By JoNel Aleccia JANUARY
21, 2020
ITHACA,
N.Y. — When she worked on the trading floor of the Chicago Board Options
Exchange, long before cellphone calculators, Susan Saran could perform complex
math problems in her head. Years later, as one of its top regulators, she was
in charge of investigating insider trading deals.
Today,
she struggles to remember multiplication tables.
Seven
years ago, at age 57, Saran was diagnosed with frontotemporal dementia, a
progressive, fatal brain disease. She had started forgetting things, losing
focus at the job she’d held for three decades. Then tests revealed the grim
diagnosis.
“It was
absolutely devastating,” said Saran, 64. “It changed everything. My job ended.
I was put out on disability. I was told to establish myself in a community
before I was unable to care for myself.”
So
Saran uprooted herself. She sold her home in 2015 and found what looked like an
ideal place: Kendal at Ithaca, a bucolic retirement community in rural New York
whose website promised “comprehensive health care for life.”
And
now, she’s fighting with that community over her right to determine how she’ll
die ― even though she has made her wishes known in writing. Such a fight could
ensnare millions of Americans with dementia in coming years.
In
2018, after two brain hemorrhages, Saran conferred with a lawyer and signed
an advance directive for dementia,
a controversial new document created by the group End of Life
Choices New York that instructs caregivers to withhold
hand-feeding and fluids at the end of life to avoid the worst ravages of the
disease.
“It’s
not something that I am willing to endure,” she said. “I don’t want my life
prolonged beyond the point where I’m participating in life.”
But
when Saran submitted the document to Kendal at Ithaca, the New York continuing
care retirement community where she has spent more than $500,000 to secure her
future, officials there said they could not honor her wishes.
In a
letter, lawyers told Saran that the center is required by state and federal law
to offer regular daily meals, with feeding assistance if necessary.
There’s
no provision, the letter said, for “decisions to refuse food and water.”
It’s a
cruel quandary for Saran and other Americans who have turned to a crop of
dementia directives created in recent years. Even when people document their
choices ― while they still have the ability to do so ― there’s no guarantee
those instructions will be honored, said Dr. Stanley Terman, a California
psychiatrist who advises patients on end-of-life decisions.
“It is,
in my opinion, a false sense of security,” Terman said.
That
may be especially true for the 2.2 million people who
live in long-term care settings in the United States. People with dementia are
most likely to die in nursing facilities, according to new research from
Duke University and the Veterans Affairs Boston Healthcare System.
“If
you’ve got the resources, where you’ve got family and paid caregivers at home,
you’re all set,” said Dr. Karl Steinberg, a California geriatrician and hospice
physician who has written extensively about dementia directives. If you’re
living in a facility, he added, “it’s not going to happen.”
One key
question is whether patients with dementia ― or those who fear the disease ―
can say in advance that they want oral food and fluids stopped at a certain
point, a move that would hasten death through dehydration.
It’s a
controversial form of what’s known as VSED ― voluntarily stopping eating and
drinking ― a practice among some terminally ill patients who want to end their
lives. In those cases, people who still have mental capacity can refuse food
and water, resulting in death within about two weeks.
Many
states prohibit the withdrawal of assisted
feeding, calling it basic “comfort care” that must be offered. Only
one state, Nevada, explicitly recognizes an advance directive that calls for
stopping eating and drinking. And that’s via a little-known law that
took effect in October.
Critics
of such documents, however, say they could lead to forced starvation of
incapacitated people. The directives may be biased, reflecting a society
prejudiced against age, disability and cognitive change, said Dr. James Wright,
medical director of three long-term care facilities in Richmond, Va.
He’s
the lead author of a recent white paper advising
facilities not to honor dementia directives. Based on his years of clinical
experience, Wright said many people with dementia become content with their
situation, even when they never thought they would be.
“To
enforce an advance directive on someone who may have had a complete turnaround
on what they think of a life worth living is unethical and immoral,” Wright
said.
The
dementia directives published in the past few years are aimed at filling what
experts say has been a major gap in advance-care planning: the gradual loss of
capacity to make decisions about one’s care.
One
version, published in 2018 by Dr. Barak Gaster, a professor of
medicine at the University of Washington, has been downloaded 130,000 times
after it was mentioned in a New York Times story and continues to be retrieved
about 500 times per week.
“This
is an issue that people have really thought a lot about,” Gaster said. “They
worry about it a lot. They’re so eager and excited to have a structured
opportunity to make their wishes known.”
Traditional
advance directives focus on rare conditions, such as a persistent vegetative
state or permanent coma, Gaster said. “And yet the No. 1 reason a person would
lose ability is dementia,” he added.
In
addition to Gaster’s document, directives drafted in New York and Washington state have
drawn hundreds of users. The aid-in-dying advocacy group Compassion &
Choices released a dementia directive this
month.
As the
U.S. population ages, more people ― and their families ― are grappling with
dementia. By 2050, nearly 14 million Americans aged
65 and older may be diagnosed with Alzheimer’s disease.
“We are
right now experiencing the very first upswing of the giant wave of dementia
that’s heading our way,” Gaster said.
Saran
is on the crest of that wave. Divorced, with no close family, she turned to
Kendal ― with its 236 independent units and 84-bed health center ― as her final
home. During her four years there, she has noticed some decline in her mental
clarity.
“Even
some of the simplest mathematical problems, like even seven times seven, I
can’t think of it now,” Saran said.
Still,
she is able to manage her affairs. She cooks her own food and cares for her
three cats ― Squeaky, Sweetie and Pirate, a one-eyed tabby. A longtime
Buddhist, she often drives to a nearby monastery to practice her faith.
In late
summer, Saran invited visitors to her small cottage at Kendal, where tapestries
hang on the walls and bookshelves are filled with tomes on religion, death and
dying.
Frontotemporal
dementia affects about 60,000 people in the
U.S., and patients often die within seven to 13 years, but
Saran’s disease appears to be progressing more slowly than expected.
“I
think I have great capacity,” said Saran, who wears her silver hair long and
favors jeans, linen shirts and turquoise jewelry.
She
chain-smokes, lighting up the Seneca cigarettes she buys for $3 a pack from a
nearby Indian reservation. She thought about quitting but decided it wasn’t
worth the effort and continues to indulge her habit. “If you had my diagnosis,
wouldn’t you?” she said.
When
Saran was hospitalized after her strokes, she suddenly understood what losing
her abilities might mean.
“I
realized, oh, my God, I might get stuck in a situation where I can’t take any
independent action,” she recalled. “I better make sure I have all my paperwork
in order.”
She was
stunned to learn it might not matter, even after her local lawyer, Chuck
Guttman, drafted health care proxy documents and a power of attorney.
“I
thought this was it,” she said. “I thought I’d move here and everything was
taken care of, everything was settled. And now it’s not.”
Laurie
Mante, Kendal’s executive director, declined to comment on Saran’s situation,
even when Saran authorized her to do so.
“We
recognize the great complexity in balancing our residents’ wishes with what is
required of us,” Mante wrote in an email. “We have a dedicated team who works
to balance those interests, and, when appropriate, work with our residents and
their families to seek alternative paths.”
Saran
said no one from Kendal has reached out to discuss an “alternative path.”
Not all
dementia directives include instructions about assisted feeding. Gaster said he
and his colleagues had “heated conversations” before deciding to leave that
issue off their popular document.
Instead,
he said, his option helps more people by addressing general goals of care for
each stage of the disease. The most important thing, he said, is for people to
consider their choices and share their desires with their loved ones.
The
debate, Gaster said, boils down to whether assisted feeding is “basic support”
or “a medical intervention that can be declined in advance.”
“There’s
still a very wide perspective of viewpoints on that,” he said.
Backed
by statute and practice, facilities say they are bound to offer food to all
residents willing to eat, and to assist with hand-feeding and fluids if a
person needs help.
The
controversy centers on the definition of those terms.
Wright
says late-stage dementia patients who show any interest in food ― a flick of
the eyes, grunting or gestures, opening the mouth ― should be fed until they
refuse it. Steinberg and others contend the default should be “don’t feed
unless they ask for it.”
It’s
always going to be “somewhat of a guess,” Wright acknowledged, about whether
hand-feeding someone is help ― or force.
“I’ve
not seen any guidelines that can faithfully give good, unbiased guidance,” he
said. “I feel that I personally can determine when food means something to my
patients and when it doesn’t.”
The new
crop of dementia directives was inspired, in part, by high-profile cases of
dementia patients who were spoon-fed against their apparent wishes. In Oregon and British Columbia, courts
ruled that food and water were basic care that could not be withdrawn.
But so
far, there’s been no court case that says a clear advance directive for VSED
“may or must be honored,” said Thaddeus Mason Pope, a professor at the Mitchell
Hamline School of Law who studies end-of-life decisions.
Pope
said he has heard of many people who move out ― or their families move them out
― of long-term care facilities to avoid assisted feeding in the last stages of
dementia.
Saran
has considered that, too.
“I
should probably just leave,” she said, although that would mean losing the
nonrefundable investment she’s already made. “I think about that every day.”
But
then what? Hospice might be a solution, but only if there’s room when she needs
it, she said.
Saran
said her situation should be viewed as a cautionary tale. She wishes she’d
asked more questions, insisted on answers about exactly how she would die once
her dementia progressed.
“I
didn’t realize I was signing away my right to self-determination,” she said. “I
am appalled that my future demented self takes precedence over my competent
current self.”
JoNel
Aleccia: jaleccia@kff.org, @JoNel_Aleccia
Heidi
de Marco: heidid@kff.org, @Heidi_deMarco
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