Meet the end-of-life angels who prepare terminally ill people for the day they die

Maggie’s counsellors help those with terminal cancer cope with fears, worries and practical issues

Mandie Malcolm was just 26 when she found lump on my breast

by

Lisa Punt doesn’t cry at work. She has never cried at work, even though work, for Punt, is counselling people with terminal cancer and the friends and families of people with terminal cancer.

It must be about as difficult and heart-rending as work can be. Most of us would surely feel tearful when helping people face their own death. And not just their death, but all the concomitant details associated with it, big and small. Who will look after the children? What will happen to the house? What will my spouse do without me? And who’ll water the plants?

What is required of Punt, however, is calmness. “I don’t think I’ve ever been tearful within a consultation or within that interaction. And I think the reason for that is that we [the counsellors] bring to that therapeutic relationship an element of empathy, so we can see what they’re feeling, but at the same time we try very much to step outside actually feeling that emotion that they are experiencing.”

It’s a tough job, Punt says, but it is also a meaningful one. “We see the difference we make.”

Sometimes, though, a particular case will hit a counsellor harder than usual. In those cases, Punt tells me, that counsellor can talk about it with their colleagues, unpicking the feeling and carefully managing it. This process ultimately helps them support the patients and families who need their help. “We are there in a professional capacity,” says Punt, “and we are there to deliver formal, psychological, emotional support, which is part of our training.”

Punt, 51, is the centre head and a cancer support specialist at Maggie’s Cambridge. Maggie’s Centres are places where people with cancer – and their friends and families – can come for support and advice. The centres are beautifully built, designed to be an antidote to the strip-lit hurly-burly of a typical hospital. Within them, staff offer services such as yoga classes, financial advice and, most importantly, a friendly ear.

Maggie’s Cambridge, which is where Punt takes my call after delivering a counselling session, is in the grounds of Addenbrooke’s Hospital. The centre is temporarily housed in former accommodation for hospital staff, but Punt and her colleagues are working towards building a permanent home. “It’ll hopefully be very soon,” she says.

Diagnoses of terminal illness, says Punt, affect people very differently. “When someone walks through the door, we’re trying to work out, ‘What are their major concerns?’ When they’re faced with a terminal disease, they may very much have huge levels of anxiety, fear and worry. There are things like finances, or, ‘How is my partner going to manage when I’m not here if I’ve always sorted out the car insurance or the health insurance?’”

First, the warm, down-to-earth Punt helps her visitor work through their fears around death and dying, which must be no mean feat. The visitor might then be in a better position to address their more practical concerns.

People worry about mortgages, credit cards and life insurance. They wonder whether to retire on the grounds of ill-health and take their pension, or go off sick to ensure a death-in-service payout for their next of kin. They are concerned about funeral arrangements. They might be disinclined to write a will, feeling it to be an acceptance of defeat, but if they seek guidance on that they are offered it, often being given time with a solicitor, free of charge. “Once these things are done,” says Punt, “you have more cap-acity for life, even in the face of death.”

It is breadwinners who tend to worry the most about money issues, says Punt. They are more likely than not to be male, but it is the fact that they are the main earner, rather than their gender, that seems to be the strongest determinant of concern about a family’s financial stability.

Men are less ready to be emotionally voluble, says Punt, and are more likely to attend a support group if its stated purpose is something other than just talking. That purpose can be something as mundane as gardening or sharing bacon butties, but its effect can be to encourage conversation that is as valuable to men as it is to women.

Men and women alike wonder about their partner finding someone new, and it’s not uncommon to feel anxious about being replaced. You might call this the “I bet you’ll end up with Barbara” worry. As Punt puts it: “When children are involved, that’s a very emotive situation. Perhaps a mum is dying and there are two young children who are going to be left behind. Who is Dad going to meet and who’s going to be in the shoes of Mum? That can be a real concern.

“But then, on the other hand, there may be someone who actually gives permission to their partner to go out and find somebody and to not be lonely. It’s such an individual thing. I think the beauty of what we’re able to do, and the privilege we have, is that we can sit with somebody, whatever their fears and worries and concerns are about when they have died, and we can work with them.”

Punt tells me about a family she worked with fairly recently (we have changed some details for the sake of their privacy) where a married man with a son and daughter was told he had a year to live. It was his desperate wife who came to Maggie’s first, recalls Punt. “He was totally in denial and just carrying on as normal and she was trying to sort everything out.”

The husband eventually came for counselling, too. Punt and her colleagues then supported the family in starting a range of conversations. There were finances to discuss, plans for the garden and some decorating that the man had wanted to see through. There was their children’s education, at school and at home. “He wanted to show his son how to shave,” Punt says.

Where appropriate, the children were involved in these conversations. They were given time with an art therapist, who helped them articulate their emotions in a gentle setting. They were given the option of sitting with their father till the end, and they took it.

The man died at home, says Punt, surrounded by his family. “I think the last few hours were not desperately comfortable. But I think it was as good as it could be.”


What will happen to my family after I am gone?

Mandie Malcolm, 32

I had just turned 26 when I discovered a lump on my breast. Because a lump can be any of several things, I wasn’t too worried. What a shock I got when the doctor said it was cancer. Worse, it was secondary cancer: it had spread aggressively. I was told soon after the diagnosis that I probably had a couple of years to live.

It was petrifying. My mum was with me when I got the news, but the worst thing was breaking the news to friends and family. We’re very close, and they’re all supportive, but I knew it must be hard for them as well. I was always thinking about dying and leaving them behind. At the same time, there was so much I still wanted to do, like travelling the world.

Mum started using Maggie’s Edinburgh before I did. When I went myself, I was nervous on the way over, but from the moment I walked in they were all so friendly. Thanks to Maggie’s I’ve had loads of one-to-one counselling sessions and group sessions with other people going through the same as me. I go to yoga classes at the centre, and I’ve had loads of help with my finances. There are horrible, complicated forms to fill out in order to get benefits, but the adviser from Maggie’s helped me with the paperwork and took all the pressure off. My family gets a lot of support, too.

The diagnosis was six years ago and I’m still here. I have managed to get through everything I wanted to do, and now I’m just adding things to the list. After chemotherapy, I had hormone treatment, and because it was easier on my body I was able to do things like visiting Australia. I’ve run a marathon and I’ve been writing a column for my local paper, The Falkirk Herald. After my diagnosis, I thought that I’d never get to plan my own wedding, just my funeral, but I got married last year – it was a really special day.

A lot of people say, “I know what you’re going through”, but they don’t really. Through Maggie’s I’ve made a friend, Leslie, who’s in the exact same position as me, and it’s nice to be able to speak to somebody like her. One of the worst things is that you feel out of control of what’s happening to your body, and that time’s ticking away.

My outlook on life has changed hugely. Because I’ve spent so many days in bed and not feeling great, I really appreciate feeling good. I appreciate every day I’m given and I want to be surrounded by nice people, enjoying life rather than putting things off. Just going for a long walk with my dog is something that means a lot to me.

I’ve had a lot of different treatments and am probably starting to run out of them. Things have been better than the doctors thought, but I’m still realistic. Every extra birthday is special.

Complete Article HERE!

An ice cream man died of cancer.

A funeral procession of ice cream trucks honored ‘the king.’

Hassan Dervish, above, was lauded by his brother as a “really honest and hard-working person” for his decades of work as an ice-cream vendor in England.

By Timothy Bella

Savash Turkel was among a small group of family and friends who showed up on a dreary Friday morning in southeast London to bury his brother, Hassan Dervish, an ice cream man for more than 40 years who recently died of cancer.

But something was different about this December funeral procession, Turkel told The Washington Post: The jingles from ice cream trucks, driven by colleagues who knew and admired Dervish, flooded the streets in memory of a 62-year-old man hailed by loved ones as the “king of the ice cream.”

“The first one came and then there was another and then there was another,” said Turkel, 57. “All of a sudden, there were probably 10 ice cream trucks that followed him all the way to the cemetery. There were so many ice cream trucks for my brother.”

The moment with the 10 ice cream trucks was captured in an emotional video posted to Twitter that’s been viewed more than 10 million times as of Saturday afternoon.

“Just witnessed an ice cream man’s funeral and all the ice cream vans came and followed in solidarity,” tweeted Louisa Davies, the woman who posted the viral video. “I AM SOBBING.”

As observers pointed out on social media, the procession for Dervish follows in the tradition of ice cream vendors honoring fallen colleagues at their funerals in the United Kingdom. In February, 10 trucks gathered to celebrate the life of Pasquale Marucci, a popular, Italian-born ice cream man in Hampshire, England, according to the BBC. A similar funeral procession unfolded in July for John Lennie, who served generations of customers in Wimborne Minster, England.

After growing up in Cyprus with a tailor for a father and stay-at-home mother, Dervish emigrated to the U.K. in his early 20s, Turkel said. The brother noted how Dervish, one of four siblings in the family, had always loved ice cream and was curious about what life would be like to bring smiles to so many people.

“He was in the ice cream trade for all of his life,” he said.

After arriving around 1980, Dervish made a good life for himself in southeast London, Turkel said, and later married and had two children. His ice cream dreams had also become a reality, setting up an ice cream factory in the Lewisham neighborhood in the early 2000s.

From the time he started serving ice cream in the area, Dervish wanted to not just be a friendly face with sweet treats but also someone who gave back to his family and friends, his brother told The Post.

“He was passionate about the work he was doing. He was always helping out all his friends. He helped them all out,” Turkel said. “That’s why so many people loved him. My brother was a really honest and hard-working person.”

His health, however, took a turn for the worse around 2019, after he was diagnosed with a cancer that weakened him tremendously, Turkel said.

“The last two years, he was suffering,” his brother recalled. “He was taking all the treatments and everything.”

Dervish died on Nov. 12, his brother said, after fighting Stage 4 cancer that had “spread all throughout his body.”

“He couldn’t survive it, unfortunately,” Turkel told The Post.

When the funeral was scheduled more than a month later, coronavirus safety restrictions limited the number of people who could come for the Friday ceremony, the brother said.

That’s when the jingles from the ice cream trucks — Mr. Softee, Akan’s Soft Ice Cream, Mister Creamy — became the soundtrack for Dervish’s funeral.

Even though not as many people were at the funeral because of safety precautions, the presence of the ice cream vendor community at the procession left Turkel speechless.

“What can I say?” he said. “All of his friends, they came to pay their last respects to him.”

Videos of the funeral procession have gotten a huge reaction on social media, with many people admiring the sadness and beauty of the tribute. Davies, whose video has reached millions, tweeted that any money made off the video would be donated to a charity of Dervish’s family’s choice.

Ismail Mehmet, who said he was at Dervish’s funeral, captured a video of the ice cream trucks as they pulled into the cemetery.

“I’m amazed how much of an impact it has had to the area,” Mehmet wrote.

Turkel said that while his brother’s family and friends are emotionally exhausted and overwhelmed by the millions who’ve responded to the sweet procession, they are grateful that many more can see how Dervish was “a friend to everyone.”

“He touched so many hearts in so many ways,” Turkel said. “It makes me so proud of him.”

Complete Article HERE!

Apple now lets you pick someone to inherit your data when you die

by

A feature included in Apple’s latest iPhone update is something you probably don’t want to think about: who gets access to your phone if (or should we say when?) you die.

The change to Apple’s “Digital Legacy” feature is included in iOS 15.2. Now, you can designate contacts who will have access to your accounts when you pass away.

Those loved ones will have access to your photos, text messages, notes, apps and more. Certain things like payment information and passwords won’t be accessible, says Apple.

You can designate up to five loved ones as legacy contacts. You’ll be given an access code that you should put with the rest of your estate planning information. Eventually, one of your legacy contacts can present that access code and a death certificate to Apple to obtain access to your accounts.

Legacy contacts verified by the company will have access to the account for three years. At that time, the account will be permanently deleted, Apple says.

Here’s how to designate a legacy contact:

  1. Go to Settings on your iPhone and click your name at the top.
  2. Tap “Password & Security,” then “Legacy Contact.”
  3. Designate up to five contacts as legacy contacts.
  4. Print and save the access code. Your contacts will need this and your death certificate to gain access.

Apple has more information about how to request access to a deceased loved one’s account here.

Complete Article HERE!

‘sarco’ the assisted suicide pod is cleared for use in switzerland

sarco: a modern sarcophagus

by kat barandy

in 2019, australian euthanasia activist philip nitschke, founder of exit international, first unveiled his ‘sarco’ assisted suicide pod in venice. upon its first presentation to the world, people were already lined up to use it. taking shape as a high tech coffin, the pod allows the user to administer their own death in just minutes. with the press of a button inside the pod, the small space is flooded with nitrogen, causing oxygen levels to drop rapidly. the user will shortly feel ‘slightly euphoric,’ before falling into unconsciousness and peacefully passing away in a matter of minutes.

since its debut in venice, the philip nitschke’s machine has passed legal review and may be operated in switzerland.

a new way to die peacefully, now legal in switzerland

after passing legal review, the philip nitschke-designed pod offers a new method for assisted suicide in switzerland. the country is one of the few that has legalized physician-assisted suicide. it has one of the most progressive stances, allowing physician-assisted suicide without a minimum age requirement, diagnosis, or symptom state. because of this, people have traveled internationally for it — 221 people have traveled to the swiss clinic dignitas in 2018 alone (see more here). in 2020, around 1,300 people overall had died by assisted suicide in switzerland.

dr. nitschke, founder of exit international (see more here), champions the pod as a more peaceful alternative for those wishing to die. he explains in an interview with swiss journal SWI: ‘death takes place through hypoxia and hypocapnia, oxygen and carbon dioxide deprivation, respectively. there is no panic, no choking feeling.’ (see more)

revolutionizing the dying process

with his assisted suicide pod ‘sarco,’ philip nitschke seeks to ‘de-medicalize’ the dying process. he notes that currently, a doctor need to be involved to prescribe the patient with sodium pentobarbital and to confirm their mental capacity. the exit international founder aims to remove any kind of psychiatric review from the process and allow the individual to control the method themselves.

in lieu of a psychiatric review, the company is developing an artificial intelligence screening system to determine the person’s mental capacity. acknowledging the natural skepticism, especially from psychiatrists, nitschke notes the original concept, which involves an online test and an access code for the sarco.

Complete Article HERE!

As good as dead?

The ethical complexities of declaring someone dead

By Clarice Jacobson

It is often said that nothing is certain in life except death and taxes. And while it is certain we will all die, the definition of death is much murkier.

Dr. Trevor Bibler, assistant professor at Baylor College of Medicine and clinical ethics consultant at Houston Methodist Hospital, Claire Horner, J.D., M.A., assistant professor at Baylor College of Medicine and clinical ethics consultant at Baylor St. Luke’s Medical Center, and Dr. Mark Hobeika, assistant professor of surgery, Weill Cornell Medical College and transplant surgeon at Houston Methodist Hospital, are well versed in this topic. They have sat at the bedside with patients and families dealing with ethical issues surrounding end-of-life care.

They each have reviewed the literature and written on the topic (a sample of their work can be found below).

In the following Q&A they discuss common misconceptions and controversies related to death.

When is a patient in the United States declared dead?

Dr. Bibler: In the early 1980s, the Uniform Determination of Death Act defined death as either “(1) [the] irreversible cessation of circulatory and respiratory functions or (2) [the] irreversible cessation of all functions of the entire brain, including the brain stem.” This act was adopted by all 50 states in the United States in the following years, with some modifications.

Can someone be falsely declared dead? Has this happened?

Prof. Horner: There have always been rare stories throughout history of patients waking up in the morgue or at the funeral, having been alive but with vital signs that were not detected by physicians. However, with modern medicine and our ability to monitor heart rate, brain activity, respiration and other biological markers, declarations of death aren’t made without a good deal of certainty.

In a declaration of brain death, for example, a series of tests are performed at the time of suspected brain death, and in some cases are performed again a few hours later, to ensure that the patient’s body has been comprehensively evaluated for any signs of life. However, there is some variability around the world on which tests are used and what criteria are met.

Recent stories in the media about individuals who have been declared brain dead being maintained on machines for months afterward have not usually been about a person coming back “alive” but about a disagreement about whether all of the criteria were met for the brain death diagnosis in the first place, and whether cessation of brain function should properly be called death in the first place.

Brain death differs from traditional circulatory death; why does this matter?

Prof. Horner: With traditional circulatory death, it is obvious to observers that the person has died. The chest stops moving, rigor mortis sets in, and the patient’s body begins to decay because blood is no longer circulating.

In brain death, however, bodies are still maintained on machines that breathe for them and maintain circulation. This person’s chest is still moving, their body looks the same, and it can be hard for us to look at them and think of them as dead. The death of the brain means the end of the body as an integrated whole – without the ventilator, the lungs would not move and the lack of oxygen would stop the other organs from functioning. If bodies looked the same after brain death as they do after circulatory death, there would be much less controversy about it.

As technology continues to advance, do you think this will or should alter the definition of death?

Dr. Bibler: Yes. I see no reason to think our conceptions of death won’t evolve with changes in technology. Arguably, the entire reason professional medicine decided to distinguish the cardio-pulmonary from neurological conceptions of death is because of technological advances.

First, according to the popular story, there was a problem: medicine had advanced to the point where people with devastating neurological injuries could remain alive for days, months, or even years, with permanent respiratory support and medically administered nutrition and hydration. Their hearts were beating, but professionals were skeptical that continued physiological existence was appropriate for medicine. The 1968 the Harvard ad hoc committee on brain death explicitly said, that their “primary purpose is to define irreversible coma as a new criterion for death.” They did not say they were appealing to an old idea, but rather, a new one because of technological advances.

Second, the technologies involved in organ transplantation also played a role in these early definitions. Returning to the Harvard committee, they state they are motivated by the need to update “obsolete criteria for the definition of death” because the old cardiopulmonary criteria “can lead to controversy in obtaining organs for transplantation.” In other words, without a new conception of death, transplant surgeons may be accused of procuring organs from living patients rather than decedents.

Without either the technological advances in life-sustaining technologies, there may have never arisen a desire to create a new way of separating the living from the dead.

What are the main bioethical controversies surrounding the topic of legal death?

Dr. Bibler: One area is the definition of death. Some are confident that with agreed upon definitions of death there will be additional clarity on the ethical and professional aspects of medicine.

Another in clinical medicine is the scope of patient or family preferences when testing for and determining death. As mentioned above, declaring death by neurological criteria requires examination. Should family have the authority to say, “No. You can’t examine the patient to test whether or not they meet the criteria”? Should families (and often their religious communities) have the authority to refuse to accept the findings of the exam? If they refuse, then what? So, I believe medicine’s response to families who object to either the exam or the determination will be another area of continued controversy, even if the law provides a definition that many agree upon.

Complete Article HERE!

I’m a hospice nurse and this is what most people say before they die

By Tiffany Wallis

A hospice nurse has revealed what most people say before they die as she spoke out about how we end our lives.

Julie, a registered nurse from Los Angeles, California, has worked in a hospice for around five years.

The nurse has been using her expertise and knowledge to educate her 372,400 TikTok followers about death.

And her heart-warming comments as well as her love for her job have led to her videos going viral with people desperate to know about what to expect when they pass away.

She said: “I love educating patients and families about what to expect with hospices and what to expect with the specific disease they are dying from.

“I also really like giving the patient and family some comfort knowing we will be there to manage their symptoms.

“I have worked as a hospice nurse for about five years and before that, I was an ICU nurse for nine years so I’ve been doing this type of work for 14 years.”

Julie, who shares an insight into her job and answers burning questions everyone wants to know about hospices on her TikTok channel, said her aim is to educate others.

She recently posted a video about the normal things that happen to most people at the end of life — that look abnormal, but are actually really normal.

Julie explained that changes in breathing, changes in skin color, terminal secretions and fevers, just to name a few, are all normal stages.

She said: “The best part about my job is educating patients and families about death and dying as well as supporting them emotionally and physically.

“Also, helping them to understand what to expect is another part of my job as a hospice nurse.

“There is something most people say before they die and it’s usually ‘I love you’ or they call out to their mom or dad — who have usually already died.”

Julie said it’s difficult to explain what happens when people die — generally — as everyone is different.

But at the end of life, if someone is dying naturally in hospice care, most people show the same signs and symptoms.

This is called the actively dying phase.

Julie explained: “The symptoms of the actively dying phase include changes in consciousness (unconscious), changes in breathing, mottling and terminal secretions.”

“These are normal and NOT painful or uncomfortable.”

“Our bodies take care of ourselves at the end of life — the less we intervene, the better.”

There are also some common assumptions that people make about hospices but Julie explained that they’re not true.

She said it’s “not true” that everyone in hospices dies right away and it’s also not true that morphine makes people die faster.

Julie added: “There are some assumptions that people make. Another one that’s completely not true is that hospices kill people.”

Six months ago, Julie decided to share her knowledge of death and dying on social media — and said she couldn’t believe how quickly she went viral.

And the response has been incredible — she regularly shares informative videos answering people’s burning questions about death, dying and the happenings of hospices.

She said: “I knew I had a lot of interesting information about death and dying that most people don’t know about. I want to normalize death by educating people about it. I went home to visit my family, and my tween nieces were on TikTok making dance videos.”

“I later went on TikTok to see their dances. This gave me the idea of starting my own TikTok about death and dying, four days later I did it and it took off.”

“I’ve been doing it for six months now and have over 340,000 followers — it’s crazy!”

Complete Article HERE!

New ‘green’ burial option turns humans into fertiliser in just a month

Popular Youtube channel, Ask A Mortician, went behind the scenes to find out how one company is turning corpses into compost

By Emily Sleight

It’s a well-known fact that conventional burials and cremation can have high environmental costs.

‘Green burials’, which is where the body is put directly into the soil with just a shroud, could be seen as the ideal solution.

But with land at a premium in highly populated areas, green burial cemeteries aren’t always the first choice and that’s where ‘human composting’ comes in.

In her YouTube video, Caitlin Doughty (also known as Ask A Mortician) discusses the process, which is a practice many farmers have been doing with livestock for decades.

In 2015, the first donor bodies were composted in prototype studies at the department of forensic anthropology at Western Carolina University.

Now, the process is a lot more established. Caitlin’s friend, Kristina, is the founder of Recompose – a public-benefit corporation offering a natural alternative to burials. It is where Caitlin volunteers to explain what happens during composting.

In the video, Ask A Mortician places herself in a ‘vessel’ where she is covered with greenery with her favourite music playing in the background.

It is explained that families often bring clippings from their own garden, and are fascinated by the process itself, likening it to a ‘melding of science and spirituality’.

The composting ‘ritual’ involves laying wood chips and plants on top of the body with the belief that the body is ‘taking a new place in the carbon cycle.’

Next, the body is loaded into the vessels where microbes break it down in about a month.

When talking about the vessels themselves, Caitlin describes them as looking “kind of like a Japanese capsule hotel.”

She added: ”You’re actually probably pretty warm and cosy, comfortable, and with plenty of air.

“We have these microbes on us right now, but the only thing that makes them work on your body is if you’re dead.”

In a nutshell, the body is covered with wood chips and straw for 30 days to really get the microbes working, and eventually, you become soil.

Don’t worry though, if there are still a few bones after the 30 day period, they will be placed into a cremator.

The soil is then allowed to cure before it can be used in gardens, forests or conservation lands.

Of course, the soil is tested to ensure it meets the requirements, and families can take some of the soil home and donate the rest if they’d prefer.

And if you’re wondering how much an average person makes of soil, it’s around two wheelbarrows worth.

In the video, Caitlin even visits a compost heap of 28 people. The impressive mound was eventually donated to Bells Mountain conservation forest.

Washington has recently become the first US state to legalise human composting and UK funeral directors are also seeing a surge in requests for green burials and sustainable alternatives to burial and cremation.

Complete Article HERE!