Diagnosed with dementia, she documented her wishes for the end. Then her retirement home said no.

Susan Saran, a longtime Buddhist, often drives to a nearby monastery to practice her faith. Saran is fighting her retirement community over her right to determine how she will die — even though she has made her wishes known in writing. (Heidi de Marco/KHN)

By JoNel Aleccia

 

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 had held for three decades. Then tests revealed the grim diagnosis.

“It was absolutely devastating,” Saran, 64, said. “It changed everything. My job ended. I was put out on disability. I was told to establish myself in an [extended] community before I was unable to care for myself.”

So Saran uprooted herself. She sold her home in 2015 and found a bucolic retirement community in rural New York whose website promised “comprehensive health care for life.”

And now, she is fighting with that community over her right to determine how she will die — even though she has made her wishes known in writing. Similar fights could ensnare millions of Americans with dementia and similar end-of-life directives 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 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 her New York continuing care retirement community, Kendal at Ithaca, where she has spent more than $500,000 to live, 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. No provision exists, the letter said, for “decisions to refuse food and water.”

When asked about Saran, Kendal’s executive director, Laurie Mante, wrote in an email: “We recognize the great complexity in balancing our residents’ wishes with what is required of us. 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.”

It’s a cruel quandary for Saran and other Americans who have turned to dementia directives that have been created in recent years. Even when people document their choices in these directives — while they still have the ability to do so — no guarantee exists that those instructions will be honored, said 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 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 Karl Steinberg, a California geriatrician and hospice physician who has written extensively about dementia directives. If you’re living in a facility, he said, “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 is a controversial form of 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 James Wright, medical director of three long-term care facilities in Richmond and 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 offered 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 Barak Gaster, a professor of medicine at the University of Washington, was downloaded 130,000 times after being 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 said.

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 in December.

As the U.S. population ages, more people — and their families — are grappling with dementia. By 2050, nearly 14 million Americans 65 and older may be diagnosed with Alzheimer’s disease, according to the Alzheimer’s Association.

“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 United States, 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 was not 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.”

Mante, Kendal’s executive director, declined to comment on Saran’s specific situation, even after Saran authorized her to do so. “As with all of our residents,” she wrote, “we are working diligently to provide for an enriching, quality living environment that honors her independence and wishes.”

Saran said no one from Kendal has yet 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 is always going to be “somewhat of a guess,” Wright said, 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 growing efforts to use advance directives were inspired, in part, by high-profile cases of dementia patients who were spoon-fed against their apparent wishes. In Oregon and in British Columbia, courts ruled that food and water were basic care that could not be withdrawn.

But so far, there has 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 already has made. She thinks about moving out every day, but then what? Hospice might be a solution, but only if there is room when she needs it, she said.

Saran said her situation should be viewed as a cautionary tale. She wishes she had asked more questions before moving into her community and insisted on answers about 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.”

Kaiser Health News (KHN) is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

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Diagnosed with dementia, she documented her wishes for the end. Then her retirement home said no.

Dementia Patient At Center of Spoon-Feeding Controversy Dies

Bill and Nora Harris

An Oregon woman with Alzheimer’s disease, whose husband claimed she was kept alive with spoon-feeding against her written wishes, has died.

Nora Harris, 64, died early Wednesday at the Fern Gardens senior care center in Medford, Ore. Her husband, Bill Harris, said the death marks the end of an eight-year battle with the progressive, debilitating disease, which included an unsuccessful court fight to withdraw all food and liquid.
“It is a blessing and a relief,” he said.

Nora Harris, a librarian and scholar who was diagnosed with early-onset Alzheimer’s disease at age 56, had drafted an advance directive that called for no measures to prolong her life, including artificial nutrition and hydration.

Her husband contended that the document covered oral assisted feeding, too. He went to court last year to force staff at the center to stop spoon-feeding Nora, saying the practice violated his wife’s wishes and her advance directive.

“Nora never wanted to live like this,” said Bill, 76, a retired tech worker.

However, a local judge denied his request, siding with the state’s long-term care ombudsman who said state rules to prevent abuse required the center to offer residents three meals each day and provide help eating, if needed. That practice continued in recent weeks, even as Nora’s kidneys failed and she became bed-bound.

“I had to struggle with everybody all the way through to the end to try and respect her wishes,” Bill said.

The controversy turned Nora Harris into a central character in an ongoing debate over advance directives and dementia. At issue is whether patients with Alzheimer’s and other progressive diseases can stipulate in advance that they want oral food and liquid stopped at a certain point, hastening death through dehydration.

It’s a controversial form of what’s known as VSED — voluntarily stopping eating and drinking — a small but growing 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, usually resulting in death within two weeks.

“The right to VSED is reasonably well-established, but it’s when a person isn’t competent that’s the issue,” said Paul T. Menzel, a retired bioethicist at Pacific Lutheran University in Tacoma, Wash., who has written extensively on the topic.

Unlike medical aid-in-dying, VSED doesn’t require a law or a doctor’s approval. But the question of whether it’s possible for people who can no longer actively consent to the procedure remains ethically and legally unclear. That’s especially true for patients who open their mouths to accept food and fluids, as Nora Harris did until her last days.

“VSED is a unique exit option,” 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. “This is probably the least discussed option. We don’t have statutes, we don’t have regulations, we don’t have a court case.”

Advocates for VSED contend that, with proper medical support, it can result in a peaceful death that allows patients control over their own fate. Critics say the practice amounts to torture and that it will lead to starvation of elderly, disabled and mentally ill people.

Advance directives that tell caregivers to continue or withdraw artificial nutrition and hydration provided through feeding tubes or IV lines are common. Most don’t mention assisted oral feeding, however.

Nearly two dozen states have laws that address assisted feeding, including many that specifically prohibit withdrawing oral food and fluids. Other states address only artificial feeding or are unclear or silent on the issue.

Just one state — Idaho — appears to sanction withdrawal of assisted feeding by a health care proxy “in accordance with a valid directive,” according to a July analysis compiled by Charles Sabatino of the American Bar Association.

But Idaho state law also prohibits any form of assisted suicide and requires “comfort care” for patients if artificial nutrition and hydration is withdrawn. It’s not clear whether a request to halt assisted feeding would be honored, said Robert Aldridge, a Boise lawyer who has worked for years to shape Idaho’s Medical Consent and Natural Death Act.

“Assisted feeding is a somewhat limited situation if the patient is not competent,” Aldridge said in an email.

With more than 5.5 million people living with dementia in the U.S., questions about stopping assisted feeding are becoming more common, said Judith Schwarz, clinical director for End of Life Choices New York, which advocates for medical aid-in-dying.

“Increasingly, this is going to be an issue,” she said. “The people I talk to are much more afraid of Alzheimer’s than they are of cancer. They are afraid of being stuck for years in a nursing home in a diaper.”

The doctor overseeing Nora Harris’ case, Dr. Karen Kahn, called the situation “one gigantic gray zone.”

On one hand, research shows that “feeding somebody with end-stage dementia will not prolong their life,” said Kahn. On the other hand, if a patient accepts food and swallows it, “it should be incumbent on them to feed her,” she added.

Bill Harris said he sat for three hours on Tuesday afternoon watching as Nora took tortured breaths. She died at 1:32 a.m., he said.

“What the court case did a year ago in July was they condemned her to the full gamut of the disease,” he said.

He said he’ll continue to push for changes to state law to allow people with dementia to stipulate in advance if they don’t want assisted feeding.

“From my perspective, the way the laws are written now, they do not respect people with dementia,” he said.

When Nora Harris was diagnosed with Alzheimer’s in 2009, she made arrangements to donate her brain and spinal cord tissue to the University of California-San Francisco, medical school for research.

“She didn’t want anyone else to go through what she did,” Bill Harris said.

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and its coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

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Dementia Patient At Center of Spoon-Feeding Controversy Dies

Knowing How Doctors Die Can Change End-Of-Life Discussions

Nora Zamichow says if she and her husband, Mark Saylor, had known how doctors die, they might have made different treatment decisions for him toward the end of his life.

Dr. Kendra Fleagle Gorlitsky recalls the anguish she felt performing CPR on elderly, terminally ill patients.

It looks nothing like what we see on TV. In real life, ribs often break and few survive the ordeal.

"I felt like I was beating up people at the end of their life," she says. "I would be doing the CPR with tears coming down sometimes, and saying, 'I'm sorry, I'm sorry, goodbye.' Because I knew that it very likely not going to be successful. It just seemed a terrible way to end someone's life."

Gorlitsky now teaches medicine at the University of Southern California and says these early clinical experiences have stayed with her.

Gorlitsky wants something different for herself and for her loved ones. And most other doctors do too: A Stanford University study shows almost 90 percent of doctors would forgo resuscitation and aggressive treatment if facing a terminal illness.

It was about 10 years ago, after a colleague had died swiftly and peacefully, that Dr. Ken Murray first noticed doctors die differently than the rest of us.

"He had died at home, and it occurred to me that I couldn't remember any of our colleagues who had actually died in the hospital," Murray says. "That struck me as quite odd, because I know that most people do die in hospitals."

Murray then began talking about it with other doctors.

"And I said, 'Have you noticed this phenomenon?' They thought about it, and they said, 'You know?

You're right.' "

In 2011, Murray, a retired family practice physician, shared his observations in an online article that quickly went viral. The essay, "How Doctors Die," told the world that doctors are more likely to die at home with less aggressive care than most people get at the end of their lives. That's Murray's plan, too.

"I fit with the vast majority of physicians that want to have a gentle death and don't want extraordinary measures taken when they have no meaning," Murray says.

A majority of seniors report feeling the same way. Yet, they often die while hooked up to life support. And only about 1 in 10 doctors report having conversations with their patients about death.

A family portrait of Nora Zamichow, husband Mark Saylor and their daughter, Zia Saylor. - Maya Sugarman/KPCC 

 

One reason for the disconnect, says Dr. Babak Goldman, is that too few doctors are trained to talk about death with patients. "We're trained to prolong life," he says.

Goldman is a palliative care specialist at Providence Saint Joseph's Medical Center in Burbank, Calif., and he says that having the tough talk may feel like a doctor is letting a family down. "I think it's sometimes easier to give hope than to give reality," Goldman says.

Goldman, now 35, read Murray's essay as part of his residency. He says that he, too, would prefer to die without heroic measures, and he believes that knowing how doctors die is important information for patients.

"If they know that this is what we'd want for ourselves and for our own families, that goes a long way," he says.

In addition, Medicare does not pay doctors for end-of-life planning meetings with patients.

Nora Zamichow wishes she had read Murray's essay sooner. The Los Angeles-based freelance writer says she and her husband, Mark Saylor, likely would have made different treatment decisions about his brain tumor if they had.

Zamichow says that an arduous regimen of chemo and radiation left her 58-year-old husband unable to walk, and ultimately bedridden in his final weeks. "And at no point did any doctor say to us, 'You know, what about not treating?' "

Zamichow realized after reading Murray's essay that doing less might have offered her husband more peace in his final days.

"What Ken's article spelled out for me was, 'Wait a minute, you know, we did not get the full range of options,' " she says.

But knowing how much medical intervention at the end of life is most appropriate for a particular person requires wide-ranging conversations about death.

Murray says he hopes his essay will spur more physicians to initiate these difficult discussions with patients and families facing end-of-life choices.

This story is part of a reporting partnership with NPR, KPCC and Kaiser Health News.

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Knowing How Doctors Die Can Change End-Of-Life Discussions