This nurse has cared for more than 100 dying patients – what they taught her about having a ‘happy death’

Mariam Jumaat once believed good nursing meant helping patients get better and did not want to work with dying patients. Now, the home palliative care nurse helps them spend their final days comfortably at home, surrounded by the people they love.

Nursing for Mariam Jumaat used to be about helping patients get better. Now, she wants to help them die well. (Photo: Home Nursing Foundation)

This audio is generated by an AI tool.

At 40, Mariam Jumaat has confronted death more times than most do in a lifetime.

A home nurse for end-of-life patients, she has walked the final mile alongside more than 100 patients with incurable conditions such as end-stage dementia, stroke, heart disease and cancer. She visits them at home, eases their symptoms, and stands beside them at death’s door.

It’s an intense and sombre job. Yet, when asked what dying looks like, her first memory of it isn’t one of despair.

Mariam fondly recalls a “whiskey uncle” who had terminal cancer. He was her first patient in this role and also the first she lost.

She remembers that first home visit to his three-room flat where three to four generations of his family had gathered – babies, teenagers, adults and seniors. Everyone was praying. What struck Mariam in that moment was the love and warmth within the family.

The patient could not eat, had little urine output, was breathless and in pain – clinical signs that the end was near. “When my mentor told them that the clinical signs were not looking good, the whole family cried, even the big and strong men with tattoos,” she recalled.

The family asked Mariam what more they could do. Mariam knew that there was not much more, so she asked about the patient’s favourite food. He liked whiskey. “Give it to him,” she said.

“The most peaceful deaths I have seen usually involve happy people with loved ones around them,” said Mariam. (Photo: Home Nursing Foundation)

“They dabbed it on his tongue, and they shared a drink together as a family. Shortly after, he became unconscious and passed on without any morphine,” Mariam told CNA Women.

His family later told her it was a “happy death”.

“I DIDN’T WANT TO WORK WITH DYING PATIENTS”

Mariam’s role is a relatively new one. It is part of Home Nursing Foundation’s (HNF) Integrated Home Health programme launched in October 2023 to enable patients with life-limiting illnesses to spend their final months at home with the support of a team of nurses, doctors and medical social workers.

When Mariam was first offered the job in 2022, she flatly declined.

Then, most of her patients had falls or accidents. As an HNF nurse, her job was to change wound dressings, catheters and feeding tubes during home visits. Most patients got better.

“I didn’t want to work with dying patients,” she said. “As a nurse, I always wanted my patients to get better. If they didn’t get better, I didn’t think I’d done a good job.”

It took a year for Mariam to change her mind. Over this period, she watched a small percentage of her patients who could not get better transfer to hospices, unable to spend their last days at home with their loved ones. This saddened her.

Mariam’s role is to support patients who want to spend their final months in the comfort of their own homes, surrounded by the people and things they love. (Photo: Home Nursing Foundation)

Many patients do not want to die in hospital, Mariam reflected. Hospitals also limit the number of visitors at any one time, and it can be harder for young children to visit, she added.

“As a nurse, I feel that home is the best place to pass on – the familiar smells, their own bed, and loved ones around them,” she said.

In 2023, Mariam accepted the role. Her very first encounter with the “whiskey uncle” gave her a new perspective – death can be peaceful, calm and meaningful.

Today, nearly 400 patients are enrolled in the programme, which is for those with a life expectancy estimated at six months to a year, though some patients live beyond this.

Each day, Mariam travels to four to five different homes. During each visit, she does a top-to-toe general check and monitors vital signs such as blood pressure, oxygen levels, temperature and blood sugar levels.

Most patients require monthly visits. But those with symptoms such as vomiting, breathlessness and pain might benefit from weekly or more frequent visits.

One of the most common issues is constipation. “It is like a clog. If [stool] doesn’t come out, the patient will vomit,” Mariam explained. In such cases, she might administer suppositories and laxatives.

WHEN FAMILIES STRUGGLE TO LET GO

Mariam said that in the final critical moments, some families may not be able to let go.

“Even when the patient is within hours or minutes of death, instead of managing the symptoms or gathering family members, they might be frantically calling private doctors to try to save the patient,” she said.

“When I first joined nursing, I thought it was about changing diapers and administering intravenous drips. Now, my goal is to make (end-of-life) patients comfortable and pain-free in their homes,” says Mariam. (Photo: Home Nursing Foundation)

Mariam has also witnessed painful partings. She recalls arriving at an elderly patient’s house minutes after she died.

“I checked her blood pressure and oxygen (level). There were no readings at all. As a nurse, I cannot certify death so I suggested that the son call the doctor,” she recalled.

“Just then, the patient’s daughter arrived with soup for her mother and greeted me chirpily. When she realised her mother was not breathing, she burst into tears.

“She kept insisting her mother was sleeping and called to her for a good five minutes. Her brother started crying too. They knelt in front of their mother, cupped her face and began shouting for her,” Mariam shared.

Even when Mariam is not at the death scene, the family sometimes video-calls her, crying inconsolably, to check if the patient has died.

Recalling one such video call, she said: “I couldn’t see properly from the video call. But I knew there was no blood pressure, and I could see from the patient’s face that he had passed on. I didn’t know if the family was in denial or they really didn’t know he was dead. It was heartbreaking.”

WHAT DEATH HAS TAUGHT HER

The most peaceful deaths are those in which the patient and family have made peace, said Mariam.

Mariam visits four to five homes each day, from affluent homes to one-room rental flats. (Photo: Home Nursing Foundation)

She fondly recalled a “Peranakan Ah Ma” who showed her a beautiful yellow and green kebaya she wanted to wear for her funeral. She had planned the beaded shoes, earrings, necklace, bracelet and rings she wanted to wear, and on which fingers.

“Everything moved me, from the decisions she made about her clothes to how she wanted to spend her final days. She said, ‘I’m not scared to die. My husband is waiting for me. I want to be cantik (beautiful in Malay) for him,’” Mariam recalled.

The nurse added that her deepest lessons come from personal loss. The youngest of five children, Mariam’s mother died of breast cancer when she was 10.

“At that age, I only knew about fever and stomach pain. I didn’t know what cancer was. When I was feeding her, I didn’t know that she could not eat. I thought we were just playing. When I was brushing her hair and it fell off, I thought we were playing doll.

“When she passed away, everybody told me she’s not coming back, but I still didn’t understand. I thought, she was here, she was sleeping,” Mariam said.

But the next day, when the loss finally sank in, Mariam came down with a fever that lasted for two weeks.

Mariam said journeying with her eldest sister through her final days inspired her to care for end-of-life patients with more empathy. (Photo: Home Nursing Foundation)

Many years later, in her 20s, Mariam endured the pain for a second time when her beloved eldest sister was diagnosed with breast cancer.

“She was 10 years older than me, and after my mother died, she quit her studies to take care of me and my siblings, and work. She was my idol,” said Mariam, tears welling in her eyes.

“When she was ill, I took care of her, bathed her, gave her medication and did her wound dressing. As the tumour grows, when you remove the dressing, blood will shoot out,” she added.

After a two-year battle, the cancer spread to her sister’s brain, and she died, said Mariam, tears now streaming down her face.

For a moment, Mariam could not speak. “That was why I initially rejected being in this team. I was scared I’d be emotional thinking of this,” she said.

“It is also why I want to care for end-of-life patients now,” she added, after another pause.

“Life is very fragile and unpredictable,” she said. Perhaps, the best way to avoid regrets is to live to the fullest and appreciate the little moments, she reflected.

“We're going to die one day, right? Instead of avoiding it, we should just embrace it like the whiskey uncle and kebaya aunty.”

CNA Women is a section on CNA Lifestyle that seeks to inform, empower and inspire the modern woman. If you have women-related news, issues and ideas to share with us, email CNAWomen [at] mediacorp.com.sg .

A single handpicked story that we think you shouldn't miss. Just one a day.

玛丽亚姆·朱玛特曾认为，好的护理意味着帮助病人康复，她并不想照顾临终病人。如今，这位居家临终关怀护士致力于帮助病人在家中舒适地度过最后的时光，让他们在亲人的陪伴下安详离世。

对玛丽亚姆·朱玛特来说，护理工作过去是帮助病人康复。现在，她希望帮助他们安详地离世。（图片：居家护理基金会）

这段音频由人工智能工具生成。

40岁的玛丽亚姆·朱玛特面对死亡的次数比大多数人一生中面对的次数还要多。

作为一名临终关怀护士，她陪伴超过100位身患绝症（如晚期痴呆症、中风、心脏病和癌症）的患者走完了人生的最后一程。她上门探访他们，缓解他们的症状，并在他们生命的尽头陪伴在他们身边。

这是一份既紧张又沉重的工作。然而，当被问及死亡是什么样子时，她对死亡的第一印象并非绝望。

玛丽亚姆深情地回忆起一位身患绝症的“威士忌叔叔”。他是她担任这一角色时的第一位病人，也是她失去的第一位病人。

她记得第一次去他家拜访的情景，他家是三室公寓，三四代人都聚在那里——婴儿、青少年、成年人和老人。每个人都在祈祷。那一刻，最让玛丽亚姆感动的是这个家庭的爱与温暖。

病人无法进食，尿量极少，呼吸困难，疼痛难忍——这些都是临终前的临床症状。“当我的导师告诉他们病情不妙时，全家人都哭了，就连那些身材魁梧、浑身纹身的男人们也哭了，”她回忆道。

家属问玛丽亚姆他们还能做些什么。玛丽亚姆知道能做的已经不多了，于是她问起病人最喜欢吃什么。他喜欢威士忌。“那就给他喝吧。”她说。

“我见过最安详的离世，通常都是生前幸福，亲人陪伴在侧，”玛丽亚姆说。（图片：居家护理基金会）

“他们把药涂在他的舌头上，然后全家人一起喝了一杯。不久之后，他就失去了意识，在没有使用吗啡的情况下去世了，”玛丽亚姆告诉CNA Women。

他的家人后来告诉她，这是一场“安详的死亡”。

“我不想和临终病人一起工作”

Mariam 的职位相对较新。它是家庭护理基金会 (HNF) 于 2023 年 10 月启动的综合家庭健康计划的一部分，旨在使患有危及生命的疾病的患者能够在护士、医生和医务社工团队的支持下在家中度过生命的最后几个月。

2022年，当玛丽亚姆第一次被提供这份工作时，她断然拒绝了。

后来，她的大多数病人都发生了跌倒或意外事故。作为一名家庭护理护士，她的工作是在家访期间更换伤口敷料、导尿管和喂食管。大多数病人后来都康复了。

“我不想和临终病人一起工作，”她说。“作为一名护士，我总是希望我的病人能够康复。如果他们没有康复，我就觉得自己没有尽到责任。”

玛丽亚姆花了整整一年时间才改变主意。在这段时间里，她眼睁睁地看着一小部分病情无法好转的病人被转到临终关怀中心，无法在家中与亲人共度最后的时光。这让她感到非常难过。

玛丽亚姆的职责是支持那些希望在自己舒适的家中，在所爱之人陪伴下度过生命最后几个月的患者。（图片：居家护理基金会）

玛丽亚姆反思道，很多病人都不想死在医院里。她补充说，医院也限制探视人数，而且年幼的孩子探视起来也更不方便。

“作为一名护士，我觉得家是最好的离世之地——熟悉的味道、自己的床，以及亲人的陪伴，”她说。

2023年，玛丽亚姆接受了这个角色。她与这位“威士忌大叔”的初次相遇，让她对死亡有了新的感悟——死亡也可以是平静、安详且有意义的。

目前，已有近 400 名患者参加了该计划，这些患者预期寿命估计为 6 个月到 1 年，尽管有些患者的寿命超过了这个时间。

玛丽亚姆每天要去四到五个不同的家庭。每次去的时候，她都会对病人进行从头到脚的全面检查，并监测血压、血氧饱和度、体温和血糖水平等生命体征。

大多数患者需要每月就诊一次。但那些出现呕吐、呼吸困难和疼痛等症状的患者可能需要每周或更频繁的就诊。

便秘是最常见的问题之一。“就像肠道堵塞一样。如果粪便排不出来，病人就会呕吐，”玛丽亚姆解释说。在这种情况下，她可能会使用栓剂和泻药。

当家庭难以放手时

玛丽亚姆说，在最后的危急时刻，有些家庭可能无法放手。

“即使病人只剩下几小时或几分钟的生命，他们也不会去控制症状或召集家人，而是疯狂地打电话给私人医生，试图挽救病人的生命，”她说。

“我刚入行做护士的时候，以为工作就是换尿布和输液。现在，我的目标是让临终病人在家中舒适无痛地度过余生，”玛丽亚姆说道。（图片：居家护理基金会）

玛丽亚姆也曾目睹过令人心碎的离别。她回忆说，有一次她赶到一位老病人家时，她距离病人去世只过了几分钟。

“我给她量了血压和血氧饱和度，结果都显示没有读数。作为一名护士，我不能宣布死亡，所以我建议她儿子打电话给医生，”她回忆道。

“就在这时，病人的女儿端着汤来了，她兴高采烈地跟我打招呼。当她意识到母亲已经停止呼吸时，她顿时嚎啕大哭起来。”

“她一直坚持说妈妈睡着了，喊了足足五分钟。她哥哥也开始哭了起来。他们跪在妈妈面前，捧着她的脸，大声呼喊着她的名字，”玛丽亚姆说道。

即使玛丽亚姆不在死亡现场，家属有时也会哭着给她打视频电话，询问病人是否已经去世。

她回忆起其中一次视频通话时说：“视频通话里我看不清楚，但我知道他没有血压，从他的脸上也能看出他已经去世了。我不知道他的家人是不愿接受现实，还是真的不知道他已经死了。这太令人心碎了。”

死亡教会了她什么

玛丽亚姆说，最安详的死亡是病人与家人达成和解的死亡。

玛丽亚姆每天走访四到五户人家，从富裕人家到单间出租房都有。（图片：家庭护理基金会）

她深情地回忆起一位“土生华人阿嬷”，这位阿嬷给她看了一件漂亮的黄绿色娘惹服，说是她想在葬礼上穿的。她还计划好了要戴的串珠鞋、耳环、项链、手镯和戒指，甚至连戴在哪根手指上都计划好了。

“她的一切都让我感动，从她选择穿什么衣服到她想如何度过最后的日子。她说，‘我不怕死。我的丈夫在等我。我想在他面前保持美丽（马来语为cantik），’”玛丽亚姆回忆道。

这位护士补充说，她最深刻的感悟都来自于个人的失去。玛丽亚姆是家中五个孩子中最小的，她的母亲在她10岁时因乳腺癌去世。

“那时候，我只知道发烧和肚子疼。我不知道癌症是什么。我喂她吃饭的时候，不知道她吃不下东西。我以为我们只是在玩。我给她梳头，头发掉了，我还以为我们在玩娃娃。”

“她去世的时候，所有人都告诉我她不会回来了，但我还是不明白。我当时想，她还在这里，她只是睡着了，”玛丽亚姆说。

但第二天，当玛丽亚姆终于意识到失去亲人的痛苦时，她开始发烧，持续了两周。

玛丽亚姆说，陪伴姐姐走完人生最后一段路程，让她更加感同身受地关爱临终病人。（图片：家庭护理基金会）

多年后，20多岁的玛丽亚姆再次承受了这种痛苦，她挚爱的大姐被诊断出患有乳腺癌。

“她比我大10岁，我母亲去世后，她辍学照顾我和我的兄弟姐妹，还要工作。她是我的偶像，”玛丽亚姆说着，眼眶里噙满了泪水。

“她生病的时候，我照顾她，给她洗澡，喂药，帮她换药。随着肿瘤增大，每次揭开敷料，都会有血喷出来，”她补充道。

玛丽亚姆说着说着，泪水顺着脸颊流了下来，她妹妹与癌症抗争了两年后，癌细胞扩散到了她的大脑，最终去世了。

玛丽亚姆一时说不出话来。“这就是我最初拒绝加入这个团队的原因。我害怕想到这些我会情绪失控，”她说。

“这也是为什么我现在想照顾临终病人的原因，”她停顿了一下后补充道。

“生命非常脆弱，变幻莫测，”她说。她沉思道，或许避免遗憾的最好方法就是尽情享受生活，珍惜每一个细微的瞬间。

“我们终究会死，对吧？与其逃避，不如像那位爱喝威士忌的大叔和穿卡巴雅的大婶一样坦然接受。”

CNA Women是CNA Lifestyle旗下的一个版块，旨在为现代女性提供信息、赋能和灵感。如果您有与女性相关的新闻、议题或想法想要与我们分享，请发送电子邮件至CNAWomen[at]mediacorp.com.sg。

每天一篇，我们精心挑选一篇您不容错过的精彩故事。