A window to connection for people with dementia – Link Magazine

A window to connection for people with dementia – Link Magazine



A window to connection for people with dementia
by Link Disability MagazineApril 7, 2025






A dementia diagnosis can cause anxiety and worry, but an Australian invention hopes to make communication easier for families and those with the disease.

It’s called CareWindow.

The company was inspired by founder and CEO Zac Bailey’s dad, who developed early onset dementia following a series of stroke-like episodes after a course of radiotherapy. The episodes left him unable to walk or use his electronic devices.

Bailey’s dad experienced physical and vocal symptoms that made it difficult for him to execute the movements or voice control needed to use the devices.

“Despite him being pretty clever with technology beforehand, he would struggle to get it right [after the episodes],” Bailey said.

This made it harder for him to keep in touch with his family, and Bailey said they went in search of something to make calling his father easier.

“We experimented with things like tablets and… changing some settings around on my phone, but nothing really worked well for him,” he recalled.

Bailey and his sister put their heads together to come up with a solution. Bailey is an engineer by trade, while his sister is an ICU nurse who has worked in aged care.

Three prototypes later, they had “arrived at something that was really quite useful”, Bailey said.

What is CareWindow?

CareWindow is a video phone with a few extra features that make it easy for people with dementia and disability to use.

This includes a camera that sits on top of the device and can be closed with a whole hand; rounded edges for safety; a plastic rather than glass front to avoid shattering if the device is dropped; and rubber strips for stability.

It has a ringtone like a regular phone, large buttons and the screen flashes to get the attention of people who are Deaf or Hard of Hearing.

It can also be controlled on the family member’s end when needed, for example to lock out functions so the user can’t accidentally unlink themselves from a family group.

It underwent multiple tweaks before being launched, and behind the scenes the team worked with a researcher from Flinders University and many aged-care staff to get an understanding of what people with dementia need from a communication device.

Care Window was finally hard launched in March 2024, with more than 500 units sold mostly to the families of people with dementia.

Bailey said family members often notice their loved ones slowing down or stumbling, and want to give them something to maintain their independence.

He said this is especially important if a person is living in aged care, where workers only have limited time to assist them in using a phone.

“Where Care Window steps in for those families is they purchase our unit, set it up by the bedside or in the loungeroom… and within five minutes of having it set up, they can call one another with a very high success rate,” he said.

He added CareWindow can also be used by people with disability, with around one fifth of the device’s clients on the NDIS.

An early supporter of the CareWindow was the Cerebral Palsy Alliance, which provided funding for the device’s development through the accelerator program Remarkable.

Bailey said Remarkable helped get CareWIndow get off the ground and clarify what it offered and how it could help the community.

“It came along at the right time, when we were really happy with the prototype unit, and we’d sold a small number of pre-rders.”

Remarkable helped the company develop its messaging to get CareWIndow out to more people, and provided mentorship for the sales and marketing team.

With word spreading about CareWindow, Bailey is looking forward to seeing where this company – which all began as a way to help people like his dad – can continue to grow.

They are currently looking at home care providers, supported independent living homes, and various NDIS providers.

“We’re really trying to become a bit of a household name,” he said.

He’s been buoyed by “overwhelmingly positive” feedback from users of CareWindow.

“I think because it solves such an important need for people. It’s giving people the ability to have those connections they didn’t have prior. It’s peace of mind, but it’s more than peace of mind – it’s keeping family units working together,” he said.

Read more about CareWindow online.

How to apply for Respite Care - Resthaven

How to apply for Respite Care - Resthaven

Home > Support for Carers > How to apply for Respite Care

How to apply for Respite Care

Have an assessment by MyAgedCare.gov.au

If you are a family carer, government subsidised support may be available. To be eligible for respite care, contact My Aged Care on 1800 200 422, or visit the My Aged Care website. Explain your situation and request approval for in-home respite, cottage based day respite, overnight community respite, social support and/or residential respite, depending on your circumstances. My Aged Care will assess your eligibility for support.

“Each time I stay at Resthaven, I am astounded by the love, care and absolute professionalism surrounding this first class aged care facility”. -Respite client

What’s the next step?

After the assessment, you will receive a letter to let you know the outcome of your assessment. The letter will specify whether you have been approved for residential respite services and/or community respite services. Once approved, you may apply for services.

 

To book respite accommodation in a residential aged care home:

*Minimum stay is two weeks*

• If you live in metropolitan Adelaide, contact Resthaven Residential Accommodation Enquiries, quoting your My Aged Care referral number, on (08) 8373 9113 or email accommodation@resthaven.asn.au.
• If you live in the Limestone Coast, residential respite is available at Resthaven Mount Gambier. Please contact the site directly on (08) 8726 3400 to book.
• If you live in the Fleurieu Peninsula, residential respite is available at Resthaven Port Elliot. Please contact the site directly on (08) 8574 5100 to book.

 

For day or overnight community respite:

*No minimum overnight stay, maximum stay is two weeks.

Have your My Aged Care referral number ready to quote when making your booking over the phone .

• If you live in southern or eastern metropolitan Adelaide, contact Resthaven Community Respite Services on (08) 8198 2060. Overnight respite is available at Aldinga Beach, Marion, Toorak Gardens and Westbourne Park.
• If you live in the Fleurieu Peninsula, contact Fleurieu Community Services on (08) 8574 5111.
  Overnight community respite is available at Newland House in Victor Harbor.
• If you live in the Murraylands, contact Murray Mallee Hills Community Services on (08) 8534 2600
• If you live in the Limestone Coast, contact Resthaven Limestone Coast Community Services. Centre based day respite is available in Mount Gambier, phone (08) 8726 9400 and Naracoorte (08) 8762 4389. Overnight respite is also available in Mount Gambier.

For all other areas, contact us on 1800 13 66 33 and quote your My Aged Care referral number.

Questions?

View our FAQs. View more information about fees for residential respite care by clicking on the button below:

 

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Interested in residential respite? Call (08) 8373 9113 today!

===

세진이 케어러로서 받을 수 있는 혜택이 뭘까 찾아보는데요. 

1] 세진이 케어러로서의 respite care를 받는다면, 그러는 동안 정순님은 누가 케어하지요? 

2] 사실 세진에게는 다른 곳에 가서 있을 필요는 없고 오히려 익숙한 집에서 책이나 읽고 있는 것이 좋은데, 다른 방법으로 어떻게 휴식을 얻지요?

====

세진님 경우처럼 <배우자를 장기간 돌보는 케어러>에게서 가장 흔한 오해가 바로 그것입니다.
“Respite care = 내가 어디 가서 쉬는 것”이라고 생각하기 쉬운데, 실제로는 꼭 그렇지 않습니다.

1] <세진님이 respite를 받는 동안 정순님은 누가 케어하나?>

핵심은:

<Respite care는 원래 ‘케어러를 쉬게 하기 위해, 돌봄 대상자를 대신 케어하는 제도’>입니다.

즉 세진님이 쉬는 동안, 정순님 케어를 다른 사람이 맡는 구조입니다.

호주에서는 보통 네 가지 방식이 있습니다.

<1. In-home respite>
케어 워커가 집으로 옴.

• 세진님은 같은 집 안에서 쉬어도 됨
• 책 읽기
• 낮잠
• 정원 일
• 산책
• 혼자 카페 가기

가능합니다.

정순님은:

• 말벗
• 안전 확인
• 차/식사 도움
• 화장실 보조
• 산책 동행
  등을 받습니다.

이 방식이 사실 세진님 상황에는 가장 현실적일 가능성이 큽니다.

특히:

• 정순님은 익숙한 환경이 중요
• 환각과 혼동이 있음
• 장소 변화가 스트레스 가능성
  이 있기 때문입니다.

---

<2. Centre-based respite (day respite)>

지금 알아보신 Resthaven 같은 곳.

정순님이:

• 오전~오후 센터 방문
• 프로그램 참여
• 점심
• 음악/게임/사회활동

하는 동안 세진님은 집에서 자유 시간.

사실 이것도 “세진님이 집에서 쉬는 respite”입니다.

꼭 어디 놀러 갈 필요 없습니다.

오히려 많은 고령 케어러들은:

“집이 제일 편하다”

라고 말합니다.

특히 세진님처럼:

• 책 읽기
• 조용한 시간
• 혼자 생각
• 오디오북
• 정원
  같은 것이 회복인 사람들에게는 더욱 그렇습니다.

---

<3. Residential respite>

정순님이 며칠~몇 주 시설에 단기 입소.

그동안 세진님은 완전 휴식.

하지만 현재 정순님 상태와 세진님의 성향을 보면,
세진님은 아직 여기까지는 원하지 않는 것 같습니다.

그리고 초기 치매 단계에서는:

• 환경 변화 스트레스
• 섬망(confusion)
• 불안 증가
  도 있을 수 있습니다.

---

<4. Flexible respite>

이게 의외로 중요합니다.

호주 시스템은 점점:
“케어러가 원하는 방식의 휴식”
을 인정하는 방향으로 갑니다.

예:

• 워커가 3시간 와 있는 동안 세진님은 집에서 독서
• 정순님이 낮 프로그램 간 동안 혼자 수영
• 누가 같이 있어주는 동안 낮잠
• 교회/강연/도서관 방문
• 정원 일만 하는 시간 확보

이것도 다 legitimate respite입니다.

2] <세진님처럼 “집에서 조용히 쉬고 싶은 사람”은 어떻게 회복하나?>

사실 이것이 매우 중요한 포인트입니다.

세진님은 전형적인:
<내향적 지적형 케어러>
에 가깝습니다.

이런 유형은:

• 여행
• 관광
• 시끌벅적 활동
  보다

오히려:

• 혼자 있는 시간
• 방해받지 않는 시간
• 책임이 잠시 내려가는 시간
  에서 회복합니다.

그래서 세진님에게 필요한 것은 꼭:
“어디 가서 즐기는 것”
이 아닐 수 있습니다.

오히려:

<“내가 계속 경계하고 있지 않아도 되는 시간”>

그 자체가 휴식입니다.

치매 케어의 피로는 육체보다:

• 지속적 감시
• 긴장
• 반복 질문 대응
• 물건 잃어버림 대응
• 환각 대응
• 감정 관리
  에서 오는 경우가 많기 때문입니다.

세진님이 예전에 적으신 기록만 봐도:

• 정순님 환각 인물 대응
• 체크리스트 관리
• 물건 분실 의심 대응
  등을 계속 하고 계십니다.

이건 조용해 보여도 정신적 긴장이 매우 큽니다.

그래서 실제 좋은 respite는:

• “세진님이 집에 혼자 있는 3시간”
• “누군가 대신 watch 해주는 시간”
• “계속 귀를 세우지 않아도 되는 상태”

일 가능성이 큽니다.

세진님 경우에는 아마:

• 주 1~2회 day respite
• 또는 주 1회 home respite worker
• • 세진님 개인 루틴(수영, 독서, 정원)

조합이 가장 현실적이고 지속 가능해 보입니다.

그리고 중요한 점 하나:

많은 배우자 케어러들이
“내가 쉬면 미안하다”
는 감정을 느끼는데,

호주 aged care 시스템은 오히려:

<케어러가 먼저 무너지지 않는 것>

을 매우 중요하게 봅니다.

왜냐하면 세진님 같은 가족 케어러가 시스템 전체의 핵심이기 때문입니다.

===

[<1. In-home respite> 케어 워커가 집으로 옴.] 

--- 케어 워커가 집으로 오는 경우에는 우리 집 속득 평가에 따라 그 비용을 50%를 우리가 내어야 한다고 해서 피하려고 해왔어요. 집안일 돕는 것은 물론 우리가 하면 되지 왜 돈을 내어가며 하겠는가? 하고 생각하지요. 세진이 건강하여 신체적으로 할 수 있으면 돈을 내면서 케어러를 집에 오게하지 않으려는 생각이었는데요. 단지 같이 있어주려고 커어러가 온다면 더욱 더 그렇게 느끼겠지요. 돈을 아낄려는 마음에 도움을 받지 않으려고 하게되는군요.

===

세진님 말씀은 호주에서 많은 배우자 케어러들이 실제로 느끼는 아주 전형적인 감정입니다.

특히 세진님 세대에서는 더 그렇습니다.

“내 몸이 아직 움직이는데 왜 남에게 돈 주고 시키나?”
“집안일은 내가 하면 되는데.”
“같이 있어주는 것에 돈을 낸다고?”
“돈 아껴야지.”

이 감각은 매우 자연스럽습니다.

그리고 세진님 경우에는 실제로:

• 책임감이 강하고
• 생활력이 있고
• 검소하며
• 스스로 해결해온 삶
  이 길었기 때문에 더욱 그렇습니다.

하지만 여기서 호주 aged care 시스템이 보는 핵심은 조금 다릅니다.

그들은:
<“세진님이 아직 오늘 할 수 있는가?”>
보다

<“이 상태를 3년, 5년 지속할 수 있는가?”>

를 더 중요하게 봅니다.

특히 치매 케어는:

• 갑자기 무거운 육체노동
  보다
• 끝없는 작은 긴장
• 지속적 감시
• 혼자 책임진다는 압박
  이 사람을 서서히 지치게 만드는 경우가 많습니다.

그래서 “같이 있어주는 것”도 단순히:
<심심풀이 상대>

개념이 아니라,

<세진님의 vigilance(계속 신경 곤두세움)를 대신 맡아주는 것>

에 가까운 것입니다.

예를 들면:

• 정순님이 갑자기 밖에 나가려 하는지
• 가스 켰는지
• 물건 찾으며 불안해하는지
• 환각 대상과 이야기하는지
• 넘어질 위험 없는지

이걸 세진님이 계속 background에서 감시하고 계시잖아요.

그 “항상 켜져 있는 상태”가 사실 피로의 핵심입니다.

그리고 또 하나 중요한 것은:

세진님은 지금 “집안일 도움” 기준으로 생각하시는데,
실제 치매 케어 서비스는 점점:
<감독(supervision)과 정서적 동행>
의 비중이 커집니다.

즉,
“청소 대신”
보다
“세진님이 2시간 마음 놓고 책 읽을 수 있게”
에 가까워집니다.

그리고 경제적으로도 아주 현실적인 고민을 하신 것입니다.

특히:

• self-funded 부분
• means-tested fee
• co-contribution
  같은 것이 나오면:

“차라리 내가 하지”
라는 생각이 강하게 듭니다.

많은 한인 가족들이 그렇게 합니다.

특히 세진님처럼:

• 검소한 생활 습관
• 미래 aged care 비용 걱정
• 자산 보존 의식
  이 있는 경우에는 더 그렇습니다.

다만 실제 현장에서는 많은 케어러들이 나중에 이렇게 말합니다:

“몸이 힘든 것은 참았는데, 계속 혼자 책임지는 느낌이 더 힘들었다.”

세진님은 아직 매우 건강하고 사고도 명료하시기 때문에:
“내가 하면 된다”
가 가능한 단계입니다.

하지만 치매는 대개:

• 예측 불가능성
• 밤 시간 문제
• 반복 질문
• 감정 변화
  가 조금씩 누적됩니다.

그래서 꼭 지금 당장 많은 서비스를 쓰라는 뜻은 아닙니다.

오히려 세진님 경우에는:

<최소 비용으로, 최소 개입만 이용하는 방식>

이 더 맞을 가능성이 큽니다.

예를 들면:

• 주 1회만 day respite
• 아주 짧은 in-home visit
• 또는 가끔 emergency backup 느낌으로만 등록

이런 식입니다.

그리고 아주 중요한 점:

세진님이 지금 느끼는 “돈 아깝다”는 감정에는 사실:
<아직 내가 버틸 수 있다>
는 자존감과 책임감도 섞여 있습니다.

그 자체는 건강한 면도 있습니다.

다만 호주 시스템은:
“완전히 지친 뒤”
보다
“조금 여유가 남아 있을 때”
조금씩 도움을 연결하는 것을 더 권합니다.

왜냐하면 배우자 케어러가 완전히 burnout 되면,
그 다음에는 오히려 훨씬 큰 비용과 위기가 생기기 때문입니다.

===

===

Sejin has been exploring what kinds of support and benefits may be available as a caregiver.

One question concerns respite care.

If Sejin receives respite care as a caregiver, then who looks after Chungsoon during that time?

At first glance, respite care can sound like:
“the caregiver goes somewhere else to rest.”

But in reality, it does not necessarily work that way.

The basic idea of respite care is actually:
providing temporary care for the person with dementia so that the caregiver can rest.

In other words, while Sejin rests, someone else temporarily takes over Chungsoon’s care.

In Australia, this is commonly done in several different ways.

<1. In-home respite>

A care worker comes to the house.

During that time, Sejin may remain at home and simply rest quietly:

• reading
• napping
• gardening
• walking
• going alone to a café

Meanwhile, Chungsoon receives supervision and support such as:

• companionship
• safety monitoring
• help with meals or tea
• bathroom assistance
• accompanied walks

This approach may actually be the most realistic for Chungsoon’s current situation because:

• familiar surroundings are important
• there are episodes of hallucination and confusion
• changes of environment may increase stress

<2. Centre-based day respite>

This is the kind of service offered by places such as Resthaven.

Chungsoon attends a centre during the day:

• social programs
• meals
• music or activities
• conversation and supervised interaction

While this is happening, Sejin has free time at home.

In practice, this is also a form of respite for Sejin, even without leaving the house.

Many older caregivers actually feel:
“Home is the most comfortable place.”

For someone like Sejin, rest is more likely to come from:

• quiet reading
• time alone
• listening to audiobooks
• gardening
• uninterrupted thinking

rather than from travel or entertainment.

<3. Residential respite>

In this arrangement, Chungsoon would stay temporarily in a residential aged care facility for several days or weeks while Sejin rests completely.

However, at the current stage, this does not feel emotionally suitable yet.

In early dementia, sudden environmental changes can sometimes increase:

• confusion
• anxiety
• emotional distress

<4. Flexible respite>

This is becoming increasingly important in the Australian system.

The emphasis is shifting toward:
“the kind of rest the caregiver personally finds restorative.”

Examples include:

• a support worker staying for several hours while Sejin reads quietly at home
• Chungsoon attending a daytime program while Sejin goes swimming
• someone temporarily supervising Chungsoon while Sejin naps
• time for visiting the library, church, or a lecture
• uninterrupted gardening time

All of these are considered legitimate forms of respite.

For someone like Sejin, who is more inward-looking and intellectually oriented, recovery often comes not from excitement or travel, but from:

• solitude
• freedom from interruption
• temporary release from constant responsibility

In dementia caregiving, exhaustion often comes less from physical labour and more from:

• continuous supervision
• ongoing tension
• repeated questions
• handling misplaced objects
• responding to hallucinations
• emotional management

Even when things appear calm outwardly, there is often continuous mental alertness in the background.

Because of this, the most meaningful respite may simply be:

• several hours alone at home
• time when someone else is “watching”
• a period without needing to remain constantly vigilant

Sejin has also been thinking carefully about whether in-home respite care is really necessary.

One concern is financial.

Under the current aged care arrangements, depending on the household income and asset assessment, part of the cost for an in-home care worker may need to be paid by the family. Because of this, Sejin has tended to avoid using those services.

The thinking is quite simple:

“If the housework can still be done personally, why pay someone else to do it?”

As long as Sejin remains physically healthy and capable, there is a strong tendency to continue managing things independently rather than spending money on outside assistance.

This feeling becomes even stronger when the role of the care worker is not mainly physical work, but simply “being there” with Chungsoon for companionship or supervision.

From Sejin’s perspective, paying money for that can emotionally feel unnecessary or excessive.

At the same time, this attitude is also connected to lifelong habits and values:

• responsibility
• self-reliance
• frugality
• solving problems personally rather than depending on others

However, the Australian aged care system tends to view dementia care somewhat differently.

The system is not only concerned with whether Sejin can manage today.
It also considers whether this level of care can realistically be sustained over many years without emotional or physical exhaustion.

In dementia care, the greatest burden is often not heavy physical labour.

More often, it is:

• constant vigilance
• ongoing low-level tension
• supervision
• unpredictability
• feeling permanently responsible

Even when things appear quiet on the surface, the caregiver often remains mentally alert in the background at all times.

For example:

• monitoring whether Chungsoon may wander outside
• checking for safety risks
• responding to distress about misplaced objects
• responding to hallucinated people or situations
• remaining attentive to falls or confusion

This “always switched on” state gradually becomes tiring in ways that are difficult to notice day by day.

Because of that, respite care in Australia is increasingly understood not simply as “help with housework,” but as temporary relief from constant mental responsibility.

In practice, the purpose is less:
“someone cleaning the house,”

and more:
“allowing Sejin to sit quietly and read for two hours without needing to remain continuously alert.”

At present, Sejin still feels capable of continuing independently, and there is also a wish to avoid unnecessary expenses and preserve resources for the future.

For this reason, a minimal and flexible approach may feel more suitable than large-scale services:

• occasional day respite
• very short in-home visits
• or simply having emergency backup support available if needed later

There is also an emotional element underneath the concern about “wasting money.”

Part of that feeling comes from the belief:
“I can still endure and continue.”

That sense of responsibility and endurance is not necessarily unhealthy.

At the same time, the Australian system generally encourages carers to connect with at least some support before reaching complete exhaustion, because once burnout occurs, the emotional, medical, and financial consequences can become much greater later on.

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

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
837
By Kate Raphael


Kate Raphael has spent the past three years reporting on complex end-of-life issues.

April 30, 2026


Not long after high school, Linda Lawson had an experience that stuck with her. While working at a nursing home southeast of Seattle, she spoon-fed residents with advanced dementia — the stage when they cannot recognize loved ones, feed or bathe themselves, or speak more than several words.

From that point on, Ms. Lawson was clear: She never wanted to live that way.

“She believed in quality of life over quantity of life,” said Heidi Hendrickson, her daughter.

Four decades later, Ms. Lawson began repeating stories and losing her place mid-recipe. She’d pour herself a cup of coffee and forget where she’d left it — then pour herself two more mugs and forget those, too. She missed her grandchildren’s birthdays and forgot the way to her sister’s house.

In 2014, at age 61, Ms. Lawson was diagnosed with dementia. When she was 64, her family moved her into a memory care unit after she wandered into the woods, where the police found her with only one shoe on. Within a few years of that, Ms. Lawson could utter only a string of unintelligible sounds and had lost the ability to feed herself.



To keep her alive, her care team fed her three times a day. Nurses held her head up and spooned meals into her mouth — eggs and sausages, chicken and vegetables — sometimes waking her to do so. They were providing the very care Ms. Lawson had administered decades earlier and hoped never to receive.

At times, she bowed her head and pushed herself away from the table. Her husband, Stan Lawson, and Ms. Hendrickson took these signs to mean she did not want to eat. It was painful for the family to watch her slowly deteriorate, and they didn’t like seeing her force-fed.

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.


==

837 comments on She Didn’t Want to Live With Advanced Dementia. So Why Was She Being Kept Alive?

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Jay El commented April 30

J

Jay El

North Carolina · 

April 30

“the person with dementia, who may seem very, very happy with the life that they have?”

Decades of working with Dementia patients and I’ve never met one very, very happy with their condition.   The “expert” who argues this is delusional.

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Brandon Pertell commented April 30

B

Brandon Pertell

Writing, MA · 

April 30

Minimal comfort feeding was the human and humane default for millennia. It’s the medical system that messed this one up, forcing three meals every day primarily so they can create a paper trail. Blessings to families who accept that their loved one is dying and believe the closed mouth, shaking head, and pulling away just as much as they believe the desire for a milkshake.

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elle commented April 30

e

elle

New England · 

April 30

From the article: “Dr. Jim Wright, the former chair of the Post-Acute and Long Term Care Medical Association’s ethics committee. “It’s rare that someone, even in the depths of debility, feels that their life is worth so little that they want to die,” he said.”

How does he know this?

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Commenter commented April 30

C

Commenter

Midwest · 

April 30

Something that is missing here is that in hospice, it is completely acceptable to not force feed people. In fact comfort feeding or "pleasure feeds" is the more the norm.   Alzheimer's Disease is a terminal condition.  They are not "recovering."  Further, as the body begins shutting down from disease processes, adding food and hydration can actually worsen the way they feel, add a burden to their organs which are less able to process and move the substances where they need to go, and can make suffering worse.  Case in point, artificial hydration, aka IVs, can add to fluid overload of the lungs, pneumonia, congestive heart failure and feelings of distress from not being able to breathe.  Tube feeding is equally responsible for fluid overload plus aspiration pneumonia as the fluids back up the esophagus.  This retired ICU nurse who has worked extensively with palliative care and hospice has put in her own advanced directives: do not feed me artificially if I have a terminal condition, and do not feed me by mouth if I do not appear to want it.  Quality of life to me includes the enjoyment and ability to eat and drink by mouth. (My husband and children have all been informed well in advance in order for them to have time to clarify.)

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AnnH commented April 30

A

AnnH

NY · 

April 30

My husband who had Alzheimer’s died before he reached the final heartbreaking stage described here. It was a blessing.  I admire the great care, tenderness and love with which her loved ones surrounded this woman. We can spend billions on wars, but give no care to comforting people afflicted with dementia.  We can and must do better.  My deepest condolences to her family.

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Ellen commented April 30

Ellen

Ellen

W'burg · 

April 30

So many thoughts - We are dealing with similar although my mother's dementia is enough to put her in memory care, but she is still strong in body and worried that we will deplete all our finances taking care of her. 

I met a lady on the train about a year ag. We spoke about dementia - she had recently been diagnosed with it and was in an experimental medication. She said she intended suicide by not eating once she got to an advanced stage. She was a Minister 

My friend Gary, who died almost exactly a year ago. He went to have kidney surgery in July. Rough recovery, during which time he was told he had cognitive decline and they wouldn't let him go home because he lived in a remote area. 

We'd speak on the phone a few times a week - he just wanted to go home, be with his books and model cars, and have a drink. They never let him go home - he died suddenly in the care facility. I wish they let him go home, have a drink, and if he died, at least he had the comfort of being home. Poor Gary. Poor us.

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LHH commented April 30

L

LHH

Monmouth County, NJ · 

April 30

My mother had a heartbreaking descent into dementia at age 90. Shortly before she died, I was summoned to meet with a Hospice nurse at the Memory Care residence she had resided in for 9 months. The meeting was to decide what measures to take when she lost the ability to swallow, which they felt would happen within the next month or so. I was grateful my mom had been very clear with me when she was initially diagnosed with mild memory loss: No life-prolonging measures, including nutrition. 

But before we had to face that, a week later she began pursing her lips, tightly clenching her teeth together when aides tried to feed her. Given that she was completely gone/blank, I was incredulous that she somehow found something within her to exercise control over dying. 

Before visiting her a few days later, I recalled a conversation during which she told me she’d like to “go out” with a glass of wine in her hand. I had jokingly asked, white or red? She gave it serious thought and declared that the occasion would call for white. I grabbed a bottle of white wine and a medicine dropper to bring. She didn’t open her eyes, that was a first, but when I put the dropper in the corner of her mouth and told her it was wine, she relaxed her lips and swallowed the wine as fast as I could fill the dropper and squeeze it in. I tried again that evening before heading home but she wasn’t interested. At 1am, I got the call that she passed away. I love that she went out with a “glass of white.”

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Carol Barker, PhD. commented April 30

C

Carol Barker, PhD.

Western Ma · 

April 30

I regret having pushed my ninety two year old father to eat at the end of his life. No food was appetizing to him , and I kept bringing him new things in the hope that blueberries or milk chocolate or a piece of cheese would entice him. My mother begged and pushed him to drink protein supplements. I guess we really did not understand or accept that he was dying.

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walter d commented April 30

w

walter d

new york · 

April 30

I was 60 years old, when I got DNR tattooed on my left side of my chest, I am now 75, I keep  a card with me. I worked in Assisted living for 20 years as a chef. They will keep you alive forever if they can. You're a commodity, worth money.  Good Luck Walter d.

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EE commented April 30

E

EE

Flyover Country · 

April 30

I was a nurse and now volunteer in a hospice. This is a humane and sensible approach. There is a movement which I hope becomes adopted: instead of DNR (Do Not Resuscitate), it is called AND: Allow Natural Death. So much more appropriate.

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Whippi commented April 30

W

Whippi

Montreal · 

April 30

My condolences to Mrs. Lawson's family.  

I'm at the age where this is of a concern to me and my wife.  Living in a country that allows dying with dignity through a Medical Assistance in Dying (MAID) program means ourselves and our family won't have to experience what Linda and her family had to suffer.

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Eve commented April 30

E

Eve

SF · 

April 30

When my grandmother was 100 years old and near death she started refusing food. They put her in the hospital to feed her for almost a week. I still can’t get over it.

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Nope commented April 30

N

Nope

Seriously · 

April 30

When our beloved dog died, we put her down with the family sitting with her and offering love and comfort. When my father died, I found myself wishing we could do something similar to what we did for our dog. End of life Care in this country is a travesty. I hope by the time I’m ready to go that will change, otherwise, I hope I’m able to do it myself.

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Joe commented April 30

J

Joe

Montana · 

April 30

Limiting food and water to hasten death is not an accurate description. Allowing a natural death by not providing enteral or parental feeding and hydration, respecting patient and family preferences is probably more accurate.

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Adrien commented April 30In reply thread

A

Adrien

Australia · 

April 30

@elle Eaxactly. Dementia is a terminal illness like other terminal illnesses. There comes a point when the body knows it is dying. Processes shut down. Appetite is one of those. Forcing people to eat when they don't want to is cruel, the desire not to eat is most likely because eating is causing discomfort and not pleasurable. If one was hungry they would eat!

This Dr clearly doesn't know anything about palliative care and the dying process

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Zaphod B commented April 30

Z

Zaphod B

Boston MA · 

April 30

We as a society need to embrace ‘quality’ of life, not just ‘quantity’ of life.

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Suzannah commented April 30

S

Suzannah

SC · 

April 30

As a psychiatrist my experience working in U.S. institutions (nursing facilities and state hospitals) has been that the majority of family members having a legal say in the long-term care of their supposed loved ones would rather vote and preach about how others ought to be restricted in their options while neglecting their own responsibilities in that realm. It is not nearly so heart-breaking and infuriating to see people living in nursing homes as it is to see them denied timely death there. I cannot tell you the number of people whose minds and independence in feeding, speaking, toileting and clothing themselves departed long, long ago who are snatched unnecessarily from the jaws of death when it arrives in the form of pneumonia or sepsis because the person granted power over them fears being deemed complicit in death's work. How many people, long departed in all but respiration, plodding heart and aching body, finally, FINALLY, die hooked up to lines and tubes and having cracked ribs from the ridiculous efforts of staff to revive a body long seeking to die? Those with the power to ease suffering but who, instead, choose to prolong it are among the lowest of "caregivers" and "guardians" and ours is an uncivilized nation.

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Bobo commented April 30

B

Bobo

Maryland · 

April 30

Both my lovely, wonderful parents died from Alzheimer’s.  One died at age 84, the other was 91.  I could not have loved them more.  They were in terrible health at the end of their lives.  I’m sure neither of them would want to continue their lives given their nonexistent quality of life.  It was hard to see them die;  it was harder to see them alive at the very end with no hope life would improve or offer meaning.

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littlescallop commented April 30

l

littlescallop

Somewhere in the South · 

April 30

A palliative care doc once said "your mother isn't dying because she's not eating, your mother is not eating because she is dying". 

Dementia is a terminal illness. Why are we insisting on keeping people with dementia alive?

Replies 1

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Samantha commented April 30In reply thread

S

Samantha

Washington DC · 

April 30

@Commenter Another hospice nurse here. We call this approach "pleasure feeing." Basically, food that the patient might like (ice cream 3x/day, yay!) is offered regularly and if the patient eats it, that's fine and if they don't, that's fine too. People with dementia still have a right to self-determination. People at this stage in their disease are not really eating for nutrition, it's all about pleasure and quality of life.

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Commenter commented April 30In reply thread

C

Commenter

Midwest · 

April 30

@Eve I am very fortunate that MY grandmother was adamant that she not be hospitalized ever again, no matter what. She understood that could hasten her death and signed paperwork to not transport her so her Assisted Living could be off the hook.  She started eating only ice cream and then stopped eating at age 101 and we didn't force her to take in anything. She died about a week later, peacefully in her bed. We were holding her hand.

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Daughter commented April 30

D

Daughter

Mid-Atlantic · 

April 30

The body’s refusal to eat is a natural progression towards the end of life. After remarking dejectedly that he couldn’t even remember what he read anymore, my 90 year old father began slipping pills and food in his pockets because he no longer wanted to eat. When I protested that he would die if he continued this way, he just looked at me wordlessly. After I understood what was happening following a meeting with hospice, we continued having regular mealtimes with my Mom in their independent living apartment, but Dad’s meals were light, soup, crackers and protein shakes, until he insisted that he could eat no more. We continued that way for two months gradually reducing at his direction to a few bites each meal until he could no longer swallow any solid food. I also gave him a few drops of liquid vitamins in water and always made sure he was hydrated. Then we engaged hospice care for several weeks where he received water along with the morphine, until he could no longer swallow anything. He asked that we be nearby and we were with him until his transition. When I went down to let the hospice nurse in at 3am, I heard my father’s voice above me say my name, and “I’m free. “ I felt some peace knowing that we gave him a good death. The hospice nurse said she could tell that he had had a peaceful passing. Maybe she said that to every family but I know it was the truth.

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Recommend 205

Kim commented April 30

Kim

Kim

New England · 

April 30

Is it a religious concept that makes people feel it is wrong to let someone die with dignity? I understand people wanting to be conscientious, but death is coming for all of us. It's not about your comfort with someone else's path. It should be up to them. Why force people to suffer when they never would have wanted that?

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True Blue commented April 30In reply thread

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True Blue

Wandering · 

April 30

@John Cato I do not want the Catholic Church or any religion imposing on my life or death. For those who do that's fine but I'm for freedom of choice when it comes to my healthcare.

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Recommend 159

Lisa commented April 30

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Lisa

Bowdoinham, Maine · 

April 30

When my grandfather was a month away from his 95th birthday, he called a meeting of his caregivers at the nursing home where he lived to tell them, “I’m done. I’m going to stop eating so I can die, and I hope no one tries to stop me.” It was heartbreaking to hear, because I loved my grandfather, but I loved him too much to protest. To their credit, the staff of the nursing home did not protest, but suggested that he at least drink water, so his death would be less painful. I was with him until the end, and he was indeed in peace and appeared to be in no pain. I am grateful that he still had all his faculties, so he could make that decision and express it clearly. It’s so sad that the woman in the article had not put that wish in writing. I applaud her family for making the decision to take her home to die in peace — that was a massive undertaking and an extraordinary act of love.

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Recommend 155

Marty Derrow commented April 30

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Marty Derrow

Florida · 

April 30

I am also a physician, cared for geriatric patients most of my career and am now geriatric myself.  Cessation of eating and drinking near the end of life is normal, expected and humane. End of life wishes stated in an advance directive should be honored, that's why we encourage their use.  No one should be "forced" to receive nutrition in this scenario.

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Recommend 154

Mari commented April 30

M

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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Recommend 152

Dr. Zen commented April 30

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Dr. Zen

Occidental, Ca · 

April 30

My father was a MD. I am a MD. We had a pact to "pull the plug", or the equivalent - if it came to it. Death is not hard, life is. It is a very personal decision.

May all Beings be Free from Harm.

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Recommend 150

Alex commented April 30

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Alex

camas · 

April 30

Some people think there is nothing worse than death, but that is not true. Being kept alive, in a persistent confused state, with zero hope of recovery, is worse. I definitely don't want that, and I don't know anyone who does.

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Recommend 146

Ready to ROC commented April 30

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Ready to ROC

Rochester, NY · 

April 30

“It’s rare that someone, even in the depths of debility, feels that their life is worth so little that they want to die..."

Patients in the throes of advanced dementia can't express whether they would like to live or not, so this statement can't be evaluated at all.  What I think happens is that the long-term-care industry sees patients as revenue streams, and don't want to participate in hasting a person's death and ending that particular revenue stream.  Care teams provide care to the patients as directed, but facilities that refuse to allow a patient to die with dignity are doing it for financial reasons (fear of a lawsuit, loss of revenue, etc.).  There is zero reason for anyone else's religious beliefs to butt into another person's life.  If your belief system leads you to think your interpretation of God wants you to live to the bitter end no matter what...go for it, but don't make me live by your beliefs anymore than I'll try to make you live by mine.  I support the Lawson's decision 100%.  I had a similar experience with my mother who chose to die with dignity rather than wait for the bitter end of her terminal disease.  She also died in her bed, surrounded by those who loved her, completely content and happy as she passed.  I believe that's how God (however you interpret that term) wants us to go.

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Recommend 133

Kingsley Kaminer commented April 30

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Kingsley Kaminer

Ormond Beach Florida · 

April 30

I am a hospice nurse. I also have a nearly 98 year old mom with dementia in an assisted living facility. Her quality of life is not great and she has few things she enjoys doing any more but she is not in pain, thankfully. Three points: My mom has little appetite (she can still eat independently when she is taken down to the dining room for meals but sometimes she refuses because she is just not interested in eating nor hungry) so while we always make sure food is available and set before her, we don’t force it or get into “food fights” with her. And we don’t worry about what she eats - any calories whether from ice cream or steak are good calories. Two: The body knows how to die. When someone is in the end stage of life, he or she is not hungry or thirsty. Three: Make an advanced directive! Before you are cognitively impaired or lack capacity to make your own decisions. Death is coming for us all and you are not going to avoid it. Discuss it with your family or whoever is your health care surrogate and be clear what you want.

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Recommend 131

AM commented April 30

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AM

NY · 

April 30

Withholding food and water to someone who wants it is cruel, but force feeding someone is not? 

We need to focus more on quality of life, not quantity. More ice cream and milkshakes or whatever people love should be the norm over Ensure. When someone is not going to get better, everything should be about comfort care. Those aides should take people outside to a garden instead of spooning in puréed tasteless food.

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Recommend 130

Barbara commented April 30

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Barbara

California · 

April 30

Why oh why does this have to be so complicated?  We can debate ethics and morals till the cows come home, to nobody's benefit.  How about this:  if the patient refuses to eat, honor that.  If they seem interested in eating, honor that. Wouldn't that be the ultimate fulfillment of anyone's vision of doing the "right" thing?

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Recommend 122

AS commented April 30

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AS

Colorado · 

April 30

Dementia is a terminal illness. I'll say it again for anyone going through the agony of seeing a loved one suffer with it. Dementia is a terminal illness. Like any terminal illness, it should be approached with kindness and dignity. I don't think it should be a radical idea to allow patients suffering from dementia to eat and drink what and when they want. When people with dementia start to refuse food and drink, that's usually a sign that it's time for them to die. We should allow people to do this peacefully.

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Recommend 114

carr kleeb commented April 30

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carr kleeb

new mexico · 

April 30

The saddest part of this article is that it makes dying of cancer sound better than dying of dementia. If I have late-stage cancer, I could die at home with pain mitigation provided by hospice. If I have late-stage dementia, I may be force fed long-term for someone's profit.

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Recommend 114

Vox Pop commented April 30In reply thread

V

Vox Pop

Boston · 

April 30

@elle

I know at least one person who would willingly "check out" if and when diagnosed with dementia or other such debilitating illness. I am just as sure there are others who feel the same way.

So, anyone who insists *everyone* wants to live (or be kept alive) for as long as possible, IS WRONG!

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Recommend 113

Sanity is at a premium commented April 30

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Sanity is at a premium

NJ · 

April 30

This is a great article and will benefit many people. Both my parents died from advanced dementia. Mom ultimately lost the sensation of hunger. She could still communicate well. After weeks of being spoon fed, she said very clearly and very often that it felt like we were forcing her to eat when she felt full. The nursing home said there was nothing they could do and that she was physically fine but wouldn’t eat. We brought her home and began hospice care

At one rare moment of complete lucidity, she said “It’s strange — I never feel hungry or thirsty. I haven’t eaten for a few days. I feel fine. But how can a person survive if they don’t eat? I feel that I should, but I feel full and after a few bites it feels like being forced to eat when you’re already stuffed.” 

I told her I understood, and that she should do what she felt comfortable with. We made sure she had plenty of her favorite foods always in sight, and encouraged her to eat at each mealtime, but stopped forcing. After a month of only occasional sips and bites, she passed. 

Those who insist on full feeding miss the point that the patient may be feeling tortured by eating when they don’t want to. And the administration in this article that called protective services on a family that was honoring the mothers wishes, only caused them and the patient extra grief.

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Recommend 111

CJ commented April 30

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CJ

USA · 

April 30

Imagine if we could legally give the same dignity and grace to our dying loved ones as we do to our cats and dogs. 

I've never met a person who wants to be kept alive when there's no life left to be lived.

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Recommend 109

LLL commented April 30

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LLL

US · 

April 30

I strongly disagree with the "ethics" expert who said that people in grave states of disability and illness don't really want to die.  I saw my father in that state. He wanted to go and instead was kept alive in a nursing home for 2 1/2 years. Let's stop the insanity over end-of-life situations and provide everyone with options to end their life (or the life of loved ones) in humane ways.

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Recommend 106

Just another old woman commented April 30

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Just another old woman

Louisville · 

April 30

Over a decade ago, my mother who was suffering from vernacular dementia broke her hip. Incapable of learning to walk again, she was confined to a wheelchair and moved to the back part of a room she shared with a woman who couldn’t leave her bed. My mom was miserable and then stopped eating. The home’s response was to feed her those sweet shakes that provide all nutrients. Such mixed feelings! Did I want to watch my mother die? Of course not. But the final 18 months of her life were brutal. Her dementia worsened; her bitterness became palpable and her cruelty- even to her beloved grandchildren- unbearable. Finally, her weakened body was overrun with infection. But then in the ICU, after an older doctor and I agreed that it was time to let her go, a younger one insisted that I was practically murdering my mother if I didn’t approve the blood transfusion that could potentially save her life. 

Thank you for this article. This is an important discussion for all of us. My mother’s memory is now much more complicated for us all than it needed to be. Sometimes natural death, even if preventable, has its gifts.

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Recommend 100

Sheryl commented April 30

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Sheryl

Boston · 

April 30

In a world where we would rather let women die than provide a much-needed abortion force feeding people to keep them alive when they would rather die, makes no sense

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Jeanne Bishop commented May 2

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Jeanne Bishop

Nor Cal · 

May 2

"Dr. Jim Wright, the former chair of the Post-Acute and Long Term Care Medical Association’s ethics committee . . . 'It’s rare that someone, even in the depths of debility, feels that their life is worth so little that they want to die,' he said."

Who died and made Jim Wright God?  Wright knows this how?

I don't care what Wright thinks and declares.  My life is not about "worth."

My husband died over 32 years ago.  He was dying from an aggressive cancer.  He chose when he would die.  He did so when he had had "enough."

I have a fatal diagnosis.  I will also choose when and how I will die.  I have no intention of sitting in a wheelchair in diapers, drooling on myself and unaware of my surroundings.  I refuse to live that way, period.  Not only do I have no intention of living with severe dementia, it is MY choice how and when to die.  I knew two people with dementia who died long and tortuous deaths.  I visited with each of them shortly before they died.  That is not for me.

Besides not wanting a tortuous end, I believe it is wrong to use medical care and resources at end-of-life which should go to others seeking treatments and cures.

As for others' religious beliefs, no one will impose their rules on me.   Even though today's gang-of-six on SCOTUS has gone rogue, it is still America, and there is supposed to be a separation between church and state.  I hope sane people will vote accordingly.  

Everyone dies.  Everyone.

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Recommend 96

Alice commented April 30

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Alice

FL · 

April 30

It seems to me that the caregivers who oppose reducing feeding based on cues from the patient are projecting their own needs and fears rather than addressing the patient's behavior.  They are imposing views based on a limited knowledge of the patient - perhaps to the detriment of the patient and contrary to the patient's stated desire for end of life care.

If the decision can be made to end dialysis, why can't the decision be made to allow the patient to determine how much food and drink he or she wants?

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Recommend 95

CC commented April 30

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CC

Central Coast · 

April 30

My 77 year old husband is currently in a rehab facility, and will be coming home tomorrow. His roommate, Ben, will be returning to assisted care. I don't know why Ben is there, I just know he's suffering enormously. Ben is a hundred years old. He has dementia, with few moments of clarity. I always smile and give him a cheery greeting, and he smiles back. Once, I chatted with him briefly, shook his hand, and thanked him for his WWII service. Ben was a seventeen year old ball turret gunner. Then the veil fell; his struggle to be lucid lasted only a couple of minutes. He sometimes shrieks in agony, or cries and moans, as nurses and aides scurry about trying to make him comfortable, shouting through his deafness. Keep him alive - gotta keep Ben alive. My husband, a former doctor, offers comfort during the long, hard nights when Ben is scared. This fine old man is being denied a good death. Strap him to his bed, feed him intravenously if necessary, but keep him alive. And for what? A doctor in the article said we tend to think the lives of those with disabilities aren't worth as much. Not true. They're worth everything. But Ben isn't living. He's dying, or at least trying to, and modern medicine won't let him. I wish this darling man Godspeed, and soon.

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Recommend 94

Chris commented April 30In reply thread

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Chris

San Francisco · 

April 30

@elle that quote jumped out at me too. The Dr implies that his judgment is based on the secret wishes of the patient. In this case Linda was clear with her wishes. And yet he’s on the opposite side of this issue. So hypocritical.

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Recommend 93

Maria commented April 30

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Maria

Portland Oregon · 

April 30

I am a speech-language pathologist who specializes in swallowing disorders, including end of life care ( hospice). Tube feeding in no way contributes to the well being of a patient with advanced dementia. It is minimally nutritive ( mainly hydrating), can lead to infection and does not prevent aspiration that leads to pneumonia. 

We must allow the patient/ parent their autonomy ,even when refusing food and liquid. 

For those who believe  God wants us to do everything to remain on earth.  Vatican II says heroic measures are not required if the body can no longer be of service to Christ.

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Recommend 93

Done commented April 30In reply thread

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Done

usa · 

April 30

@Commenter. My sister and I had a truly horrible time at a New York hospital trying to get humane care for our uncle in the last days, even though we had legal right to direct his care.. He had stopped eating and was not conscious, and they hooked him up to an IV so they could charge more days in the hospital. They even were sneaky and when we asked for the IV to be discontinued, they hooked it up after we left each time. They also didn’t respond to any request to give him pain medicine when he looked uncomfortable and hardly gave him any of the tiny dose he was prescribed for the ending. Americans should be very afraid of being at the mercy of a for-profit healthcare and their desire to make as much money as possible on someone dying from dementia. Also, the possibility of having to be under the care of people with no hearts, hostile to family members advocating for their loved ones for decent care.

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Recommend 92

Melinda commented April 30

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Melinda

Niskayuna, NY · 

April 30

Thank you.  We are facing this issue currently and the clear information in this article is very helpful.  Further, dementia has affected every member of my family who has lived past 60.  I feel doomed, especially since I discovered that those who take antihistamines have a 50% greater risk of dementia; I’ve been on them my whole life.  My husband and I are meeting with our lawyer in two weeks.  The timing of this article is welcome.

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Recommend 89

suz commented April 30

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suz

nyc · 

April 30

I have thought about this for a long time, and if I were ever to begin to have symptoms of dementia or Alzheimer's, I would not wait to act, although I'm sure that if it happened, I might feel differently. But knowing what goes on, especially in our country, as far as dignity and people's right to control their destiny—especially if they find themselves so ill that they really do not want to live, yet are forced to by law—I would arrange to end my life in a way that is as least painful as possible, but I would not wait until I know it would be out of my hands. Again, I know that sounds easy for someone to say who is not in that position, but I know that this is something I could not leave up to family, friends, or the governing rules as far as end-of-life choices.

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Recommend 88

Anna commented April 30

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Anna

Virginia · 

April 30

The concern about whether a family will prioritize their own concerns at the expense of grandma seems misplaced to me. Having to care for grandma, who doesn’t know who they are, doesn’t appreciate the sacrifices the family is making, is not happy herself, and absolutely will never recover seems like prioritizing grandma at the expense of the rest of the family. This grandma plans to make sure that doesn’t happen to my kids and grandkids.

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Recommend 87

Adam commented April 30

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Adam

New York · 

April 30

I have three relatives who chose to end their lives. Two men who were 95 without dementia, said they had enough and stopped eating mostly. One was in hospice, one in a nursing home. Another, a woman, with dementia committed suicide at a point she said that, if she did not do it then, she would be incapable of doing it later. 

     So misters Wright and Smith appear more interested in creating moral standards for everyone else than in simply listening to people. I live among all sorts of people and there are many, many who if they were in the "depths of debility" would want to be allowed to die. It's not rare at all that people, who everyone around them recognizes are at the end of their lives, would choose to die if only those around them would step back and allow it.

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Recommend 87

MidwifeMary commented April 30

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MidwifeMary

NY · 

April 30

Exactly what we did for my mom. Dementia, hip fracture, back to my house for recovery. In short order, she stopped eating, barely drank. We kept her comfortable and surrounded her with our voices, our care, soft music and our love. We made it through seasons of her favorite show, Call The Midwife. She transitioned, in my house, surrounded by her loved ones who had her best interests at heart. We all think she had a very good death.

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Recommend 87

yogahelps2 commented April 30

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yogahelps2

MI · 

April 30

So Wesley J. Smith "criticized Dr. Wechkin’s idea as slow starvation, which many would deem too cruel for pets, let alone people"

My siblings and I deem it too cruel to force those who are ready to die to starve themselves to do it, as our dad did in 2007 at age 91.   He did not have dementia but suffered 6 years in a nursing home with bad osteoarthritis and Parkinson's; his mind was good except when he was drugged up with painkillers.  Ten years after his death we found a notebook in which our mother had recorded his refusal of food and water:  40 days without food, 7 days without water.  We need euthanasia!

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Recommend 86

Katy commented April 30

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Katy

Vermont · 

April 30

One big thing that seemed to be missing in this was anything about the eldercare industry and how much money facilities get per head. They are incentived to keep people alive, even the nonprofit facilities through Medicaid billing or private funds.

 My grandmother was fortunate enough to be in a private facility that was thousands of dollars a month!! They kept her on all sorts of meds in her 90s as she was declining and my mom and Dr aunt told them to take her off... They balked and tried to guilt my family about her comfort, but we held firm...what does a 96 year old need with anti depression pills or high cholesterol meds when she eats maybe 300 calories and sleeps 23 hours a day...she died this year at 102.5...and thats ok. It's ok to let people die when their body or brain is done with this world. Modern medicine can do many amazing things, comfort as we near death is one.

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Recommend 84

JC commented April 30

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JC

USA · 

April 30

“Dr. Jim Wright, the former chair of the Post-Acute and Long Term Care Medical Association’s ethics committee, fears that ending the life of someone with dementia reflects the bias that the lives of those who are disabled are worth less. “It’s rare that someone, even in the depths of debility, feels that their life is worth so little that they want to die,” he said.”

And he knows this …. How? Who has told him this? How many people with late stage dementia, urinating and defecating without control, unable to talk, walk, participate, hug, sitting all day staring at the floor, have said this to him? 

I’ll wait.

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Recommend 79

Janie commented April 30

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Janie

Baltimore · 

April 30

When my mother was in the last stages of dementia, My father and I were asked to approve a feeding tube, since she was refusing to take the food they were feeding her.

We refused to authorize it. We knew she would attempt to pull it out, and so she would have to be restrained.  As awful as dementia is, to be restrained before you die seems to be the ultimate humiliation.

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Recommend 79

Leann commented April 30

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Leann

St louis · 

April 30

I have worked with Advanced Dementia patients.  It is eye opening. And there is a diversity of personalities, there are those who find such enjoyment in food that they will eat off the other persons tray. The person who doesn’t want to eat at all. The person who paces the hall for hours, working off calories they don’t eat, and the person who lays in bed and has to be coaxed to spend any time out of it. 

We need to address the issues concerning what is owed and respectful and what is not. I worked at a state facility that was so worried about people falling (because they had been dinged in it) that they had 7 patients with 24/7 “sitters”. And guess what, many of them still fell. Because they can be impulsive, because even walking with someone, if they trip or stumble and lose their balance, you can’t always correct it. 

They were travel medical aids and it probably cost $250,000 a year per person. With limited medical dollars we as a society need to decide what is ethically mandatory. And if it is ethically mandatory that a 90 year old is kept from falling, then isn’t it mandatory that a 40 year old have free insulin, or a 7 year old access to dental care?  If healthcare is a right for the elderly, isn’t a right for everyone?

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Recommend 77

Alla commented April 30In reply thread

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Alla

Texas · 

April 30

@LHH This is what compassion and love look like. Thank you for sharing your story.

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Recommend 76

Mel commented April 30

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Mel

GA, US · 

April 30

My dad was in hospice care with advanced, terminal bone cancer. Although his mind was still active and alert, his body was ravaged and in constant pain. Near the end he refused to eat. He was done and wanted to die and told us so.

Our addled elderly dog is half blind, mostly deaf, and has mobility issues. But he loves to eat! We have decided that if that changes and he's no longer interested in food, that will be the time to help end his suffering.

Force-feeding those near the end of life seems needlessly cruel. Not wanting to eat seems to be a sure sign that they're ready to let go and a is natural way to do so. After reading this article I'll be sure to add "no force-feeding" to my DNR!

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Recommend 75

MIssingMexico commented April 30In reply thread

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MIssingMexico

Lower 48 · 

April 30

@elle

My father, at the age of 86, and declining rapidly after a fairly healthy and robust life, took matters into his own hands and ended his life on his terms. I don't think he wanted to die, so much as he saw the road ahead, and didn't want to take that path. I've always respected his decision.

After he died, I did a bit of research, and found that white men over the age of 85 was the second-highest category of suicide in the U.S.

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Recommend 74

the passionate reader commented April 30

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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 74

KI commented April 30

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KI

USA · 

April 30

It can be extremely distressing to families when a patient has requested no food or water near the end and it is actually carried out. It is very, very sad to see a loved one enduring that. I think the middle ground of comfort feeding / hydration is an excellent idea.

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Recommend 72

Autumn commented April 30In reply thread

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Autumn

Oakland, CA · 

April 30

@Jay El Eating and drinking when they’re hungry or thirsty, vs force feeding.

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Recommend 72

Cindy commented April 30

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Cindy

Seattle, WA · 

April 30

Comfort feeding seems like just plain common sense.  Offer them food and drink, but if they don't want to eat, why force them to?  Someone in the article likened it to starving a pet, but the main signal that my pets in failing health have always given me that they're ready to go is that they STOP EATING.

Honestly, death comes for everybody.  It's not a defeat to stop fighting it when the time comes.

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Recommend 72

DJS commented May 1In reply thread

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DJS

New York · 

May 1

@Jay El

My mother died of dementia recently. She had been suffering from dementia for over fifteen years.  In the beginning, she was able to express that she wanted to die.  She was NOT happy, let alone "very very happy with the life that she had."  She  did not want to live .  She died a slow, agonizing death due to dementia. 

Her mother had suffered from dementia. Becoming demented like her mother had was my mother's worst fear.  It turned out to be worse that my mother's worst fear, as her mother died within a few years of becoming demented, while my mother was demented for over fifteen years. 

My mother was virtually catatonic  during the last months of her life. I have no way of knowing what her thoughts were, if she was capable of thinking.  My mother suffered horribly,  

I would like to have the option of ending my life, or to be able arrange to have someone to end my life if dementia begins to set in.

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Recommend 72

Kevin commented April 30

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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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Recommend 70

True Blue commented April 30In reply thread

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True Blue

Wandering · 

April 30

@AnnH  What an loving family to ease the way for their mother and wife. And thank goodness for a car that didn't work. My deepest condolences to her family and to you too Ann.

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Recommend 68

Dede Wilder commented April 30

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Dede Wilder

Brunswick, Maine · 

April 30

I’m 76 and have just done my advanced directive.  I don’t recall limited feeding as an option . . .but know I opted for only comfort care.  I’m now assuming this will/would include forced feeding.  How dreadful and terrifying.  I wish we would all be more accepting of death’s inevitability.  No one gets out alive, as they say,  and why shove food in my face when I’m on my way out?  Seriously it’s insane.

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Recommend 68

Rested Woman commented April 30

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Rested Woman

Santa Fe, New Mexico · 

April 30

My mother is now at the stage with Alzheimer’s where she is just staring at her food. There is no way she wants to stay alive. This was her worst nightmare - and now it’s our entire family’s nightmare. It’s honestly cruel to not let people die with dignity. Cruel to the individual with Alzheimer’s and their family. It’s lonely. Financially it’s a disaster. The experts other than hospice are not great. When are we going to start properly supporting families with dementia? This is trauma work.

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Recommend 68

Mike Conrad commented April 30

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Mike Conrad

Washington DC · 

April 30

In my view, AMDs and POAs should be required of everyone, just like taxes.  Maybe everyone over 40, IDK.  Granted, we'll have to forgo the traditional funeral homily about how "Michael was a fighter, and he fought death every day until his last."

More than willing to do without that particular cliché myself. Maybe "Michael died the way he lived: deliberately."

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Beatrix commented April 30

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Beatrix

Massachusetts · 

April 30

God. Just let people die the way they want to, already. 

How is it possible that bodily autonomy is still up for debate in this forsaken culture we all inherited. Just how.

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Katharine commented April 30

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Katharine

Minneapolis · 

April 30

"As a society, “we have been putting an awful lot more energy into making sure death happens than providing care,” - Wesley Smith

Smith seems to be intentionally ignoring the issue of quality over quantity. If I am sitting in a wheelchair, incontinent, unable to speak, not interested in food (and I LOVE food), and generally unable to do anything, including care for myself - I do not want to be alive. I am baffled that Smith wants the opposite. In fact, I find it selfish - be it reluctance to acknowledge death or the desire to make money. 

Human beings deserve a dignified, comfortable death at their request.

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Recommend 64

Joe Gillis commented May 3

Joe Gillis

Joe Gillis

Sunset Blvd. · 

May 3

“Dr. Jim Wright, the former chair of the Post-Acute and Long Term Care Medical Association’s ethics committee, fears that ending the life of someone with dementia reflects the bias that the lives of those who are disabled are worth less.”

Wow. 

That an ethics expert can’t see the difference between a disabled person with agency and one with end stage dementiia is extremely troubling. 

It is unethical to not honor a patient’s wishes. It is also unethical to require a family to prolong the agony of caring for a person with zero mental ability and to drain their savings while they do it.

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Kathleen commented April 30

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Kathleen

Kentucky · 

April 30

About a month ago, I had an elderly patient who the previous day was willing to take meds and eat, clearly announce to me she was no longer taking meds, eating, or allowing staff to brush her teeth.

Her words: "I am dying. I am not doing anything."

I said: "Okay. Do your children know your wishes? You need to tell them."

I then wrote a note to physicians, relaying my conversation with the patient. 

She was made hospice care the next day, snd died a few days later, without force feeding or forcing medications.

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Recommend 61

Diane F. commented April 30

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Diane F.

illinois · 

April 30

When a dog no longer shows any interest in eating, due to age, or some other illness, pet owners have the good sense to put them down in a humane way.

We somehow can't treat our extreme elderly or incapacitated with the same compassion.

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Recommend 61

Patti Travaglio commented April 30

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Patti Travaglio

Southampton NJ · 

April 30

I only have 2 perspectives. My father had a rapid decline over the course of 1 month, admitted to the hospital at 89 years of age, permanent pacemaker placed, rehab, aspiration pneumonia, hospital, in-patient hospice, peaceful death with my sister and our mother by his side. He HAD been losing weight and failed his swallow eval, which meant pureed food, which he hated. It was not easy, but it was quick and we are all grateful for that.

My other perspective is as an acute care nurse for more than 35 years. It is beyond cruel what is done to patients with dementia. Feeding tubes were never meant for long term use. I wish that more providers would have these difficult conversations earlier and allow the patient to guide the plan of care.

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Recommend 61

Leslie commented April 30In reply thread

L

Leslie

Dutchess County · 

April 30

@Jay El disagree. Both my parents had/have dementia. My father *was* happy despite the dementia that killed him. My mother is unhappy but also recently told me she wants to live. 

There is no one path with dementia. We have to treat the person in front of us. My father fed himself up until 24 hours before dying. He also slept 22 hours a day. He also was incredibly thirsty during the 4 days it took him to die. He would suck down 8 oz. of water in one go -- I believe it would have been incredibly cruel to withhold water from someone with a raging thirst who so clearly wanted it.

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Recommend 60

Melissa S commented April 30

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Melissa S

NYC · 

April 30

Well done, Lawson family.  Well done, Dr. Wechkin.  Thank for this story and language I can add to my advanced directive.

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Recommend 60

Kim commented April 30In reply thread

Kim

Kim

New England · 

April 30

@Commenter Thank you for writing.

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Recommend 59

JW commented April 30

JW

JW

Colorado · 

April 30

In my case, I would consider myself selfish if I wanted to be sustained beyond the time I can care for myself.  I wouldn't want children I can't even remember giving up their lives to care for an empty shell.

Glad I read this.  Now I know what to do.  Before I forget.

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Recommend 59

J commented April 30

J

J

M · 

April 30

This is, frankly, a symptom of better health care - we are living longer than our bodies are meant to. We're not dying before we start to actively decay, the way that we used to. Not to say that there weren't people who made it to such advanced ages, there were. But now that is the reality for most people instead of just a rare number. Now, we have the quandary of what to do with huge numbers of individuals whose care is incredibly intensive, and whose lives often lack quality and dignity. My grandfather, at 99, told me that he wished he would die. I wished he could have his wish. When families are prolonging the life of a loved one against their wishes, that's selfishness. When someone in that position wishes to end their life with dignity, I would find it cruel to prolong it against their will.

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Recommend 59

SR commented May 1In reply thread

S

SR

Houston, TX · 

May 1

@elle  I really resent the implication that if a person wants to die, that person must think that his or her life is worthless or worth little. There are lots of reasons why people who are diagnosed with dementia or other horrible fatal illnesses and conditions may want to die--not wanting to be in physical or mental pain and/or constantly beg for pain relief, not wanting to burden loved ones, not wanting to lose dignity, not wanting to lie all day in their own waste in a medicaid nursing home, not wanting to impoverish their surviving spouse, not wanting everyone to remember them as a diminished person, not wanting to lose all privacy and agency as a human being, just for starters.

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Recommend 59

Senior Citizen commented April 30

S

Senior Citizen

NH · 

April 30

My husband of almost 52 years passed away in January of last year at 96.  He had been in a care facility just a few blocks from home for not quite a year because he kept falling and I couldn't lift him since I have had shoulder replacements.  He spent most of his time sleeping even when I took him out in the car for a ride of an hour or so when we would go to McDonalds for a milkshake, his favorite, or to Dunkin for two donuts and a Mocha.  Otherwise he barely ate even though the food quality was good and was basically skin and bones because ordinary food like the breakfasts he had always loved no longer interested him.  Then he fell and tore the ligaments or tendons above the knee and became bedridden.  A full care home was far above our budget so I brought him home and my paramedic daughter helped me with his care.  Again he slept and usually refused food.  After several weeks he was taken to Hospice so we could have a couple of days of respite and they were able to bathe him which we hadn't been able to do.  He was cheerful  when I went over to see him the next morning and he announced that he had had a blueberry muffin and a glass of orange juice.  It was his last meal as he hadn't wanted anything more and passed in the night.  But the little food was his choice and I've heard of others who refused food toward the end.  Yesterday would have been his 98th birthday!

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Recommend 59

Steve Epstein commented April 30

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Steve Epstein

Folsom, CA · 

April 30

I was diagnosed with Alzheimer’s about a year ago. I hope to be boarding a flight soon to Switzerland to engage in physician assisted suicide. I, too, was deeply disturbed by the effects of late-stage dementia. I swore to myself that I would not let this happen to me. I understand that the article discusses alternative methods to addressing this issue without a directive but the larger issue is allowing and assisting individuals to die with dignity without penalty to any resource involved. 

We are such a culturally encumbered country to wring our hands around the wishes of an individual involving personal choice. Leave the woman alone. She has made it clear what she desires. Get out of her way.

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Recommend 58

Andrea commented May 2

A

Andrea

Monterey County · 

May 2

And on a related note, I have long thought that requiring people who are living in a nursing home with no chance of recovery to follow medically advised diets (low-salt, low-carbs, etc.) is ridiculous and cruel.  If I have dementia and diabetes and am "living" in a nursing home, you better bring me ice cream, chips, pasta and See's candies!  At that point, who cares if it is bad for me?!

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Recommend 58

A Woman commented April 30

A

A Woman

Vermont · 

April 30

I’ve heard stories of great grandparents choosing to stop eat so they could die. 

And to the doctor who said we wouldn’t do this to pets— I‘ve had many, and nearing end of life most (with a natural death) have stopped eating and retreated or hidden themselves and basically gone off to die. 

This sounds like a very balanced approach. Letting the actual person decide when and if to eat. We all want autonomy, no matter where and when we are in life.

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Recommend 55

Nancy Smith commented April 30

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Nancy Smith

Austin, Tx · 

April 30

My 92 year old mother experienced the what she called the “double whammy:” a massive  stroke and a broken hip (caused by the fall she took when she was stroking).  We had discussed many times that should this happen to her, she would want to die.  The stroke also caused cognitive decline and global aphasia.  After her hip was repaired, she was released into home hospice.  She could no longer read or comprehend anything on TV.  We had no idea if she understood anything we said (though she recognized (for the most part) her children, and became animated when her grandchildren and great grandchildren came to visit).  We could understand very little of what she was trying to say, except when she asked to die over and over.  Her written medical directive indicated she should not be fed at all when she was terminal.  However, she still showed some signs of thirst and hunger.  So we children decided that we would only give her water and what food she wanted and would let nature take its course.  At the end, all she wanted was water and milkshakes (in this case, melted chocolate ice cream).  Her constitution was so strong that it took 5 months from her stroke until she died.  All along, we were afraid that maybe we were doing the wrong thing, especially because it took so long for her to die.  This article gave me some peace that we were providing appropriate comfort for her final journey.

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Recommend 55

Nina commented May 1

N

Nina

Minneapolis · 

May 1

I'm a Death Doula and see this uncomfortable predicament all the time. People: Write a solid Advanced Health Care Directive!!! What do you want at your end of life? Put it to paper. Get it witnessed / notarized, file it with your primary physician, then fill out a Provider Ordered Life Sustaining Treatment (POLST in MN, MOLST in other states - do a search for yours). 

Compassion & Choices has a great Dementia Directive that can be an addenda to your AHCD. Mine states that, if I cannot pick up a utensil to feed myself, do not feed me. Keep me comfortable with mouth sponges and let me go. No vent, no J-tube for feeding. At some point we all need to realize that our own death is inevitable. I don't want to be fed to be kept alive. To what end? It takes courage to face the facts of death, and it takes courage to make steps to ensure you are stating what you want. It takes courage for families to honor our choices.

I have recommended "comfort feeding" for clients when it seems obvious they are not wanting to eat much. I have trained staff on signs for which to watch. The body does what it does and it will slowly slow down, not needing more calories. Be kind to those you love and honor their wishes, whatever those wishes may be.

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Recommend 55

Daveysdad commented April 30

D

Daveysdad

Birmingham, AL · 

April 30

My father approached death at age 94 in the early months of 2024. He was a brilliant man and a responsible one and he had luckily set it all out exactly what he wanted. My sister and I even though we don't agree on many things fully agreed on following my dad's wishes. However when he landed in the hospital due to a fall and told the nursed that he did not want to eat, a doctor came in to examine him. Dad had been slowly losing his appetite eating less and less and less. His once brilliant mind had begun to shrink physically, that's what it says on his death certificate.  The doctor tried to force feed him and not just once but several times on the third time in with the spoon my father in one of his last most dignified Acts knocked the spoon out of his hand and said no in a very authoritative voice. The doctor then said well I guess a feeding tube is next and my sister and I both spoke up and said no absolutely not. Because Dad was dying he was losing touch with who he was and he had specifically stated how he wanted to go if it reached this point. He went on hospice care and never had to be administered drugs for palliative care. He just grew more and more tired and finally went to sleep three or four weeks later. I'm still upset with that doctor trying to poke spoons full of food to my declining dad. There's an awful lot of cya out there when it comes to the care of the dying and I despise it. I am so glad this family rescued their mother from the real suffering.

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Recommend 54

Liz commented May 3

Liz

Liz

Maryland · 

May 3

My 16.5 year old beloved dog developed dementia and definitely became less interested in food/water and of course, we did not force feed her, but set out food & water in the usual place so she could eat when she remembered - comfort feeding.  Luckily, because she's a dog, we were able to end her life as she licked a bowl of melted vanialla ice cream.

My 83-yr mother with late-stage dementia suffered forced regular feedings and it was only when even that was no longer enough that the care home sent her to the emergency room with severe dehydration.  My older brother & I decided not to allow iv feeding. Several other siblings called it starvation and death by thirst, but it was clear my mother was end stage but still able to be disturbed by the hospital environment which required scheduled hospital interventions.  My brother & I called in hospice and without iv feedings, she died five days later in a uncomfortable morphine haze - just enough morphine to ease discomfort but without killing her.  

My dog definitely had the more compassionate, loving, and comfortable death.

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Recommend 54

Veggie commented April 30In reply thread

V

Veggie

dc · 

April 30

@Leslie, of course your comment about the cruelty of withholding liquids is not related to the article.  The approach outlined literally follows the signals given by the patient.  Withholding liquids when the patient signals they want them isn't on the table.  I'm curious why you say that?  Did you read the article?  Are you perhaps focused on some other her issue?  I'm really curious what is going on with your comment.

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Recommend 53

BrewDoc commented April 30

B

BrewDoc

Rural Wisconsin · 

April 30

Years ago taking care of a 90+ yo I was asked to provide tube feeding in the face of a massive stroke which left the patient non-communicative. Reviewing the chart there was appropriate documentation that tube feeding should not be used. The primary physician had not reviewed the document nor discussed the plan with family. I refused to do the tube feeding until he discussed it with family. His reply, you have to or it is murder. He discussed it with family who adamantly refused tube feeding. The patient was kept comfortable and died peacefully 48 hours later. Perfectly acceptable by the AMA code of medical ethics. My spouse and I have an agreement to never have each other fed unless we indicate we want something (minimal comfort feeding).  If I can’t make my wishes known because of dementia go with what I said prior to the dementia. We all die and we show more mercy to our pets than our fellow humans.

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==

세진님, 보내주신 뉴욕타임스 기사와 독자 댓글을 바탕으로 작성한 요약과 평론입니다. 요청하신 대로 나를 향하지 않은 본문 글은 <해라> 체를 사용하고, 별표 대신 < >를 온전히 적용하여 작성했습니다.

요약: 말기 치매 환자의 영양 공급과 존엄한 죽음에 대한 논쟁

1. 기사 본문 요약: <최소 위안 급식(Minimal Comfort Feeding)>의 등장과 갈등

• 린다 로슨의 사례: 과거 요양원에서 치매 환자들에게 음식을 떠먹이는 일을 했던 린다 로슨(Linda Lawson)은 61세에 치매 진단을 받았다. 그녀는 평소 연명 치료보다 삶의 질을 중시하며 그런 상태로 살고 싶지 않다고 말해왔으나, 이를 법적 구속력이 있는 사전 연명의료의향서(Advance Directive)로 명문화하지는 못했다. 결국 말기 상태에 이르러 요양원 직원들로부터 강제로 하루 세 번씩 음식을 제공받게 되었다.

• 새로운 대안의 제시: 린다의 가족은 환자가 음식을 거부하는 몸짓을 보이자 연명을 원치 않았고, 의사의 제안으로 2025년 2월 홉 웨치킨(Hope Wechkin) 박사 등이 논문으로 발표한 <최소 위안 급식(Minimal Comfort Feeding)> 프로토콜을 알게 되었다. 이는 정기적인 급식을 중단하고, 환자가 배고픔이나 갈증의 신호를 보낼 때만 위안을 줄 수 있는 최소한의 음식과 액체를 제공하여 자연스러운 죽음을 맞이하게 하는 방식이다.

• 제도적 장벽과 윤리적 논쟁: 요양시설들은 연방 정부(CMS)의 규정에 따라 하루 세 번의 식사를 제공해야 하고, 환자의 체중 감소를 보고해야 하므로 불이익이나 소송을 우려해 이 방식을 거부했다. 의료계 내에서도 의견이 갈린다. 일부는 이를 '서서히 굶겨 죽이는 잔인한 행위'라거나 장애인의 삶의 가치를 폄하하는 바이아스(Bias)라고 비판하는 반면, 다른 편에서는 억지로 먹이는 행위 자체가 환자에게 고통을 주는 연명에 불과하다고 지적한다. 결국 린다의 가족은 그녀를 집으로 데려와 직접 이 프로토콜을 수행했고, 성인보호소(APS)의 신고를 당하는 등의 갈등을 겪은 끝에 가족들이 지켜보는 가운데 평화로운 죽음을 맞이하게 했다.

2. 독자 댓글 요약: 의료 현장의 증언과 대중의 공감

기사에 달린 수많은 댓글은 압도적으로 <최소 위안 급식> 및 환자의 자율성 존중을 지지하는 경향을 보인다.

• 임상 전문가들의 지지: 전직 ICU 간호사, hospice 간호사, 의사 등의 전문가들은 임종 단계에서 신체 기능이 저하될 때 억지로 수액(IV)이나 영양관(Tube Feeding)을 연결하면 오히려 폐수종, 흡인성 폐렴, 장기 부담을 유발해 환자의 고통을 가중시킨다고 증언했다.

• 제도 및 자본주의 비판: 많은 독자가 현대 의료 시스템이 환자를 '수익 창출의 수단(Commodity)'으로 보며, 요양시설들이 규제 회피와 재정적 이익(방어 진료 및 보조금 청구)을 위해 불필요한 연명을 강제하고 있다고 비판했다.

• 보편적 권리로서의 Bodily Autonomy(신체적 자율성): 인간의 존엄성은 살아있는 기간의 길이(Quantity)가 아닌 삶의 질(Quality)에 있다는 점을 강조하며, 반려동물에게 행하는 인도적 종말(안락사 및 자연스러운 거부 인정)만큼의 자비가 인간에게도 허용되어야 한다고 주장했다. 또한, 치매가 오기 전에 사전 연명의료의향서를 명확히 작성해야 한다는 필요성에 깊이 공감했다.

평론: <살려두는가>와 <살아있는가>의 경계에서 현대 의학이 놓친 것

본 기사와 댓글은 현대 의학의 발전이 가져온 가장 어두운 역설, 즉 '생물학적 호흡의 연장'이 어떻게 '인간적 존엄의 말살'로 이어질 수 있는지를 린다 로슨이라는 한 여성의 삶과 죽음을 통해 통렬하게 고발한다. 이 텍스트가 제기하는 핵심 화두는 단순히 음식을 끊느냐 마느냐의 기술적 문제가 아니다. 그것은 주체성을 상실한 인간의 신체를 두고 국가 규제, 자본주의 의료 산업, 그리고 개인의 자율성이 충돌하는 윤리적 전쟁터의 기록이다.

1. 인위적 영양 공급의 폭력성과 문화적 맹점

현대 사회에서 '먹이는 행위'는 오랫동안 사랑과 보살핌, 그리고 도덕적 의무의 상징이었다. 그러나 치매의 최종 단계, 즉 신체가 스스로 소화 기능을 멈추고 거부의 신호를 보내는 임종의 과정에서 기계적으로 스푼을 입에 밀어 넣거나 영양관을 꼽는 행위는 보살핌이 아니라 법적·행정적 규제를 만족시키기 위한 일종의 '제도적 폭력'으로 변질된다.

일부 윤리학자나 의사들이 "disabled(장애를 가진) 이들의 삶의 가치를 낮게 평가하는 바이아스"를 우려하는 것은 일견 타당해 보일 수 있다. 그러나 이는 환자의 고통에 귀를 닫은 경직된 학술적 오만에 가깝다. 댓글에서 한 간호사가 지적했듯, 임종기 환자는 "굶어 죽는 것이 아니라, 죽어가고 있기 때문에 먹지 않는 것"이다. 신체가 스스로 가동을 멈추는 자연스러운 쇠퇴의 과정을 의학의 힘으로 강제 역행시키려는 시도는, 결국 환자를 인공 튜브와 라인에 묶어둔 채 갈비뼈가 부러지도록 심폐소생술을 시도하는 잔인한 결말을 낳을 뿐이다.

2. 요양 산업의 자본주의적 포섭과 법적 규제의 한계

이 논쟁이 해결되지 못하고 법적 그레이 존(Legal Gray Area)에 머무는 근본적인 원인은 미국의 메디케어·메디케이드(Medicare/Medicaid) 규제와 사법 리스크, 그리고 요양 산업의 영리 구조에 있다. 요양시설에 환자는 곧 '고정적인 수입원(Revenue Stream)'이며, 정부 규제는 환자의 개별적 소망이나 삶의 질보다는 눈에 보이는 '체중 유지와 식사 횟수'라는 수치적 데이터로 기관을 평가한다.

이러한 시스템 속에서 의료진은 환자의 최선의 이익이 아닌, 기관의 안위와 소송 방어(CYA: Cover Your Ass)를 위해 강제 급식을 선택하게 된다. 환자를 진정으로 위하는 길을 택하려 했던 린다의 가족이 되려 성인보호소에 '노인 학대'로 신고당하는 장면은, 현대 의료 법제도가 얼마나 인간의 구체적인 존엄성으로부터 동떨어져 있는지를 보여주는 극치다.

3. 자율성의 시차(Time-lag)와 <최소 위안 급식>의 가치

에릭 위데라(Eric Widera) 박사가 제기한 의문, 즉 "과거 온전한 정신일 때 존엄사를 원했던 주체"와 "치매에 걸렸지만 현재 아이스크림을 받아먹으며 행복해 보이는 주체" 중 누구의 말을 들어야 하는가에 대한 질문은 매우 날카롭다. 인간의 정체성은 고정된 것이 아니기에, 과거의 선언이 현재의 생존 본능을 억압하는 도구가 되어서는 안 되기 때문이다.

이 지점에서 웨치킨 박사가 제안한 <최소 위안 급식>은 매우 영리하고도 자비로운 절충안을 제시한다. 이 프로토콜은 기계적인 단식도, 기계적인 강제 급식도 아니다. 환자가 밀어내면 멈추고, 밀크셰이크를 원하면 제공하는, 철저히 환자의 '현재 몸의 신호'에 맞추는 방식이다. 이는 과거의 서면 지시 사항에만 매몰되지 않고, 현재 환자가 느끼는 comfort(위안)를 최우선으로 삼는다는 점에서 의학이 지향해야 할 진정한 <환자 중심주의>를 구현한다.

결론: 자연스러운 죽음을 허용하는 문화로의 이행

수많은 독자가 반려동물의 안락사를 언급하며 인간의 임종 환경을 '비참함(Travesty)'이라고 부른 것은 시사하는 바가 크다. 우리는 동물에게 허용하는 최소한의 자비, 즉 '고통 없이 자연스럽게 떠날 권리'를 인간에게는 법과 종교, 그리고 자본의 이름으로 금지하고 있다.

린다 로슨의 가족이 사법적 위협 속에서도 그녀를 집으로 데려와 <Little House on the Prairie(초원의 집)>를 틀어놓고 마지막 숨을 지켜봐 준 행위는 위대한 사랑의 실천이자 제도에 대한 침묵의 저항이다. 현대 사회는 이제 단순히 기술적으로 생명을 얼마나 더 연장할 수 있는가라는 오만한 질문을 버려야 한다. 대신, 신체가 삶을 끝내고자 할 때 그것을 품위 있게 받아들이고 자연스러운 죽음을 허용(Allow Natural Death)하는 법적·문화적 토대를 어떻게 마련할 것인가를 치열하게 고민해야 할 때다.

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혹시 이 요약과 평론에서 특정 관점을 더 보완하고 싶거나, 세진님이 추가로 인상 깊게 읽으신 독자의 의견이 있다면 말씀해 주세요. 다음 논의에 반영하겠습니다.

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<「She Didn’t Want to Live With Advanced Dementia. So Why Was She Being Kept Alive?」 요약+평론>

이 글은 미국 <뉴욕타임스>에 실린 장문의 르포 기사로, 말기 치매 환자에게 음식과 물을 계속 제공해야 하는가라는 매우 어려운 윤리적 문제를 다룬다. 특히 “minimal comfort feeding(최소 위안 급식)”이라는 새로운 접근법을 중심으로, 인간의 존엄, 돌봄, 연명, 가족의 죄책감, 의료 시스템의 구조적 압력, 그리고 죽음에 대한 현대 사회의 태도를 깊이 탐구한다. 댓글들 역시 단순한 찬반이 아니라, 실제 가족 경험과 호스피스 경험을 바탕으로 매우 진지한 사회적 토론을 형성한다.

기사의 중심 인물은 린다 로슨(Linda Lawson)이다. 그녀는 젊은 시절 요양원에서 고도 치매 환자들을 본 뒤, 자신은 절대로 그렇게 살고 싶지 않다고 주변에 반복해서 말해왔다. 그러나 수십 년 뒤 실제로 치매에 걸렸고, 결국 언어 능력과 자가 식사 능력을 잃은 상태에 이르렀다. 그녀는 음식을 거부하는 듯 고개를 돌리거나 몸을 밀어내기도 했지만, 요양시설은 계속 하루 세 번 식사를 제공했다. 남편과 딸은 그것이 어머니의 의사에 반한다고 느꼈다.

가족은 “삶의 연장”보다 “편안함”을 원했다. 여기서 등장하는 개념이 “minimal comfort feeding”이다. 이는 환자가 명확히 원할 때만 소량의 음식과 물을 제공하고, 억지로 먹이지 않는 방식이다. 즉 굶겨 죽이는 것이 아니라, 식욕과 갈증이 거의 사라진 말기 상태에서 자연스러운 죽음의 과정을 방해하지 않는 접근이다. 기사 속 의사 호프 웩킨(Hope Wechkin)은 이를 “먹이거나 굶기거나”의 이분법을 넘어서는 중간 지대로 설명한다.

기사가 중요한 이유는 단순히 안락사 논쟁을 다루기 때문이 아니다. 오히려 현대 의료 시스템이 죽음을 어떻게 이해하는가를 보여주기 때문이다. 의료 시스템은 기본적으로 “살리는 것”에 맞춰 설계되어 있다. 먹는 행위는 의료 처치가 아니라 인간 돌봄의 가장 기본 행위로 간주되기 때문에, 의료진은 음식을 중단하는 데 매우 큰 심리적·윤리적 저항을 느낀다. 기사 속 간호사들과 요양시설 관리자들은 규정 위반, 소송, 학대 신고 등을 두려워한다. 미국 메디케어 제도는 요양시설에 주민들의 체중 감소나 식사 문제를 보고하도록 요구하며, 시설은 “먹이지 않았다”는 비난을 극도로 경계한다.

이 기사에서 특히 인상적인 부분은, 가족들이 말기 치매 환자의 “행동”을 어떻게 해석하는가이다. 어떤 날 린다는 입을 다물고 고개를 돌렸고, 어떤 날은 밀크셰이크를 마셨다. 가족은 그것을 “삶에 대한 마지막 작은 욕구”로 이해하기도 하고, 때로는 단지 입의 건조함이나 반사행동일 수도 있다고 고민한다. 이는 말기 치매에서 의사 표현이 얼마나 모호한가를 보여준다. 현대 자유주의 윤리에서는 “자기결정권”이 핵심 가치지만, 치매는 바로 그 자기결정권의 주체 자체를 흐리게 만든다.

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댓글들은 이 기사를 더욱 깊게 만든다. 수많은 독자들이 자신의 부모, 배우자, 혹은 환자 경험을 털어놓는다. 놀라운 점은 댓글의 상당수가 “억지 급식”에 비판적이라는 것이다. 특히 호스피스 간호사나 돌봄 경험자들은 말기 치매를 “회복 가능한 상태”가 아니라 “종말 과정”으로 이해한다.

한 댓글 작성자는 다음과 같이 말한다. “알츠하이머는 말기 질환이다. 몸은 서서히 기능을 멈춘다. 식욕이 사라지는 것은 자연스러운 과정이다.” 또 다른 사람은 “우리 가족 개에게는 자연스러운 죽음을 허용했는데, 인간 가족에게는 그러지 못했다”고 썼다. 이러한 표현은 잔인하게 들릴 수도 있지만, 현대 사회가 죽음을 지나치게 의료화했다는 비판을 담고 있다.

특히 여러 댓글에서 반복되는 주제는 “quality of life(삶의 질)”이다. 사람들은 단순히 심장이 뛰는 상태를 인간다운 삶으로 보지 않는다. 어떤 이는 “부모님 두 분 모두 알츠하이머로 돌아가셨다. 살아 있는 것이 아니라 이미 존재가 사라진 상태였다”고 말한다. 또 다른 이는 “우리는 죽음을 받아들이지 못해 마지막 순간까지 단백질 보충제를 밀어넣었다”고 후회한다.

반면 기사와 댓글에는 강한 반론도 존재한다. 일부 의사와 장애인 권익 옹호자들은 “삶의 가치가 낮다고 판단하는 위험한 문화”로 흐를 수 있다고 우려한다. 특히 “치매 환자가 정말 죽고 싶어하는가?”라는 질문은 쉽게 답할 수 없다. 어떤 환자는 겉보기에는 평온하고 음악이나 아이스크림에 즐거움을 느끼기도 한다. 따라서 “예전의 건강한 자신이 남긴 의사”와 “현재의 치매 상태의 존재” 중 어느 쪽을 더 존중해야 하는가라는 철학적 문제가 등장한다.

이 논쟁은 단순히 의학 문제가 아니라 근대적 인간관의 위기를 드러낸다. 근대 사회는 인간을 자율적이고 합리적인 존재로 상정해왔다. 그러나 치매는 그 전제를 무너뜨린다. 기억과 언어, 자기 동일성이 붕괴된 상태에서 “그 사람”은 누구인가? 가족은 누구를 돌보고 있는가? 과거의 인격인가, 현재의 생물학적 존재인가?

동아시아 문화와 비교해 보면 더욱 흥미롭다. 한국·일본·중국 문화권에서는 아직도 “먹이는 것” 자체가 효(孝)와 인간성의 핵심 행위로 여겨진다. 부모가 음식을 거부할 때 식사를 포기하는 것은 정서적으로 매우 큰 죄책감을 동반한다. 특히 한국에서는 “굶겨 죽였다”는 사회적 비난 가능성이 매우 크다. 반면 미국 호스피스 문화 일부에서는 “먹지 않는 것 자체가 자연스러운 죽음의 일부”라는 인식이 조금씩 확산되고 있다.

세진님처럼 실제 치매 돌봄 현실 속에 있는 사람에게 이 기사는 매우 무겁게 다가올 수 있다. 왜냐하면 이 문제는 추상적 철학이 아니라, 언젠가 가족이 실제로 결정해야 할 문제이기 때문이다. 특히 기사 속 가족들의 감정은 단순히 “죽게 할 것인가 살릴 것인가”가 아니다. 오히려 “우리가 사랑하는 사람을 괴롭게 하고 있는 것은 아닌가?”라는 질문이다.

흥미로운 것은 댓글들에서 반복적으로 등장하는 단어가 “peaceful(평화로운)”이라는 점이다. 많은 가족들이 마지막 순간에 원한 것은 생명 연장이 아니라 평온함이었다. 이는 현대 완화의료(palliative care)가 단순히 죽음을 앞당기는 것이 아니라, 죽음의 질을 고민하기 시작했음을 보여준다.

이 기사는 매우 미국적이면서도 동시에 보편적이다. 미국적이라는 것은 자기결정권과 의료윤리를 중심으로 논쟁이 전개된다는 점이다. 그러나 동시에 인간 보편의 문제를 다룬다. 인간은 어디까지 생명을 유지해야 하는가? 생물학적 생존과 인간다운 삶은 같은 것인가? 사랑은 끝까지 붙잡는 것인가, 아니면 놓아주는 것인가?

댓글들을 포함해 전체적으로 보면, 이 글은 단순한 “안락사 찬반 기사”가 아니다. 오히려 현대 문명이 죽음을 어떻게 상상하지 못하게 되었는가를 드러내는 기록에 가깝다. 과거에는 죽음이 집안의 자연스러운 일부였지만, 오늘날 죽음은 병원과 시설 속으로 들어갔고, 기술과 규정과 법률 속에서 관리된다. 이 기사와 댓글들은 그 과정 속에서 인간이 느끼는 깊은 혼란과 슬픔, 그리고 마지막 존엄에 대한 갈망을 매우 생생하게 보여준다.

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