She Didn’t Want to Live With Advanced Dementia. So Why Was She Being Kept Alive?Linda and Stan Lawson were married for more than 50 years. Credit...Chona Kasinger for The New York Times
Some consider the regular feeding of late-stage dementia patients to be nonnegotiable. Others see it as extending life unnecessarily.
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By Kate Raphael
Kate Raphael has spent the past three years reporting on complex end-of-life issues.
April 30, 2026
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.
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.
Heidi Hendrickson and her family did not want to prolong her mother’s life through feeding.Credit...Chona Kasinger for The New York Times
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.
Image
A family photo of the Lawsons sits on the floor of Ms. Hendrickson’s home.Credit...Chona Kasinger for The New York Times
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.
Image
Dr. Hope Wechkin published a paper proposing the minimal comfort feeding protocol in 2025.Credit...Grant Hindsley for The New York Times
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.
Image
Credit...Chona Kasinger for The New York Times
Image
Credit...Chona Kasinger for The New York Times
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.
==
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.
Image
A family photo of the Lawsons sits on the floor of Ms. Hendrickson’s home.Credit...Chona Kasinger for The New York TimesThese 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.
Image
Dr. Hope Wechkin published a paper proposing the minimal comfort feeding protocol in 2025.Credit...Grant Hindsley for The New York TimesDr. 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.
Image
Credit...Chona Kasinger for The New York TimesImage
Credit...Chona Kasinger for The New York TimesLast 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.
==
837 comments on She Didn’t Want to Live With Advanced Dementia. So Why Was She Being Kept Alive?
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Jay El commented April 30
J
Jay El
North Carolina ·
April 30
“the person with dementia, who may seem very, very happy with the life that they have?”
Decades of working with Dementia patients and I’ve never met one very, very happy with their condition. The “expert” who argues this is delusional.
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Brandon Pertell commented April 30
B
Brandon Pertell
Writing, MA ·
April 30
Minimal comfort feeding was the human and humane default for millennia. It’s the medical system that messed this one up, forcing three meals every day primarily so they can create a paper trail. Blessings to families who accept that their loved one is dying and believe the closed mouth, shaking head, and pulling away just as much as they believe the desire for a milkshake.
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elle commented April 30
e
elle
New England ·
April 30
From the article: “Dr. Jim Wright, the former chair of the Post-Acute and Long Term Care Medical Association’s ethics committee. “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.”
How does he know this?
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Commenter commented April 30
C
Commenter
Midwest ·
April 30
Something that is missing here is that in hospice, it is completely acceptable to not force feed people. In fact comfort feeding or "pleasure feeds" is the more the norm. Alzheimer's Disease is a terminal condition. They are not "recovering." Further, as the body begins shutting down from disease processes, adding food and hydration can actually worsen the way they feel, add a burden to their organs which are less able to process and move the substances where they need to go, and can make suffering worse. Case in point, artificial hydration, aka IVs, can add to fluid overload of the lungs, pneumonia, congestive heart failure and feelings of distress from not being able to breathe. Tube feeding is equally responsible for fluid overload plus aspiration pneumonia as the fluids back up the esophagus. This retired ICU nurse who has worked extensively with palliative care and hospice has put in her own advanced directives: do not feed me artificially if I have a terminal condition, and do not feed me by mouth if I do not appear to want it. Quality of life to me includes the enjoyment and ability to eat and drink by mouth. (My husband and children have all been informed well in advance in order for them to have time to clarify.)
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AnnH commented April 30
A
AnnH
NY ·
April 30
My husband who had Alzheimer’s died before he reached the final heartbreaking stage described here. It was a blessing. I admire the great care, tenderness and love with which her loved ones surrounded this woman. We can spend billions on wars, but give no care to comforting people afflicted with dementia. We can and must do better. My deepest condolences to her family.
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Ellen commented April 30
Ellen
Ellen
W'burg ·
April 30
So many thoughts - We are dealing with similar although my mother's dementia is enough to put her in memory care, but she is still strong in body and worried that we will deplete all our finances taking care of her.
I met a lady on the train about a year ag. We spoke about dementia - she had recently been diagnosed with it and was in an experimental medication. She said she intended suicide by not eating once she got to an advanced stage. She was a Minister
My friend Gary, who died almost exactly a year ago. He went to have kidney surgery in July. Rough recovery, during which time he was told he had cognitive decline and they wouldn't let him go home because he lived in a remote area.
We'd speak on the phone a few times a week - he just wanted to go home, be with his books and model cars, and have a drink. They never let him go home - he died suddenly in the care facility. I wish they let him go home, have a drink, and if he died, at least he had the comfort of being home. Poor Gary. Poor us.
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LHH commented April 30
L
LHH
Monmouth County, NJ ·
April 30
My mother had a heartbreaking descent into dementia at age 90. Shortly before she died, I was summoned to meet with a Hospice nurse at the Memory Care residence she had resided in for 9 months. The meeting was to decide what measures to take when she lost the ability to swallow, which they felt would happen within the next month or so. I was grateful my mom had been very clear with me when she was initially diagnosed with mild memory loss: No life-prolonging measures, including nutrition.
But before we had to face that, a week later she began pursing her lips, tightly clenching her teeth together when aides tried to feed her. Given that she was completely gone/blank, I was incredulous that she somehow found something within her to exercise control over dying.
Before visiting her a few days later, I recalled a conversation during which she told me she’d like to “go out” with a glass of wine in her hand. I had jokingly asked, white or red? She gave it serious thought and declared that the occasion would call for white. I grabbed a bottle of white wine and a medicine dropper to bring. She didn’t open her eyes, that was a first, but when I put the dropper in the corner of her mouth and told her it was wine, she relaxed her lips and swallowed the wine as fast as I could fill the dropper and squeeze it in. I tried again that evening before heading home but she wasn’t interested. At 1am, I got the call that she passed away. I love that she went out with a “glass of white.”
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Carol Barker, PhD. commented April 30
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Carol Barker, PhD.
Western Ma ·
April 30
I regret having pushed my ninety two year old father to eat at the end of his life. No food was appetizing to him , and I kept bringing him new things in the hope that blueberries or milk chocolate or a piece of cheese would entice him. My mother begged and pushed him to drink protein supplements. I guess we really did not understand or accept that he was dying.
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walter d commented April 30
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walter d
new york ·
April 30
I was 60 years old, when I got DNR tattooed on my left side of my chest, I am now 75, I keep a card with me. I worked in Assisted living for 20 years as a chef. They will keep you alive forever if they can. You're a commodity, worth money. Good Luck Walter d.
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EE commented April 30
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EE
Flyover Country ·
April 30
I was a nurse and now volunteer in a hospice. This is a humane and sensible approach. There is a movement which I hope becomes adopted: instead of DNR (Do Not Resuscitate), it is called AND: Allow Natural Death. So much more appropriate.
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Whippi commented April 30
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Whippi
Montreal ·
April 30
My condolences to Mrs. Lawson's family.
I'm at the age where this is of a concern to me and my wife. Living in a country that allows dying with dignity through a Medical Assistance in Dying (MAID) program means ourselves and our family won't have to experience what Linda and her family had to suffer.
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Eve commented April 30
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Eve
SF ·
April 30
When my grandmother was 100 years old and near death she started refusing food. They put her in the hospital to feed her for almost a week. I still can’t get over it.
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Nope commented April 30
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Nope
Seriously ·
April 30
When our beloved dog died, we put her down with the family sitting with her and offering love and comfort. When my father died, I found myself wishing we could do something similar to what we did for our dog. End of life Care in this country is a travesty. I hope by the time I’m ready to go that will change, otherwise, I hope I’m able to do it myself.
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Joe commented April 30
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Joe
Montana ·
April 30
Limiting food and water to hasten death is not an accurate description. Allowing a natural death by not providing enteral or parental feeding and hydration, respecting patient and family preferences is probably more accurate.
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Adrien commented April 30In reply thread
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Adrien
Australia ·
April 30
@elle Eaxactly. Dementia is a terminal illness like other terminal illnesses. There comes a point when the body knows it is dying. Processes shut down. Appetite is one of those. Forcing people to eat when they don't want to is cruel, the desire not to eat is most likely because eating is causing discomfort and not pleasurable. If one was hungry they would eat!
This Dr clearly doesn't know anything about palliative care and the dying process
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Zaphod B commented April 30
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Zaphod B
Boston MA ·
April 30
We as a society need to embrace ‘quality’ of life, not just ‘quantity’ of life.
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Suzannah commented April 30
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Suzannah
SC ·
April 30
As a psychiatrist my experience working in U.S. institutions (nursing facilities and state hospitals) has been that the majority of family members having a legal say in the long-term care of their supposed loved ones would rather vote and preach about how others ought to be restricted in their options while neglecting their own responsibilities in that realm. It is not nearly so heart-breaking and infuriating to see people living in nursing homes as it is to see them denied timely death there. I cannot tell you the number of people whose minds and independence in feeding, speaking, toileting and clothing themselves departed long, long ago who are snatched unnecessarily from the jaws of death when it arrives in the form of pneumonia or sepsis because the person granted power over them fears being deemed complicit in death's work. How many people, long departed in all but respiration, plodding heart and aching body, finally, FINALLY, die hooked up to lines and tubes and having cracked ribs from the ridiculous efforts of staff to revive a body long seeking to die? Those with the power to ease suffering but who, instead, choose to prolong it are among the lowest of "caregivers" and "guardians" and ours is an uncivilized nation.
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Bobo commented April 30
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Bobo
Maryland ·
April 30
Both my lovely, wonderful parents died from Alzheimer’s. One died at age 84, the other was 91. I could not have loved them more. They were in terrible health at the end of their lives. I’m sure neither of them would want to continue their lives given their nonexistent quality of life. It was hard to see them die; it was harder to see them alive at the very end with no hope life would improve or offer meaning.
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littlescallop commented April 30
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littlescallop
Somewhere in the South ·
April 30
A palliative care doc once said "your mother isn't dying because she's not eating, your mother is not eating because she is dying".
Dementia is a terminal illness. Why are we insisting on keeping people with dementia alive?
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Samantha commented April 30In reply thread
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Samantha
Washington DC ·
April 30
@Commenter Another hospice nurse here. We call this approach "pleasure feeing." Basically, food that the patient might like (ice cream 3x/day, yay!) is offered regularly and if the patient eats it, that's fine and if they don't, that's fine too. People with dementia still have a right to self-determination. People at this stage in their disease are not really eating for nutrition, it's all about pleasure and quality of life.
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Commenter commented April 30In reply thread
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Commenter
Midwest ·
April 30
@Eve I am very fortunate that MY grandmother was adamant that she not be hospitalized ever again, no matter what. She understood that could hasten her death and signed paperwork to not transport her so her Assisted Living could be off the hook. She started eating only ice cream and then stopped eating at age 101 and we didn't force her to take in anything. She died about a week later, peacefully in her bed. We were holding her hand.
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Daughter commented April 30
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Daughter
Mid-Atlantic ·
April 30
The body’s refusal to eat is a natural progression towards the end of life. After remarking dejectedly that he couldn’t even remember what he read anymore, my 90 year old father began slipping pills and food in his pockets because he no longer wanted to eat. When I protested that he would die if he continued this way, he just looked at me wordlessly. After I understood what was happening following a meeting with hospice, we continued having regular mealtimes with my Mom in their independent living apartment, but Dad’s meals were light, soup, crackers and protein shakes, until he insisted that he could eat no more. We continued that way for two months gradually reducing at his direction to a few bites each meal until he could no longer swallow any solid food. I also gave him a few drops of liquid vitamins in water and always made sure he was hydrated. Then we engaged hospice care for several weeks where he received water along with the morphine, until he could no longer swallow anything. He asked that we be nearby and we were with him until his transition. When I went down to let the hospice nurse in at 3am, I heard my father’s voice above me say my name, and “I’m free. “ I felt some peace knowing that we gave him a good death. The hospice nurse said she could tell that he had had a peaceful passing. Maybe she said that to every family but I know it was the truth.
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Kim commented April 30
Kim
Kim
New England ·
April 30
Is it a religious concept that makes people feel it is wrong to let someone die with dignity? I understand people wanting to be conscientious, but death is coming for all of us. It's not about your comfort with someone else's path. It should be up to them. Why force people to suffer when they never would have wanted that?
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True Blue commented April 30In reply thread
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True Blue
Wandering ·
April 30
@John Cato I do not want the Catholic Church or any religion imposing on my life or death. For those who do that's fine but I'm for freedom of choice when it comes to my healthcare.
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Lisa commented April 30
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Lisa
Bowdoinham, Maine ·
April 30
When my grandfather was a month away from his 95th birthday, he called a meeting of his caregivers at the nursing home where he lived to tell them, “I’m done. I’m going to stop eating so I can die, and I hope no one tries to stop me.” It was heartbreaking to hear, because I loved my grandfather, but I loved him too much to protest. To their credit, the staff of the nursing home did not protest, but suggested that he at least drink water, so his death would be less painful. I was with him until the end, and he was indeed in peace and appeared to be in no pain. I am grateful that he still had all his faculties, so he could make that decision and express it clearly. It’s so sad that the woman in the article had not put that wish in writing. I applaud her family for making the decision to take her home to die in peace — that was a massive undertaking and an extraordinary act of love.
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Marty Derrow commented April 30
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Marty Derrow
Florida ·
April 30
I am also a physician, cared for geriatric patients most of my career and am now geriatric myself. Cessation of eating and drinking near the end of life is normal, expected and humane. End of life wishes stated in an advance directive should be honored, that's why we encourage their use. No one should be "forced" to receive nutrition in this scenario.
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Mari commented April 30
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Mari
Left Coast ·
April 30
“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.”
Malarkey! That’s his opinion, he doesn’t know what people with dementia and Alzheimer’s want unless he asks each of the individually! WHY is it that we, Americans are so afraid of death with dignity? It is a personal choice. No one should have to suffer living a life they would not have chosen.
We need to allow people to make their own choice. Period.
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Dr. Zen commented April 30
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Dr. Zen
Occidental, Ca ·
April 30
My father was a MD. I am a MD. We had a pact to "pull the plug", or the equivalent - if it came to it. Death is not hard, life is. It is a very personal decision.
May all Beings be Free from Harm.
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Alex commented April 30
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Alex
camas ·
April 30
Some people think there is nothing worse than death, but that is not true. Being kept alive, in a persistent confused state, with zero hope of recovery, is worse. I definitely don't want that, and I don't know anyone who does.
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Ready to ROC commented April 30
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Ready to ROC
Rochester, NY ·
April 30
“It’s rare that someone, even in the depths of debility, feels that their life is worth so little that they want to die..."
Patients in the throes of advanced dementia can't express whether they would like to live or not, so this statement can't be evaluated at all. What I think happens is that the long-term-care industry sees patients as revenue streams, and don't want to participate in hasting a person's death and ending that particular revenue stream. Care teams provide care to the patients as directed, but facilities that refuse to allow a patient to die with dignity are doing it for financial reasons (fear of a lawsuit, loss of revenue, etc.). There is zero reason for anyone else's religious beliefs to butt into another person's life. If your belief system leads you to think your interpretation of God wants you to live to the bitter end no matter what...go for it, but don't make me live by your beliefs anymore than I'll try to make you live by mine. I support the Lawson's decision 100%. I had a similar experience with my mother who chose to die with dignity rather than wait for the bitter end of her terminal disease. She also died in her bed, surrounded by those who loved her, completely content and happy as she passed. I believe that's how God (however you interpret that term) wants us to go.
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Kingsley Kaminer commented April 30
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Kingsley Kaminer
Ormond Beach Florida ·
April 30
I am a hospice nurse. I also have a nearly 98 year old mom with dementia in an assisted living facility. Her quality of life is not great and she has few things she enjoys doing any more but she is not in pain, thankfully. Three points: My mom has little appetite (she can still eat independently when she is taken down to the dining room for meals but sometimes she refuses because she is just not interested in eating nor hungry) so while we always make sure food is available and set before her, we don’t force it or get into “food fights” with her. And we don’t worry about what she eats - any calories whether from ice cream or steak are good calories. Two: The body knows how to die. When someone is in the end stage of life, he or she is not hungry or thirsty. Three: Make an advanced directive! Before you are cognitively impaired or lack capacity to make your own decisions. Death is coming for us all and you are not going to avoid it. Discuss it with your family or whoever is your health care surrogate and be clear what you want.
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AM commented April 30
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AM
NY ·
April 30
Withholding food and water to someone who wants it is cruel, but force feeding someone is not?
We need to focus more on quality of life, not quantity. More ice cream and milkshakes or whatever people love should be the norm over Ensure. When someone is not going to get better, everything should be about comfort care. Those aides should take people outside to a garden instead of spooning in puréed tasteless food.
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Barbara commented April 30
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Barbara
California ·
April 30
Why oh why does this have to be so complicated? We can debate ethics and morals till the cows come home, to nobody's benefit. How about this: if the patient refuses to eat, honor that. If they seem interested in eating, honor that. Wouldn't that be the ultimate fulfillment of anyone's vision of doing the "right" thing?
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AS commented April 30
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AS
Colorado ·
April 30
Dementia is a terminal illness. I'll say it again for anyone going through the agony of seeing a loved one suffer with it. Dementia is a terminal illness. Like any terminal illness, it should be approached with kindness and dignity. I don't think it should be a radical idea to allow patients suffering from dementia to eat and drink what and when they want. When people with dementia start to refuse food and drink, that's usually a sign that it's time for them to die. We should allow people to do this peacefully.
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carr kleeb commented April 30
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carr kleeb
new mexico ·
April 30
The saddest part of this article is that it makes dying of cancer sound better than dying of dementia. If I have late-stage cancer, I could die at home with pain mitigation provided by hospice. If I have late-stage dementia, I may be force fed long-term for someone's profit.
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Vox Pop commented April 30In reply thread
V
Vox Pop
Boston ·
April 30
@elle
I know at least one person who would willingly "check out" if and when diagnosed with dementia or other such debilitating illness. I am just as sure there are others who feel the same way.
So, anyone who insists *everyone* wants to live (or be kept alive) for as long as possible, IS WRONG!
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Sanity is at a premium commented April 30
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Sanity is at a premium
NJ ·
April 30
This is a great article and will benefit many people. Both my parents died from advanced dementia. Mom ultimately lost the sensation of hunger. She could still communicate well. After weeks of being spoon fed, she said very clearly and very often that it felt like we were forcing her to eat when she felt full. The nursing home said there was nothing they could do and that she was physically fine but wouldn’t eat. We brought her home and began hospice care
At one rare moment of complete lucidity, she said “It’s strange — I never feel hungry or thirsty. I haven’t eaten for a few days. I feel fine. But how can a person survive if they don’t eat? I feel that I should, but I feel full and after a few bites it feels like being forced to eat when you’re already stuffed.”
I told her I understood, and that she should do what she felt comfortable with. We made sure she had plenty of her favorite foods always in sight, and encouraged her to eat at each mealtime, but stopped forcing. After a month of only occasional sips and bites, she passed.
Those who insist on full feeding miss the point that the patient may be feeling tortured by eating when they don’t want to. And the administration in this article that called protective services on a family that was honoring the mothers wishes, only caused them and the patient extra grief.
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CJ commented April 30
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CJ
USA ·
April 30
Imagine if we could legally give the same dignity and grace to our dying loved ones as we do to our cats and dogs.
I've never met a person who wants to be kept alive when there's no life left to be lived.
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LLL commented April 30
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LLL
US ·
April 30
I strongly disagree with the "ethics" expert who said that people in grave states of disability and illness don't really want to die. I saw my father in that state. He wanted to go and instead was kept alive in a nursing home for 2 1/2 years. Let's stop the insanity over end-of-life situations and provide everyone with options to end their life (or the life of loved ones) in humane ways.
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Just another old woman commented April 30
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Just another old woman
Louisville ·
April 30
Over a decade ago, my mother who was suffering from vernacular dementia broke her hip. Incapable of learning to walk again, she was confined to a wheelchair and moved to the back part of a room she shared with a woman who couldn’t leave her bed. My mom was miserable and then stopped eating. The home’s response was to feed her those sweet shakes that provide all nutrients. Such mixed feelings! Did I want to watch my mother die? Of course not. But the final 18 months of her life were brutal. Her dementia worsened; her bitterness became palpable and her cruelty- even to her beloved grandchildren- unbearable. Finally, her weakened body was overrun with infection. But then in the ICU, after an older doctor and I agreed that it was time to let her go, a younger one insisted that I was practically murdering my mother if I didn’t approve the blood transfusion that could potentially save her life.
Thank you for this article. This is an important discussion for all of us. My mother’s memory is now much more complicated for us all than it needed to be. Sometimes natural death, even if preventable, has its gifts.
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Sheryl commented April 30
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Sheryl
Boston ·
April 30
In a world where we would rather let women die than provide a much-needed abortion force feeding people to keep them alive when they would rather die, makes no sense
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Jeanne Bishop commented May 2
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Jeanne Bishop
Nor Cal ·
May 2
"Dr. Jim Wright, the former chair of the Post-Acute and Long Term Care Medical Association’s ethics committee . . . '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."
Who died and made Jim Wright God? Wright knows this how?
I don't care what Wright thinks and declares. My life is not about "worth."
My husband died over 32 years ago. He was dying from an aggressive cancer. He chose when he would die. He did so when he had had "enough."
I have a fatal diagnosis. I will also choose when and how I will die. I have no intention of sitting in a wheelchair in diapers, drooling on myself and unaware of my surroundings. I refuse to live that way, period. Not only do I have no intention of living with severe dementia, it is MY choice how and when to die. I knew two people with dementia who died long and tortuous deaths. I visited with each of them shortly before they died. That is not for me.
Besides not wanting a tortuous end, I believe it is wrong to use medical care and resources at end-of-life which should go to others seeking treatments and cures.
As for others' religious beliefs, no one will impose their rules on me. Even though today's gang-of-six on SCOTUS has gone rogue, it is still America, and there is supposed to be a separation between church and state. I hope sane people will vote accordingly.
Everyone dies. Everyone.
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Alice commented April 30
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Alice
FL ·
April 30
It seems to me that the caregivers who oppose reducing feeding based on cues from the patient are projecting their own needs and fears rather than addressing the patient's behavior. They are imposing views based on a limited knowledge of the patient - perhaps to the detriment of the patient and contrary to the patient's stated desire for end of life care.
If the decision can be made to end dialysis, why can't the decision be made to allow the patient to determine how much food and drink he or she wants?
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CC commented April 30
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CC
Central Coast ·
April 30
My 77 year old husband is currently in a rehab facility, and will be coming home tomorrow. His roommate, Ben, will be returning to assisted care. I don't know why Ben is there, I just know he's suffering enormously. Ben is a hundred years old. He has dementia, with few moments of clarity. I always smile and give him a cheery greeting, and he smiles back. Once, I chatted with him briefly, shook his hand, and thanked him for his WWII service. Ben was a seventeen year old ball turret gunner. Then the veil fell; his struggle to be lucid lasted only a couple of minutes. He sometimes shrieks in agony, or cries and moans, as nurses and aides scurry about trying to make him comfortable, shouting through his deafness. Keep him alive - gotta keep Ben alive. My husband, a former doctor, offers comfort during the long, hard nights when Ben is scared. This fine old man is being denied a good death. Strap him to his bed, feed him intravenously if necessary, but keep him alive. And for what? A doctor in the article said we tend to think the lives of those with disabilities aren't worth as much. Not true. They're worth everything. But Ben isn't living. He's dying, or at least trying to, and modern medicine won't let him. I wish this darling man Godspeed, and soon.
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Chris commented April 30In reply thread
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Chris
San Francisco ·
April 30
@elle that quote jumped out at me too. The Dr implies that his judgment is based on the secret wishes of the patient. In this case Linda was clear with her wishes. And yet he’s on the opposite side of this issue. So hypocritical.
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Maria commented April 30
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Maria
Portland Oregon ·
April 30
I am a speech-language pathologist who specializes in swallowing disorders, including end of life care ( hospice). Tube feeding in no way contributes to the well being of a patient with advanced dementia. It is minimally nutritive ( mainly hydrating), can lead to infection and does not prevent aspiration that leads to pneumonia.
We must allow the patient/ parent their autonomy ,even when refusing food and liquid.
For those who believe God wants us to do everything to remain on earth. Vatican II says heroic measures are not required if the body can no longer be of service to Christ.
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Done commented April 30In reply thread
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Done
usa ·
April 30
@Commenter. My sister and I had a truly horrible time at a New York hospital trying to get humane care for our uncle in the last days, even though we had legal right to direct his care.. He had stopped eating and was not conscious, and they hooked him up to an IV so they could charge more days in the hospital. They even were sneaky and when we asked for the IV to be discontinued, they hooked it up after we left each time. They also didn’t respond to any request to give him pain medicine when he looked uncomfortable and hardly gave him any of the tiny dose he was prescribed for the ending. Americans should be very afraid of being at the mercy of a for-profit healthcare and their desire to make as much money as possible on someone dying from dementia. Also, the possibility of having to be under the care of people with no hearts, hostile to family members advocating for their loved ones for decent care.
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Melinda commented April 30
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Melinda
Niskayuna, NY ·
April 30
Thank you. We are facing this issue currently and the clear information in this article is very helpful. Further, dementia has affected every member of my family who has lived past 60. I feel doomed, especially since I discovered that those who take antihistamines have a 50% greater risk of dementia; I’ve been on them my whole life. My husband and I are meeting with our lawyer in two weeks. The timing of this article is welcome.
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suz commented April 30
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suz
nyc ·
April 30
I have thought about this for a long time, and if I were ever to begin to have symptoms of dementia or Alzheimer's, I would not wait to act, although I'm sure that if it happened, I might feel differently. But knowing what goes on, especially in our country, as far as dignity and people's right to control their destiny—especially if they find themselves so ill that they really do not want to live, yet are forced to by law—I would arrange to end my life in a way that is as least painful as possible, but I would not wait until I know it would be out of my hands. Again, I know that sounds easy for someone to say who is not in that position, but I know that this is something I could not leave up to family, friends, or the governing rules as far as end-of-life choices.
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Anna commented April 30
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Anna
Virginia ·
April 30
The concern about whether a family will prioritize their own concerns at the expense of grandma seems misplaced to me. Having to care for grandma, who doesn’t know who they are, doesn’t appreciate the sacrifices the family is making, is not happy herself, and absolutely will never recover seems like prioritizing grandma at the expense of the rest of the family. This grandma plans to make sure that doesn’t happen to my kids and grandkids.
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Adam commented April 30
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Adam
New York ·
April 30
I have three relatives who chose to end their lives. Two men who were 95 without dementia, said they had enough and stopped eating mostly. One was in hospice, one in a nursing home. Another, a woman, with dementia committed suicide at a point she said that, if she did not do it then, she would be incapable of doing it later.
So misters Wright and Smith appear more interested in creating moral standards for everyone else than in simply listening to people. I live among all sorts of people and there are many, many who if they were in the "depths of debility" would want to be allowed to die. It's not rare at all that people, who everyone around them recognizes are at the end of their lives, would choose to die if only those around them would step back and allow it.
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MidwifeMary commented April 30
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MidwifeMary
NY ·
April 30
Exactly what we did for my mom. Dementia, hip fracture, back to my house for recovery. In short order, she stopped eating, barely drank. We kept her comfortable and surrounded her with our voices, our care, soft music and our love. We made it through seasons of her favorite show, Call The Midwife. She transitioned, in my house, surrounded by her loved ones who had her best interests at heart. We all think she had a very good death.
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yogahelps2 commented April 30
y
yogahelps2
MI ·
April 30
So Wesley J. Smith "criticized Dr. Wechkin’s idea as slow starvation, which many would deem too cruel for pets, let alone people"
My siblings and I deem it too cruel to force those who are ready to die to starve themselves to do it, as our dad did in 2007 at age 91. He did not have dementia but suffered 6 years in a nursing home with bad osteoarthritis and Parkinson's; his mind was good except when he was drugged up with painkillers. Ten years after his death we found a notebook in which our mother had recorded his refusal of food and water: 40 days without food, 7 days without water. We need euthanasia!
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Katy commented April 30
K
Katy
Vermont ·
April 30
One big thing that seemed to be missing in this was anything about the eldercare industry and how much money facilities get per head. They are incentived to keep people alive, even the nonprofit facilities through Medicaid billing or private funds.
My grandmother was fortunate enough to be in a private facility that was thousands of dollars a month!! They kept her on all sorts of meds in her 90s as she was declining and my mom and Dr aunt told them to take her off... They balked and tried to guilt my family about her comfort, but we held firm...what does a 96 year old need with anti depression pills or high cholesterol meds when she eats maybe 300 calories and sleeps 23 hours a day...she died this year at 102.5...and thats ok. It's ok to let people die when their body or brain is done with this world. Modern medicine can do many amazing things, comfort as we near death is one.
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JC commented April 30
J
JC
USA ·
April 30
“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.”
And he knows this …. How? Who has told him this? How many people with late stage dementia, urinating and defecating without control, unable to talk, walk, participate, hug, sitting all day staring at the floor, have said this to him?
I’ll wait.
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Janie commented April 30
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Janie
Baltimore ·
April 30
When my mother was in the last stages of dementia, My father and I were asked to approve a feeding tube, since she was refusing to take the food they were feeding her.
We refused to authorize it. We knew she would attempt to pull it out, and so she would have to be restrained. As awful as dementia is, to be restrained before you die seems to be the ultimate humiliation.
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Leann commented April 30
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Leann
St louis ·
April 30
I have worked with Advanced Dementia patients. It is eye opening. And there is a diversity of personalities, there are those who find such enjoyment in food that they will eat off the other persons tray. The person who doesn’t want to eat at all. The person who paces the hall for hours, working off calories they don’t eat, and the person who lays in bed and has to be coaxed to spend any time out of it.
We need to address the issues concerning what is owed and respectful and what is not. I worked at a state facility that was so worried about people falling (because they had been dinged in it) that they had 7 patients with 24/7 “sitters”. And guess what, many of them still fell. Because they can be impulsive, because even walking with someone, if they trip or stumble and lose their balance, you can’t always correct it.
They were travel medical aids and it probably cost $250,000 a year per person. With limited medical dollars we as a society need to decide what is ethically mandatory. And if it is ethically mandatory that a 90 year old is kept from falling, then isn’t it mandatory that a 40 year old have free insulin, or a 7 year old access to dental care? If healthcare is a right for the elderly, isn’t a right for everyone?
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Alla commented April 30In reply thread
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Alla
Texas ·
April 30
@LHH This is what compassion and love look like. Thank you for sharing your story.
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Mel commented April 30
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Mel
GA, US ·
April 30
My dad was in hospice care with advanced, terminal bone cancer. Although his mind was still active and alert, his body was ravaged and in constant pain. Near the end he refused to eat. He was done and wanted to die and told us so.
Our addled elderly dog is half blind, mostly deaf, and has mobility issues. But he loves to eat! We have decided that if that changes and he's no longer interested in food, that will be the time to help end his suffering.
Force-feeding those near the end of life seems needlessly cruel. Not wanting to eat seems to be a sure sign that they're ready to let go and a is natural way to do so. After reading this article I'll be sure to add "no force-feeding" to my DNR!
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MIssingMexico commented April 30In reply thread
M
MIssingMexico
Lower 48 ·
April 30
@elle
My father, at the age of 86, and declining rapidly after a fairly healthy and robust life, took matters into his own hands and ended his life on his terms. I don't think he wanted to die, so much as he saw the road ahead, and didn't want to take that path. I've always respected his decision.
After he died, I did a bit of research, and found that white men over the age of 85 was the second-highest category of suicide in the U.S.
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the passionate reader commented April 30
t
the passionate reader
Chapel Hill ·
April 30
It's interesting no one is talking about the financial benefit to the nursing homes. Keeping patients alive is their literal income. Why wouldn't they do so, especially for patients that are in most other ways undemanding?
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KI commented April 30
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KI
USA ·
April 30
It can be extremely distressing to families when a patient has requested no food or water near the end and it is actually carried out. It is very, very sad to see a loved one enduring that. I think the middle ground of comfort feeding / hydration is an excellent idea.
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Autumn commented April 30In reply thread
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Autumn
Oakland, CA ·
April 30
@Jay El Eating and drinking when they’re hungry or thirsty, vs force feeding.
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Cindy commented April 30
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Cindy
Seattle, WA ·
April 30
Comfort feeding seems like just plain common sense. Offer them food and drink, but if they don't want to eat, why force them to? Someone in the article likened it to starving a pet, but the main signal that my pets in failing health have always given me that they're ready to go is that they STOP EATING.
Honestly, death comes for everybody. It's not a defeat to stop fighting it when the time comes.
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DJS commented May 1In reply thread
D
DJS
New York ·
May 1
@Jay El
My mother died of dementia recently. She had been suffering from dementia for over fifteen years. In the beginning, she was able to express that she wanted to die. She was NOT happy, let alone "very very happy with the life that she had." She did not want to live . She died a slow, agonizing death due to dementia.
Her mother had suffered from dementia. Becoming demented like her mother had was my mother's worst fear. It turned out to be worse that my mother's worst fear, as her mother died within a few years of becoming demented, while my mother was demented for over fifteen years.
My mother was virtually catatonic during the last months of her life. I have no way of knowing what her thoughts were, if she was capable of thinking. My mother suffered horribly,
I would like to have the option of ending my life, or to be able arrange to have someone to end my life if dementia begins to set in.
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Kevin commented April 30
K
Kevin
Sonora Mx ·
April 30
The language in this piece is distorted. I am a MD who has seen many people die including demented and cancer patients. Near the end they all stop eating. And at that point I have seen many deluded but well meaning caregivers and family become obsessed with feeding them. Some resort to feeding tubes with resultant problems of dislodged tubes, vomiting, aspiration and diarrhea. Others force food into the mouths of resistant patients who spit and choke. All this is clearly wrong. When terminal patients refuse food and water the appropriate course is to offer food and water but not force it. THIS IS NOT WITHHOLDING,. It is caring for appropriately. Withholding food and water when it is desired is abuse, clear and simple. I doubt very many are in favor of withholding and this article confused this issue. We need to be very clear about these things.
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True Blue commented April 30In reply thread
T
True Blue
Wandering ·
April 30
@AnnH What an loving family to ease the way for their mother and wife. And thank goodness for a car that didn't work. My deepest condolences to her family and to you too Ann.
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Dede Wilder commented April 30
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Dede Wilder
Brunswick, Maine ·
April 30
I’m 76 and have just done my advanced directive. I don’t recall limited feeding as an option . . .but know I opted for only comfort care. I’m now assuming this will/would include forced feeding. How dreadful and terrifying. I wish we would all be more accepting of death’s inevitability. No one gets out alive, as they say, and why shove food in my face when I’m on my way out? Seriously it’s insane.
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Rested Woman commented April 30
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Rested Woman
Santa Fe, New Mexico ·
April 30
My mother is now at the stage with Alzheimer’s where she is just staring at her food. There is no way she wants to stay alive. This was her worst nightmare - and now it’s our entire family’s nightmare. It’s honestly cruel to not let people die with dignity. Cruel to the individual with Alzheimer’s and their family. It’s lonely. Financially it’s a disaster. The experts other than hospice are not great. When are we going to start properly supporting families with dementia? This is trauma work.
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Mike Conrad commented April 30
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Mike Conrad
Washington DC ·
April 30
In my view, AMDs and POAs should be required of everyone, just like taxes. Maybe everyone over 40, IDK. Granted, we'll have to forgo the traditional funeral homily about how "Michael was a fighter, and he fought death every day until his last."
More than willing to do without that particular cliché myself. Maybe "Michael died the way he lived: deliberately."
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Beatrix commented April 30
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Beatrix
Massachusetts ·
April 30
God. Just let people die the way they want to, already.
How is it possible that bodily autonomy is still up for debate in this forsaken culture we all inherited. Just how.
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Katharine commented April 30
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Katharine
Minneapolis ·
April 30
"As a society, “we have been putting an awful lot more energy into making sure death happens than providing care,” - Wesley Smith
Smith seems to be intentionally ignoring the issue of quality over quantity. If I am sitting in a wheelchair, incontinent, unable to speak, not interested in food (and I LOVE food), and generally unable to do anything, including care for myself - I do not want to be alive. I am baffled that Smith wants the opposite. In fact, I find it selfish - be it reluctance to acknowledge death or the desire to make money.
Human beings deserve a dignified, comfortable death at their request.
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Joe Gillis commented May 3
Joe Gillis
Joe Gillis
Sunset Blvd. ·
May 3
“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.”
Wow.
That an ethics expert can’t see the difference between a disabled person with agency and one with end stage dementiia is extremely troubling.
It is unethical to not honor a patient’s wishes. It is also unethical to require a family to prolong the agony of caring for a person with zero mental ability and to drain their savings while they do it.
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Kathleen commented April 30
K
Kathleen
Kentucky ·
April 30
About a month ago, I had an elderly patient who the previous day was willing to take meds and eat, clearly announce to me she was no longer taking meds, eating, or allowing staff to brush her teeth.
Her words: "I am dying. I am not doing anything."
I said: "Okay. Do your children know your wishes? You need to tell them."
I then wrote a note to physicians, relaying my conversation with the patient.
She was made hospice care the next day, snd died a few days later, without force feeding or forcing medications.
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Diane F. commented April 30
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Diane F.
illinois ·
April 30
When a dog no longer shows any interest in eating, due to age, or some other illness, pet owners have the good sense to put them down in a humane way.
We somehow can't treat our extreme elderly or incapacitated with the same compassion.
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Patti Travaglio commented April 30
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Patti Travaglio
Southampton NJ ·
April 30
I only have 2 perspectives. My father had a rapid decline over the course of 1 month, admitted to the hospital at 89 years of age, permanent pacemaker placed, rehab, aspiration pneumonia, hospital, in-patient hospice, peaceful death with my sister and our mother by his side. He HAD been losing weight and failed his swallow eval, which meant pureed food, which he hated. It was not easy, but it was quick and we are all grateful for that.
My other perspective is as an acute care nurse for more than 35 years. It is beyond cruel what is done to patients with dementia. Feeding tubes were never meant for long term use. I wish that more providers would have these difficult conversations earlier and allow the patient to guide the plan of care.
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Leslie commented April 30In reply thread
L
Leslie
Dutchess County ·
April 30
@Jay El disagree. Both my parents had/have dementia. My father *was* happy despite the dementia that killed him. My mother is unhappy but also recently told me she wants to live.
There is no one path with dementia. We have to treat the person in front of us. My father fed himself up until 24 hours before dying. He also slept 22 hours a day. He also was incredibly thirsty during the 4 days it took him to die. He would suck down 8 oz. of water in one go -- I believe it would have been incredibly cruel to withhold water from someone with a raging thirst who so clearly wanted it.
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Melissa S commented April 30
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Melissa S
NYC ·
April 30
Well done, Lawson family. Well done, Dr. Wechkin. Thank for this story and language I can add to my advanced directive.
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Kim commented April 30In reply thread
Kim
Kim
New England ·
April 30
@Commenter Thank you for writing.
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JW commented April 30
JW
JW
Colorado ·
April 30
In my case, I would consider myself selfish if I wanted to be sustained beyond the time I can care for myself. I wouldn't want children I can't even remember giving up their lives to care for an empty shell.
Glad I read this. Now I know what to do. Before I forget.
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J commented April 30
J
J
M ·
April 30
This is, frankly, a symptom of better health care - we are living longer than our bodies are meant to. We're not dying before we start to actively decay, the way that we used to. Not to say that there weren't people who made it to such advanced ages, there were. But now that is the reality for most people instead of just a rare number. Now, we have the quandary of what to do with huge numbers of individuals whose care is incredibly intensive, and whose lives often lack quality and dignity. My grandfather, at 99, told me that he wished he would die. I wished he could have his wish. When families are prolonging the life of a loved one against their wishes, that's selfishness. When someone in that position wishes to end their life with dignity, I would find it cruel to prolong it against their will.
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SR commented May 1In reply thread
S
SR
Houston, TX ·
May 1
@elle I really resent the implication that if a person wants to die, that person must think that his or her life is worthless or worth little. There are lots of reasons why people who are diagnosed with dementia or other horrible fatal illnesses and conditions may want to die--not wanting to be in physical or mental pain and/or constantly beg for pain relief, not wanting to burden loved ones, not wanting to lose dignity, not wanting to lie all day in their own waste in a medicaid nursing home, not wanting to impoverish their surviving spouse, not wanting everyone to remember them as a diminished person, not wanting to lose all privacy and agency as a human being, just for starters.
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Senior Citizen commented April 30
S
Senior Citizen
NH ·
April 30
My husband of almost 52 years passed away in January of last year at 96. He had been in a care facility just a few blocks from home for not quite a year because he kept falling and I couldn't lift him since I have had shoulder replacements. He spent most of his time sleeping even when I took him out in the car for a ride of an hour or so when we would go to McDonalds for a milkshake, his favorite, or to Dunkin for two donuts and a Mocha. Otherwise he barely ate even though the food quality was good and was basically skin and bones because ordinary food like the breakfasts he had always loved no longer interested him. Then he fell and tore the ligaments or tendons above the knee and became bedridden. A full care home was far above our budget so I brought him home and my paramedic daughter helped me with his care. Again he slept and usually refused food. After several weeks he was taken to Hospice so we could have a couple of days of respite and they were able to bathe him which we hadn't been able to do. He was cheerful when I went over to see him the next morning and he announced that he had had a blueberry muffin and a glass of orange juice. It was his last meal as he hadn't wanted anything more and passed in the night. But the little food was his choice and I've heard of others who refused food toward the end. Yesterday would have been his 98th birthday!
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Steve Epstein commented April 30
S
Steve Epstein
Folsom, CA ·
April 30
I was diagnosed with Alzheimer’s about a year ago. I hope to be boarding a flight soon to Switzerland to engage in physician assisted suicide. I, too, was deeply disturbed by the effects of late-stage dementia. I swore to myself that I would not let this happen to me. I understand that the article discusses alternative methods to addressing this issue without a directive but the larger issue is allowing and assisting individuals to die with dignity without penalty to any resource involved.
We are such a culturally encumbered country to wring our hands around the wishes of an individual involving personal choice. Leave the woman alone. She has made it clear what she desires. Get out of her way.
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Andrea commented May 2
A
Andrea
Monterey County ·
May 2
And on a related note, I have long thought that requiring people who are living in a nursing home with no chance of recovery to follow medically advised diets (low-salt, low-carbs, etc.) is ridiculous and cruel. If I have dementia and diabetes and am "living" in a nursing home, you better bring me ice cream, chips, pasta and See's candies! At that point, who cares if it is bad for me?!
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A Woman commented April 30
A
A Woman
Vermont ·
April 30
I’ve heard stories of great grandparents choosing to stop eat so they could die.
And to the doctor who said we wouldn’t do this to pets— I‘ve had many, and nearing end of life most (with a natural death) have stopped eating and retreated or hidden themselves and basically gone off to die.
This sounds like a very balanced approach. Letting the actual person decide when and if to eat. We all want autonomy, no matter where and when we are in life.
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Nancy Smith commented April 30
N
Nancy Smith
Austin, Tx ·
April 30
My 92 year old mother experienced the what she called the “double whammy:” a massive stroke and a broken hip (caused by the fall she took when she was stroking). We had discussed many times that should this happen to her, she would want to die. The stroke also caused cognitive decline and global aphasia. After her hip was repaired, she was released into home hospice. She could no longer read or comprehend anything on TV. We had no idea if she understood anything we said (though she recognized (for the most part) her children, and became animated when her grandchildren and great grandchildren came to visit). We could understand very little of what she was trying to say, except when she asked to die over and over. Her written medical directive indicated she should not be fed at all when she was terminal. However, she still showed some signs of thirst and hunger. So we children decided that we would only give her water and what food she wanted and would let nature take its course. At the end, all she wanted was water and milkshakes (in this case, melted chocolate ice cream). Her constitution was so strong that it took 5 months from her stroke until she died. All along, we were afraid that maybe we were doing the wrong thing, especially because it took so long for her to die. This article gave me some peace that we were providing appropriate comfort for her final journey.
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Nina commented May 1
N
Nina
Minneapolis ·
May 1
I'm a Death Doula and see this uncomfortable predicament all the time. People: Write a solid Advanced Health Care Directive!!! What do you want at your end of life? Put it to paper. Get it witnessed / notarized, file it with your primary physician, then fill out a Provider Ordered Life Sustaining Treatment (POLST in MN, MOLST in other states - do a search for yours).
Compassion & Choices has a great Dementia Directive that can be an addenda to your AHCD. Mine states that, if I cannot pick up a utensil to feed myself, do not feed me. Keep me comfortable with mouth sponges and let me go. No vent, no J-tube for feeding. At some point we all need to realize that our own death is inevitable. I don't want to be fed to be kept alive. To what end? It takes courage to face the facts of death, and it takes courage to make steps to ensure you are stating what you want. It takes courage for families to honor our choices.
I have recommended "comfort feeding" for clients when it seems obvious they are not wanting to eat much. I have trained staff on signs for which to watch. The body does what it does and it will slowly slow down, not needing more calories. Be kind to those you love and honor their wishes, whatever those wishes may be.
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Daveysdad commented April 30
D
Daveysdad
Birmingham, AL ·
April 30
My father approached death at age 94 in the early months of 2024. He was a brilliant man and a responsible one and he had luckily set it all out exactly what he wanted. My sister and I even though we don't agree on many things fully agreed on following my dad's wishes. However when he landed in the hospital due to a fall and told the nursed that he did not want to eat, a doctor came in to examine him. Dad had been slowly losing his appetite eating less and less and less. His once brilliant mind had begun to shrink physically, that's what it says on his death certificate. The doctor tried to force feed him and not just once but several times on the third time in with the spoon my father in one of his last most dignified Acts knocked the spoon out of his hand and said no in a very authoritative voice. The doctor then said well I guess a feeding tube is next and my sister and I both spoke up and said no absolutely not. Because Dad was dying he was losing touch with who he was and he had specifically stated how he wanted to go if it reached this point. He went on hospice care and never had to be administered drugs for palliative care. He just grew more and more tired and finally went to sleep three or four weeks later. I'm still upset with that doctor trying to poke spoons full of food to my declining dad. There's an awful lot of cya out there when it comes to the care of the dying and I despise it. I am so glad this family rescued their mother from the real suffering.
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Liz commented May 3
Liz
Liz
Maryland ·
May 3
My 16.5 year old beloved dog developed dementia and definitely became less interested in food/water and of course, we did not force feed her, but set out food & water in the usual place so she could eat when she remembered - comfort feeding. Luckily, because she's a dog, we were able to end her life as she licked a bowl of melted vanialla ice cream.
My 83-yr mother with late-stage dementia suffered forced regular feedings and it was only when even that was no longer enough that the care home sent her to the emergency room with severe dehydration. My older brother & I decided not to allow iv feeding. Several other siblings called it starvation and death by thirst, but it was clear my mother was end stage but still able to be disturbed by the hospital environment which required scheduled hospital interventions. My brother & I called in hospice and without iv feedings, she died five days later in a uncomfortable morphine haze - just enough morphine to ease discomfort but without killing her.
My dog definitely had the more compassionate, loving, and comfortable death.
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Veggie commented April 30In reply thread
V
Veggie
dc ·
April 30
@Leslie, of course your comment about the cruelty of withholding liquids is not related to the article. The approach outlined literally follows the signals given by the patient. Withholding liquids when the patient signals they want them isn't on the table. I'm curious why you say that? Did you read the article? Are you perhaps focused on some other her issue? I'm really curious what is going on with your comment.
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BrewDoc commented April 30
B
BrewDoc
Rural Wisconsin ·
April 30
Years ago taking care of a 90+ yo I was asked to provide tube feeding in the face of a massive stroke which left the patient non-communicative. Reviewing the chart there was appropriate documentation that tube feeding should not be used. The primary physician had not reviewed the document nor discussed the plan with family. I refused to do the tube feeding until he discussed it with family. His reply, you have to or it is murder. He discussed it with family who adamantly refused tube feeding. The patient was kept comfortable and died peacefully 48 hours later. Perfectly acceptable by the AMA code of medical ethics. My spouse and I have an agreement to never have each other fed unless we indicate we want something (minimal comfort feeding). If I can’t make my wishes known because of dementia go with what I said prior to the dementia. We all die and we show more mercy to our pets than our fellow humans.
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==
세진님, 보내주신 뉴욕타임스 기사와 독자 댓글을 바탕으로 작성한 요약과 평론입니다
요약: 말기 치매 환자의 영양 공급과 존엄한 죽음에 대한 논쟁
1. 기사 본문 요약: <최소 위안 급식(Minimal Comfort Feeding)>의 등장과 갈등
린다 로슨의 사례: 과거 요양원에서 치매 환자들에게 음식을 떠먹이는 일을 했던 린다 로슨(Linda Lawson)은 61세에 치매 진단을 받았다
. 그녀는 평소 연명 치료보다 삶의 질을 중시하며 그런 상태로 살고 싶지 않다고 말해왔으나, 이를 법적 구속력이 있는 사전 연명의료의향서(Advance Directive)로 명문화하지는 못했다 . 결국 말기 상태에 이르러 요양원 직원들로부터 강제로 하루 세 번씩 음식을 제공받게 되었다 . 새로운 대안의 제시: 린다의 가족은 환자가 음식을 거부하는 몸짓을 보이자 연명을 원치 않았고, 의사의 제안으로 2025년 2월 홉 웨치킨(Hope Wechkin) 박사 등이 논문으로 발표한 <최소 위안 급식(Minimal Comfort Feeding)> 프로토콜을 알게 되었다
. 이는 정기적인 급식을 중단하고, 환자가 배고픔이나 갈증의 신호를 보낼 때만 위안을 줄 수 있는 최소한의 음식과 액체를 제공하여 자연스러운 죽음을 맞이하게 하는 방식이다 . 제도적 장벽과 윤리적 논쟁: 요양시설들은 연방 정부(CMS)의 규정에 따라 하루 세 번의 식사를 제공해야 하고, 환자의 체중 감소를 보고해야 하므로 불이익이나 소송을 우려해 이 방식을 거부했다
. 의료계 내에서도 의견이 갈린다. 일부는 이를 '서서히 굶겨 죽이는 잔인한 행위'라거나 장애인의 삶의 가치를 폄하하는 바이아스(Bias)라고 비판하는 반면, 다른 편에서는 억지로 먹이는 행위 자체가 환자에게 고통을 주는 연명에 불과하다고 지적한다 . 결국 린다의 가족은 그녀를 집으로 데려와 직접 이 프로토콜을 수행했고, 성인보호소(APS)의 신고를 당하는 등의 갈등을 겪은 끝에 가족들이 지켜보는 가운데 평화로운 죽음을 맞이하게 했다 .
2. 독자 댓글 요약: 의료 현장의 증언과 대중의 공감
기사에 달린 수많은 댓글은 압도적으로 <최소 위안 급식> 및 환자의 자율성 존중을 지지하는 경향을 보인다
임상 전문가들의 지지: 전직 ICU 간호사, hospice 간호사, 의사 등의 전문가들은 임종 단계에서 신체 기능이 저하될 때 억지로 수액(IV)이나 영양관(Tube Feeding)을 연결하면 오히려 폐수종, 흡인성 폐렴, 장기 부담을 유발해 환자의 고통을 가중시킨다고 증언했다
. 제도 및 자본주의 비판: 많은 독자가 현대 의료 시스템이 환자를 '수익 창출의 수단(Commodity)'으로 보며, 요양시설들이 규제 회피와 재정적 이익(방어 진료 및 보조금 청구)을 위해 불필요한 연명을 강제하고 있다고 비판했다
. 보편적 권리로서의 Bodily Autonomy(신체적 자율성): 인간의 존엄성은 살아있는 기간의 길이(Quantity)가 아닌 삶의 질(Quality)에 있다는 점을 강조하며, 반려동물에게 행하는 인도적 종말(안락사 및 자연스러운 거부 인정)만큼의 자비가 인간에게도 허용되어야 한다고 주장했다
. 또한, 치매가 오기 전에 사전 연명의료의향서를 명확히 작성해야 한다는 필요성에 깊이 공감했다 .
평론: <살려두는가>와 <살아있는가>의 경계에서 현대 의학이 놓친 것
본 기사와 댓글은 현대 의학의 발전이 가져온 가장 어두운 역설, 즉 '생물학적 호흡의 연장'이 어떻게 '인간적 존엄의 말살'로 이어질 수 있는지를 린다 로슨이라는 한 여성의 삶과 죽음을 통해 통렬하게 고발한다
1. 인위적 영양 공급의 폭력성과 문화적 맹점
현대 사회에서 '먹이는 행위'는 오랫동안 사랑과 보살핌, 그리고 도덕적 의무의 상징이었다
일부 윤리학자나 의사들이 "disabled(장애를 가진) 이들의 삶의 가치를 낮게 평가하는 바이아스"를 우려하는 것은 일견 타당해 보일 수 있다
2. 요양 산업의 자본주의적 포섭과 법적 규제의 한계
이 논쟁이 해결되지 못하고 법적 그레이 존(Legal Gray Area)에 머무는 근본적인 원인은 미국의 메디케어·메디케이드(Medicare/Medicaid) 규제와 사법 리스크, 그리고 요양 산업의 영리 구조에 있다
이러한 시스템 속에서 의료진은 환자의 최선의 이익이 아닌, 기관의 안위와 소송 방어(CYA: Cover Your Ass)를 위해 강제 급식을 선택하게 된다
3. 자율성의 시차(Time-lag)와 <최소 위안 급식>의 가치
에릭 위데라(Eric Widera) 박사가 제기한 의문, 즉 "과거 온전한 정신일 때 존엄사를 원했던 주체"와 "치매에 걸렸지만 현재 아이스크림을 받아먹으며 행복해 보이는 주체" 중 누구의 말을 들어야 하는가에 대한 질문은 매우 날카롭다
이 지점에서 웨치킨 박사가 제안한 <최소 위안 급식>은 매우 영리하고도 자비로운 절충안을 제시한다
결론: 자연스러운 죽음을 허용하는 문화로의 이행
수많은 독자가 반려동물의 안락사를 언급하며 인간의 임종 환경을 '비참함(Travesty)'이라고 부른 것은 시사하는 바가 크다
린다 로슨의 가족이 사법적 위협 속에서도 그녀를 집으로 데려와 <Little House on the Prairie(초원의 집)>를 틀어놓고 마지막 숨을 지켜봐 준 행위는 위대한 사랑의 실천이자 제도에 대한 침묵의 저항이다
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혹시 이 요약과 평론에서 특정 관점을 더 보완하고 싶거나, 세진님이 추가로 인상 깊게 읽으신 독자의 의견이 있다면 말씀해 주세요. 다음 논의에 반영하겠습니다.
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