Not long after high school, Linda Lawson had an experience that stuck with her. While working at a nursing home southeast of Seattle, she spoon-fed residents with advanced dementia — the stage when they cannot recognize loved ones, feed or bathe themselves, or speak more than several words.
From that point on, Ms. Lawson was clear: She never wanted to live that way.
“She believed in quality of life over quantity of life,” said Heidi Hendrickson, her daughter.
Four decades later, Ms. Lawson began repeating stories and losing her place mid-recipe. She’d pour herself a cup of coffee and forget where she’d left it — then pour herself two more mugs and forget those, too. She missed her grandchildren’s birthdays and forgot the way to her sister’s house.
In 2014, at age 61, Ms. Lawson was diagnosed with dementia. When she was 64, her family moved her into a memory care unit after she wandered into the woods, where the police found her with only one shoe on. Within a few years of that, Ms. Lawson could utter only a string of unintelligible sounds and had lost the ability to feed herself.
To keep her alive, her care team fed her three times a day. Nurses held her head up and spooned meals into her mouth — eggs and sausages, chicken and vegetables — sometimes waking her to do so. They were providing the very care Ms. Lawson had administered decades earlier and hoped never to receive.
At times, she bowed her head and pushed herself away from the table. Her husband, Stan Lawson, and Ms. Hendrickson took these signs to mean she did not want to eat. It was painful for the family to watch her slowly deteriorate, and they didn’t like seeing her force-fed.
Although Ms. Lawson had previously expressed her preference not to live with advanced dementia, she hadn’t formalized those wishes in a written advance directive, a document that would tell caregivers to withhold food and water once her dementia reached a late stage. Without this, the family wasn’t sure what they could do. But they knew Ms. Lawson’s dementia would progress until she died. They also knew she wouldn’t want to prolong that process.
The family began looking for an offramp. During a meeting with Ms. Lawson’s primary care doctor, they explained the situation: Ms. Lawson spent most of her time in a wheelchair, staring at her knees and often refusing food.
“We were never interested in prolonging her life just for the sake of prolonging her life,” Ms. Hendrickson remembered telling the doctor. “We wanted her to just be happy and comfortable.”
The doctor, who was not employed by the memory care unit, had a suggestion. She had recently read a paper that put forward a new approach, called “minimal comfort feeding,” in which providers stop scheduled feedings and instead offer dementia patients just enough food and liquid to ensure comfort, and only when the patient shows signs of hunger or thirst. The idea was that someone with advanced dementia with no interest in food, or limited interest, might be allowed to die once they begin to refuse enough hydration and calories to sustain them.
Limiting food and water has been used to hasten death in people dying at home since long before it had a formal name. But to accelerate decline this way for people with advanced dementia, whether their deaths are imminent or not, is uncomfortable territory for many.
For Ms. Lawson’s family, though, it felt right. By then, Ms. Lawson had lost almost 40 pounds and showed little interest in food or anything else. The standard approach, which involves intensive work to ensure a patient gets enough daily nourishment to survive, can keep late-stage dementia patients alive for several years. Minimal comfort feeding was a middle ground: honoring a person’s desire for an intentional and dignified death while also keeping them more comfortable than withholding all food and water might.
Well-Fed, By Law
Dementia affects more than six million Americans, or about one in 10 adults over age 65, according to the National Institutes of Health. And the number of new cases per year in the United States is projected to double from about half a million in 2020 to more than a million in 2060, as more Americans live into old age, when dementia risk is the highest.
About half of Americans with dementia die in nursing homes, according to research from scholars at Duke University and Harvard. But the patients and their families may have very little control over what those deaths look like.
Some research has suggested that only about a third of American adults, or fewer, have advance directives for end-of-life care, let alone documents addressing feeding specifically. In rare cases, some people write directives requesting that providers withhold all nutrition and hydration once they reach late-stage dementia.
These directives exist in a legal gray area, and few medical facilities will honor them.
Min An, the chief operating officer of Kline Galland, a Seattle nonprofit that offers senior care, said the law restricted her ability to observe patients’ wishes regarding feeding. Long-term care facilities participating in Medicare and Medicaid are required to provide residents with at least three meals a day, and must report residents’ weight loss and ability to perform daily activities to the Centers for Medicare and Medicaid Services.
“It is our responsibility to offer food,” Ms. An said, referring to the federal requirements. Failure to do so can raise red flags, prompt inspections, incur financial penalties and lower a nursing home’s federal performance ranking. “Regulation is always reminding us that we’re here to protect our seniors,” she said.
While minimal comfort feeding is just beginning to be studied, there is more research on the full denial of food and water — a practice that raises thorny ethical issues that have divided clinicians and researchers. Some research finds that there is an emotional toll to denying food and water and that it’s unfair to ask nursing staff to ignore patients’ hunger and thirst, let alone contribute to the acceleration of their deaths.
The researchers Mercedes Bern-Klug and Meredith Levine led a study documenting nursing staff members’ reluctance to fully withhold food and drink. Many participants feared doing so would isolate residents at meal times, which are critical moments of human interaction, and burden already understaffed nursing teams. One study participant called it a sin to walk by hungry patients. Some religious traditions view feeding as a moral obligation, even at the end of life.
Ms. Bern-Klug, a social work professor at the University of Iowa, said nurses “take their work seriously,” and fully denying food and water to patients is “not what they signed up to do.” While some patients are late enough in their dementia as to be nonresponsive, others may still be enjoying and requesting food and may not remember writing a directive to withhold it. “Which person do you listen to: the person who had capacity once and made this decision that they wouldn’t want to live this life, or the person with dementia, who may seem very, very happy with the life that they have?” asked Dr. Eric Widera, a professor of geriatric medicine at University of California, San Francisco.
An Alternative Approach
Dr. Hope Wechkin, a hospice and palliative care doctor in Kirkland, Wash., has observed many people struggle with the dilemma of how to feed — or not feed — patients with advanced dementia.
She noted that while many doctors are willing to withhold interventions like surgery or CPR at the end of life, feeding is largely considered nonnegotiable and is not treated like a medical intervention. “It’s so in us to nurture by feeding,” she said.
But Dr. Wechkin saw the need for an alternative to unwanted regular feeding. In 2023, after receiving a call from a family who wanted help letting a woman die peacefully, Dr. Wechkin proposed a compromise: The nursing staff could provide small quantities of food and liquid if the patient signaled she wanted it, enough to keep her comfortable while still allowing her to die. Everyone agreed without protest — providers and family — and the woman died shortly afterward.
The experience led Dr. Wechkin to formalize the approach. In February 2025, she and her co-authors published a paper introducing the concept of minimal comfort feeding.
Dr. Patrick Clary, a palliative care doctor at Riverside Rest Home, a long-term care facility in Dover, N.H., described the protocol as a revelation for himself and his colleagues. He had previously seen the issue as “black and white,” he said. “Either you don’t feed them or you feed them to sustain them.” Aligning feeding with comfort felt like a useful alternative, he added.
When Dr. Clary presented the approach to his ethics committee, the members, including nursing assistants, were willing to try it with their patients. Some committee members were even moved to modify their own advance directives to explicitly ask for minimal comfort feeding, he said.
A few months after Dr. Wechkin’s paper came out, Ms. Lawson, the Washington woman with dementia, began declining more rapidly. Ms. Lawson’s doctor knew of Dr. Wechkin through the medical community and connected her to Ms. Lawson’s family to answer their questions.
The family — Mr. Lawson, Ms. Hendrickson and her two brothers, Seth and Jonas Lawson — met at a local pub to discuss minimal comfort feeding. They worried it might be painful, but Dr. Wechkin had described a peaceful death, similar to what occurs after stopping dialysis, where patients often grow tired and drift into unconsciousness before dying.
The family decided it was the right approach for Ms. Lawson. Shortly after, they piled into a room at Ms. Lawson’s nursing home, and with Dr. Wechkin, outlined a plan.
“The care facility balked,” Ms. Hendrickson said. Though they didn’t provide a reason, nursing homes often fear malpractice suits and penalties from regulators. (Providers and administrators at Ms. Lawson’s facility declined to comment.) According to the family, they refused to transition Ms. Lawson to minimal comfort feeding and threatened to call Adult Protective Services if Ms. Hendrickson administered the care at home. “Bring it on,” Mr. Lawson remembered saying in the meeting.
Ethical Quandaries
Minimal comfort feeding “is another frontier,” said Dr. Widera, the U.C.S.F. professor. But, he added, the idea is “loaded with ethical quandaries.”
Many providers say that feeding by default is deeply embedded into our culture and our medical practices. And a body of research suggests comfort is inherently difficult to measure, especially for those who cannot verbally communicate their needs. Some doctors worry about whose lives will be deemed worth sustaining and if some families might prioritize their own needs — emotional, financial and otherwise — over those of the person with dementia.
Minimal comfort feeding was designed to be humane, but some critics have questioned whether it is. Wesley J. Smith, the chair at the Discovery Institute’s Center on Human Exceptionalism, a conservative public policy think tank, has criticized Dr. Wechkin’s idea as slow starvation, which many would deem too cruel for pets, let alone people, he said. As a society, “we have been putting an awful lot more energy into making sure death happens than providing care,” he said, adding that food and liquid should be viewed as essential care, not optional medical treatment.
Dr. Jim Wright, the former chair of the Post-Acute and Long Term Care Medical Association’s ethics committee, fears that ending the life of someone with dementia reflects the bias that the lives of those who are disabled are worth less. “It’s rare that someone, even in the depths of debility, feels that their life is worth so little that they want to die,” he said.
Last June, Ms. Lawson’s family took her out of the memory care unit and brought her to Ms. Hendrickson’s house to stay. There, Ms. Hendrickson began to do what the facility would not: monitoring her mother’s hunger and thirst cues, like agitation and dry mouth. Rarely did Ms. Lawson want more than a few bites. Some days, she clenched her jaw tight. But that wasn’t always true. One day, her husband stopped by with a milkshake. “For whatever reason, she wanted that milkshake,” Ms. Hendrickson said, “So we’re like, ‘OK, have at it.’”
About a week in, Adult Protective Services called Mr. Lawson. As promised, the care home had filed a report of elder neglect. Mr. Lawson expressed that his wife’s well-being had always been his top concern. He’d stopped traveling for work once Ms. Lawson started declining in order to be close to her. He’d brought her to countless holiday and family celebrations over the years.
When he explained that his wife was staying with his daughter, the A.P.S. worker called Ms. Hendrickson to inquire about allegations that the family wanted to stop feeding Ms. Lawson. Ms. Hendrickson detailed the protocol and emphasized that her mother could eat when she wanted. The A.P.S. worker scheduled a visit to see Ms. Lawson, but then said she had car trouble and never got there. Jessica Nelson, a spokeswoman for the Washington State department overseeing A.P.S., said the department cannot share details about individual A.P.S. cases due to patient confidentiality.
In the warm June days that followed, friends and family filled Ms. Hendrickson’s house. Ms. Lawson had always been the life of the party and had a vast, spirited network of family and friends outside of Seattle. Her guests now kept her company and stayed for a glass of wine. “Little House on the Prairie,” Ms. Lawson’s favorite show, played in the background, and Ms. Hendrickson propped her mother up on pillows so she could see what was going on. She seemed aware of the people who loved her and who had come to say goodbye, even if she couldn’t recognize them. She reached out and touched one visitor’s cheek, Ms. Hendrickson remembered.
Several days later, Mr. Lawson was taking care of his wife when he noticed her breathing growing labored and irregular. It was nighttime, and he woke the other family members, who gathered around her bedside, held her hands and soothed her. “She never wanted to die alone,” Ms. Hendrickson said. “And so she didn’t.”
Kate Raphael wrote this article while at the Investigative Reporting Program at the University of California, Berkeley, Graduate School of Journalism. It was reported through a grant from the SCAN Foundation. She is currently a reporter at The Long Beach Post and a U.C. Berkeley California Local News Fellow.
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