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How we remember the dead by their digital afterlives

— A broad-ranging analysis asks whether we can achieve a kind of immortality by documenting our lives and deaths online.


Through virtual reality, people can interact with avatars of loved ones.

By Margaret Gibson

The Digital Departed: How We Face Death, Commemorate Life, and Chase Virtual Immortality Timothy Recuber NYU Press (2023)

Many of us will have turned to the Internet to grieve and remember the dead — by posting messages on the Facebook walls of departed friends, for instance. Yet, we should give more thought to how the dead and dying themselves exert agency over their online presence, argues US sociologist Timothy Recuber in The Digital Departed.

In his expansive scholarly analysis, Recuber examines more than 2,000 digital texts, from blog posts by those who are terminally ill to online suicide notes and pre-prepared messages designed to be e-mailed to loved ones after someone has died. As he notes, “the digital data in this book are sad, to be sure, and they have often brought me to tears as I collected and analyzed them”. Yet, they are well worth delving into.

Recuber brings a fresh lens to studies of death culture by focusing on the feelings and intentions of the people who are dying, rather than those of the mourners. For example, he finds that a person’s sense of self can be altered through blogging about their illness. Writing freely helps people to come to terms with their deaths by making their suffering “legible and understandable”. Reflections on family and friends also reveal a sense of self-transformation. Indeed, many bloggers “attested to the positive value of the experience of a terminal illness, for the way it brought them closer to loved ones and especially for the wisdom it generated.”

This theme of self-transformation, which Recuber refers to as ‘digital reenchantment’, continues throughout the book. This terminology relates to the work of German sociologist Max Weber, who, at the turn of the twentieth century, argued that humans’ increasing ability to understand the world through science was robbing life of magic and mystery — a process he called disenchantment. When the dead seem to be resurrected through digital media, Recuber argues, they regain that mystery.

Recuber explores how X (formerly Twitter) hashtags can act as a form of collective online rememberance. He focuses on photos and stories shared in posts that use two hashtags, sparked by violent deaths of Black people in the United States: #IfIDieInPoliceCustody, in response to Sandra Bland’s death in prison in Waller County, Texas, in July 2015, and #IfTheyGunnedMeDown, which remembers Michael Brown, who was shot by police in Ferguson, Missouri, in August 2014. The “thousands of individual micro-narratives” posted in these threads, Recuber writes, amount to a “collectively composed story affirming the value of all Black lives and legacies”. They are memorials for the lives that have already been lost and for those that might be in future.

The author considers the perspectives of the individuals whose deaths inspired each hashtag. For example, 28-year-old Bland was imprisoned after being arrested for a driving offence. Friends and family questioned the police’s assertion that Bland had committed suicide, and #IfIDieInPoliceCustody was tweeted 16,500 times in its first week, as the result of the online attention that the case gained. What would Bland and Brown think of this coverage, Recuber asks? They might have been proud of this legacy, but they had no say in it. In a sense they are “doubly victimized”, he suggests, losing not only their lives but also “the agency to define themselves and the ways they’d like to be remembered”.

In the book’s most intriguing section, Recuber turns to transhumanism — the idea that, some time in the future, advanced technologies yet to be imagined could enable digital records of the human mind to be uploaded to the Internet. A person’s consciousness could then ‘live’ online forever.

Recuber interviews four men who lead companies that are helping people to preserve digital aspects of themselves or that are otherwise concerned with transhumanism. Bruce Duncan runs the Lifenaut project, part of the non-profit Terasem Movement Foundation, based in Bristol, Vermont, which allows users to create a digital archive of their reflections, photos and genetic code for future researchers to study. Eric Klien is the president and founder of the Lifeboat Foundation, a non-governmental organization based in Reno, Nevada, which is devoted to overcoming catastrophic and existential risks to humans, including from misuse of technologies. Robert McIntyre is the chief executive of Nectome, based in San Francisco, California, which works on techniques for embalming brains for future information retrieval. And Randal Koene is the chief scientific officer of the Carboncopies Foundation, based in San Francisco, a research organization that works on whole-brain emulation — a “neuroprosthetic system that is able to serve the same function as the brain”.

A man works on a laptop whose screen is covered in rectangular icons.
Artificial-intelligence firms are working to develop digital replicas of the dead.

According to Recuber, none could give a clear explanation for how mind uploading would work. That’s not surprising — neuroscientists are divided on whether it is even possible. But each interviewee had faith that it would become a possibility. Koene wonders whether uploaded minds might find a home in some kind of robotic body. Duncan and McIntyre imagine a disembodied human consciousness able to travel through space and visit other planets or stars.

Yet, Recuber was troubled to find that these men said very little about the social and ethical questions raised by mind uploading. Building a ‘superior’ type of human has a “whiff of eugenics” about it, he writes. The whole process would be expensive, perhaps creating a future division in social classes, with only the rich able to afford it. Duncan and Koene pointed out that this might not be true in the future — the prices of technologies, such as smartphones and data-storage units, tend to fall quite quickly.

Recuber does find people raising ethical concerns on the online discussion platform Reddit, where he examined more than 900 posts about transhumanism. One user was appalled that “the richest and most comfortable people in history spent their money and resources trying to live forever on the backs of their descendants”. But philosophical debates are much more popular, such as whether the uploaded disembodied mind would be equivalent to or superior to one’s own.

Transhumanism, Recuber notes, is working towards a very different type of online legacy from those discussed elsewhere in his book; it is focused not on strengthening ties with humanity but on cutting them. This idea of moving beyond mortal biological limits — gaining immortality through science and technology — is an old dream in a new guise. For religious people, the immortal substance is the soul; for transhumanists, it is the mind.

It is in these critiques of transhumanism that Recuber is at his sociological best. His astute comments exemplify a second theme of The Digital Departed — that inequalities that persist in the physical world are mirrored in peoples’ online lives. He cautions the public about narratives that promote technological progress as necessarily good. Despite the rhetoric of liberation through technological progress, we all must remain wary. There are no guarantees that mind uploading will be properly regulated, or benefit those in need. Mortal problems such as food and water shortages and human violence, as well as the lack of housing and health care, have greater priority in my view.

It is a shame, however, that the book ignores feminist perspectives on transhumanism. These contend that ideas of the soul or mind in philosophy have historically operated as a gender hierarchy — men and the masculine are considered primordial, whereas women and the feminine are treated as secondary, linked to the body and the mortal realm. Transhumanism will not benefit women or gender-diverse people unless it engages with its own inherited systems of thought and narrative.

Nonetheless, The Digital Departed is a valuable book that presents many moving stories about the way that our digital life foreshadows our biological departure. The author’s engagement with classical and modern sociological theory will be appreciated by scholars and appeal to readers of all stripes.

Complete Article ↪HERE↩!

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End-Of-Life Nutritional Support

— Improving the remaining quality of life is at the heart of proper nutrition in order to support energy and stamina levels

The goal of nutritional support for individuals in palliative care is to improve the remaining quality of life.

By Barbra Williams Cosentino

She’s almost 70 and has struggled to control high cholesterol levels and pre-diabetes for much of her adult life, resisting tempting treats like strawberry shortcake and French fries. But now her appetite is gone, and stage four ovarian cancer is gnawing away at her insides.

She only wants ice cream, preferably chocolate with a cascade of caramel sauce. Her daughter is adamant she shouldn’t have it. “Mom, you know it’s bad for you,” she says. But her mother is dying, and the doctor says it’s essential for her to eat.

Chemotherapy and radiation treatments, particularly to the mouth and other areas involved in the digestive process, can cause tissue injury and irritation and affect eating ability.

The goal of nutritional support for individuals in palliative care (when potentially curative treatments have been deemed unsuccessful and have been stopped) is to improve the remaining quality of life. Proper nutrition impacts energy and stamina levels.

According to Courtney Pelitera RD, a registered dietician with Top Nutrition Coaching, cachexia, wasting of the body and loss of muscle and fat are frequently seen towards the end of life. This can lead to impaired mobility, unplanned hospitalizations and increased symptoms.

Chemotherapy and radiation treatments, particularly to the mouth and other areas involved in the digestive process, can cause tissue injury and irritation and affect eating ability. Because the gut is not functioning normally and people may be less physically active, several symptoms are often seen in people undergoing cancer treatment, living with cancer or at the end of life, says Pelitera. 

These changes impact appetite and ability to tolerate certain types of foods or liquids and may include:

  • Appetite loss, anorexia
  • Taste and smell changes
  • Diarrhea, constipation, nausea, indigestion and heartburn
  • Inflammation of oral mucosa and mouth sores, dry mouth
  • Difficulty chewing or swallowing (dysphagia), choking episodes

The Emotional Aspects of Food Refusal and Appetite Loss

According to Pelitera, “Sharing a meal is one of the most common ways to socialize. In most cultures, people use food to celebrate milestones and special occasions. It is also sometimes used for comfort and to cheer people up. When someone is ill, visitors will often bring casseroles or sweets.”

“Because hunger cues are gone, people at the end of life are not uncomfortable if they are not eating or drinking.”

However, it can be very upsetting when someone you care about is uninterested in eating or refusing previously enjoyed foods. It is painful to see someone lose weight and become weaker, even though it is the disease process and not only the decreased food intake that is causing it.

The inclination to push food and prepare elaborate meals to try and entice the person to eat is counter-productive. The ill person may feel guilty, as if they are letting you down, and might try to eat even though it can cause them physical discomfort. As Pelitera explains, “Because hunger cues are gone, people at the end of life are not uncomfortable if they are not eating or drinking.”

Complete Article ↪HERE↩!

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‘I attended my own send-off’

— How living funerals are changing the way we deal with death

I watched my own dad die when I was 25, and it made me realise how awkward people get around the subject. I wanted to see if living funerals – both those for the terminally ill and those who are not – are opening up how we talk about death.

By Megan Harwood-Baynes

I am lying in a coffin, the lid gently placed on top. A warm light filters through the woven fibres, as a meditation chant reverberates around the room.

“Welcome to your funeral,” death doula Emily Cross said, moments earlier.

A photograph of me and my husband sits between two flickering candles, with confetti from our wedding scattered in front of the frame. I wriggle, trying to relax but coffins, it turns out, aren’t designed for comfort.

Meditating on my own death isn’t how I spend most Tuesday evenings. But like many who seek out Emily’s services, I am intrigued by the idea of confronting my own mortality.

“Everyone comes with a different reason,” Emily, 35, says when I ask her about the kind of people who usually attend. Sometimes they are dying, sometimes they are just curious about the service.

I watched my own dad die when I was 25, and it made me realise how awkward people get around the subject. I wanted to see if living funerals – both those for the terminally ill and those who are not – are opening up how we talk about death.

Dad’s funeral was beautiful and cathartic – 500 people packed out a church to celebrate him. I remember wishing he had been there to see how deeply loved he was.

Emily’s living funeral is a more solitary affair, and you don’t need to be dying to do it. To start, she plays haunting music and asks participants to look at a photo of themselves, imagining they are dead. Then they are asked to visualise their bodies shutting down before being “brought back to life” in a coffin.

I only go through part of the ceremony but it’s enough to bring up a raft of emotions. Lying inside the cosy coffin, I remember how shocked I felt seeing Dad in his – that such a larger-than-life figure could fit into such a small space. It’s a relief when the lid is lifted, the room comes back into view and Emily helps me stand.

Death doula Emily Cross
Death doula Emily Cross

Earlier this year, Kris Hallenga – one of the founders of breast cancer charity CoppaFeel who shares her own cancer journey with her 145,000 Instagram followers – threw herself, what she called, a FUNeral.

Kris sent out invitations shaped like coffins. Inside each was a test tube of tequila and a letter explaining her intention.

Guests were invited to sign a cardboard replica of her coffin and childhood footage was projected around Truro Cathedral in Cornwall. Dawn French did the eulogy in character as the Vicar of Dibley, while Kris gave a speech and sparkled in a glittery jumpsuit.

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For Robert Hale, he decided to hold his own living funeral when he found out he had just months to live. When the 33-year-old aerospace engineer was told by doctors that his leukaemia was terminal, he decided to organise a “happy send-off commemorating my life”.

“The doctors were honest,” he said, his dogs curled up on the sofa next to him. “They said straight from the start, I didn’t have a good prognosis.”

With the support of his parents, he arranged to hold his living funeral at a farm park near his home in Gloucestershire.

“I used to go there as a child for the parties and thought it would be a good place,” he said.

Rob Hale
Rob Hale

He was surprised when hundreds of friends and family turned up on the day. At one point, he snuck off to take on what he calls the “death slide” – despite being fitted with a catheter – only to be greeted by 50 people cheering him on at the bottom of the steep drop.

“It was overwhelming,” he said. “I had friends that I hadn’t seen for years. I’d always told myself that I would catch up with them next year, because I thought I had plenty of time.”

Now, he says he can “go without leaving anything unsaid”.

Rob didn’t flinch when he talked about his own death and shared candid accounts of his final year on Instagram. He said he wanted to be honest about what was ahead of him.

“The closer I get to the end, the more important those things become because other people are facing it,” he said.

Rob died three weeks after we spoke – but his parents, Caron and Nigel, told me they wanted his story to be told.

Caron and Nigel Hale
Caron and Nigel Hale

End-of-life ceremonies are nothing new – in some cultures, they have been around for hundreds, or even thousands, of years. But their exact roots are difficult to track.

Before a member’s death, the Native American tribe the Lakota Sioux of South Dakota repair relationships, make amends, and distribute family heirlooms. A similar tradition became popular in Japan in the 1990s as the older generation sought to remove the financial burden of funerals from their children.

In 2019, the Hyowon Healing Centre in South Korea began offering free-living funerals to the public as a way of tackling high suicide rates in the country, which in 2016, was almost double the global average.

Participants, who were usually completely healthy, would undergo a meditation, often while in a coffin or under a shroud, and come face to face with their own mortality and the realities of death.

Death doula Emily says she was inspired by these Eastern practices. Situated in a Dorset village, her Steady Waves Centre is something of an anomaly on this quiet, rural high street. Originally from the US, she says she suspects residents sometimes wonder “what that weird American girl is up to”.

“There’s a [fishing] shop next door, and people just walk in here by accident thinking it’s a tackle shop,” she says, laughing. “I’ll say something like, this isn’t a tackle shop, but do you want to come lay in a coffin?”

So far, no one has taken her up on that offer, she says.

Rachel Bass, a Pagan celebrant, has planned plenty of funerals – including her own.

“I was born with a serious heart condition, so I’ve always been aware of my own mortality,” the 47-year-old says.

Rachel has had several major surgeries for her condition, tetralogy of Fallot, and doctors have always been very clear with her that she is unlikely to “make it to old age”. During the COVID lockdown, her health declined dramatically and she made contact with a hospice to begin planning her end of life – but emergency heart surgery bought her some more time.

But it made her realise if she organised – and attended – her own living funeral, there would be less of a burden on her family.

Rachel Bass
Rachel Bass

“In the last few years, other problems have arisen,” she says, referring to scarring she has suffered on her liver. “It’s made me more conscious of [death] because I’m only going to go one way.”

Rachel also lost her mum at the age of 24. “For me, it is about accepting that I will not make old bones,” she says.

While we talk, Rachel lightens the mood with laughter, but she does admit that the idea of leaving her 21-year-old son behind makes her emotional. “All I care about is my son, who still relies on me,” she says.

While she doesn’t feel the need to set a date for her living funeral, she has started to plan it. It will be held in the town where she grew up and will feature karaoke and a 1970s-style buffet.

“I’d like to give away my jewellery and certain books at that point too, so I know everything has gone to the right people,” she says.

Jane Murray, who manages bereavement support at the Marie Curie hospice in the West Midlands, tells me living funerals are “definitely becoming more popular”.

She says patients often become frustrated planning traditional funerals: “People think – it’s going to be such a good time and I’m not going to be there. That leads to have you ever thought about having it beforehand?”

Kris Hallenga was supported with her FUNeral by Legacy of Lives, a social enterprise that helps with funeral planning.

“We hope it will encourage more people to be open about death and what they want after they die,” says the charity’s chief executive, Rebecca Peach.

Rebecca Peach from Legacy of Lives said how we talk about death is changing

Data from Legacy of Lives found that less than 1% of people surveyed knew the funeral wishes of their loved ones, which Rebecca says can cause trauma, especially in the case of sudden death.

“I hate when I go see families and they don’t know what that person wanted. That’s tough on them at a traumatic time,” says Rachel, explaining why she has been so explicit in her funeral planning.

A party to plan your own death isn’t everyone’s idea of a good time, but after James Barrett’s dad died of lung cancer during COVID, he realised how important it was to know a person’s wishes.

Pic: My Goodbyes
ames hosted a ‘death party’ with his mum and her sisters. Pic: My Goodbyes

He developed the My Goodbyes app to help people plan, and host, their own death parties.

His mother was initially reluctant but agreed to participate. The party they hosted with her sisters ended up lasting two hours.

“They were arguing over which song they wanted, saying, you can’t have that, that’s my song,” James says, laughing.

Pic: My Goodbyes
Pic: My Goodbyes

I empathised with James – losing dad was the most difficult experience of my life, and he only opened up about his own funeral in the weeks before. There was a constant fear of doing something he didn’t want before I ultimately realised there were no wrong choices when it came to planning his funeral.

While stepping into a coffin sounds like an odd form of therapy, I found it cathartic. My mind wandered from the profound: would I be as open as Rob and Rachel about my own death if I knew it was coming? To the mundane: would my husband remember to de-flea the cats when I was gone?

I’ve spent weeks immersed in discussions of death but I have never felt more alive. Because it was Rob, and his courage and strength, that left me with the most to think about.

Rob Hale
Rob Hale
< "Death shouldn't be something you hide from," he told me. "Everyone goes through it. We are all going to die at some point. I think we need to be more open about it and embrace life rather than focusing on death." Complete Article ↪HERE↩!

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Solving for X at the End of Life

— In interviews with people who were dying, we learned they wanted to mark their final days with meaningful experiences and leave their affairs in order. It’s time to reset logistics, last days and legacy.

By Thomas Kamber

He died fuller of faith than of fears,
Fuller of resolution than of pains,
Fuller of honour than of days.
Inscription, Westminster Abbey, 1631

Why do we so often die badly? How does it happen that so many of us arrive at the end of life unprepared for the journey? Somehow, we are stumped when it comes to creating a better model of dying. Our unique qualities as individuals are lost in the processes of medical institutions and funeral homes. For those facing our last days, we have a pretty good sense of what’s involved.

A person using a video robot to view various artwork at a museum. Next Avenue
This woman was able to participate in a robot tour of the Whitney Museum by driving a telepresence robot around the museum from her hospice bed in Connecticut.

Twenty years ago, I started a nonprofit organization called Older Adults Technology Services (OATS) based in New York City that helps senior citizens build new models of aging while learning technology skills. We use design thinking methods to create new programs for social impact, using approaches like co-creation, prototyping and customer satisfaction metrics.

We met with people in their hospice beds, in their homes, and on one adventurous occasion, in the Fabergé room at the Metropolitan Museum.

Recently we turned our innovation lens toward what was happening with older people in end-of-life situations to see if we could design new programs to help them. Using a design thinking methodology, we met with people who were dying and asked questions like, “What is a good day like for you?” and “If you could change one thing about your end-of-life process, what would it be?”

We met with people in their hospice beds, in their homes, and on one adventurous occasion, in the Fabergé room at the Metropolitan Museum. Some had been told they had months left, while others were living with just a few weeks in their prognosis. We visited other hospices around the country and spoke with social workers, chaplains, elder law attorneys and service providers.  We read books on death and dying by Caitlin Doughty, Atul Gawande and Richard Rohr. We had weekly review sessions and talked to experts on business planning and branding and customer experience design.

We Are Failing at Dying

Here is what we learned.

We are failing at dying. Instead of a time for growth, deep connection, reflection and deliverance, our ends of life are consumed by petty distractions and institutional imperatives. The dying people we interviewed had not given up on life; rather they were full of desire to mark their final days with meaningful experiences and leave their affairs in order.

Yet almost everyone expressed sadness and frustration that they lacked a path for the right kind of death, the kind of passing that would reflect well the kind of life they had lived and the essence of the person they had become.

People described an entrenched group of institutions, resistant to change and wielding enormous power, which have grown to dominate the last stage of life — hospitals, funeral homes, home care agencies, religious organizations. When asked what they wanted instead people asked for three kinds of help: logistics, last days and legacy.

We were expecting ruminations on the duration of the soul, and instead people were preoccupied with getting the sheets clean and arranging pet care.

The Burden of Unmet Tasks

“Do you know someone who can come clean out my attic?” asked one woman in her fifties, fighting cancer and concerned that her overworked and grieving husband was sinking under the weight of daily tasks such as lawn mowing and housework. It was a startling response, in a bedside interview, to the question, “what’s most important to you now?” We were expecting ruminations on the duration of the soul, and instead people were preoccupied with getting the sheets clean and arranging pet care.

Logistics, it turns out, are top of mind for people who are dying. One woman spoke of her satisfaction in having arranged her funeral details and even set aside a dress to wear in her coffin. In an echo of Maslow’s famous hierarchy of human needs, the quotidian tasks form the base of the pyramid, and it seems difficult for people to elevate their thinking while still burdened with a laundry list of unmet tasks.

Many people commented on the need for legal help with logistics; writing wills, advance directives, health care proxies and financial plans. For many people, procrastination on legal matters resulted in family conflicts, loss of control over health decisions and anxiety about financial losses.

Unfortunately, once people were already in hospice, it was sometimes too late to interview lawyers and schedule notaries for important documents. Critical decisions about health, finances and death planning were left to caretakers and service providers, leaving the dying individual with little control over final decisions.

Death Needs a Reset

Being able to choose the location, activities and company of one’s last days was a recurrent theme. Despite being just days from passing, people expressed interest in writing articles, visiting museums, doing last trips with family members and exploring culture. My organization was able to arrange a robot tour of the Whitney Museum for one woman, who drove a telepresence robot around the museum from her hospice bed in Connecticut. At the end of the day, she drove the robot to the window and silently watched the sun setting over the river. 

One clear message emerged from the interviews: death needs a reset. The handoff from doctor to hospice nurse to priest to funeral director is no longer the only path.

Finally, hospice patients were predictably focused on their legacies. We spoke for hours with people about their thoughts on post-death rituals, the value of a personalized funeral and the services that might help them express their individuality after passing. There was a great deal of openness to modern, innovative funeral approaches— “living funerals,” celebratory parties after death and eco-friendly caskets and cremations.

One clear message emerged from the interviews: death needs a reset. The handoff from doctor to hospice nurse to priest to funeral director is no longer the only path. What’s at stake is no less than our self-determination as free individuals. Like any life transition, death is a chance to explore and express ourselves in our mature stage, when we have perhaps the most important things to say. Modern culture offers endless chances for tailoring this most personal of events to our unique needs, but our social discomfort talking about death blocks us from acting.

Time for Innovative Thinking

We need a new approach to this experience, with higher expectations and more focus on dying well, not just expiring.

We found some truly innovative models in our research: “death cafes” where people gathered to explore themes of mortality and end-of-life planning; alternative hospices such as the Zen Hospice in California and Regional Hospice in Connecticut; digital death planning apps and sites such as Everplans and Everest Funerals; community learning programs run by the Plaza Jewish Community Chapel; and a national dialogue and events series sponsored by the San Francisco-based nonprofit Reimagine. Unfortunately, these programs only serve a small percentage of those who want them.

Here is a vision for reshaping end-of-life services and systems in accordance with what people asked for in the interviews.

Logistics: We need insurance and financial products that recognize the need for intensive health and personal assistance during the end-of-life period and provide enhanced benefits for people who need them. Government might create tax-free plans for legal fees associated with end-of-life plans, and the service sector should increase programs to ensure that people over the age of 60 have a legal will, advance directive and other necessary basic documents.

Last days: Incubate and accelerate a new service sector focused on proper preparation and programming for end-of-life. As major life transitions go, dying is on a par with getting married or having children, so let’s build an industry of death services to rival wedding planners and baby showers. Bring on the social entrepreneurs!

Legacy: Encourage innovation at end of life. We spoke to several innovators who had to pursue legislative recourse to overturn outdated regulations that restricted new approaches in hospice and funeral care. New York City has over 10,000 nonprofit organizations but only one nonprofit funeral home. We need to open the sector to more innovation and reduce regulatory barriers to innovation.

Fear of death and decline holds a strong sway over our minds as we age, and it’s no wonder that we are reluctant to face it. But the longevity revolution means we are living longer and expecting more from each day of our lives, and technology is adding powerful tools for managing our last days and legacies. We need a new approach to this experience, with higher expectations and more focus on dying well, not just expiring.

Complete Article ↪HERE↩!

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I Promised My Sister I Would Write About How She Chose to Die

By Steven Petrow

On the day before my sister Julie died, I lay down on her bed and held her gingerly in my arms, afraid that any pressure would hurt her. She had lost so much weight that she looked like a stick figure I might have drawn when we were kids. As her body had wasted, her tumors had grown — now several of them bigger than baseballs. Her abdomen looked like the lunar landscape, with protrusions everywhere, the sources of her pain plainly visible.

Two and a half months earlier, her oncologist explained that these tumors might soon block the liver’s ability to drain properly, resulting in liver failure, usually a fast and painless death. “It will be as though you’re going to sleep,” I remember him telling us on a Zoom call.

That had not happened. Those tumors continued to grow. No matter the doses of fentanyl and morphine, Julie cried out in pain, the only time during her long illness that she suffered like that.

On the bed, Julie and I said little as I smelled her hair, rubbed her back and told her how much I’d miss her. Born five years apart (I am the elder), we were a pair of matching bookends — from our teenage years, when we’d go to our respective queer bars, to later in life, when each of us faced a cancer diagnosis. I asked if we had anything unresolved between us, as my therapist had suggested. “Nope,” my sister replied. “I don’t want to leave you all, but it’s time.”

A few hours later, she joined the rest of the family for our last supper together. I don’t remember much of the evening; either I failed to capture that memory or I’ve erased it, too painful to keep. I do recall Julie had one bite of a friend’s homemade Key lime pie. Apparently, a sweet tooth never dies, even if you are about to. Before bed, Julie hugged and kissed each of us: her wife and two daughters; my brother, Jay, and his wife; and me. Tucked in under the covers, I pulled out my iPhone to continue a ritual I’d recently begun with my siblings. From the guest couch, I texted:

Steven: Good night, sibs
Jay: Good night 😘
Julie: Good night to the best big brothers in the whole world 💚💙❤️
Jay: Love you to the moon and back!!
Steven: And to the bestest sister ever

Two months earlier, I joined a conversation my sister and her wife were having with a social worker, a new member of their hospice care team. They kept discussing “the MAID,” which I soon came to understand is the acronym for the New Jersey law referred to as Medical Aid in Dying. It allows New Jersey residents with terminal illnesses to choose to end their lives by taking a cocktail of life-ending medications.

This important piece of legislation was enacted in 2019, and as of last year, 186 people had chosen to die this way. (That’s a very small percentage of annual New Jersey deaths.) Julie, a lawyer, had done her research and had told me that the Garden State is one of only 11 jurisdictions (10 states and the District of Columbia) that allow medical aid in dying, also known as death with dignity and end-of-life options.

If you live in one of the other 40 states, you must wait for the Grim Reaper to pay a visit, no matter how much pain and suffering that entails. Nor can you pack up and move to New Jersey (or most other states where MAID is legal), because you must be a resident to qualify, which, at best, can take time. Time is usually not readily on hand for those who are terminally ill.

In late 2017, Julie learned she had advanced ovarian cancer. Since then, she’d endured one nine-hour surgery, six rounds of chemo, three recurrences and two clinical trials. “Enough,” my sister told her oncologist a few days before her 61st birthday, in April of this year. “I’ve decided to end treatment,” she added, to make sure he understood, and then sang, off-key, the famous Carol Burnett song, “I’m So Glad We Had This Time Together.” She asked, “How much time do I have left?” His reply: “Two or three months, at the most.”

My sister understood from Day 1 that she’d most likely die from this cancer, which, when advanced, has a mortality rate of 80 to 85 percent, according to Dr. Jason Konner, a gynecologic oncologist in New Jersey. One by one, women she had befriended in an online support group died, their last weeks and days often made awful by what Julie called “Hail Mary” treatments — drugs, many with harsh side effects, often used out of desperation or denial.

“I do not want to die like that,” my sister told me repeatedly. “This is about me taking control of my life.” She added, “I want you to write about this after I’m gone, because not enough people know about this option, even when it’s available.”

She was right. Few of our friends knew of this option, even those living in New Jersey. Kim Callinan, the chief executive of Compassion and Choices, a nonprofit that led the effort to pass New Jersey’s MAID legislation, told me these “laws are meaningless if patients are not aware they exist, which is why we focus on public education during the first five to 10 years after a jurisdiction has authorized medical aid in dying.”

The doctor’s sobering “two to three months” estimate easily qualified Julie for MAID. But that was about all that was straightforward. To hear opponents of the right to die talk, you’d think it was easy to obtain the life-ending medications. New Jersey and most other states where MAID is legal require a patient to be a mentally capable adult resident diagnosed as being terminally ill by two doctors. Julie had to request the drugs twice verbally, with a minimum of 15 days in between each request. At the time of the second ask, she had to be given the opportunity to rescind her directive. The law also required her to sign a written request in the presence of two witnesses, one of whom could have no financial interest in her death.

Julie persisted.

In recent months, lawmakers in at least nine other states have introduced MAID legislation, but opponents remain adamant. As recently as last year, Pope Francis condemned assisted suicide, saying, “We must accompany death, not provoke death or help any kind of suicide.” Other objections come from advocacy groups like the National Council on Disability, an independent federal agency that advises on government policies affecting people with disabilities; the council fears the potential exploitation of vulnerable people, especially if they feel they are a burden to family members. Julie was well aware of these concerns, but she believed MAID’s built-in safeguards prevented such exploitation.

***

With the MAID request approved, Maddy, Julie’s spouse of 35 years, picked up the prescription from a local pharmacy. The price: $900, which is not covered by Medicare, the Department of Veterans Affairs or many private insurance plans. A study published in The Journal of the American Geriatrics Society last year found that 96 percent of people who died by medical aid in dying were white and 72 percent had at least some college education. “The reality is that communities of color, for a wide variety of reasons, also are more likely to utilize aggressive care and less likely to use other end-of-life care options, such as hospice and palliative care,” explained Ms. Callinan. People without the resources to pursue MAID may be forced to make a different choice: suffer through a painful death or take matters into their own hands. “Be sure to include these statistics when you write about this,” my sister directed me.

With her pain unabated, my sister’s next task was to choose the day she would die. Our entire family supported Julie’s decision; still, we did not want to say goodbye. We made silly excuses for why certain days were inconvenient. “I have an invitation to my friends’ 35th anniversary in Provincetown the third week of June,” I blurted out. One of Julie’s daughters said, “I’ve committed to a writing workshop starting July 4.” Julie’s best friend, Jenny, had plans to travel, too. “Please don’t let Julie schedule it before the 25th!” Jenny texted me.

Julie chose Friday, June 30. She gave us four days’ notice, which allowed for time to complete her obituary, finalize the guest list for her memorial and create the program. The day before, my brother handed me a draft of the program for one last copy edit. I’d expected her date of death to be left blank; after all, we could fill it in later. Or maybe I still hoped for a miracle that would make all this preparation unnecessary. But right there, on the program’s cover, I saw dates for the first and last days of her life, her death foretold.

Julie never wavered in her decision, which proved a godsend for the rest of us. That final morning, my sister got up early to write letters to her three girls: her wife and their two daughters. Then she called the insurance company to argue with them about a payment, trying to take one thing off Maddy’s list of to-dos. I heard her say, “I’m doing MAID at noon. I need you to get back to me before then.” That is — was — my sister.

With the sun creeping toward its zenith, Julie took one last walk in her garden, blossoming with hydrangeas, zinnias and some faded irises. Then we twice watched the video Jay had put together for her service — a lifetime of memories condensed into 14 minutes. We took one last family photo, the bookend to hundreds of others, most of them with our Julie in the center. I was confounded by how to pose — a big smile, a little smile, a frown? In looking at the photo now, I think my face looked blank, which was pretty much how I felt.

Before heading upstairs with her wife and daughters, Julie cried for a moment and said softly, “I don’t want to leave you.” A few minutes later, my sister made herself comfortable on the Ultrasuede sofa in her office. Maddy prepared the medications, and after they all recited the Serenity Prayer, my sister gulped it in one shot. Within minutes, she was unconscious, in a liminal state between life and death. Maddy gently laid her wife down on the sofa and then asked Jay and me to come upstairs. I stroked her face; I whispered to her how courageous she was to have made this decision. (After all, it’s commonly said that we lose our sense of hearing last.)

I also vowed to keep my promise to tell this story, a brother’s last act of devotion to a sister he loved beyond all measure.

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Death by Doctor May Soon Be Available for the Mentally Ill in Canada

— The country is divided over a law that would allow patients suffering from mental health illnesses to apply for assisted death.

Jason French has undergone years of treatment for his depression without any improvement. He says he wants access to assisted death so he can die on his own terms.

By Vjosa Isai

Canada already has one of the most liberal assisted death laws in the world, offering the practice to terminally and chronically ill Canadians.

But under a law scheduled to take effect in March assisted dying would also become accessible to people whose only medical condition is mental illness, making Canada one of about half a dozen countries to permit the procedure for that category of people.

That move has divided Canadians, some of whom view it as a sign that the country’s public health care system is not offering adequate psychiatric care, which is notoriously underfunded and in high demand.

The government of Prime Minister Justin Trudeau, which has been criticized for its rollout of the policy, has defended its actions by pointing to a 2019 court decision in Quebec that officials say mandates the expansion.

Members of the Conservative Party have accused the government of promoting a “culture of death.” There has also been opposition from politicians on the left who would like the government to focus its health policy on expanding mental health care.

Jason French is among those building a case for why a doctor should help him die.

With copies of a document describing his troubled mental health history tucked in his backpack, he attended an event in Toronto to lobby for making assisted dying available to people like him.

He has severe depression and has tried twice to end his own life, he said.

“My goal from the start was to get better,” said Mr. French, of Toronto, who agreed to share his name, but not his age because so many in his life don’t know about his illness. “Unfortunately, I’m resistant to all these treatments and the bottom line is, I can’t keep suffering. I can’t keep living my life like this.”

But Dr. John Maher, a psychiatrist in Barrie, Ontario, who specializes in treating complex cases that often take years to improve said he was concerned that hopeless patients will opt for assisted death instead.

“I’m trying to keep my patients alive,” he said. “What does it mean for the role of the physician, as healer, as bringer of hope, to be offering death? And what does it mean in practice?”

Canada’s existing assisted death law applies only to people who are terminally ill or living with physical disabilities or chronic, incurable conditions. The country’s Supreme Court decriminalized assisted death in 2015 and ruled that forcing Canadians to cope with intolerable suffering infringes on fundamental rights to liberty and security.

About 13,200 Canadians had an assisted death last year, a 31 percent increase over 2021 according to a report by the federal health ministry. Of those, 463 people, or 3.5 percent, were not terminally ill, but had other medical conditions. Patients who are approved have the option to end their lives using lethal drugs administered by a physician or nurse, or by taking drugs prescribed to them.

There is still uncertainty and debate over whether assisted death will become available to the mentally ill early next year as scheduled. Amid concerns over how to implement it, Parliament has delayed putting it into place for the past three years and could delay it again.

Clinical guidelines were released to address those concerns last March, but some people involved in providing mental health care say they are insufficient.

A person wearing a dark jacket and an orange top stands near a body of water.
Lisa Marr, a paramedic diagnosed with post-traumatic stress disorder, said the wait for the assisted dying law to take effect has been grueling.

But supporters say denying mentally ill people access to the same humane option to end their suffering amounts to discrimination.

“I have a very deep empathy for patients who suffer deeply,” said Dr. Alexandra McPherson, a psychiatry professor at the University of Alberta and assisted death provider. She said she treats a small number of patients “with severe disabling mental health disorders who suffer equally to the patients that I see in cancer care.”

Lisa Marr, a former paramedic diagnosed with post-traumatic stress disorder who lives in Nova Scotia, said she was desperate to take advantage of the new law. She has bipolar disorder, depression and excoriation disorder, or skin picking, from anxiety and has made, she estimates, 15 attempts on her life but “always managed to pull myself out.”

A person covered by a blanket sits on a couch. A cat is nearby.
Ms. Marr at home with her support cat, Fig. “All the medications I take just barely keep me together,” she said.

Canada amended its criminal code to legalize assisted death for the terminally ill in 2016, and in 2021, responding to the court ruling in Quebec, the country loosened the law to add other severely ill people experiencing “grievous and irremediable” conditions.

Eligible patients must wait 90 days before receiving an assisted death and be approved based on the assessments of two independent physicians. One of the assessors must be a specialist in the patient’s illness or have consulted with a specialist.

A panel of experts and a special parliamentary committee have worked to address concerns from the public and medical community, by laying out practice standards and advising clinicians and regulators.

The government has also funded the development of a training program for physicians and nurses who assess patients for assisted death.

“The work has been done,” Dr. Mona Gupta, the chair of a government-appointed expert panel — who is a psychiatrist and bioethics researcher at the University of Montreal — told a special parliamentary committee in November. “We are ready.”

Anyone in Canada seeking assisted death must be deemed by the physicians or nurse practitioners who assess them as not impulsive and not suicidal, and those who are mentally ill would need to be evaluated to show that their condition is “irremediable.”

But even some psychiatrists worry that they may not always be able to determine if someone seeking an assisted death could actually get better or not.

“The research that we have shows psychiatrists are no better at identifying who’s not going to get better,” said Dr. Maher, the psychiatrist in Ontario. “The challenge for us is it’s not a short term process. When people have been sick for years, healing takes years.”

The Centre for Addiction and Mental Health, Canada’s largest teaching hospital for psychiatric care and research, has said that clinicians need more guidance to assist them in assessing who is acutely suicidal or capable of making a rational choice to end their lives.

“We’ve been clear that we have concerns about expansion at this time,” said Dr. Sanjeev Sockalingam, chief medical officer at the center, which has convened several professional groups to assist physicians in preparing for March.

A man in a suit leans against a pole looking out the window.
Dr. Sanjeev Sockalingam is the chief medical officer at the Centre for Addiction and Mental Health, Canada’s largest teaching hospital for psychiatric care and research.

Ms. Marr, the paramedic, said the wait for the law to take effect has been grueling. She takes eight psychiatric drugs every day. “All the medications I take just barely keep me together,” said Ms. Marr, who is on disability leave and spends most days in her room, leaving home only for therapy.

Her father had an assisted death after being diagnosed with prostate cancer, and her mother died shortly after, all while she was juggling her job as a paramedic.

“Then, my mental health started to rear its ugly head,” she said.

The uncertainty over whether the mentally ill would be allowed assisted death motivated Mr. French to leave his home after work, something his depression rarely allows him, to attend a screening of a documentary financed by Dying With Dignity, a charity promoting assisted death.

He went with several copies of a five-page document he created explaining his case, hoping to give it to medical experts at the screening.

Death doesn’t scare him.

“My biggest fear is surviving,” he said.

He said he’s not suicidal. But, he added, “I don’t want to have to die terrified and alone, and have someone find me somewhere. I want to do it with a doctor. I want to die within a few minutes, peacefully.”

A person in a hooded sits on a bench facing a playground.
“My biggest fear is surviving,” Mr. French said.

Both Canada and the United States have a three-digit suicide and crisis hotline: 988. If you are having thoughts of suicide, call or text 988 and visit 988.ca (Canada) or 988lifeline.org (United States) for a list of additional resources. This service offers bilingual crisis support in each country, 24 hours a day, seven days a week.

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Third of patients given lethal drugs under right-to-die laws ‘do not take them’

By Michael Searles

More than a third of suicidal patients who are prescribed lethal drugs under right-to-die laws do not take them, data show.

Just 1,905 of the 2,895 people prescribed assisted dying pills in Oregon, US, between 1998 and 2021 took them, according to the state’s public health data.

The figures are mirrored in the neighbouring state of California, where in 2021, 286 of the 772 people prescribed a fatal dose ultimately decided against using it.

Even in Canada, where medically-assisted deaths are the most pervasive and accepted in the world, around 13,000 people of the 15,500 with lethal drug prescriptions in 2022 used them – and around 300 people changed their mind.

Experts consider the Oregon model, whereby a doctor specialising in end-of-life care prescribes a deadly drug to be taken at home by a patient, as the best option for Britain, should MPs vote for a change in the law.

They said having the autonomy to take a lethal drug to end one’s own life is like an “insurance policy”, if a terminal illness becomes “intolerable”.

Oregon was one of the first places in the world, and the first state in the US, to legalise assisted dying under a Death with Dignity Act in 1997.

Inquiry into assisted dying

It is also where MPs from the cross-party health select committee visited as part of their inquiry into assisted dying and suicide earlier this year in order to understand more about the practice and what it may look like in the UK. A full report is due in the new year.

Calls for a free vote on the issue have intensified this week, with Dame Esther Rantzen revealing she was considering using Dignitas, in Switzerland, following her diagnosis with lung cancer.

Sir Keir Starmer, the leader of the Labour Party, voted for a change to the law in a defeated motion in 2015. This week he restated that there were “grounds for changing the law” but it should be through a free vote because of the “divided and strong views”.

An expert working group from the University of Essex, made up of two consultants in palliative medicine, two lawyers, and two philosophy professors, said that nowhere that had legalised the practice had voted to go back on it.

Most notably, a 2011 referendum in Zurich, Switzerland, where assisted dying has been legal since 1941 and the home of “suicide tourism” clinics like Dignitas, voted overwhelming to reject proposals to overturn the law.

Around 85 per cent of 278,000 voters opposed the ban on assisted suicide and 78 per cent rejected a motion to outlaw it for foreigners.

About 200 people travel to Zurich to use its assisted suicide services each year – an estimated 350 Brits have taken their lives there.

Prof Wayne Martin, director of the Autonomy Project and professor of philosophy at the University of Essex, said the law had never been repealed anywhere because “there is no political force sufficiently strong to reverse the tide”.

“If anything the tendency is for access to assisted dying to be progressively expanded over time,” he said.

‘Time and place of their own choosing’

“Public records in Oregon consistently show that many of those prescriptions are never actually used,” he said.

Prof Martin added that the system used in Oregon was preferred because it lets people take the lethal dose at a “time and place of their own choosing”.

“Public records in Oregon consistently show that many of those prescriptions are never actually used,” he said. “Many Oregonians who apply for assistance in dying do not actually want assistance in dying. What they seek from that prescription is an insurance policy that will protect them from being trapped in a life they find intolerable. What they want is autonomy.”

Around 200 million people have access to assisted dying around the world, and this number is only growing.

It is an option for the terminally ill in nine US states, Canada, eight European countries, and all Australian territories except the Northern Territory and the Australian Capital Territory.

It has in the last couple of years been legalised to some extent in Spain, Portugal, Germany and New Zealand, and is being considered in France.

The drug prescribed is usually a short-acting barbiturate, which is a type of sedative taken at a high dose so that it completely suppresses the central nervous system, inducing death.

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