesn’t require a government
mandate or doctor’s authorization.
But the question of
whether people with dementia can authorize a VSED death in advance, to be
enacted later, when they’ve lost the capacity to choose, remains legally
uncertain, Pope said.
“We don’t have
statutes, we don’t have regulations, we don’t have a court case,” Pope said.
“We have this thing where you’re allowed to refuse medical care. But this is
basic care. Are you allowed to refuse basic care?”
For now, the answer in
the case of Nora Harris is no.
That’s frustrating for
Bill Harris, who says the emotional — and financial — toll of her illness has
been enormous.
“The person you know,
the person you married, who you love, is basically going away, fading away
before your eyes,” he said.
He had planned to
retire from his job at Wells Fargo bank at age 67 but worked an extra eight
years to pay for the costs of Nora’s care, which total more than $80,000
out-of-pocket each year. Because she fell ill at age 56, she didn’t qualify for
Medicare or other government help.
Worse, though, is
seeing his once “extremely bright” wife wandering the halls of the assisted
living center, “like a zombie,” he said.
“Nora was quite
enamored of Virginia Woolf,” Bill Harris said, referencing the British author
who drowned herself after years of mental illness.
“If she had known this
would happen, she would have put rocks in her pockets and jumped in the river.
This is absolutely where she never wanted to be.”
KHN’s coverage of
end-of-life and serious illness issues is supported by The
Gordon and Betty Moore Foundation.
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