Minimal Comfort Feeding Is a New, Controversial Approach in Late Dementia - The New York Times

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.

Listen · 17:23 min

By Kate Raphael
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세진님, 요청하신 뉴욕 타임스 기사 <치매 말기, 새롭고 논란이 되는 접근법인 '최소 편안함 급식' (Minimal Comfort Feeding Is a New, Controversial Approach in Late Dementia)>에 대한 요약과 평론입니다.

요약: 죽음을 수용하는 새로운 방식, 최소 편안함 급식

1. 린다 로슨의 사례와 문제 제기

린다 로슨은 젊은 시절 요양원에서 치매 환자들에게 강제로 음식을 떠먹이던 경험을 한 뒤, 자신은 결코 그렇게 살고 싶지 않다는 의사를 분명히 했다. 그러나 61세에 치매 진단을 받고 말기에 이르자, 요양원 의료진은 그녀의 과거 의사와 상관없이 하루 세 번 강제로 식사를 제공했다. 린다가 고개를 숙이거나 음식을 거부하는 몸짓을 보였음에도 불구하고, 연방 규정과 시설의 책임 문제로 인해 기계적인 급식은 계속되었다.

2. 최소 편안함 급식(Minimal Comfort Feeding)의 도입

호프 웨킨 박사가 2025년 제안한 이 프로토콜은 치매 환자에게 정해진 시간에 강제로 먹이는 대신, 환자가 굶주림이나 갈증의 신호를 보낼 때만 최소한의 영양과 수분을 제공하는 방식이다. 이는 환자의 생명을 연장하기보다 존엄한 죽음의 과정을 방해하지 않는 '중간 지대'의 선택지로 고안되었다. 린다의 가족은 이 방식이 그녀의 평소 소망에 부합한다고 판단하여 이를 시도하고자 했다.

3. 법적·윤리적 장애물과 갈등

현행법상 메디케어와 메디케이드를 지원받는 시설은 환자에게 하루 세 끼를 의무적으로 제공해야 하며, 체중 감소를 보고해야 한다. 이를 어길 경우 요양원은 법적 처벌이나 등급 하락의 위험을 안게 된다. 린다의 요양 시설 역시 가족의 요청을 거부하며 노인 학대 혐의로 당국에 신고하기까지 했다. 또한 일부 윤리 학자들과 종교 단체는 이를 '느린 굶주림' 혹은 '장애인 차별'이라 비판하며 급식은 의료 행위가 아닌 기본적인 돌봄의 의무라고 주장한다.

4. 린다의 마지막과 대중의 반응

결국 가족은 린다를 집으로 데려와 '최소 편안함 급식'을 직접 시행했다. 그녀는 좋아하는 TV 프로그램을 배경으로 가족과 친구들의 배웅 속에 평온하게 숨을 거두었다. 이 기사에 달린 1,000개 이상의 댓글은 독자들이 처한 현실적인 고통과 '사전 연명의료 의향서(Advance Directive)'의 중요성, 그리고 죽음을 선택할 권리에 대한 뜨거운 논쟁을 보여준다.

평론: 생명 연장의 기술과 존엄한 마감 사이의 괴리

삶의 질과 양의 충돌

본 기사는 현대 의학이 이룩한 생명 연장 기술이 역설적으로 인간의 '존엄한 죽음'을 어떻게 방해하고 있는지를 날카롭게 지적한다. 과거에는 자연스럽게 받아들여졌을 '쇠약에 의한 거식'이 오늘날에는 '강제 급식'이라는 의료적 개입으로 치부된다. 린다의 사례는 환자가 건강할 때 명확히 밝힌 가치관조차 법적·행정적 시스템 앞에서는 무력해질 수 있다는 비극적 현실을 폭로한다.

돌봄의 정의에 대한 재고

'최소 편안함 급식'은 돌봄을 '생물학적 유지'에서 '정서적 평온'으로 이동시키려는 시도이다. 반대론자들이 주장하는 '기본적인 도덕 의무'로서의 급식은 환자가 음식을 거부하며 겪는 고통이나 흡인성 폐렴 같은 부작용을 간과하는 경향이 있다. 기사는 급식이 사랑의 표현이 될 수도 있지만, 때로는 환자의 몸을 전장으로 만드는 폭력이 될 수도 있음을 시사한다.

제도적 한계와 사회적 과제

요양 시설이 규제와 소송에 대한 공포 때문에 가족의 합리적인 요청을 학대로 신고하는 대목은 이 문제가 개인의 선택을 넘어 사회적 제도 개선이 시급함을 보여준다. 기사 하단의 수많은 댓글은 고가의 메모리 케어 비용과 수익 중심의 의료 체계에 대한 불신을 드러내며, 스위스나 네덜란드와 같은 조력 사망 제도의 도입을 갈망하는 목소리를 전달한다.

결론: 죽음은 삶의 마지막 완성

린다 로슨의 죽음은 '어떻게 죽을 것인가'가 곧 '어떻게 살았는가'를 완성하는 마지막 퍼즐임을 상기시킨다. 최소 편안함 급식은 단순히 죽음을 앞당기는 기술이 아니라, 신체가 죽음을 준비하는 자연스러운 과정을 존중하려는 인도적 배려로 평가받아야 마땅하다. 이 기사는 초고령 사회로 진입하는 인류에게 죽음에 대한 통제권을 시스템이 아닌 개인에게 돌려주어야 한다는 묵직한 숙제를 던진다.

세진님, 이 글이 치매 환자의 존엄성과 말기 돌봄에 대해 깊이 고찰하시는 데 도움이 되기를 바랍니다. 더 궁금한 점이 있으면 언제든 말씀해 주세요.

<요약: ‘최소 편안 급식’—치매 말기 돌봄의 새로운 경계>

이 글은 말기 치매 환자에게 음식을 어떻게 제공할 것인가라는 오래된 질문에 대해 새로운 접근인 <minimal comfort feeding(최소 편안 급식)>을 중심으로 탐구한다. 핵심 문제는 단순하다. “먹이는 것이 돌봄인가, 아니면 불필요한 생명 연장인가?”

이 논쟁은 린다 로슨(Linda Lawson)의 사례를 통해 구체화된다. 젊은 시절 요양원에서 말기 치매 환자를 돌보며 “그렇게 살고 싶지 않다”고 생각했던 그녀는, 수십 년 후 자신이 바로 그 상태에 놓인다. 기억 상실, 언어 상실, 자가 식사 불가능 상태로 진행된 후, 의료진은 그녀를 하루 세 번 규칙적으로 먹이며 생명을 유지한다.

그러나 가족은 이를 문제로 본다. 그녀가 고개를 돌리거나 식사를 거부하는 행동을 “더 이상 먹고 싶지 않다는 신호”로 해석한 것이다. 특히 그녀가 생전에 “삶의 질이 양보다 중요하다”고 말해왔다는 점은 가족의 판단을 강화한다. 하지만 명확한 사전의료지시서(advance directive)가 없었기 때문에, 가족은 제도적으로 선택의 자유가 거의 없는 상태에 놓인다.

이때 등장하는 것이 ‘최소 편안 급식’이다. 이는 정해진 시간에 강제로 먹이는 대신, 환자가 배고픔이나 갈증을 보일 때에만 소량의 음식과 물을 제공하는 방식이다. 목표는 생명 유지가 아니라 ‘편안함 유지’다.

이 접근은 기존의 두 극단—① 완전한 급식 유지, ② 음식과 수분 완전 중단—사이의 중간 지점을 제시한다. 환자가 더 이상 음식에 관심이 없다면 자연스럽게 죽음으로 향하게 하고, 필요할 경우에는 최소한의 섭취를 허용한다.

하지만 이 방식은 곧바로 논란을 낳는다.

<핵심 쟁점>

1. 법과 제도의 충돌

미국의 요양시설은 법적으로 하루 세 끼 식사를 제공해야 한다. 이는 환자의 체중 감소나 기능 저하를 보고해야 하는 규정과 연결되어 있다.
따라서 “먹이지 않는 것”은 의료적 판단 이전에 법적 위험이 된다. 실제로 로슨 가족은 이 방식을 시도하자 노인학대 신고까지 당한다.

2. 윤리적 딜레마

가장 중요한 질문은 이것이다.

과거의 의사 vs 현재의 상태
“이렇게 살고 싶지 않다”는 과거의 자신
“지금은 먹고 싶다/혹은 거부한다”는 현재의 몸

어느 쪽을 존중해야 하는가?

또한 의료진 입장에서는 “굶주린 환자를 지나치는 것이 죄인가”라는 도덕적 부담이 존재한다. 일부는 이를 “느린 기아(slow starvation)”로 비판한다.

3. 돌봄의 본능 vs 죽음의 수용

먹이는 행위는 인간 돌봄의 가장 기본적인 표현이다.
따라서 이를 중단하는 것은 단순한 의료 판단이 아니라, 인간적 감정과 정면으로 충돌한다.

<사례의 결말>

시설의 반대로 인해 가족은 결국 환자를 집으로 데려온다.
그곳에서 ‘최소 편안 급식’을 직접 시행한다.

배고픔 신호가 있을 때만 음식 제공
대부분은 소량 섭취 또는 거부
가족과 친구들이 함께하는 환경

결국 그녀는 가족이 지켜보는 가운데 비교적 평온하게 사망한다.

이 결말은 이 접근이 단순한 이론이 아니라 실제 가능한 선택임을 보여준다.

<평론: 이 논쟁의 본질은 ‘죽음의 주권’이다>

이 글의 핵심은 ‘급식 방식’이 아니다.
본질은 훨씬 더 깊다.

1. 현대 의료의 구조적 문제

현대 의료는 “죽음을 실패”로 본다.
그 결과:

생명 유지 = 기본값
죽음 수용 = 예외

이 구조 속에서 치매는 특히 문제가 된다.
왜냐하면:

회복 불가능
종료 시점 불명확
환자 의사 확인 불가

즉, 시스템이 가장 다루기 어려운 질병이다.

2. 치매는 ‘생물학적 생존 vs 인간적 삶’의 분리

말기 치매에서는 다음이 분리된다.

생물학적 생존 (몸은 살아 있음)
인격적 존재 (자아는 사실상 사라짐)

이때 질문은 바뀐다.

“살아 있는가?” → “이것이 삶인가?”

이 질문에 대해 사회는 아직 합의가 없다.

3. ‘먹이는 것’의 상징성

음식은 단순한 영양 공급이 아니다.

사랑
돌봄
생명 유지

따라서 급식을 줄이는 행위는
심리적으로 “죽음을 허용하는 행위”로 느껴진다.

이 감정적 저항이 논쟁의 핵심이다.

4. 최소 편안 급식의 철학적 위치

이 접근은 흥미로운 중간 지점을 차지한다.

방식	특징
적극적 생명 연장	강제 급식
최소 편안 급식	필요 시만 제공
완전 중단	VSED (자발적 금식)

즉, 이는 “죽음을 선택”하는 것이 아니라
“죽음을 방해하지 않는 것”에 가깝다.

<비판적 평가>

장점

현실적이다
극단적 선택(완전 중단)보다 수용 가능성이 높다.
환자 신호를 존중한다
행동(먹기/거부)을 의사 표현으로 해석한다.
가족의 죄책감을 줄인다
“굶겨 죽였다”가 아니라 “자연을 따랐다”는 인식

한계

판단의 불확실성
배고픔/거부 신호 해석이 주관적이다.
남용 가능성
경제적·감정적 이유로 조기 적용 위험
제도와 충돌
현재 의료 시스템에서는 실행이 어렵다

<결론>

이 글은 단순한 의료 논쟁이 아니라
다음 질문을 던진다.

인간은 어디까지 ‘살아 있어야 하는가’
그리고 그 경계를 누가 결정하는가

‘최소 편안 급식’은 아직 완성된 해답이 아니다.
그러나 중요한 전환점은 분명하다.

생명 연장 중심 → 삶의 질 중심
의료 결정 → 가치 판단
시스템 → 개인의 의지

결국 이 문제는 기술이나 제도가 아니라
‘죽음을 어떻게 이해할 것인가’라는
문명적 질문으로 귀결된다.

원하시면
→ 한국(Aged Care) 현실에서 이 문제가 어떻게 적용되는지
→ 세진님 상황(정순님 돌봄) 기준으로 실제 선택지 분석

이 두 가지를 더 구체적으로 정리해드리겠습니다.

→ 한국(Aged Care) 현실에서 이 문제가 어떻게 적용되는지 → 세진님 상황(정순님 돌봄) 기준으로 실제 선택지 분석

네. 세진님 상황에는 <한국>보다 <호주 Aged Care 현실>이 더 직접 관련됩니다.

1. 호주 Aged Care에서의 적용

호주에서는 원칙적으로 말기 돌봄에서 음식·수분의 목표가 <생명 연장>에서 <편안함과 삶의 질>로 바뀔 수 있습니다. ELDAC는 사람이 원하면 음식과 음료를 제공하되, 임종기에 식욕이 줄거나 사라지는 것은 흔하며, 유효한 Advance Care Directive가 있으면 따라야 한다고 설명합니다.

Victoria Health의 치매 말기 식사 지침도 분명합니다. <먹고 싶어 하지 않는 사람에게 억지로 먹이지 말라>, <입안을 촉촉하게 하고 구강 관리를 하라>, <인공영양·수분 공급은 본인 의사에 따라 보류될 수 있다>고 합니다.

그러나 실제 시설에서는 법적 책임, 가족 민원, 체중 감소 감시, 흡인 위험 때문에 매우 조심합니다. 그래서 핵심은 “먹이지 말라”가 아니라 다음처럼 문서화하는 것입니다.

<정순님이 원할 때, 안전하게 삼킬 수 있을 때, 즐거움과 편안함을 위해 제공한다. 거부하거나 괴로워하면 억지로 먹이지 않는다. 목표는 영양 보충이 아니라 comfort feeding이다.>

2. 한국 현실에서의 적용

한국은 더 어렵습니다. 연명의료결정법은 주로 임종 과정의 연명의료 중단에 초점이 있고, 말기 치매에서 경관영양이나 비위관 급식을 어떻게 중단할지에 대해서는 아직 제한적입니다. 2024년 한국 연구도 한국에서는 말기 치매 환자의 연명의료 의사결정이 아직 제한적이며, 비위관 급식 중단에 대해 일반인보다 임상의가 더 조심스럽다고 보고합니다.

즉 한국에서는 가족이 “먹이지 말라”고 말하면 의료진이나 시설이 법적·윤리적으로 부담을 크게 느낄 가능성이 높습니다. 다만 “강제 급식하지 말고, 편안함 중심으로, 원할 때만 소량 제공”이라는 표현은 훨씬 현실적입니다.

3. 정순님 상황 기준 실제 선택지

현재 정순님은 아직 <말기 치매>가 아니라, 단기기억 저하·환시·판단력 저하가 있으나 생활 기능이 남아 있는 단계로 보입니다. 따라서 지금 당장 “최소 편안 급식”을 적용할 상황은 아닙니다.

지금 해야 할 일은 <미리 준비>입니다.

첫째, 담당 GP와 치매 전문의에게 Advance Care Directive를 의논해야 합니다. 특히 다음 항목을 넣는 것이 중요합니다.

<내가 진행성 치매로 가족을 알아보지 못하고, 스스로 먹지 못하며, 음식을 거부하거나 삼키기 어려워질 경우, 생명 연장을 위한 강제 급식·튜브 급식·정맥 영양을 원하지 않는다. 다만 편안함을 위한 소량의 음식과 수분, 구강 관리는 원한다.>

둘째, 정순님이 아직 의사 표현을 할 수 있을 때 세진님과 아드님이 함께 조용히 대화해 기록해 두는 것이 좋습니다. 문서보다 더 강한 것은 반복적으로 확인된 가치입니다.

셋째, 시설이나 respite centre에는 “식사를 잘 시켜주세요”보다 더 정교하게 말해야 합니다.

넷째, 나중에 삼킴 문제가 생기면 speech pathologist 평가가 중요합니다. 이때 선택지는 보통 세 가지입니다.

단계	현실적 선택
아직 즐겁게 먹음	좋아하는 음식 중심, 식사 보조
자주 사레·거부	texture 조정, 소량, 천천히, 편안함 중심
말기·거의 거부	comfort feeding only, 구강 관리, 강제 급식 회피

제 판단은 이렇습니다. 세진님 상황에서 가장 좋은 방향은 <죽음을 앞당기는 결정>이 아니라 <나중에 정순님이 원치 않는 생명연장을 당하지 않도록 미리 문서화하는 것>입니다. 지금 준비하지 않으면, 나중에는 시설·병원·가족이 모두 두려워해서 기본값인 “계속 먹이기”로 갈 가능성이 큽니다.

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.

Image

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.

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Vaughn commented 6 minutes ago

Vaughn

Maryland ·

5m ago

You really need to do an advanced directive! My mother only specified no feeding tube. Over the last couple of months she just stopped wanting to eat. She would clench her jaws if the aide offered food. Passed away at 90 after 4 years in a nursing home with progressing dementia.

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Nina commented 47 minutes ago

Nina

Minneapolis ·

46m ago

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.

Recommend 6

CJ commented 2 hours ago

Colorado ·

2h ago

My mom has been in memory care over 7 years. She has detailed advanced directives that are ignored by the healthcare system if a patient has advanced dementia. She has been in hospice for almost a year with the comfort feeding which is prolonging a miserable existence. I believe the profit motive with the medical and long term care industry is behind this problem.

The number of nurses and caregivers required at this end stage of dementia makes it very difficult to move someone home at this stage.

Recommend 5

BG commented 2 hours ago

NYC ·

2h ago

Here's an idea. Let people elect to be euthanized under certain conditions in their healthcare directives, when they are still competent to make that decision. Dying can be simple, dignified and pain free for those want it to be that way. Stop inflicting religious ideas on what life is upon everyone, including those who don't share those beliefs. Specifying this early enough in a written directive also ensures the decision is not made under coercion. Let's start there!

Replies 1

Recommend 10

April commented 47 minutes ago

April

Austin, TX ·

46m ago

@BG I agree with you. It’s not a life and comparing it to a younger person with a disability is a false equivalency. Once I reach the end of my life, if I can no longer take care of myself in any way and especially if I develop severe dementia, I no longer wish to live and be a burden on my family. It should be my choice. I certainly don’t want the religious beliefs of others to supersede my rights over my own person. Life ends, we all die and we have the ability and obligation to make it as comfortable as possible at the end.

Recommend 1

Close replies

KBert commented 2 hours ago

KBert

Melbourne ·

2h ago

My mother who has diagnosed with dementia at age 70 has not been able to walk, talk, feed or toilet herself, respond to questions in any way or recognise anyone for 3 years. The only time she uses her limbs is to scratch her chest at night sometimes.

She was adamant she not want go to a nursing home but I couldn’t care for her after she stopped walking because she was too heavy.

She just lays there, day after day, very slowly dying. The food they give her looks like cat food because it is puréed and usually cold. She would hate every minute of this because the one thing she loved was food.

I am furious that our society has not found a way to deal with situations like this with compassion.

Recommend 8

Easily commented 2 hours ago

Easily

Predicted ·

2h ago

My mother was dying of this recently. She was conscious but had something neurological harming her. They claimed Alzheimer’s at first but I proved that was wrong. I suspected after a few months she was trying to starve herself and would bring her things I’d thought she would eat but it always got eaten less and less. They wanted to give her a feeding tube which I saw no point in as she was not getting any better anyway. She eventually died of basically starvation though the hospital delaying her blood transfusion certainly played a role. Leading to cardiac arrest. I’m definitely glad in some ways it happened sooner rather than later and I suspect she would have been as well. I’d asked her about resuscitation thinking she would say no but she had said yes but then that was weeks before she died and i doubted she would survive it anyway.

I’d certainly do it myself if I could in that situation if death was not available any other way. I’d even considered and spoke with my family about providing her with a lethal supply of medication but she was so hard to understand I didn’t know if she would be able to make the choice and communicate it effectively such that she got the right result.

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Emilie commented 3 hours ago

Emilie

Virginia ·

3h ago

I’ve never understood the desire to prolong someone’s death. That is what is inhumane. In our profit based health system, it is also suspect. I worked for years in nursing homes, memory care units, home health, and also took care of my mother for 10 years following her diagnosis with dementia. It is such a long, slow, tortuous decline, why on earth do people feel the need to prevent an end to the suffering?

Recommend 15

Mike S. commented 3 hours ago

Mike S.

On the trail in Oregon ·

3h ago

I'm a retired neurologist whose parents made him promise never to let them linger the way so many of their friends did. When my mother had a rapidly progressive dementia, and I had the diagnosis, I had the nursing staff offer food. My mother refused it. In a few days, she went to hospice and died soon after. I kept my promise to her and later to my father.

I stopped all but comfort care in hundreds of patients. Some of my colleagues said it would be different when it was my parents. I said it would not be and was right. It wasn't different. Given some long term care facilities, I would wonder if having a parent there would be enough to call APS.

Recommend 10

Miller commented 4 hours ago

Miller

Oregon ·

4h ago

People with dementia cannot use death with dignity laws. Although we used hospice and my mother had advance directives in place, I saw her die by choking to death about a week after she lost her ability to swallow safely, and we stopped food and liquids. What the author describes is a better way forward, though for the last year of her life my mom was so physically robust, had little or no language left, and became erratic in what food she liked or didn’t, so I’m not sure how we could truly judge when to start an approach like this.

For that reason. I would also like to see an automatic “death with dignity” option in any case where a person can no longer safely swallow, especially if they must rely on someone else to carry out their wishes. Isn’t it the most ethical care to let everyone say goodbye peacefully, when the end is certain? No one should have to die as my mother did.

Recommend 8

NJ Resident commented 4 hours ago

NJ Resident

NJ ·

4h ago

Beautiful ending. This family showed great love. They made their mother proud.

Recommend 7

Anna commented 4 hours ago

Anna

ny ·

4h ago

my dad in late dementia was no longer able to swallow so he died Separately, nursing homes are terrible places for human beings, time to tear them down and start over.

Recommend 11

dcpolicygeek commented 4 hours ago

dcpolicygeek

Washington, DC ·

4h ago

Many people who have dementia die from aspiration pneumonia resulting from their compromised ability to swallow combined with a limited # of nursing home staff feeding so many dementia patients on a tight schedule. Being allowed to eat normally as needed/wanted reduces the risks for getting aspiration pneumonia.

Recommend 5

Barbara Kumar commented 4 hours ago

Barbara Kumar

Detroit,Michigan ·

4h ago

In my opinion it is our moral duty to offer food even to those who wont eat it and certainly we must offer hydration. We can't deliberately participate in the starvation of the elderly. If you want to give up eating should you develop dementia then specify that in writing.

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Val commented 5 hours ago

Val

NY ·

5h ago

On Thanksgiving Day in 2018, Dad and I sat in an alcove alongside a family visiting their relative. My formerly gregarious and robust father, ravaged by Alzheimer’s looked at me and whispered, “Take me back to my room. I’m tired.”

Those were the last words he spoke. Less than two weeks later, Dad, who ‘d served as a sergeant in the Air Force for twenty years and was a Vietnam veteran, died on December 7.

The rehabilitation center had offered palliative care. Dad had an advanced directive and was allowed to die with dignity and grace. A nursing supervisor had previously informed me he could return to a hospital where he could receive fluids to prolong his life. I chose to honor Dad’s wishes.

At 88 Dad had survived several bouts of cancer, the death of my mother in 2012 after 60 years of marriage and the death of my youngest brother in 2011.

A pastor later asked me if Dad had experienced a good death. One of Dad’s favorite lyrics was from a “My Way” sung by Frank Sinatra. It goes, “I did it my way.”

I said he had.

Recommend 7

Amy K commented 5 hours ago

Amy K

NJ ·

5h ago

I am a hospice social worker. The rule for us is “offer, don’t force.” It can be a very hard idea to get used to. But there is more dignity in allowing someone to stop eating when they wish.

At a certain point in the dying process, the trachea stops working as it used to, and pouring food down someone’s gullet will cause aspiration pneumonia, a far more unpleasant way to die than simply respecting the patient’s wishes.

Recommend 10

Nybol commented 5 hours ago

Nybol

NM ·

5h ago

Advance directives are so important, despite our gaps in understanding the ethics for end of life care. One of the hazards of civilization compared to the "less advanced cultures", I believe.

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Andi commented 7 hours ago

Andi

Queens ·

7h ago

My mother died of early onset Alzheimer's a few months back, and I wish I had known about this approach. She was fed three meals of pureed food a day for several years, and still ended up dying of starvation and lack of hydration when she became so far gone, she lost the ability to swallow. The feedings only prolonged the inevitable.

Recommend 13

Intl Traveler commented 7 hours ago

Intl Traveler

at large ·

7h ago

Why does an MD or admin or exec at a care facility get to have any opinion on whether the patient has a will to live or not?

Those people have an obvious conflict of interest when it comes to extending the life of someone with a terminal (will never improve) dx of dementia.

Also, keeping Grannie alive at all costs is really only an option when the family can afford that expensive long term care.

Recommend 9

Megan commented 7 hours ago

Megan

Michigan ·

7h ago

I work as a medical speech pathologist and have cared for hundreds of patients with dementia. Its also important to note that force feeding people with dementia significantly increases their risk of aspiration. There are a lot of strategies for end-of-life feeding including hand-over-hand feeding and offering sweeter foods (taste is often impaired in dementia) that help optimize intake while reducing aspiration risk. Our profession has been advocating for "minimal comfort feeding" long before it was named.

Recommend 12

Bodhi L commented 7 hours ago

Bodhi L

TX ·

7h ago

Many see hospice as a logical bridge to comfort feeding or VSED. But it's important to note that states differ on their guildelines for qualifying for hospice, and laws regarding liability when it comes to comfort feeding and VSED. Qualifying for hospice can be complicated because it is mediated by current Medicare/Medicare Advantage guidelines for each state. In most states, qualifying for hospice requires a medically verfied probable/reasonable time before death, generally, three to six months. The problem with dementia is that it is recognized as a terminal disease, but probable/reasonable timelines can't really be determined, thus making it next to impossible to qualify for hospice and, by extension, the option for comfort feeding for VSED. This may be what is driving more and more states to consider death-with-dignity legislation. Currently, 13 states have now passed legislation making medically-assisted dying legal, and several more have legislature being crafted. We can thank the compassionate individuals driving the death-with-dignity movement for the progress we've currently made.

Recommend 5

Michael commented 7 hours ago

Michael

Ottawa ·

7h ago

Everyone should have he right to end their lid in a dignified and painless manner.

The movie “Soylent Green” depicted a govt facility where people could opt for euthenasia via a very peaceful end of life.

I consider this “civilized” in comparison to someone being kept involuntarily alive via medical procedures or antidepressants that merely prolong the agony and struggle for said individuals.

Recommend 5

Brian commented 7 hours ago

Brian

Florida ·

7h ago

Just finished my life will and have stipulated I want to go when I’m no longer enjoying life. I don’t want anyone keeping me alive for their sake. I’m comfortable with my faith and will embrace a doctor assisted suicide if the playbook sports pain and suffering!

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Janis commented 7 hours ago

Janis

WOW County Wisconsin Democrat ·

7h ago

Nursing homes will keep a patient alive as long as money is coming in.

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Mary L. commented 8 hours ago

Mary L.

West coast ·

8h ago

45 year home health & hospice RN here. IMO it was putting her in a care facility in the first place- whether memory care, nursing home, foster home or even an assisted living- which in this case took control of her life, comfort, & wishes out of her loving family's hands into those aiming to exert 24 hour control & moneytize her.

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Victoria commented 10 hours ago

Victoria

Oregon ·

10h ago

Thank you for this important article. I think it makes a lot of sense. I have no desire to live that way.

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latha Rajamani commented 10 hours ago

latha Rajamani

india ·

10h ago

My mother, a dementia patient stopped opening her mouth for food towards the end.She was kept at home only with 2 nurses taking turns to care for her.Then she was given Ensure through a pipe but hardly lasted for a month and mercifully left this world .She was married for 60yrs and one day asked me what's my husband's name although my father was sitting right beside her.That was a blow for our family.

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Jane Norton commented 7 hours ago

Jane Norton

Chilmark ·

7h ago

@latha Rajamani I’m so sorry for your loss.

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SK commented 10 hours ago

Earth ·

10h ago

When I was working as a hospice nurse, at the end-of-life for those who had the mindful capacity, often chose VSED: Voluntarily Stopping Eating and Drinking. They invited family and family to visit and celebrate their life before leaving their body. (There's excellent articles online about VSED).

For myself, over the course of the 10 years that I practiced this valuable form of community nursing, I realized that I never would want to be in a situation of being in a demented state and also being fed unnecessarily. As many people have stated: our bodies naturally start to shut down as we approach death and therefore this very realistic proposal of minimal feeding follows our bodies natural inclination. However what puzzles me is that as a society we accept the voice of our writing a will and passing on gifts to our loved ones after we have died, but when we pre-request with a sound mind that we have reduced feeding if and when we're inflicted with a horrible disease such as Alzheimer's, we do not honor this person's request. This form of imposed thinking seems to only support the profit-driven facilities that "care" for us as citizens. To that end, we must demand better care and moreso, in the form of changing our laws on a national level in addition to allowing MAID: Medical Aid in Dying.

Recommend 36

Victoria commented 10 hours ago

Victoria

Colorado ·

10h ago

Hospice - home or in a facility - is a good alternative, but why wasn’t this addressed in this article. She should have qualified. Once under hospice, there are no obligations to force feed, only to provide comfort care.

Replies 3

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Intl Traveler commented 10 hours ago

Intl Traveler

at large ·

10h ago

@Victoria

Agreed - my mother stopped eating (or only very slowly) and she was accepted into hospice without a terminal diagnosis. Even her dementia wasn't that severe. She just wound down, like a watch, and stopped naturally.

Recommend 7

sue commented 10 hours ago

sue

nj ·

10h ago

@Victoria I was curious about this, too. When my father started refusing food in the midst of having dementia, his care facility was very open to hospice. He died peacefully a few days later without having been hectoed into eating.

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Bodhi L commented 8 hours ago

Bodhi L

TX ·

8h ago

@Victoria You are correct, re once under hospice in your state of Colorado where hospice qualification is not only more liberal, but you also have one of the most compassionate death-with-dignity laws allowing for those who want to elect to have a physician-assisted suicide. Qualifying for hospice can be complicated because it is mediated by current Medicare/Medicare Advantage guidelines for each states. In most states, to qualify for hospice care under Medicare or Medicare Advantage, there is a requirement that a probable/reasonable time before death be determined and medically verified; generally, it's a three to six month window. The problem with dementia is that while it is recognized as a terminal disease, it is very difficult to give a probable/reasonable timeline (many with dementia linger for years) thus making it next to impossible to qualify for hospice and, by extension, the option for comfort feeding for VSED. In my observations, this is probably what is driving more and more states to consider death-with-dignity legislation. Currently, there are 13 states have now passed legislation making medically-assisted dying legal, and several additional states have legislature being crafted. I applaud the many compassionate souls in the death-with-dignity movement who have tirelessly worked to help legilative efforts along.

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Sara T commented 11 hours ago

Sara T

Upper Midwest ·

11h ago

Noble love, good for the family. A mom much loved had the best care at the end of her life.

After a year in Assisted living, I moved my parents back to their home and I moved in as their primary caregiver. Both had very peaceful deaths. Food and water were always offered, the caregiver instinct is to feed, it’s fundamental. And I love to cook and feed people. But we also never forced, just encouraged.

The body knows how to die. It can no longer process nourishment even if consumed. Hospice can be very supportive, just need the right team.

Recommend 21

sue commented May 1

sue

nj ·

May 1

It all comes down to fines and liabilities in the eyes of the facility management.

Families need to keep in mind that the first filter that care facilities use when advising patients/families is the degree of liability that any decision creates for the facility's owners.

They anticipate lawsuits after the resident's death, regardless of how forcefully the family advocates for non-intervention when a resident refuses food.

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LePiaf commented May 1

LePiaf

Ohio ·

May 1

Life is sacred, special, important, because it’s limited.

Life is sacred *because* we die.

Why do we have such a desperately hard time facing up to that inevitable truth? Death is not ugly, it’s what provides value to every fleeting irreplaceable second before it comes.

I wouldn’t want to live forever in this flesh suit - and I’m only middle aged.

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Dolores Deluxe commented May 1

Dolores Deluxe

balto md ·

May 1

Never put your parent in a home- take them home. W hen it was apparent mom could not live in her home she came to ours. We juggled work and care between my husband and I. We were not well off- free lance in creative fields. Hand to mouth. But once you give them to these homes you have no say.i do not understand rehoming a parent to strangers. Would not do that to a baby or a pet - would you?

Replies 3

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Jen commented May 1

Jen

CT ·

May 1

@Dolores Deluxe Taking in one's elders for home care isn't possible for everyone, though I'm glad it worked for you & your family. My mom explicitly said she didn't want to live with me, though we had a good relationship, and I visited her or spoke with her daily.

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Denise commented 12 hours ago

Denise

Pittsburgh PA ·

12h ago

@Dolores Deluxe We were able to keep my mom home for 3.5 years with 24 hour care. This care was pieced together with my sister, me, and paid help from my mom's savings (depression era mind set secretarial savings) as well as ultimately qualifying for medicaid coverage. I am an RN, my husband an OT and my very, very, helpful cousin a hospice RN. So how lucky were we to have that? Also we had other kind and compassionate staff. However, about 3.5 years in she fell again and was non weight bearing. The team could not handle this level of care, some yes, but not everyone. She ended up in a facility where we supplemented her care for 8 hours/day covering lunch and dinner, bathing, social contact and such. Sadly, she died there, which I hated. I have seen it from both sides. It's a very hard, daily, responsibility. Please do not judge those of us who can't manage at home. This article content was of great interest to me. Watching someone who did not want tube feedings, I had to wonder if we should be feeding her. I have written up my own wishes as a result which include no feeding if I can't feed my self . I may attach this to my paperwork. Best to all going through this extremely difficult process.

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Jane Norton commented 7 hours ago

Jane Norton

Chilmark ·

7h ago

@Dolores Deluxe I have no children. What then?

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LF commented May 1

Berkley Springs, WV ·

May 1

Hospice physicians can and do work with this situation all the time. Physicians can write medical orders that detail specific feeding needs and practice. It remains difficult to have staff follow the orders while working in a culture that forces feeding. Hospice and palliative care can be a way to address this issue in care facilities

Recommend 18

Julia commented May 1

Julia

Ohio ·

May 1

We used to let people die a natural death of inanition. They used to call it "pining away". It's unfortunate our animals can have a more dignified death than many humans. I can only hope my wishes are respected in the event I can no longer retain the capacity to reason.

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Larry B. commented May 1

Larry B.

Lancaster, PA ·

May 1

I'd suggest it be called just "Comfort Feeding" and omit the word "minimal."

That might accelerate its acceptance.

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KJ commented May 1

tn ·

May 1

My advance directive states explicitly that I do not wish to be maintained by artificial means or provided with nutrition if I am permanently incapacitated physically or mentally. When my attorney prepared the papers, he told me my wishes were clear but that in the event of a catastrophic accident or a degenerative brain disease, it was likely my directive would be ignored. This is, after all, a religious red state.

Recommend 7

Jeff and Mary commented May 1

Jeff and Mary

Needham, MA ·

May 1

This is not new. It is part of the decline into death that the body knows when to lose appetite. In a more traditional path, there is a vigil during this period when the body may want only sips of water or a tiny taste of food. It is not elder abuse to acknowledge this stage and for the care providers to comfort the family while this stage occurs, after which the body declines further into somnolence.

Recommend 22

🦊 commented May 1

🦊

🇺🇸 ·

May 1

"... criticized Dr. Wechkin’s idea as slow starvation, which many would deem too cruel for pets ...."

Which is why we euthanize pets, when it is the best thing for them, without their knowing consent.

Recommend 10

Emme commented May 1

Emme

California ·

May 1

if I put it in writing when I'm competent that I do not want any feeding, nutrition, or hydration, then that should be honored. It's my body. You get to manhandle it and force things into it without my consent.

Replies 1

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Sarah commented 11 hours ago

Sarah

Upstate NY ·

11h ago

@Emme the only tricky thing with that is not knowing what the future self will want. I like the comfort feeding concept because there's access/assistance with food and drink as desired, but there's no force.

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Close replies

Okbyme commented May 1

Okbyme

Santa Fe ·

May 1

There was a recent nyt article about doctors who refused to honor end of life documents that said that life prolongation measures were not the patient’s choice. So even if you responsibly fill out the forms the medical establishment might think that you should be kept alive artificially. I’m going to switzerland.

Recommend 12

Tony commented May 1

Tony

New York City ·

May 1

This is a horrific disease, and we can thank Mr. Kennedy Jr for eliminating research funding.

It is apparent that this administration lives in the world of "happy talk"; everyone in the family and communities suffers from the effects of this disease.

We do not have quality training for health care workers, but management companies are making money and there is no accountability.

Reality is Reagan cut funding for research in the 1980's and he developed the disease while in office. This indifference and cruelty by our politicians never ends.

How many people need to die before this country decides that we need to put as much energy into moving the needle forward, yes there has been limited success, but Kennedy Jr. has shown that his madness is in charge, and he doesn't care. We can spend 26 billion a day on a war of choice, but we turn our back on the deliberate orchestration of suffering by the GOP

Recommend 22

Jo commented May 1

northcoast ·

May 1

Any adult ought to consider End Of Life issues; what their desires are upon their demise which includes (i) medical (ii) family (decision making or not) (iii) financial and (iv) final decisions/burial/cremation issues. Period. These are especially the case for those married and those w/ children, esp young children.

To NOT have those ducks in order/line is to ignore One's responsibilities about life in this century. Period.

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Jay A commented May 1

Jay A

Edmonton Alberta ·

May 1

Of course the doctor thinks it is ethical to feed. It preserves his income.

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Over-diagnosed commented May 1

Over-diagnosed

USA ·

May 1

This country has it backwards. Decisions should be allowed before this point to hasten death. Death with dignity. Why let someone starve their body for days or weeks before dying? Let’s skip this phase and give them an appropriate concoction to bring on death. The end point is the same.

Recommend 9

JR commented May 1

NYC ·

May 1

A helpful little book about dying with intention is "Estimated Time of Departure" by William Donaldson.

A great podcast about issues around dying is "Exit Strategy"

Recommend 4

Fred commented May 1

Fred

Southern NM ·

May 1

Another story that describes the plight of those who can't care for themselves. I, myself do not want my life extended just so I can wait endless hours for some family member to come sit with me trying to find something interesting to say. Assisted suicide will be my salvation

Recommend 9

Sweet Sue commented May 1

Sweet Sue

Iowa ·

May 1

I am so over church dogma dictating peoples' choices. First its abortion, now its access to birth control and stopping people from having control over how to end our lives. None of these choices are mandatory: if you don't want an abortion, birth control, or death with dignity don't do those things. Let the rest of make our own choices.

The US was founded by people who wanted freedom from religious tyranny, but these Xristian Nationalists want to control every aspect of our lives as they see fit. Enough already!

Recommend 16

jda commented May 1

jda

North Carolina ·

May 1

Why not get her into hospice care, where mandatory unwanted food is not mandated?

Recommend 5

Wendy B. commented May 1

Wendy B.

UT ·

May 1

Go draw up a living will for yourself. Do it now. Make sure it says exactly what you want done for you when/if you become mentally impaired for whatever reason. And make sure people know about it: give it to your doctor, friends, family.

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texasexcatholic commented 5 hours ago

texasexcatholic

texas, USA ·

5h ago

@Wendy B.The point of this article is that the Living Will is not respected in certain circumstances.

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-ABC...XYZ commented May 1

-ABC...XYZ

NYC ·

May 1

why is it that ' dumb ' animals do it right, and we with the massive ' cerebral complex ' don't?

Recommend 4

Z West commented May 1

Z West

USA ·

May 1

This is why I won’t go to a catholic hospital. They won’t honor my last wishes for when I want to die. And those darn Catholics are buying up a lot of hospitals so it makes it hard to get care with a hospital close by. Make sure you know who owns the hospital before you go.

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Leisle commented May 1

Leisle

London ·

May 1

@Z West it seems ridiculous to me that any religious institution can own a hospital and install their beliefs onto the people who need to be in said hospitals.

Replies 1

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Eve commented May 1

Eve

Sacramento ·

May 1

Even if a person has said they do not want to live with dementia, according to one book by a gerontologist I read a few years ago, research done on dementia patients shows they are often content although people around them are distressed. People cannot accurately predict how they will feel if they get dementia, apaprently. So who actually benefits from letting the dementia patient die? If it benefits those surrounding the patient more than the patient themself, the framing becomes rather different.

This is different from the physical distress caused by feeding tubes! Only addressing voluntary eating here.

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Emilie commented 2 hours ago

Emilie

Virginia ·

2h ago

@Eve The problem is that healthcare workers are strangers. They don’t know whether a person with advanced dementia is content. I took care of my mother and I can tell you, she was not “content”. She was afraid. She couldn’t tell if it was time to go to bed or time to wake up. She couldn’t tell if she was awake or dreaming. She didn’t remember where she was or who she was or who her family was, except for me and my sister. That’s the reason that those with dementia wander. They are looking for something familiar. Instead their days are spent in a strange place with strangers and they are very alone. It’s heartbreaking to watch.

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Emme D commented May 1

Emme D

Ohio ·

May 1

It will always amaze me that so many people, especially Christians, think dying is the worst thing that can ever happen to anyone. Yet we all die.

Why do we hang on to life so hard? Especially when dementia or any end-stage terminal illnesses never prolongs quality of life. Extraordinary measures we insist union today rob people of dignity & choice. What is the point of keeping someone alive who's actual self has already departed? Just because we've figured out how to best nature?

Does it all just come down to a fear of dying? That some of us fear it so much, we can't even let others go when their time comes? This is just so odf; particularly in those who purport to believe in life after death & the continued existence of the soul.

When my mom passed away I was the only one with her. Our eyes were locked on each other. I saw a separate light enter her eyes & I watched her leave with it. She was surrounded by a deep love & peace I could almost feel & even senses I could choose to go with it too. I didn't. It was my choice. I don't fear death & I don't want anyone artificially keeping me here. Let's go back to the millennia old ways of death being an important part of life that's to be embraced.

Recommend 11

FNA commented May 1

FNA

Providence, RI ·

May 1

This forum is inevitably biased in that advanced dementia patients can't participate and speak up for their own interests. How tragic that so many participants have an ableist bias that prevents their respecting advanced dementia patients who express their life-affirming preferences in the only way they can--by eating and smiling with evident pleasure.

Recommend

Peter Sacks commented May 1

Peter Sacks

Houston, TX ·

May 1

My wife is on this path. She's been diagnosed with Alzheimer's and Vascular Dementia and now lives in a memory care location.

Unlike Linda Lawson, she does have an advance directive (Do Not Resuscitate, No Heroic Measures) and I have Power of Attorney for her health care.

She is slowly fading away. She does eat the meals that she is provided but spend most of her day sleeping. She used to read but is no longer interested in the books that have been provided. She has little interest in the activities at the Memory Care location. She has become incontinent.

She keeps picking at things. Cuts and scabs are rubbed until they're raw and bleeding. The Dexcom sensors to measure her glucose level are pulled off. She tugged at a dental brace, removed it, and threw it away.

I anticipate that I may have to face the decision of what to do if she no longer wants to eat. The loss of her quality of life is obviously a factor in such a decision.

I'll probably decide to stop feeding and allow her to die. But that choice will haunt me for the rest of my days.

Replies 1

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jane commented 5 hours ago

jane

British Columbia Canada ·

5h ago

@Peter Sacks I’m sorry that you and your wife are both struggling with her dementia.

If I am ever in your wife’s situation, I hope and pray that my husband will follow my wishes to let me die peacefully, without feeling any guilt for doing so. He would be releasing me from more confusion and misery, and I would so much rather that resources needed to keep my body alive be used to support ongoing health and happiness of those who can benefit from enjoying their lives.

I hope when the time comes that you are able to feel supported, with good memories of your wife’s healthy years.

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CJ commented May 1

San Diego ·

May 1

Mrs. Lawson absolutely deserves to not live like this. I watched my parents decline and I swore to myself that I would not live like this if dementia strikes me

Our country needs to allow people in these situations to choose to end their lives. I've told my family and friends that I'm headed to Switzerland when dementia hits.

I will not put my family through having to deal with this horrible non-life of simply existing. I prefer any money I've saved to go to my family rather than pay exorbitant care fees.

Replies 1

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jane commented 5 hours ago

jane

British Columbia Canada ·

5h ago

@CJ I absolutely agree. The idea that my family would have to use any of my income and savings to keep me alive when I am no longer able to care for myself and recognize loved ones makes me crazy. I don’t understand how draining family income and medical resources makes any sense IF I have expressed my desire to die earlier rather than later, and on my own terms.

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Rena commented May 1

Rena

New York ·

May 1

Until we become more compassionate as a people and in our laws, people will be made to suffer with dementia. I have painfully witnessed it and have an advanced directive that is clear in what I do and don't want.

Yet MAID laws as they are currently will not honor my wishes. Doctors will resist my wishes. This demographic and biological problem is likely to escalate into an emergency.

If only we could open to other, more humane solutions. We treat our pets more humanely than our fellow humans.

Recommend 8

GBR commented May 1

GBR

The Northeast ·

May 1

It’s perfectly natural for people - with or without dementia - to lose their appetites as they approach end of life.

Of course food should be regularly offered, and assistance given if the patient indicates that they in fact want to eat it.

Force-feeding, on the other hand, is unnatural and cruel.

Recommend 12

Well-edited commented May 1

Well-edited

Ft Lauderdale ·

May 1

In The Netherlands a competent person can file a living will stating their wish for assisted suicide when they are no longer competent to confirm their wishes because of dementia. This is as it should be - a person being allowed to determine how they wish to die and when without being second-guessed. A person shouldn’t have to be subjected to starving to death or force fed. There is no coming back from dementia. A person should be allowed to say in advance that he doesn’t want to live with dementia and wish to end his life. And as an atheist I really don’t feel the religious right has any say in medical matters.

Recommend 9

Jeff commented May 1

Jeff

Rosendale ·

May 1

I think the article should at least have addressed the question of whether a person of right mind (i.e. pre-dementia) is able to write a directive which establishes and annunciates a right to die and more specifically assisted suicide when one reaches a certain stage of dementia. I think stopping or curtailing feeding is cruel both for the patient and the health providers. Rather, why not just feed the person some pills where they fall to sleep painlessly and never wake up? That's what I'd like to happen to me when that time comes. Spare everyone the emotional hardship. Why no mention of this option in the article?

Recommend 5

Sherry Anderson commented May 1

Sherry Anderson

PNW ·

May 1

America, where we make such large claims to have freedoms. What a joke. Citizens are held captive by religion influenced laws. Women have no control of their bodies (anti-abortion laws). Elderly persons diagnosed with Glioblastomas with low survival rates (months) and NO cure are forced to undergo radiation and chemo treatments. Treatments that make the last months horrible for patients and offer no cure. Money made during treatment of patients is more important than a person's wishes. Same for dementia patients - rest and care facilities are NOT going to give up their guaranteed Medicare payments they make by warehousing people with dementia.

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Emilie commented 2 hours ago

Emilie

Virginia ·

2h ago

@Sherry Anderson Medicare does not pay for long term care. You must exhaust all your assets before you can qualify for Medicaid and that only gets you into the worst long term care facilities. Otherwise, pay around $80,000/year or more for memory care units. Middle class people generally have to rely on family to take care of them.

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42 commented May 1

Washington DC ·

May 1

Someone with advanced dementia qualifies for hospice. Hospice care ensures that treatment is focused on comfort, rather than prolonging life.

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Milwtalk commented May 1

Milwtalk

Milwaukee ·

May 1

My MIL had dementia, but I believe she died of starvation. Though she was being fed, she forgot how to eat.

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BFF commented May 1

BFF

SFO ·

May 1

These experts who think minimal comfort feeding is mired in ethical quandaries have clearly never met someone with late stage dementia. Letting death happen and caring for the patient at the same time is possible. When one is at the end of their life focus on comfort. It’s a one way event, you cannot reverse dying.

Recommend 4

Mick commented May 1

Mick

Columbus ·

May 1

I had a couple family members who were terminally ill (not dementia) and knew they wouldn’t survive but didn’t want to commit suicide on religious grounds, so they committed what I call “Catholic Suicide” by refusing to eat or drink. Doctors went on to change the diagnosis to “failure to thrive”. At the last, they were provided morphine shots for their comfort, which basically pushed them over the edge.

Recommend 7

Michelle529 commented May 1

Michelle529

T.O. ·

May 1

I think refusing food is one of the few ways to exercise self control and to communicate that dementia patients have. To disregard them and force them to eat against their will is cruel. And the care facilities seem more concerned with liability than with the well-being of their charges. I was incensed to read that the Lawsons were reported to the authorities.

Recommend 5

MAW commented May 1

MAW

Virginia ·

May 1

Unfortunately, we can’t have a mature and thoughtful conversation about end of life issues for our aging population, because there are too many idiots in government and legislatures who are more concerned about devising clever tweets about death committees and killing mama than mature discussion.

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Kathy commented May 1

Kathy

SF ·

May 1

If you don’t want busybodies telling you that you don’t have the right to control your own body and death, please join the pro-choice movement. We’ve been fighting for you.

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Dave commented May 1

Dave

Thankfully far from Trump ·

May 1

Frankly, I thought that mine and my wife's Directives to Physicians covered this. My wife now has dementia, and we are exploring memory care units, because caring for her at home is becoming increasingly difficult. But she definitely enjoys her meals at this point, and we make sure that she gets good food. She is not at the stage where she does not recognize family, and she interacts regularly.

When my aunt suffered from dementia, and we had to get her into memory care, she did not have an advanced directive, but had expressed that she did not want her life prolonged when she could no longer function. She suffered a broken hip at age 95, and lapsed into sleep, aided by pain medicines. The family decided that surgery for the hip and prolonging her life were neither one appropriate given her condition and past expressed desires. Food and drink were withheld. She was asleep, and feeding and hydration could only have been provided unnaturally. She soon passed away while sleeping. All family members believe that we did the right thing, rather than prolong her suffering.

Recommend 15

Patricia Owen commented May 1

Patricia Owen

neptune beach ·

May 1

This article is long overdue. It's just the beginning of the discussion around dying with dignity. Keep in mind, people at this stage of dementia do nothing for themselves. They are nothing more than infants in aging bodies. Dignity is erased. It's a horribly tragic diease. The pain is emotional to those who love us the most. Thank you.

Recommend 9

JP commented May 1

Brea CA ·

May 1

I am a hospice doctor and am now dealing with parents with advancing dementia. It is quite hard for me to watch and I imagine infinitely worse to experience. I do my best to give them the best quality of life I can. I think they try their best to keep trying for the sake of our families. Even I wish I had the courage and strength to approach their lives with a philosophy introduced here. Thank you for this article.

Recommend 9

Ann commented May 1

Ann

MN ·

May 1

I'm 75 years old; love my family and friends and am still deeply engaged in my artistic activities. However, I've long been of the opinion that it is my right to die... and have an advanced directive, and my children and husband are well aware of my wishes. However, while I'm not against emergency care, I am afraid that such care might leave me in a state which I do not want. I'm well aware that Oregon and Washington state have legalized assistance in dying. Personally, I would not want my family to be in the suggested position condoning the minimal feeding approach ... come on...

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Renee commented May 1

Renee

USA ·

May 1

@Ann

Do you mean you do not agree with the approach of minimal comfort feeding care or that you do, and you just would feel bad if you had dementia and the family had to make that decision? Add it to your AHCD if you want your decision clear. It’s not a guarantee, but it’s better than not.

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Sue commented May 1

Sue

Silicon Valley ·

May 1

When my father had advanced cancer he was at home and on hospice. He went into a coma. The hospice nurse said they could put him on feeding tube and keep him living maybe 2 or 3 months longer. That isn't what Dad wanted, or any of the family. We let him die peacefully at home in about 3 days. Why is advanced dementia any different? If I don't know anyone and can't feed myself I will be quite willing to die. Thanks for this article. I'm going to update my advanced directive.

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Hello commented May 1

Hello

Somewhere ·

May 1

Thirteen years before he died my father suffered a stroke. A few days later a neurologist showed us his brain MRI. In the MRI image, a significant part of his brain looked like it had been melted. The damage was not from the stroke, but was from decades of untreated high blood pressure. He had declined blood pressure medicine for years presumably because of unwanted side effects, but I am not certain why he did so. It led to vascular dementia and it was hard on everyone, but we will never know what it was like for him. He stayed in memory care for his last few years. He eventually stopped wanting or trying to eat. I am grateful that no one forced the issue.

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NeilG commented May 1

NeilG

Berkeley ·

May 1

I can't help thinking that a large portion of medical opposition to minimal feeding is rooted in fear of medical malpractice lawsuits, even though many states have legal limitations on medical liability. When a death is involved, it seems that the health industry wants to avoid any lawsuit, because those cases have the largest judgments if the plaintiff(s) win. The answer is for state legislatures to recognize minimal feeding as a legitimate medical procedure. That won't stop all lawsuits, but it should lead to fewer, much lower, judgments, so care-facility administrators won't have to live in fear.

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Patricia Owen commented May 1

Patricia Owen

neptune beach ·

May 1

@NeilG sometimes care appears to be rooted in the patient's ability to pay for care. It's interesting how people whose money runs

out , finally are allowed to die with dignity.

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David commented April 30

David

Somewhere in the old America ·

April 30

All of the people that I know in APS would not interfere with this patient or the family’s wishes a car breakdown was convenient

The individuals and institutions that interfere with the patient’s wishes and a family’s wishes should be penalized and taken to court.

I have this written into my will and trust.

That one is going to stop me or the ones I love from doing what we want and I relish the day that they try.

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Dave commented May 1

Dave

Thankfully far from Trump ·

May 1

@David, Your will is not the place for this. Wills are only active AFTER death. You need to put your wishes into an advanced directive. After reading this, I intend to update mine to cover "natural feeding and hydration, by mouth." It is too late for my wife to do so, because she already is in a state of dementia, and is unable to make such directions. I have POA, but though I know my wife's wishes as expressed frequently when she was of sound mind, I neither will nor can modify her advanced directive. I hope I can make sure her wishes as I know them will be carried out if the need arises.

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hiker commented April 30

hiker

Las Vegas ·

April 30

Even with Advanced directives Do Not Resuscitate that includes Do Not Force Feed manifestation the present medical practice seems to ignore the dying's dignity.

It sounds the medical society only focuses on profiting from the last moment of the dying patients. Dignity of death is non-existent.

I sent off my husband two years ago from my 100% home care after his 4 years of Alzheimer. He lost appetite toward the end. I did not force feed him.

My husband was comfortable. He was pain free.

The best of all, I helped him avoid the medical society's brutal treatments had he been placed in a facility.

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hiker commented May 1

hiker

Las Vegas ·

May 1

@hiker

P.S.

Dying patient's body is shutting down.

The nature dictates to refuse food from the dying.

How difficult is it to understand that??????

The medical society ignores this nature's phenomenon and pushes force feeding despite of the written DNR Not To Force Feed Me.

The Medical Society only wants to squeeze the last dime out of the dying. This practice will continue under the present investor's control of the world finance.

Hospitals are not qualified to send off dying with dignity.

Only good home care is. I will not die in hospital or any facility.

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Randy Farhi commented April 30

Randy Farhi

los angeles ·

April 30

heart breaking story. and, in my experience, Adult Protective Services has very little power to interfere with what the husband was doing for his wife.

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Souixe1357 commented April 30

Souixe1357

Oceanside, CA ·

April 30

This story really makes me want to seriously do the walk off into the wilderness with a blanket and let nature truly "let take its path" route. Seems far more humane in the bigger picture.

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Ann commented May 1

Ann

MN ·

May 1

@Souixe1357

That's what I envisioned for myself as a teen... I'd wander off into the wilderness and die of exposure. Now I'm 75—and know that doing such a thing would inevitably leave my children, family and friends with feelings of guilt. If possible, I'd far prefer an fully open choice; to be surrounded by friends and family; drink or be given some sort of elixir of death—and go forth...

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Renee commented May 1

Renee

USA ·

May 1

@Souixe135

If you have dementia, you likely won’t remember your wishes or think to do that or be able to carry that out, unfortunately.

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Regnad Kcin commented April 30

Regnad Kcin

CA ·

April 30

No one in skilled nursing or hospice care will recommend a feeding tube, unless the family forcefully demands it. When my mother stopped eating the idea of a feeding tube was never pushed on us by her caregivers.

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TrainRyder commented April 30

TrainRyder

central california coast ·

April 30

@Regnad Kcin my mother's alzheimers became far worse after she fell and 'broker her hip'/femur. It was assumed that she could not feed herself. she was placed in a wing of the care home where patients were fed. It was disgusting, thoughtless chatting staff stuffing a spoon full of gruel or whatever at people who did not want it. I was able to stay locally for six weeks so I had her moved to the common dining room. she was perfectly able to feed herself, she just needed someone to help her select from the menu. she could no longer do that. Mom was able to 'come back' a bit as she recovered from the fall. But I saw the 'feeding' of people strapped to wheel chairs, a couple of cases fit the description of Mrs Lawson, in the article. As the article says, these homes are required by Medicare to 'provide' three meals a day... I think this minimum food idea is perfect. I will amend my own papers to include it.

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Wears Pearls commented April 30

Wears Pearls

NYC Metro Area ·

April 30

When my mother had a stroke two months prior to her 96th birthday, she had been living in an assisted living facility in SC. She spent a week in a regular hospital, then was transferred to the infirmary at her living facility. When she was in the hospital, they tried to put a feeding tube into her stomach. My brother had to present the form that stated her wishes to not be tube-fed to the hospital officials to prevent this from happening.

She never suffered from dementia & was an active participant in activities where she lived. She died two weeks after she went to the infirmary, slowly eating & drinking less. A feeding tube would have extended her life months or years. We were extremely grateful that she had the signed advanced directive decree. I urge everyone, regardless of age to get the form & fill it out. We were told to keep a copy attached to the refrigerator, as EMS techs know to look there for it.

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Cathy commented April 30

Cathy

Chicago ·

April 30

Comfort feeding is the right thing to do! Wet sponges for orall care are good! Absolutely, never force feed the elderly because of the dangers of aspiration! End of life care involves writing your wishes down! No respirator, just supplemental oxygen and pain medicine, no dialysis and no feeding tube! Let the natural shutdown of the body continue in order to have a good death! as a retired registered nurse I have been a witness to peaceful transitions out of this earthly life!

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Chris Carol commented April 30

Chris Carol

North Carolina ·

April 30

Beautiful family story of love and courage to do what was right for their wife and mom. We deserve to die with dignity.

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Andy commented April 30

Andy

Williamsburg, VA ·

April 30

This describes much of what my brother and I experienced while trying to convince the staff of our mother’s care facility to follow her wishes. She had said for years that she “would just stop eating” if she ever had a stroke and could not take care of herself. We tried our best to direct the staff to ask Mom if she wanted to eat, and if she said “No,” then to skip that meal. But the staff continued to feed her without asking her that question. I am sure that they were motivated by the scrutiny they would have been under (mentioned in the article) if Mom would have deteriorated because she wasn’t eating enough.

Mom was in a very fine care facility. It strikes me that affluent people are more likely to live longer than they would like because they can afford such a facility where they will be better taken care of than they might wish to be!

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BJ commented April 30

SC ·

April 30

I started my career as a nursing home social worker. It makes,no sense tomato wake a dementia patient to feed them, regardless of wishes about food intake. In cases like Ms. Lawson's, comfort feeding makes sense. That's not neglect. It's live.

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BJ commented 3 hours ago

SC ·

3h ago

@BJ Darn autocorrect! I actually intended to say that "it makes no sense to me to awaken" a patient to feed them. The last sentence should read, "It's life."

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Marie commented April 30

Marie

NC ·

April 30

I have felt SO strongly about this since my father's dementia--watching others in the memory care unit where we'd had to move him be essentially force-fed was horrifying. In his case, my father never lost his zest for food, and that led my sister and me to refuse to let the doctor prescribe a pureed diet for him, with the understanding that this could lead him to aspirate because he was losing the ability to swallow. It was a risk we were willing to take, knowing that eating was the one thing that seemed to still bring him enjoyment. It may have hastened his death, but by his death, it was a life this smart, active man would not have wanted to keep on living. I pray if this happens to me, our children are able to force any caregivers to follow my wishes to get comfort feeding at most.

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ScienceGeek commented April 30

ScienceGeek

Maryland ·

April 30

“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.”

Yes, with pets we are humane enough to put them down when they are suffering. I wish it was easier to do this with people. I certainly,y am retiring in a state that allows assisted suicide, but even that is too restrictive at this time.

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Cece commented April 30

Cece

Phoenix ·

April 30

My mother was in a nursing home for many years before she died. She developed dementia and rarely spoke. The week before she died, she utterly refused food and had very little to drink. She just clamped her teeth shut so nothing could be put in her mouth. There was never any discussion of a feeding tube. I would never have allowed it, in keeping with her wishes. She was a strong, stubborn lady right to the end.

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Carole commented April 30

Carole

Seattle ·

April 30

Since this article highlights a Seattle-area family and quotes the executive of Kline Galland, which is a few miles away from me, it reminded of this Advance Directive for Living with Dementia. The latest revision is from last year.

https://assets.washingtonlawhelp.org/sites/default/files/forms/pdf/2025-10/njp-planning-512-ad-for-living-with-dementia-2025_10.pdf

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CharBear commented May 1

CharBear

Here&There ·

May 1

@Carole Is that only accepted in Washington State?

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Daveysdad commented April 30

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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Ellen Guest commented April 30

Ellen Guest

Brooklyn ·

April 30

My late husband stopped eating over a period of months. By the time he was in a nursing home he simply refused to swallow. A lovely young OT whom he normally would have listened to couldn’t figure out whether he was afraid to swallow or just refused. I knew he never wanted a feeding tube, which was suggested. He died peacefully in just 40 days away from home.

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Mike Mead commented April 30

Mike Mead

Hawaii ·

April 30

I too had employment in my teenage years that took me into nursing homes. What I saw there horrified me, and I promised myself that I would never suffer that fate. At 70, my resolve is still strong. My wife and I have our legal documents in order, but there’s no guarantees there. It’s the ultimate indignity to have one’s right to self determination taken away at the end stage, and I that hope we become more enlightened in this area.

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Nls commented April 30

Nls

Texas ·

April 30

Great article. Gave me lots to think about.

I think the bigger problem in our society is respecting the words of someone who has made it clear in their lifetime that they dont want to live in a state of unawares. More public awareness about advance directives would be helpful.

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Bill commented April 30

Bill

Mandeville, LA ·

April 30

I am 77 yrs. of age. My mother, who was 85 yrs. old passed away in 2015 due to dementia. Prior to her death, my father, who at 89, passed away in 2014 from kidney failure. My sister and her husband lovingly allowed them both to live in their household as they were making their passages through the final stages. Even though my parents were both in hospice care, my sister hired a wonderful caretaker, who lovingly, fed, bathed (sponge) both parents, as well as spent time holding their hands and gently talking to them, and she was an angelic godsend. After Dad passed ( Mom was really unaware of pretty much everything and in an unconscious state), Mom's body was descending into what I would describe as a cadaver state, and I was present one day when a new hospice nurse came to dress the bedsores on her body, which by this time were considered "wounds". The one at the base of the spine was about 11/2" in diameter and you could see bone. I questioned the nurse as to why Mom was experiencing this state of body, while still receiving 2-3 feedings a day. She stated that all of the nutrition was primarily going towards the 3 wounds, and that is when my sister and I wondered whether to continue to feed her. (At this point if I recall correctly, she had been bedridden or in a wheelchair for at least 6-7 yrs.) The feedings were discontinued and she passed about 2 weeks later. Very tough decision to make. Love you, Mom.

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Lynne commented April 30

Lynne

Albuquerque NM ·

April 30

@Bill

I'm so sorry for the prolonged suffering your mom and your family experienced. One has to wonder the why of it.

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Scott commented April 30

Scott

Hendersonville, NC ·

April 30

This was very interesting to me, as I visited a friend in a memory care unit a few days ago. She was a fellow choir member -- lively, funny, nice alto voice; until she developed early-onset Alzheimer's. I arrived at lunch time (the memory-care unit eats lunch early) and wound up feeding her, as the staff in the unit have several residents they need to spoon feed and are a bit overstretched. (She did pick up and eat several items with her fingers, and used a glass to drink water.) My observation was that my friend, and the resident who needed prompting to eat, and the one who tried to give me his lunch .... they all quite enjoyed their food once they started in on it. They particularly enjoyed the homemade lemon bars I had brought (only enough for my friend's table, unfortunately). So I understand how this could be a hard protocol for staff: lunch was probably a bright spot for memory care residents. I think this is one of those instances where decisions about care protocols are not one size fits all, and we will be encountering them more and more as our population ages.

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cowalker commented April 30

cowalker

Ohio ·

April 30

@Scott When my mother went into memory care she still enjoyed tasty food. The folks you were at table with were still at this stage. Gradually my mother lost more abilities and had to be spoon fed. Then she started having swallowing issues, and the food was no longer tasty--it was a slurry of nutrition. She didn't take much of it in. My mother had no advance directive, but there was no pressure on us to start tube or intravenous feeding. In fact, early on, the staff prepared us for the time when it would be needed and explained why it wasn't advisable. From my personal observation I think we can be guided by the person's natural loss of interest in eating.

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Greyhawk commented April 30

Greyhawk

Missouri ·

April 30

My 92-year-old mother was deep in the throes of dementia when she fell and broke her hip. The subsequent surgery was successful but she lost the ability to swallow. Her advance directive was clear that she did not want intubation and the care facility, medical providers, and all of us in the family honored her wishes. We made sure that every possible palliative care was provided but no intravenous nutrition. Her body had long outlasted her mind but she died peacefully a few days later with all of her children by her side.

So....you can imagine my despair as my middle sister was diagnosed with an aggressive dementia that rapidly displaced the wonderful and artistic woman who had brought such joy to many lives. Many falls later (typical of Lewy bodies dementia), she ended up in the hospital connected to a profusion of tubes. I had to fight as her staunch advocate for placement in hospice and then return to the memory care unit of her residence. Food was available constantly but she consistently refused....and the unambiguous language of her advance directive provided safe harbor for the care facility to meet her wishes. She died a few days later, released from the bondage of her dementia. Having watched my loved ones contend with the medical world, you can be damn certain that my advance care directive and DPOA are crystalline about my wishes. I've tried to live my life with honor....and now I hope for death with dignity. Mind you, I'm in no hurry!!

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Andy commented April 30

Andy

Williamsburg, VA ·

April 30

@Greyhawk Not too many generations ago, a broken hip could not have been repaired and a person in the situation you describe would have been confined to bed, developed pneumonia, and would have died a natural death, all the while surrounded by loved ones. I think that is more humane than current practice.

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Andy commented April 30

Andy

Williamsburg, VA ·

April 30

@Greyhawk I forgot to add: The way you cared for your mother after the hip surgery was perfect! I’m glad her final stage of life was short.

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CC commented April 30

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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Bboon commented April 30

Bboon

CA ·

April 30

@CC When I was a physician at the VA, I had quite a few patients whom you could describe as living "corpses."

We were supposed to keep them alive because a relative or semi-destitute girlfriend depended on their social security or pension check. We did our best to keep them in good shape and pain-free, because they had no will or advanced directive stating that they wanted to die a dignified death, and somebody depended on their finances.

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Lynne commented May 1

Lynne

Albuquerque NM ·

May 1

@CC

I say with all due respect that longevity, as a goal in and of itself, is vastly overrated.

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NYT Reader commented April 30

NYT Reader

Manhattan, NY ·

April 30

We all agree that we have the right to pursue life, liberty, and the pursuit of happiness.

So while we can still make cogent wishes and demands before we decline--those wishes must be honored when we lose our capacity irreversibly.

Medical barbarism should simply be illegal to keep the suffering alive against their current or former wills.

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Johnny V commented April 30

Johnny V

SO CA ·

April 30

My dear old dad lived to be 98 1/2 when he passed, he lived with my beginning at 94 years of age. My part time care giver came in 5 days week and my 2 daughters and friends would help with shaving and haircuts. and I with showers. The only think he did that was very odd was that he put his best suit on with a small bag and walked up to the corner (2 blocks away) and asked the bus driver if his bus was going to Chicago. The local police brought him home and my 2 daughters said he had them in "stitches" as they pulled up. He was a former boxer in WW! and would sometimes challenge me to a boxing match: ) On Valentines day I went to check on him before going to work, I could see that he had suffered a massive stroke during the night, at about 1 pm that same day I got him up to sit him in chair and then he reached out and "bear" hugged me (I don't how he did that since he was completely immobilized), took a deep breath passed. He came to America a 16 years old from Italy and would always tell me "you have to fight for everything"!

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Lynne commented April 30

Lynne

Albuquerque NM ·

April 30

@Johnny V

Your dad sounds like a joy! I'm glad you got your hug.

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BrewDoc commented April 30

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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Miriam Berkman commented May 1

Miriam Berkman

Spokane ·

May 1

@BrewDoc

Depending on what State you live in you might have the option to develop a plan for if you have dementia. We need to recognize there are worse things than death.

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Tom commented April 30

Tom

Manhattan ·

April 30

My wife died of Alzheimer’s Disease in 2017. When she was in the last stages, she had home hospice care. One weekend, she refused to eat or drink, and she died 11 days later. Years before, she had signed her advance directive saying she did not want to be kept alive with a feeding tube. That made our decisions easier; we followed the instructions of our hospice nurse. We didn’t have the dilemma of whether to provide food or drink; her body was telling us that it was time to go.

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Barbara commented April 30

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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Hrach commented May 1

Hrach

PA ·

May 1

@Barbara

Where I work, families want feeding tubes to keep their relatives alive indefinitely, no matter how poor their quality of life.

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Wendy B. commented April 30

Wendy B.

UT ·

April 30

@Barbara, many healthcare professionals live in fear of being sued by the patient's family members. If they let a patient starve to death without some kind of written, legal directive, they are open to such a thing. Even if it is obviously in the best interests of the patient to let them go.

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Senior Citizen commented April 30

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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Lynne commented April 30

Lynne

Albuquerque NM ·

April 30

@Senior Citizen

I'm very sorry for your loss. Take care of yourself now.

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anne commented April 30

anne

CA ·

April 30

@Senior Citizen what wonderful care you and your daughter provided at the end of his life, including your decision to have him go to hospice. A blueberry muffin and juice sounds like a delightful final meal. Treasure that moment of happiness he was able to have before he died. Wishing you peace, comfort and happy memories.

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Patti Travaglio commented April 30

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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Michelle commented April 30

Michelle

St. Louis ·

April 30

@Patti Travaglio Wholeheartedly agree; I've only done 10 years acute. 40 years have been spent in SNF LTC as an educator and administrative. It is absolutely beyond cruel: it is apathetic at best, torturous at worst. With education and allowing voices of both residents and families to be heard, we have been more successful than this article seems to indicate. Your experience with pureed food, for example: here we can provide "regular" texture even if a puree would be medically recommended, as long as we can document discussions and agreement. Because for us, it IS about the quality of life. Another example: how is someone going to deny an 87-year old woman a piece of cake because she's diabetic?

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Ilene Bilenky commented April 30

Ilene Bilenky

Ridgway, CO ·

April 30

@Patti Travaglio. I nremember Karen Quinlan in the late 1960s? in New Jersey and the battle to get a long-time feeding tube removed. And Terry Schiavo, too. I am a retired RN, MPH, US Army Reserve medical officer. I have no family and live alone in a small wonderful town. My updated advance directives are taped to my refrigerator, but not witnessed my two unrelated people. I worked in AIDS hospice and end-of-life geriatric dementia care. I adopt senior dogs and kn ow to euthanize before having a sudden emergency. There are far worse things than our (inevitable) deaths.

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MidwifeMary commented April 30

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.

Recommend 63

Sc commented April 30

Brooklyn ·

April 30

So heartwarming- I’ve been three this with four family members myself- it was an honor to assist them on their final journey and I will miss them all forever, but I’m so happy I could love and support them in their final days and moments when their bodies were too broken to continue living.

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Joko commented April 30

Joko

Oakland, CA ·

April 30

Thank you so much for writing about this. After seeing my father go through a long drawn out death on hospice, including not being allowed to have the turkey sandwich he asked for because he might choke!, I have instructed my husband and children that if I am no longer able to make my own decisions, they can give me food and drink if I ask for it, but they should not hold a spoon up to my mouth if I don't. My father had a very unpleasant death, and I am trying to avoid the same, both for my sake and my family's sake.

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NjRN commented April 30

NjRN

New Jersey ·

April 30

@Joko We need to accept the reality that dying people are at a greater risk for choking than the average person who can still feed him or herself. Could you forgive yourself or any caregiver for using the poor judgment that would result in feeding a hospice patient a turkey sandwich and then having the patient choke, turn red, and struggle to breathe afterward? What's wrong with ice cream, pudding, yogurt or other much more easy to eat soft foods? I would welcome speech language pathologists to weigh in on this. Some people can even choke on water or other thin liquids and should only have thickened liquids.

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Bill commented April 30

Bill

Chicago ·

April 30

If I recall it correctly, my 8th grade religion class in a Catholic school in 1955 addressed end of life care. The nun reminded us of the sacredness of life, but also its natural circle. Death, she said, was a natural element.

Paraphrasing, she said the Church's essential teaching was that when someone approached the end of life, reaching the point of being unable to feed themself, "turning their face to the wall," the moral obligation was to keep them comfortable. To offer food and water, but not force it. Provide blankets, cleaning. Companionship. All those things for physical comfort but respectful of the person's natural capacities.

While it was wrong, she said, to take an active step ending life, eg a pillow over the face or pulling the plug, allowing it to occur naturally was the higher action. For example, not increasing oxygen to increasingly failing lungs, but administering pain pills to ease suffering.

Even in these more medically technically complicated times, I've always taken that to mean being respectful of a person is to support them in that natural circle. So, again if I recall the Church's teaching now, the moral obligation is to provide what is customary for the time and place, but 'no heroic measures' are required, like zapping with a defibrillator.

Fuzzy, but now the society is recognizing hospice legitimacy which embraces those same kinds of things leading to a natural death.

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Wendy B. commented May 1

Wendy B.

UT ·

May 1

@Bill, why is it ok to do the kindest thing possible for your pet dog or cat and hasten the inevitable end to avoid suffering but you have to torture humans by letting them pass "naturally"? It's an utterly cruel creed. I'm very in favor of people being able to request euthanasia for themselves.

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PattyDeVille commented April 30

PattyDeVille

AZ ·

April 30

I had my first will done when I was 21 in 1973 because I worked in a hospital and did not want end of life care prolonging my death, not my life. I did my latest will and healthcare directive when I turned 70 with a certified document preparer at my credit union for $360.00. My directive is registered with the state for access by medical personnel in an emergency. My son has a copy and there is a clearly labeled hard copy in a binder on my book shelf. My sisters and I all have a death pact in place along with the means to implement it. They will have no problem seeing it through. Words mean nothing. Put it in writing.

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Sarah commented 10 hours ago

Sarah

Upstate NY ·

10h ago

@PattyDeVille I appreciate your preparedness. If you haven't already, I would encourage you to put a copy of your care directives on the front of your refrigerator with a brightly colored cover sheet. When I worked in homecare, we always put advanced directives on the fridge, with the understanding EMS would usually check there if they came to the home. I think it was a hot pink cover with MOLST in huge bold print, in a sheet protector.

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JJ commented April 30

Wisconsin ·

April 30

My mom loves eating. She cannot ask of it nor does she ask to drink. She can’t feed herself. The way we know that she enjoys eating is that she eats and appears happy with her food. She drinks from a straw when offered liquids.

My father-in-law can still feed himself with food put in front of him. He asks caregivers for food even in the midday of the night.

I would not want to put in a feeding tube, because then they could not eat. Food might be their last pleasure!

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Hrach commented May 1

Hrach

PA ·

May 1

@JJ

A person can have a feeding tube and still take food by mouth.

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Dr. Zen commented April 30

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.

Recommend 120

Maria commented April 30

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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Tippy toe commented April 30

Tippy toe

Colorado ·

April 30

@Maria from one SLP to another, YES!!! Thank you

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Hrach commented April 30

Hrach

PA ·

April 30

@Maria

I'm not saying that tube feeding at the end of life is morally right but tube feeds can ABSOLUTELY provide complete nutrition. I rarely see g-tube sites getting infected, and if aspiration is a concern, a G-J tube can be placed. (MD here).

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the passionate reader commented April 30

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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Recommend 64

Bogart commented April 30

Bogart

brooklyn ·

April 30

@the passionate reader

I don't know where you are, but in NYC nursing homes are full, those who die are immediately replaced.

Profits are made not by keeping patients alive but by severe understaffing and a shocking lack of care.

I know skilled nurses who put up with a lot to serve their patients but ultimately quit rather than watch them suffer and die because they had no time to get to them.

This is especially true for nursing homes that accept those on Medicaid. And keep in mind that Medicare only pays for few weeks in nursing home care. After that you pay out of pocket until you are destitute and qualify for Medicaid. It is often not a pretty picture.

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Wendy B. commented April 30

Wendy B.

UT ·

April 30

@the passionate reader, where do you get this idea? The one my father is in pushes hospice rather aggressively. They don't want patients who require a lot of care because that costs them money. They don't care about keeping beds full because they have an 8-month waiting list.

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Bogart commented 7 hours ago

Bogart

brooklyn ·

7h ago

@the passionate reader

A day later I note your remark that nursing home patients are "otherwise [?] undemanding."

So many able to demand are ignored, and so many are unable to demand at all. Both suffer and die from septic bed sores which are difficult to prevent under the best of circumstances and fester rapidly in disgracefully understaffed nursing homes.

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Kingsley Kaminer commented April 30

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.

Recommend 107

Alex commented April 30

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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Ridgeley commented April 30

Ridgeley

Los Angeles ·

April 30

I do my doctoring through a large hospital network. They give everyone a booklet that’s got advance directive paperwork and explanations how to fill it out. Maybe making your decisions what to say isn’t easy, but the actual paperwork is. Then your responses go into your electronic medical record. You can also register your wishes with the State of California for a $10 fee.

For me, I don’t want to extend care just to extend care, and I made that (hopefully) very clear in the booklet.

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Marina Beirne commented April 30

Marina Beirne

Whitefish, Mt ·

April 30

My gosh, make sure you have a medical directive that is clear. When he reached the end stage of early onset Alzheimer’s I knew what to do. I honored his directive. Then it became his decision not mine.

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Me commented April 30

us ·

April 30

You just gotta love bureaucracy. I would add a third reason why the care unit pushed back. They get paid for every patient and every meal. What if everyone did this? Their patient pool would dry up. Memory Care is very expensive. Big investors have also swooped into care facilities. Another reason to take care of yourself, avoid the SAD, exercise and keep your weight within normal range so you don't need Memory Care. Now with 2/3 of our population overweight or obese, the train is coming quickly. Look to your left, look to your right, most people are fat.

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Hrach commented May 1

Hrach

PA ·

May 1

@Me

Are you seriously saying that only fat people get dementia?

You're wrong.

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Wendy B. commented May 1

Wendy B.

UT ·

May 1

@Me, dementia is not caused by being fat. It is caused by a lack of vaccines in childhood and as an adult, poor dental care, poor education, poor childhood nutrition, occupational exposures, heart disease, air pollution, and many other things, including genetics. Very few of the factors driving dementia are within an individual's control.

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Sandie commented April 30

Sandie

Florida ·

April 30

My mother told me she never wanted a feeding tube under any circumstances. She developed normal pressure hydrocephalus, excess fluid on her brain and had dementia because of it. Eventually she required total care we couldn't provide at home. I arrived at the nursing home one day to find an aid cramming food into her mouth, after she'd indicated she didn't want it. I told the staff never to force food on her and contacted hospice that day. They supported allowing her to eat or not as she chose and ensured she would never have a feeding tube.

Recommend 40

Mari commented April 30

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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Elspeth commented April 30

Elspeth

Borealis Fog Bank ·

April 30

@Mari I've been lucky enough to attain the age where I have more time behind me than I have before me. The day will come in the foreseeable future when I tire of living. I've been graced with a happy life. I wish that we all had the right to have MAID when we lose the zest for life. It would be a relief to choose my own day to die, much like choosing the kind of birthday cake one wants. Many of my friends are like minded.

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Karen commented April 30

Karen

Southeastern PA ·

April 30

@Mari People with advanced dementia can’t make a choice in the late stages. Everyone needs to have their living will and medical power of attorney in place before it gets to that stage. My almost 92-year old father died a few months ago from dementia. The last two years he was in memory care, and the last six months he had hospice services. Pretty horrendous but by the last month he wasn’t eating much and the last week not at all. If people still want to eat they should get food and water, but no force feeding at the end.

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Dan commented April 30

Dan

MA ·

April 30

>>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.<<

My God, Americans are so insanely barbaric, all while telling themselves they value life.

Why would you think it morally superior to starve and dehydrate someone to death rather than simply administer euthanasia? Monsters, you lot.

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Ms. Pea commented April 30

Ms. Pea

Seattle ·

April 30

@Dan -- It's possible that a person's refusal to eat or drink might be the way to die a natural death. Euthanasia means another person actually takes part in the death. If food and water is put in front of a person, but they don't ear or drink it could be said they chose. I had an uncle who died at 100 years old. He had lived in a nursing home for years. He slowly weakened and eventually went to bed, turned his face to the wall and refused to eat or drink or communicate with the staff. They did not force him and he died in a few days. His family felt that he had made the choice and died when and how he wanted to. That was preferable to a doctor or someone in the family actually administering drugs that they knew would kill him.

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AS commented April 30

Colorado ·

April 30

@Dan Respectfully, I think you should do a bit of research on the neurochemical effects of death and dying. It has been well-documented that, when people are dying, the body releases endorphins that cause calm and sometimes even euphoria, and that naturally diminish the sensation of hunger and thirst. A patient with terminal dementia, who refuses food and drink, is often at the natural end of the disease process. They are not suffering--unless, of course, they are subject to unnecessary medical procedures. It is a natural process. Euthanasia might be a good option for some people, but it probably isn't necessary for anyone dying from dementia, unless they are in pain from some other cause. Even if their body is experiencing starvation and dehydration, their mind is at peace. It is nothing close to barbaric.

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Marty Derrow commented April 30

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.

Recommend 119

Sheryl commented April 30

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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RiffRalf commented May 1

RiffRalf

PA ·

May 1

@Sheryl making sense is not a priority for rhe people inhabiting that particular sphere....

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FNA commented April 30

FNA

Providence, RI ·

April 30

"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?”

Of course you listen to the most recent preference, just as you do when a "normal" person changes her mind. Otherwise, you're treating the dementia patient as a non-person, whose preferences no longer matter,

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Sidney commented April 30

Sidney

NYC ·

April 30

@FNA I disagree. To obtain permission for a change in the directive, informed consent is needed. Informed consent can not be obtained in an advanced stage of dementia.

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carr kleeb commented April 30

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.

Recommend 86

Bambina commented April 30

Bambina

West ·

April 30

People have been titrating themselves off of food in order to die at the end of their lives since time immemorial.

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Kathy B commented April 30

Kathy B

CT, USA ·

April 30

@Bambina

I believe what you say because my mother in law did just that. She had an energetic and full life. When she turned 97 or so she called its quits. She did not have dementia but her mother and sister had gotten it when they were 98. She started having medical issues, her long time friends were all dead. She just stopped eating and passed away. I really admired that. She said she lived long enough and got to say farewell in a gathering of her children by her bedside. She went out with such dignity.

But there are people who do have dementia and don’t get the chance to make the choice. Many of them have voiced that they don’t wish to be living like that in their futures. It should be respected when they can no longer decide for themselves.

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Sharkbetty Crips commented April 30

Sharkbetty Crips

Pahoa, HI ·

April 30

Abortion is considered interfering with gods will, yet, many anti choice conservatives believe in keeping dead people alive. Create your health directive now.

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Barbara commented May 1

Barbara

416 ·

May 1

@Sharkbetty Crips- so it can be ignored. As in this case.

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Kate R commented April 30

Kate R

Santa Fe NM ·

April 30

It's audacious of Dr Jim Wright to say he knows people with severe dementia rarely feel their life is not worth living ! A blanket statement like that about the thoughts of all people living a non-verbal life in which they can do almost nothing is analogous to saying all doctors can read minds.

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Karen commented May 1

Karen

Massachusetts ·

May 1

@Kate R Agreed! How dare he!

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Sandie commented April 30

Sandie

Florida ·

April 30

@Kate R I have worked with many people who had dementia. Sometimes they are happy, but they often have periods of fear and anxiety because they know something is terribly wrong them, but they don't know what's happening to them or why. I understand why Healthcare professionals are hesitant to withhold food or allow a person with dementia to choose to die. But I very much support the right of competent people to make decisions for their future selves. I don't want that future for myself and I should be able to make that decision in advance.

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Janie commented April 30

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.

Recommend 64

Barking Mad commented April 30

Barking Mad

Northern Hemisphere ·

April 30

This epidemic of dementia is unprecedented and increasing. There are theories that it could be related to environmental pollution, such a heavy metal poisoning. I suspect also our increasing amount of radiation exposure. Whatever this is, possible causes need to be studied.

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Paducah commented May 1

Paducah

Chicago, IL ·

May 1

@Barking Mad Ever hear of the Baby Boomers? A HUGE bulge in the population, now old. For this reason, many assisted living places have long waiting lists. All the maladies of old age are more prevalent, obviously. Dementia included.

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Me commented May 1

us ·

May 1

@Barking Mad My dear -- the "causes" are already well known. Same as what causes heart disease, diabetes, aka metabolic syndrome. Typical American diet, UPF, lack of exercise and intellectual stimulation, overweight and obesity. Add smoking, drugs, and alcohol abuse. Since 90% of folks abuse their bodies. it's no surprise the rate of "dementia is unprecedented and increasing." Get your head out of the sand.

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Kathy B commented May 1

Kathy B

CT, USA ·

May 1

@Barking Mad

They live too long! Plain and simple. Go look up life expectancy in the 60’s. Big difference. People died of other causes long before their brain gave out.

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1 more reply

Mike B commented April 30

Mike B

Portland, OR ·

April 30

To me freedom means living your life how you want to, and it also means ending your life how you want to. If you want to end your life, you should be able to do it. My mom got lewy body disease, which is a horrible disease. She wanted to die but did not have an advanced directive for a dementia situation and Oregon does not allow you to make decisions on right to die if you are suffering from Dementia because they rule that you are not of clear mind when you are making the decision. My Mom should not have had to suffer for 2 years just so some other people could feel good about themselves. Let people die when they want to. Give them every opportunity to be talked out of it, but if they want to, let them do what they want. It's their life.

Recommend 41

Gidget commented April 30

Gidget

Rhode Island ·

April 30

In the US, Medical Aid in Dying does not include dementia. Make sure your advanced directive specifically outlines your wishes regarding irreversible cognitive impairment.

In the handful of right to die states, the strict criteria states you must have a terminal illness with 6 months to live and be cognitively able to administer the drugs yourself.

As Amy Bloom carefully explains in her book In Love, I do not want my loved ones caring for my body after I’m gone. Make your plan before you no longer can.

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Karen commented April 30

Karen

Massachusetts ·

April 30

@Gidget And if you have the funds, head to Switzerland like Amy and her husband did. That’s my plan.

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Jen R commented April 30

Jen R

Vancouver BC Canada ·

April 30

@Gidget

Medical assistance in dying (MAID) has progressed further in Canada and I fully support it. I have often said I do not want to be kept alive once I can't communicate, read books, recognize people, or feed myself. I would rather take poison than live beyond that stage of life.

My auntie was bedridden for several years. Then she had a massive hemorrhage and I asked her in the hospital if she wanted "to go". She said yes. Then her son came barging in and told the doctors to keep her alive. She spent eight more years bedridden, unable to communicate, with TV blaring all day while her son went to work.

So, no thanks.

Some people say they want to live to be 100 years old. Good for them. I don't, unless my quality of life is like Judi Dench's. Aging like a dame, I'm all for it. But if I start to wilt, and the petals start falling off, then please stop watering.

Here's a link discussing MAID and Alzheimer's in Canada.

DWDC_2025Resources_DementiaMAID_ENG.pdf https://share.google/CZkByDQDjUMGQjcMn

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brian commented April 30

brian

stanford ·

April 30

I was a health care provider for 40 years. I took care of patients with advanced dementia. My father died of dementia and I watched him wither over the last 6 years of life. Towards the end he could no longer talk or stand or do anything willful. The worst part of it was during the frequent times he was overwhelmed by terror. He would become completely overwrought with obvious extreme fear. We had no idea what he was terrorized by. Undoubtedly the misfirings of neurons were amounting to a frazzled, horrible extreme psychological torture inside his head. His life was one big nightmare. I for one think that giving someone in this situation should be given morphine. Indeed enough to quell the terror.

Recommend 33

Jennifer commented April 30

Jennifer

Manhattan ·

April 30

My father was 92, in a nursing home because trying to care for him was threatening my mother’s well-being. Nearly blind, nearly deaf, losing his grip on things, and strong as an elk. His kids put him in a top-rated nursing home, as recommended, but he was horrified one day at lunch to see an even older resident rolled in with a silly birthday hat on his head. He did not want to be a helpless spectacle. But he was an inventor, and he came up with a way out: “ I don’t believe I care to eat anymore,” he said one day to his doctor. Each child coming to visit was taken aside and pressured to allow a feeding tube. When it was my turn, and I refused, the doctor said, “he isn’t going to get better without this,” I replied, “is he still going to be blind and deaf and have dementia?” Well, yes. So, as had all my siblings, I declined to override my father’s wishes.

Dad passed easily after a couple of weeks having a piece of chocolate occasionally when he asked for it. I felt proud of Dad in life and in his death. Where has our notion of Community gone when seemingly unlimited taxpayer and private resources go to prolonging any spark of life, while children and working people lack affordable healthcare? Boomers, having played so free with abundance that we couldn’t bring ourselves to deal with climate change, had better come up with a new paradigm for death.

Recommend 41

Mostovnik commented April 30

Mostovnik

Santa Cruz, CA ·

April 30

It always amazes me how difficult it is for Americans to understand and accept common sense solutions to problems. There is no logical explanation for keeping a body alive when its mind is irretrievably gone. File that one with countless other stupid ideas we are being subjected to because of religion and out of control capitalism.

Recommend 34

Becky commented April 30

Becky

VT ·

April 30

Surely there is a difference between "disabled" and "dying."

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Eva Lockhart commented April 30

Eva Lockhart

Minneapolis ·

April 30

It is sickening that I can take my cat in to have a humane euthanasia to put her out of her suffering, but human patients have to construct elaborate suicides via clandestinely hoarded drugs or hanging or other gruesome methods because our litigiously-crazed society can't get past our ridiculous Puritanical past. Because that's what this is about. There is always someone tsk-tsking and shaking their Bible at anyone suggesting that folks have a right to end their lives as they see fit. It is downright cruel.

Recommend 40

Elizabeth commented April 30

Elizabeth

NYC ·

April 30

Actually, many of us with pets know that this is exactly what happens when they are dying. They begin to refuse food, even their favorite treats.

Would any loving pet owner try to spoon food into a resistant animal’s mouth? Frankly, I don’t know any dog or cat that would let them.

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Rita commented April 30

Rita

Washington state ·

April 30

@Elizabeth

I came here to reply to that same statement. No-one force feeds a dying animal. And, with pets, euthanasia is also an option -- one that pet lovers choose gratefully to help their pets die peacefully.

I have seen late stage dementia in three generations before me, and I would readily choose euthanasia for myself if it were an option. Because I would want it at a stage when I would no longer be considered mentally competent to make that choice, I would want my loved ones to be free to take that action when my life had lost any purpose or pleasure.

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Barbara Sheridan commented April 30

Barbara Sheridan

Yonkers, New York ·

April 30

What a complete lie it is that these facilities care about their patients. Those who own the facilities care only about the money that these patients bring in from Medicare and Medicaid. As with everything in this country, it is about GREED. They want to warehouse seniors and just bill for them, regardless of whether of not it is in the best interest of the patient. It’s a truly despicable industry.

Recommend 23

An old man commented April 30

An old man

CA ·

April 30

We provide more humane end of life care for our pets than our human loved ones. Why? Because religious dogma of a minority is imposed on all others. It is past time to allow adults to select when to peacefully end their life.

Recommend 24

RonRich commented April 30

RonRich

Chicago ·

April 30

We are extremely uneasy around taboos and thus euphemise. Calling "minimal comfort feeding" "death snacks" may seem harsh, but to me, that's what they are.

Euthanasia would be my route.

Recommend 6

Barbara commented April 30

Barbara

416 ·

April 30

Why is the Christian Industrial Complex making end of life decisions?

The 'body' is not the states either.

Choice is not a 3 way street. It is that of the individual. Full stop.

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MTe commented April 30

MTe

OTaw ·

April 30

"Limiting food and water has been used to hasten death in people..."

Or to simply allow the death to progress. To hasten... surely happens of course, but the word implies a certain intention on the part of the caregiver, on the fringes of euthanasia. And maybe valid.... but that's part of the greater debate, isn't it? I would imagine that most caregivers simply have their loved one's interest foremost in mind, however they proceed.

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MTe commented April 30

MTe

OTaw ·

April 30

And thank you for this fabulous article.

Recommend 8

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Michelle commented April 30

Michelle

Hawaii ·

April 30

Very very disturbing that the "care home" reported the children to the State after they decided to take care of their mom. Just because your heart is pumping and the patient is not brain dead does not mean they are alive. Her life ended when her mind died. The children tried to do the decent thing, what their mom would have wanted, and yet there are those who can't allow the decent thing to be done. "busy bodies" would be a kind word.

Recommend 23

Rose commented April 30

Rose

NY ·

April 30

It is HER decision. That's what she wanted. Period.

Recommend 10

CRAZYTOWN commented April 30

CRAZYTOWN

MANHATTAN ·

April 30

Just let people die with some dignity! Too many people have an absolutely cracked sense of what life means to them and then make it worse by pushing that narrative onto others. I have a DNR that hopefully will be applied if I get into such a terrible state. Otherwise I’ll do whatever I can to end it. It’s not up to those who say it’s wrong, that my family will feel guilty and miss me as I am gonna go sometime. Let’s spend money and effort on making life better for those who can actually live it rather than tubes and technology to keep someone just breathing…

Recommend 13

Detroot Herz commented April 30

Detroot Herz

Obvious LI ·

April 30

It's crucial to have an advanced medical directive and make sure family members are on the same page. Do it before it's too late.

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A dream commented April 30

A dream

USA ·

April 30

“The care facility balked,” Ms. Hendrickson said. Though they didn’t provide a reason, nursing homes often fear malpractice suits and penalties from regulators.”

The care facility was receiving thousands of dollars a month of this family’s money to barely care for their mother. The facility threatened them over the loss of that money. They aren’t actually worried about elder abuse.

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DK commented April 30

NYC ·

April 30

That a facility would call APS on a family in that situation really shows that there isn’t a single thing left in this country that’s not utterly backwards.

Are the unexceptional folks from the institute of human exceptionalism even worth interviewing here? What’s the basis of their opinions?

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Julie B. commented April 30

Julie B.

Detroit ·

April 30

At 96, my father, in the last stage of Alzheimers, lost all mobility and the ability to care for his personal needs, including eating. Congestive heart failure had been diagnosed. One day, he looked me in the eye and clearly said "Why they don't they let an old man die?" He was in a skilled care facility, where we then enrolled him in Hospice.

As I understand it, in Michigan, anyway, Hospice enrollment means no forced feeding is acceptable. He nibbled on pudding and applesauce for a week, then refused all food and drink. We kept him hydrated with mouth swabs, which he liked. He passed last month, at peace and surrounded by family. As my nephew noted, he lived a long, full life with no regrets. I am grateful to Hospice to and the care facility for honoring his wishes.

Recommend 36

Ashley R commented April 30

Ashley R

DC ·

April 30

Ms. Lawson's family is brave and should be commended for following her wishes. And her transition sounded so much more loving and kind and a reflection of her life (with visitors) than her time in the nursing facility staring at her knees, and I wish we could all give our loved ones that experience. The care home should be ashamed that they threatened to report the family and then did so simply because they disagreed with a course of care. It is not clear to me why force feeding (that is what 3x day sounds like to me) is the norm or is morally okay when a person is physically resisting food or drink, why doesn't that clear desire matter? From my limited experience as a visitor to assisted living, nursing homes and eventually a memory care unit, the number of older Americans that line those walls, in wheelchairs, staring at their knees, is heartbreaking, and may peace be with each of us when that is us.

Recommend 16

Linda Lovell commented April 30

Linda Lovell

Maryland ·

April 30

Thank you for what seems to me to be a well-balanced article. I'm planning to talk to our lawyer about changing my own advance directive for minimal comfort feeding. I hope others recognize the absolute necessity of determining "final days" issues in advance.

Recommend 8

Kevin commented April 30

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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Julie commented May 1

Julie

Seattle ·

May 1

@Kevin Linda, the woman in the article, was my auntie. She never had food or water withheld from her. And APS was still called by the employees of the care facility she had been living at for years because they said my cousin Heidi was “starving” her mom, which is just absolutely ludicrous. Luckily nothing came of it because, you’re absolutely correct, it is not abuse. In my opinion, it’s way more inhumane to force feed someone who does not want to eat.

Recommend

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Anonymous Maine Historian commented April 30

Anonymous Maine Historian

The Middle Of Nowhere, Maine ·

April 30

In Maine it’s possible to prevent forced feedings. Our attorney clearly explained it. When there’s no expectation of improvement, it’s possible to prevent force feeding. It’s also possible to make a distinction between spoon feeding a hungry patient willing to eat, and forcing food into the mouth of a person who is barely able to chew and swallow. In 1970, as a child, I spoon fed my blind grandmother, she wasn’t very verbal at that point, but she definitely liked certain foods and would smile, nod, and open up for more. If all they are willing to eat is homemade custard, so what? They’re terminally ill, make them happy. And it’s definitely possible to prevent a nursing home from using feeding tubes. Even if your family gets weak kneed and recoils from allowing you to starve, they won’t be able to do anything that you don’t want done - if you have your paperwork in order. Your attorney is your most important ally in these matters.

Recommend 14

Michael Plunkett MD commented April 30

Michael Plunkett MD

Chicago ·

April 30

Very good article and very good comments. I practice geriatrics, and am geriatric myself, and I fully agree with the article. Comfort feeding is compassionate. as a practical point, if the nursing home opposes you would just say the magic word "hospice." They will institute, comfort feeding, and your loved one will pass away naturally and comfortably.

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Recommend 14

NTR commented April 30

NTR

Washington ·

April 30

@Michael Plunkett MD

I agree that hospice care can and does address this and other end of life issues with compassionate expertise. The problem is that it has become very difficult to obtain in many communities.

My mother was a case in point. She spent 2 years on a waiting list for hospice care in affluent coastal California. It was finally made available and provided to her less than 2 months before her death at age 107 in 2024. This was a huge contrast to my father's death in 1992. For him, hospice care had been offered and provided as soon as needed. Sadly, access to timely hospice care all but disappeared in much of the US in the years between my parents' deaths.

Recommend 5

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Mary commented April 30

Mary

Midwest ·

April 30

Ms. Lawson’s family made the right decision for her situation. I’m saddened, however, when I think about the fact that humane euthanasia isn’t an option for people in most States, and only if the afflicted person has the mental capacity to arrange for it far ahead of time.

We offer our pets more options than we do our family members. If withholding food had been the only answer when each of my 3 pets were dying of cancer, a brain tumor, and kidney disease, I could not have lived with myself. It was hard enough as it was. Yet that is acceptable practice for the people we love.

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Recommend 13

Ellen commented April 30

Ellen

Boston ·

April 30

@Mary I agree with you. We consider euthanasia for our pets as being the humane thing to do, yet when it is our loved ones who are suffering, we consider it a terrible thing to do. I am glad my mother was able to pass surrounded by her children and with no extra measures to keep her alive. We held her hand, sang her favorite songs to her with the priest singing along with us, and had her sign her will (she had a big smile on her face as she proudly put her X on the form). The doctors and nurses told us it was the most beautiful death they had ever seen. That is exactly how I want to go when it is my time.

Recommend 3

HeatherD commented May 1

HeatherD

Florida ·

May 1

@Mary Because the medical establishment frequently does not honor advance directives for people with dementia, patients who do not want to endure years of protracted suffering are left in a Catch-22: They must figure out some way to obtain a medically assisted death while they’re still legally capable of making that decision - which means, still perhaps able to enjoy life in many ways. Misjudge the critical moment by and they’re potentially doomed to years of indignity, deterioration, helplessness, fear, isolation and perhaps, bankruptcy and neglect as a nursing home Medicaid case. As someone with an extensive family history of dementia who is childless and not wealthy, I am terrified of this fate. It’s far worse than death. After caring for relatives with dementia for more than a decade, I have become convinced that our culture’s platitudinous “respect for life” too often leads to situations of unspeakable cruelty.

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KDW commented April 30

KDW

MA ·

April 30

This is an important conversation to have. Many of the critics to this approach of minimal comfort feeding at end of life falsely assert that those with late stage dementia value their lives and don't want to die. First there is no basis to make this remark simply because there is no way of ascertaining whether this is true or not in a late stage dementia patient who cannot communicate. Second, to say that this approach is so cruel that you wouldn't let your pets die this way is blatantly disingenuous. We have the option to euthanize our animals when they reach the point of unbearable suffering and pain, something unavailable to most people in our country, with the exception of the few states that allow for assistance in dying. And that option doesn't apply to dementia patients who can't consent.

I watched my dear aunt die a slow death of lewy body dementia in a nursing home. She lost the ability to talk, to care for herself, to garden, to communicate with friends, to do the very things that made her the person she once was. I can not imagine that she was enjoying her slow, progressive physical and cognitive decline and longed to be kept alive at all costs. I will never know. But she stopped eating towards the end and slipped into unconsciousness before her death. It was both terrifying and heartbreaking to watch her suffer.

Recommend 15

C commented April 30

NY ·

April 30

Commenters do not seem to understand that medical facilities such as nursing homes have the legal right to feed their patients against the orders of a MOLST/POLST and the family.

Whoever signed them into a nursing home, signed away the right to control this. The family in the story were lucky that the police didn't show up. The NH had every right to call them.

How do I know this? I had to hire an Eldercare attorney to get my mother out of a nursing home. They opened my eyes.

Guess what worked? Sending a state office of the Aging to take a peek at the nursing home. Like vampires and crosses, no nursing home wants to show their facility to the state.

I now have a DNR. I also have an account for a trip to Switzerland.

I will never endure what I saw if I can do anything to prevent it.

Replies 1

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MD commented April 30

Asheville ·

April 30

@C It is so terrifying and honestly revolting that nursing homes can and will override a person’s values, wishes, and humanity in order to protect themselves from liability.

Recommend 11

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Const commented April 30

Const

NY ·

April 30

My sibling has early onset dementia which has advanced quickly and rendered him unable to feed himself.

For my spouse and I, we have Advance Care Directives that explicitly state what we want and do not want. We have each other as healthcare proxies with our children listed as well. These documents have been shared electronically among us as well as given to our PCP.

Finally, if you are dealing with a serious medical issue, have your doctor sign a MOLST form which is very explicit in the care you want or do not want to receive and put it on your refrigerator door. This is a legal medical order that EMS must follow. They know to look for it.

Recommend 14

Island Time commented April 30

Island Time

Washington ·

April 30

My dad died in November of 2020 with advanced dementia. At the time, he had been bedridden for months (he did occasionally get moved into a reclining wheelchair, but not on his own). I think he got reasonably good care, but I suspect the memory care facility would have preferred to keep him alive as long as possible for the nearly $10,000 / month "rent".

I will be adding Minimal Comfort Feeding to my medical directive.

Replies 1

Recommend 14

C commented April 30

NY ·

April 30

@Island Time: Reconsider.

Every hospice nurse knows that consuming even a few spoonfuls of food extends the time to death and increases discomfort as the body is both trying to shut down and being asked to continue to digest.

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Maqroll commented April 30

Maqroll

North Florida ·

April 30

A good death. No value in prohibiting a loving family from proceeding in this way.

Recommend 9

Susan F commented April 30

Susan F

Seatte, WA ·

April 30

This topic is SO important. My mother's last months with vascular dementia and late-stage Alzheimer's were a horror show. She no longer wanted to eat.

As they fed her, she screamed. She clenched her teeth and shook her head. This sweet gentle lady bit off the plastic utensils. Her face actually looked tortured, demonic. And this was in a reputable memory-care facility. I will never forget it.

“...the person with dementia, who may seem very, very happy with the life that they have?” "It’s rare that someone, even in the depths of debility, feels that their life is worth so little that they want to die.”

Really? Maybe, for some. Both of may parents were very clear before they developed dementia that they would not want their lives prolonged. They suffered terribly in their last few years, and there was nothing I could do to prevent it.

Given my odds, I downloaded dementia directive care forms from End of Life Washington (https://endoflifewa.org/), including "My Instructions for Oral Feeding and Drinking." It is very specific. I only hope that caregivers honor it.

Replies 2

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Mari commented April 30

Mari

Left Coast ·

April 30

@Susan F Well said. Thank you for sharing your parents situation. How awful.

Recommend 5

Anonymous Maine Historian commented April 30

Anonymous Maine Historian

The Middle Of Nowhere, Maine ·

April 30

@Susan F you should still get a reputable attorney to help you with the paperwork. It’s a justifiable expense to ensure that everything possible is done to carry out your wishes.

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Alex commented April 30

Alex

California ·

April 30

If she wanted to die she could kill herself. Suicide is a leading cause of death for all age groups, so people aren’t struggling to die if they really want to. There are a million ways to die and many are more comfortable than starvation.

Research shows people are afraid at the beginning stages of dementia but in later stages they’re not afraid like we imagine them to be.

We don’t consider our own discomfort with watching our loved ones die and I believe that’s an important overlooked factor in how we decide whether or not to euthanize pets and humans.

In the Netherlands a woman with dementia had an advanced directive for assisted suicide. When the doctor decided it was time to kill her, the patient was resisting so her family pinned her down while the doctor gave her a lethal injection.

Stop glorifying suicide and murder when someone is old. Even when you think it’s the right thing to do it’s still one of the most agonizing decisions you will ever make.

Replies 5

Recommend 4

AJ commented April 30

Midwest ·

April 30

@Alex I would be so happy if my family would do that for me. My grandmother died from VSED (voluntary cessation of eating and drinking). She had dementia and stated that she was doing this "before I can't". I hope to give advance directives that I must never be fed with dementia, that my life be ended quickly land and that my family will carry it out

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Elaine commented April 30

Elaine

Colorado ·

April 30

@Alex

are you saying someone with advanced dementia has the ability to kill themselves?

Recommend 5

Mari commented April 30

Mari

Left Coast ·

April 30

@Alex May be agonizing this decision, but it is the individual’s to make! Not yours.

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2 more replies

JJ Flowers commented April 30

JJ Flowers

Dana Point, CA ·

April 30

My mom, the Saint had a rich and wonderful life. She always lived with my family and my kids and grandkids LOVED her to the Nth degree. When she reached 88, a fall made her bedridden, with no mobility and she began losing her mind, her eye sight and her hearing. She explained it was a big problem, cause her heart was never going to give out. She would live another three years, she thought. I said that as much as I love her (a lot!) it would be very hard for me to continue caring for her. What can I do, my mom asked me. I said, You can stop eating. It was her last gift to me. Whenever it was problem, I gave her Bailey's (she loved this) and a pain pill. It took four weeks. Thank you mom; you were the best mom anyone ever had.

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AJ commented April 30

Midwest ·

April 30

@JJ Flowers My grandmother also gave our family the gift of using VSED to end her life (voluntary cessation of eating and drinking) when she had advance dementia. Thank you Grandma, you were the best!

Recommend 4

Mari commented April 30

Mari

Left Coast ·

April 30

@JJ Flowers You had an amazing Mom!

Recommend 4

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Zoe commented April 30

Zoe

NYC ·

April 30

My grandmother was 98 when she suffered a second stroke that left her barely able to speak and debilitated. She led a wonderful rich life. In the end she refused food and died in the comfort of her own home a few days later surrounded by family. I would go the same exact way if I have a say.

Recommend 13

Frederick W. Philippi commented April 30

Frederick W. Philippi

Carmel, CA ·

April 30

"Minimal comfort feeding" seems compassionate and wise, and recognizes and accepts that death is just a part -- the last part -- of life.

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Recommend 38

FNA commented May 1

FNA

Providence, RI ·

May 1

@Frederick W. Philippi

Of course death is not part of life, it's the END of life

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Kay Funk, MD commented April 30

Kay Funk, MD

San Mateo ·

April 30

Thank you for this in-depth reporting.

Recommend 15

Sue commented April 30

Sue

Honolulu ·

April 30

As a veterinarian for more than 40 years, I am very comfortable with death by euthanasia. I can’t count the number of clients who expressed how much more humane our assisted deaths of their beloved animal companion are as compared to their loved ones .

Replies 1

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Mari commented April 30

Mari

Left Coast ·

April 30

@Sue We are so humane when it comes to our pets, but with human too many want to force them to continue living a very limited and often painful life. Tragic. We need to embrace euthanasia.

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Colleen commented April 30

Colleen

Dublin ·

April 30

Thank you for a beautifully written article. As a psychologist nothing is as simple as black or white. There is always room for change, or at the very least slight adaptation. Sending so much peace, love and strength to all families facing into the same chapter of life.

Recommend 6

Sarah B commented April 30

Sarah B

PA ·

April 30

All quandaries aside, I just want to say thank you to Ms. Lawson's family for taking such good care of her. Thank you also to the author, Kate Raphael for giving us concrete information to consider as we care for elderly family members, or age ourselves.

Recommend 21

Marc Mayerson commented April 30

Marc Mayerson

Los Angeles ·

April 30

This dilemma caused a great rift in our family. Feed or not feed. I was frozen with indecision, and that in itself caused a rift. In the end, the feed side won. Mercifully, our loved one died only weeks later. Decades since, I remain undecided.

Recommend 3

Deborah commented April 30

Deborah

Canada ·

April 30

I find it utterly appalling that some countries give better end of life care to their pets than they do their parents and grandparents. Under specific conditions, assisted suicide is legal in BC, Canada. If a person’s debilitating condition will not improve or is terminal and quality of life is negatively impacted, there are a team of medical professionals who will quietly investigate and will assist the ill in dying. I only became aware of this group when my neighbour chose their services last summer. He suffered from a progressively debilitating brain disease. I watched this vital man, in his fifties, go from very fit and active to bedridden with an inability to walk, feed or clean himself, and a barely audible speech. He chose assisted suicide, with his five children-wife-close friends surrounding him at the his time of death. I completely support his choice and right to die.

Replies 1

Recommend 31

JH commented April 30

Manhattan ·

April 30

@Deborah

In Canada, only individuals with the capacity to make decisions and provide informed consent qualify for aid in dying, so Ms. Lawson would not have qualified.

Replies 1

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Eddie commented April 30

Eddie

New England ·

April 30

What a loving and kind family she had.

Recommend 22

JBN retired RN commented April 30

JBN retired RN

Park City, Utah ·

April 30

I my many years working in hospice, this has always been the most troubling time for families and caregivers; the time when patients no longer want nourishment. Families are inclined not to want to hasten death as are non-family caregivers. Many would say, food is life. So true. And they keep trying to nourish them. It’s an act of love and kindness no doubt. Some even go as far as requesting IV fluids or tube feedings. And many of the dying have not filled out an Advanced Directive. And I see their dilemma. Starvation seems a cruel way to die. And it’s just hard to watch and contemplate. Who wants to live with that guilt? But the idea of comfort feeding is not new. We have been suggesting this for as long as I have been an RN. Which is since 1980. And most practice this regardless toward end of life because it comes naturally. Appetites wane as death approaches. However I have seen patients still eat quite well, then suddenly decline and die. And therein lies the dilemma. I think nursing homes and caregivers and families do the best they can under these dire circumstances. As for the guilt the family may have, I offer this to offset it: make your wishes known. This helps them a lot. But most do not do this. And then this difficult decision is left to others to manage. And they live with those decisions the rest of their lives.

Replies 1

Recommend 20

NjRN commented April 30

NjRN

New Jersey ·

April 30

@JBN retired RN Great post. I also worry about declining patients who may be at a great risk of aspiration so that taking in anything by mouth could potentially result in choking, hypoxia, pneumonia, difficulty breathing, etc., etc. I would hope that families would be counseled about the possibility of aspiration before so strongly insisting on having their loved ones fed.

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Ellen in Tucson commented April 30

Ellen in Tucson

Tucson AZ ·

April 30

During the last year of her dementia, my mother ate with difficulty and with help, but mostly willingly. Most of her days were spent in seeming unawareness of her surroundings, but there were moments of clarity and appreciation for a visitor’s touch or voice. She sometimes marveled like a child at the blueness of the sky. She had been a brilliant woman who would probably have been horrified at the prospect of living like that, but that woman was no longer, and the woman she had become valued her own life enough to continue to take sustenance, which never needed to be forced on her. Until the day she decided, and “decided” is the word, that she was finished. She turned her head when offered food or water, and her obvious wishes were respected. She died a week or so later.

Recommend 29

dpfromva commented April 30

dpfromva

Arlington, VA ·

April 30

Had an acquaintance with a terminal illness. In the absence of dementia, thankfully, they were able to make their own decision. They stopped eating and subsisted on water and their favorite whiskey until the end.

Recommend 16

Mark Browne commented April 30

Mark Browne

White Salmon, WA ·

April 30

My wife, Bernie, had early onset Alzheimer's, and she had seen her mother kept alive for years with feedings in a great memory care facility. We were both nurses, and she knew she didn't want that for herself, so soon after diagnosis, she made that clear in her advance directives, stating "when I can no longer feed myself, I do not wish to be fed". We filmed her reading off the list of her wishes including no life saving or extending procedures, (comfort measures only) as well as the no feeding directive. The video was useful in confirming her intentions 11 years later when she stopped being able, or indeed wanting to feed herself, or eat. Her sister, her best friend, and I were all able to be with her in her memory care room when she died peacefully during the first lull in Covid protocols after vaccines in 2021.

Recommend 25

dementia family caregiver commented April 30

dementia family caregiver

Oregon ·

April 30

While the term is new to me, Minimal Comfort Care is what at-home family caregivers come to through practicality. I would have challenged anyone who judged us to hop on over to the house and force my mom to eat in her late stage dementia. She would have found the strength to throw the food, and them, halfway across the room.

People living with dementia don't lose the ability to express their wishes, they lose the right to have others pay attention and respect what they are asking for. Make laws to punish those who take advantage of the situation - leave those of us doing the best we can for our dementia person out of it

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M commented April 30

USA ·

April 30

@dementia family caregiver

Thank you. My mom used to wander the halls with a walker they made out of PVC tubing. The walkers are used in nursing homes. One time they could not find my mom, she was sitting next to an elder person and she was just holding her hand.

Then one time, one room had four beds in it, no one was in the beds. My mom took all the sheets off the bed and folded them.

My mom had 12 pregnancies, nine live births. That is all she ever did her whole life was take care of her family. If she did not want to eat she wouldn't.

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Cindy commented April 30

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.

Recommend 64

Lyndyb commented April 30

Lyndyb

Lewes, DE ·

April 30

Thank you for writing this article. We plan to get a new will in the state we now live in and plan and fund our final arrangements. I am grateful to learn of Minimal Comfort Feeding in time to include it in my own directives, which we'll be revising at the same time.

Recommend 14

Barb Wills commented April 30

Barb Wills

Washington ·

April 30

My husband died from Lewy Body disease. Our daughter who works in medical research had Medical Power of Attorney for him.

I was able to keep him at home through 2020 and for his final 6 months moved him to a Memory Care facility who were wonderful.

Lewy Body destroys the entire brain and his function loss only accelerated.

My daughters and I made the decision together to have Hospice take over his care at his Memory Care facility. His brain no longer signaled hunger so he was given water from a sponge and was not able to swallow well enough to eat anything. He lasted 1 more week.

Being able to make decisions with my daughters about his final days was the only "good" thing at that time.

My daughters know I want no prolonging of my "life".

As I age, I review current law annually to make sure my family will be allowed to grant my final wish.

Recommend 22

Samira P commented April 30

Samira P

Baltimore, MD ·

April 30

As difficult as it was to lose both of my parents during the early days of the pandemic with limited access to them in their assisted living facility, having each of them under hospice care made a huge positive difference for them and for us. Neither had feeding tubes, each ate as much or as little as they wanted and whatever they wanted, with the guidance of the hospice nurses and staff. Even though my dad had dementia he was more communicative and better able to indicate if he wanted to eat or drink so maybe even hospice wouldn't have helped if he had been less so, but I got the sense they were comfortable with following the cues from the patient rather than forcing anything.

Recommend 9

JN commented April 30

RVA ·

April 30

I have worked with our vet to put down our two prior dogs. They did not die naturally, they were euthanized - at a point when the bad outweighed the good. At a point where they were suffering. At a point where is was the HUMANE thing to do.

Why do we offer this grace to our pets but not to us? It is non-sensical.

Sure - to those in the article that were referenced as seeming to be enjoying their life (with dementia) - it would not make sense.

But for those who made clear intent prior to dementia and who are not enjoying their life by outward appearances - why would we allow them to continue to suffer?

Same for cancer patients and others who are near the end of their life who are SUFFERING - If they, of sound mind, want to be euthanized, why would we not allow that?

Some might say it is gross and despicable to end a human life before their body does it for them,

I say it is gross and disgusting to allow a human to suffer until the "end" of their life. We need to bring a level of sanity and compassion into this conversation.

Recommend 37

Steve Epstein commented April 30

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.

Replies 4

Recommend 48

Nina commented April 30

Nina

Oxford/Exeter ·

April 30

@Steve Epstein

My heart goes out to you. What a tough choice to make. I hope there are still some very beautiful days for you before you board that plane.

Replies 1

Recommend 30

Deb commented April 30

Deb

Washington State ·

April 30

@Steve Epstein This is my plan, too. A dear friend of mine told me if she was ever diagnosed with dementia, she plans to fly to Italy and do a grand tour eating all the wonderful food, on her way to Switzerland. I love the thought of this. Blessings to you on your journey.

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Grateful commented April 30

Grateful

Boston area ·

April 30

@Steve Epstein Thank you for sharing. I know someone in similar circumstances who would appreciate being able to talk with you. Could we connect?

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Cindy commented April 30

Cindy

Santa Fe ·

April 30

I cannot believe we are having this conversation. Force feeding a dementia patient is cruel. My grandmother died in 1988. Prior to her death she was in a nursing home, the same one as my uncle’s parents. My mother witnessed the staff forcing my uncle’s mother to eat, when she clearly did not want to eat. My mother read the staff the riot act “you will never force my mother to eat”. At the time my mother made it clear it clear to me that forcing her to eat should never happen.

Fast forward to 2023, my mother is in memory care and declining. Her appetite was minimal. They offered her food and water or juice. She would generally eat a bit of fruit, and maybe scrambled eggs in the morning, but little else. The staff NEVER forced her to eat, and i applauded them for it. Eating was one of the few things remaining under her control. I consider forcing an elderly person to eat - a high form of elder abuse. She died peacefully in April of 2023.

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NjRN commented April 30

NjRN

New Jersey ·

April 30

@Cindy OK first there is no reason to "read the staff the riot act" when they are doing their jobs, part of which is to help patients who are unable to feed themselves, eat. How about some compassion for the people who change your loved one's diapers, give them baths, and do all the countless tasks that families are unable or unwilling to do at home?

Second, how in the world are nursing home caregivers supposed to know who to feed and who not to feed without specific, clear directions and guidance?

There seems to be a misunderstanding about what staff members are expected or not expected to do. Nobody is trying to commit elder abuse; staffers do not want to be accused of withholding nutrition from a helpless elderly person incapable of feeding him or herself. How about providing some guidance to the staff about what you do and do not want for your elderly nursing home resident loved one , preferably with the involvement of the nursing staff (registered nurses, not nursing assistants) or attending doctor?

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아내 치매 돌봄 기록 손주

2026년 5월 1일 금요일

죽음을 수용하는 새로운 방식, 최소 편안함 급식 NYT

요약: 죽음을 수용하는 새로운 방식, 최소 편안함 급식

1. 린다 로슨의 사례와 문제 제기

2. 최소 편안함 급식(Minimal Comfort Feeding)의 도입

3. 법적·윤리적 장애물과 갈등

4. 린다의 마지막과 대중의 반응

평론: 생명 연장의 기술과 존엄한 마감 사이의 괴리

삶의 질과 양의 충돌

돌봄의 정의에 대한 재고

제도적 한계와 사회적 과제

결론: 죽음은 삶의 마지막 완성

<요약: ‘최소 편안 급식’—치매 말기 돌봄의 새로운 경계>

<핵심 쟁점>

1. 법과 제도의 충돌

2. 윤리적 딜레마

3. 돌봄의 본능 vs 죽음의 수용

<사례의 결말>

<평론: 이 논쟁의 본질은 ‘죽음의 주권’이다>

1. 현대 의료의 구조적 문제

2. 치매는 ‘생물학적 생존 vs 인간적 삶’의 분리

3. ‘먹이는 것’의 상징성

4. 최소 편안 급식의 철학적 위치

<비판적 평가>

장점

한계

<결론>

1. 호주 Aged Care에서의 적용

2. 한국 현실에서의 적용

3. 정순님 상황 기준 실제 선택지

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