Month: January 2024

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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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The Palliative Path

— A meditation on dignity and comfort in the last days of a parent’s life

At a certain age, for certain conditions, palliative care can be a better, less painful choice—not just for the patient but also their caregivers.

By Abeer Hoque

In 2020, in the midst of a worldwide pandemic, my 85-year-old father suffered a heart attack in Pittsburgh and was rushed to the hospital.

The stent, a minorly invasive procedure, was the easy part.

But the two days he spent in UMPC’s state-of-the-art ICU were a nightmare. The anesthesia made him groggy and aggressive. The sleep meds made him perversely restless and short of breath. The IV he constantly fiddled with, once even ripping it out, much to our horror.

Instead of restraining him, which I imagine to be a cruel and unusual punishment for an Alzheimer’s patient, the ICU staff let me stay with him overnight (a massive kindness made greater by the strict Covid protocols of that time). This way, I could keep him from wandering, from pulling out the IV, from being confused about where and why and what. Every two minutes—I timed it, and it was comically on the clock—I explained and comforted and explained again. By midnight, I thought I would go mad with worry and exhaustion. By 3 a.m., I was seeing stars, my father and I afloat in an endless hallucinatory universe of the now. By 6 a.m., we were both catatonic.

After he came home, my father was in a bad state. Physically he was fine, if a bit unsteady, but emotionally, he was depressed, anxious, raging, unresponsive. His appetite was out of control and he raided the fridge at all hours. He barely slept, wandering the house like a ghost of himself. It took almost three months for him to return to his ‘normal’—another immense gift from the universe, as medical crises often spell inexorable decline for the elderly.

A year later, the doctors discovered a giant (painless) aneurysm in his stomach, which could rupture and kill him “at any moment”.

Operating would mean a five-inch incision, at least five days in the ICU and up to a year to recover fully (if at all). For someone with dementia, major surgery also seemed a cruel and unusual punishment. From New York to Philadelphia to Pittsburgh, my siblings, my mother and I met over video chat to discuss at length. We made the difficult decision to let the aneurysm be, to keep my father comfortable and at home.

Initially, my mother felt tortured. Were we giving up on my father? Was she abdicating her responsibility?

These are questions that modern medicine is not always fully equipped to answer.

Doctors (especially surgeons) are often focused on finding and fixing the physical problem. But Alzheimer’s is a uniquely mental condition and it forced us to consider my father’s health and well-being on more than just the physical front. We wanted to prioritise his dignity, his comfort, his pain-free state: namely, his overall quality of life.

Days later, the doctors told us that the aneurysm was actually inoperable because of its position in his body. Moreover, there were two rogue blood clots that, if disturbed, could travel to the brain and kill him instantly. Our decision had been the right one, not just mentally but also medically.

Our family made another big decision at this time: we would not take my father to the hospital anymore—instead we would start palliative care.

I have been recommending Atul Gawande’s brilliant book Being Mortal to everyone since I read it five years ago. It lays out the case for palliative medicine (a.k.a. hospice care) in compelling detail. Instead of trying to prolong life, palliative care prioritises a patient’s physical and mental well-being and focuses on pain management. Not only does this kind of care drastically reduce the chances of family members developing major depressive disorder, but the patient outcomes are astonishing:

Those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25% longer. If end-of-life discussions were an experimental drug, the FDA would approve it.

Atul Gawande, in his book ‘Being Mortal’

In February 2023, my parents moved to Dhaka after 54 years abroad (in Libya, Nigeria and the States), abandoning the isolating, exorbitant, often neglectful care networks of America for the familial support and affordable at-home caregiving of Bangladesh. We were privileged to have this option, to have extended family so loving and helpful, to have enough money to pay rent and hire multiple caregivers.

For my mother, who had been my father’s full-time caregiver for over a decade, it was a new lease on life, letting her visit childhood friends, walk in Ramna Park every morning, get a full night’s sleep. We were additionally lucky that over 10 months, we did not have to see a doctor because my father’s occasional tummy upsets and falls did not result in serious illness or injury.

In December 2023, my mother left for the US for five weeks to visit my sister and her three children and to hold her newest month-old grandchild (my brother’s first child) in her arms. It would be the first time in more than a decade that she would leave my father for more than a few days, and she agreed to this vacation only because I had taken an extended break from my life in New York to be in Dhaka while she was away.

Three days after she landed in Pennsylvania, my father suffered his first medical crisis in over a year: a distended belly and extreme stomach pain.

I immediately called my cousins who live down the street. Two of them brought over their mother’s doctor, a young generalist who worked in the ICU of the hospital around the corner from us in Bonosri. Seeing my father’s taut and grossly swollen stomach, the doctor advised urgent hospitalisation. Thus started a gruelling, repetitive, exhausting conversation about palliative care, all while my father cried out in pain from the bedroom.

Despite several palliative and hospice centres in Dhaka, the concept seems unknown to many Bangladeshis, perhaps even heartless.

Neither of my cousins could sleep that night after hearing my father’s cries. I explained why we had decided against hospitalisation, against X-rays, ultrasounds and blood tests, against antibiotics and IV-administered fluids. I predicted that the hospital would likely have to restrain or sedate him or both. I said that even if we eased his physical state, mentally he would be traumatised.

This resistance to palliative care is not uniquely Bangladeshi. Families across the world are torn apart because family members have different ideas on how to best take care of a loved one. Too often, no one has asked the patient their preferences about resuscitation, intubation, mechanical ventilation, antibiotics and intravenous feeding. Too often, it’s too late to ask by the time these medical interventions come into play.

The doctor finally offered pain and gastric medicine via intravenous injections. One bruised wrist later, my father was more comfortable. Over the next 24 hours, he had two more injections, but by the third one, the pain meds were no longer working.

At 2 a.m. on a cool Dhaka winter night, we levelled up, the doctor generously taking time off his night shift to come to our house with a nurse and administer an opioid that eased the pain for another day and half.

By Christmas, or Boro Din as they call it in Bangladesh, I had defended palliative care more than half a dozen times to my relatives, each one aghast at how my father could suffer so, without my helping, i.e., hospitalising him.

This then was my struggle: to remember I was not there to fix anything, but to ensure that he remain in familiar surroundings, in his sunny airy bedroom. That he not be in pain.

This too was my struggle: to get my extended family on board with palliative care.

The cousin who came to live with us in America when he was in high school and who idolised my parents. The cousin who asked me to bring my father’s nice shirts and blazers from Pittsburgh so he could wear them. Their sweet wives, my bhabis, and their lively loving children who visited my father almost every day. To hold back my kneejerk reactions:

Are they questioning my family’s judgement? Is this the patriarchy at work? Do they understand that it is no easier for me to see my father in pain?

My challenge was to set my defensiveness aside and try to infuse their love and concern with knowledge and perspective, so they could help me help my father spend his remaining days in comparative ease, rather than more aggressive medical treatment.

My last struggle was the hardest of all: The one that questioned the kind of life my father had been living these last few years.

Nine years after his Alzheimer’s diagnosis, he could not do a single thing that used to bring him pleasure: dressing nicely each morning, making himself breakfast while exclaiming over the newspaper headlines, reading history books and novels, writing fiction in Bangla, teaching geology in English, wandering the Ekushay February book fair, visiting his ancestral home in Barahipur, playing cards and watching action films, making his grandchildren collapse into giggles, walking on the deck at sunset with Amma, holding court with the Bangladeshi community in Pittsburgh, speaking to his two beloved remaining siblings, my Mujib-chacha and Hasina-fupu, delighting my mother with his quick-witted jokes.

If he could make no new memories and the only joys he had were fleeting—the chocolate chip cookies from Shumi’s Hotcakes, my mother’s smiling face, his caregivers’ tender ministrations—were these enough?

Was there some Zen-level lesson here on living in the moment?

And when these brief moments were interleaved with longer troubling periods of confusion, distress, rage and sadness… What then?

What about the endless hours spent restless and awake, his eyes lost and searching?

My father and I had had a fraught relationship my whole life.

Patriarchal and emotionally distant, he threw me out on several occasions, literally and figuratively. I didn’t speak to him for years at a time, and even reconciled, our exchanges were limited to politics, education and writing. He seemed uninterested in anyone’s emotional life, unable to engage in conflict without judgement and anger. His gifts of intellectual brilliance, iron-clad willpower and moon-shot ambitions did not make him an easy father—or easy husband, for that matter.

But now, none of that mattered. The only thing that did was my attempt to attend to him with kindness.

Linking his dementia-fueled rage to his life-long habitual rage would make the already difficult task of caregiving impossible. I had read enough studies that showed that caregivers died earlier because of their stress. It wasn’t hard to see the toll it had taken on my mother over the years. She had been hospitalised for rapid heartbeat issues twice last year and, despite a lifetime of healthy living, had developed high blood pressure to boot.

In his sleep-deprived, pain-addled state, my father didn’t always respond or recognise those around him. But one night, in a moment of lucidity, he reached for my hand and asked urgently, “Are you doing ok?”

“Yes Abbu,” I assured him, “I’m doing fine.”

And then he said—faint, incomplete, clear—“Take… your Amma.”

I said, “Of course I will.”

He was telling me what I’d always known, that despite everything, he had always looked out for my health and self-sufficiency, and more importantly, that looking after my mother was our shared act of service.

If this winter of struggle and sorrow gave my mother more time in the world, then I was ready for it. Would that the path were palliative for us all.

Complete Article ↪HERE↩!