Speaking of death

— Christians have an opportunity to eschew euphemisms and talk honestly about mortality.

By Rachel Mann

When my father died a couple of years ago, my family asked me to take the lead in organizing his funeral. I was happy to take this role: I am an experienced cleric used to working with funeral directors, and I have a strong understanding of the funeral process. What I’d never previously experienced—at least not from the point of view of a grieving person—is how readily those involved in the ministrations around a death speak in euphemisms. Perhaps it was a token of my grief, but I was annoyed by how many people couldn’t even say that my dad had died; most people, including the funeral director, said, repeatedly, that he’d “passed.”

Does it matter? At one level, no. The phrase “passed away” has been used to refer to death for 500 years. Still, it troubles me theologically. I fear that the prevalence of using passed as a way of speaking (or not speaking) of death indicates a society frightened by the finality of death, one that has opted for an overly spiritualized response to the last enemy.

A common refrain in my clergy circles is about how, on visits to plan funeral services with the bereaved, the only person prepared to use the “D” word is the priest herself. The bereaved will typically resort to any number of euphemisms to avoid it. This is entirely understandable. Shock is a natural reaction to death and, as creatures of language, we may be inclined to retreat to clichés that seem to soften the blow.

Indeed, at one level, euphemisms are entirely comprehensible as strategies to avoid the things we struggle with most. As Voltaire noted, “One great use of words is to hide our thoughts.” This applies to any difficult aspect of life, not simply death. Terms like downsizing and rationalization have been used for decades in business settings to avoid speaking directly about job cuts. In almost every area of life that really matters or troubles us—from sex through to war—there are forms of words that have been found to smooth out what’s difficult.

If death is the greatest human fear, it is hardly surprising that most of us will find ways of avoiding talking about it. The sheer number of ways humans have of avoiding the “D” word is both a testament to our creativity and an indication of how much we fear death.

Yet I think one of the imperatives on us as Christians is to be as honest as we can about death. Priests in particular are called to help people to pray and prepare them for death. Ironically, in an age when Christians are often parodied as delusional fantasists, we in fact have something powerful to offer as people who model realism and honesty about death. And one way we do that is by avoiding euphemisms at the point of death. If euphemisms are deployed in part to soften the nature of something shocking and appalling, ironically they serve to draw greater attention to that which they are meant to conceal. By being carefully and humanely honest about the singular finality of death, both priests and laypeople may be key agents in helping the bereaved to come to terms with the simple fact that, in this life at least, their loved ones are gone.

I am not suggesting that Christians should be crass. I trust we will always be sensitive to death’s ability to strip any of us of our certainties. But the quiet acknowledgment of the final nature of death may be significant both pastorally and for mission. In being clear that death has a shocking finality about it, Christians—as people who are committed to resurrection and new life—may be better placed to speak the good news of Christ. One thing we should not be afraid of in our faith tradition is the bleak reality that God incarnate, Jesus Christ, actually died and died horribly. He did not fall asleep or pass over or, to quote George Eliot, “join the choir invisible.” He died, in a vile and appalling way.

Resurrection is predicated on death. This is a powerful message in an age and culture in which technology and market economics have created the illusion that life and growth are almost endless. Growth is taken to be always good—and to be fair, growth is often a sign of life. Yet Jesus invites us to remember that unless a kernel of wheat falls and dies it remains a single seed. Jesus himself models a way of living abundantly that is grounded in the unavoidable reality of death.

Increasingly I read stories of billionaires seeking to cheat death altogether. In a culture where medical technologies have extended life among the wealthy to unprecedented levels, Christianity retains a potent voice on the inescapability of death. Even more powerfully, the figure at the heart of the Christian faith, Jesus Christ, signals that a fulfilled and rich life is not by its nature dependent on its length. At a time when religious faith is often parodied as absurd, childish, and fantastical, there is a profound opportunity to speak to the privilege of individuals and societies that seek to isolate themselves from the facts of human existence.

I know that there is nothing much I can do, as an individual, about the use of passing as a euphemism for death. At the same time, I can think of no greater vocation as a person of faith than to speak honestly about death, trusting in that even deeper reality of God’s resurrection.

Complete Article HERE!

Demand for death doulas has soared.

— Here’s how they help patients go with grace.

By Stacey Colino

What does it mean to have the “best possible death?” A growing number of end-of-life doulas are helping patients and families figure that out.

When Jerry Creehan was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in January 2017 at age 64, he and his wife Sue knew they were facing a rough road ahead. For more than a year, Jerry had struggled with his balance and had been falling, unable to get up. ALS (formerly known as Lou Gehrig’s disease) is a progressive neurological disorder affecting nerve cells in the brain and spinal cord that regulate voluntary muscle movement, breathing, and other bodily functions; it eventually leads to paralysis and death.

In 2020, his condition began declining and he became reliant on eye gaze technology to move his wheelchair, and on a non-invasive ventilator to breathe. While attending a support group at the ALS Clinic at Virginia Commonwealth University, Sue heard Shelby Kirillin, an end-of-life doula, speak. Kirillin, a former nurse specializing in neurotrauma, spent two decades working in intensive care units, where she saw “how ill-prepared people are for the end of life. People don’t know how to talk to people with a terminal diagnosis. I thought we could do better.” That’s what inspired her to become an end-of-life doula in 2015.

“We knew we were in the final stages of ALS, and even though Jerry wasn’t afraid of dying, we needed someone to help us talk about it,” recalls Sue, a wound-care nurse consultant in Richmond, Virginia. “He wanted it to be the best possible death it could be, pain-free, and not filled with anguish.”

Many people are familiar with labor doulas, postpartum doulas, and maybe even abortion doulas, who provide support for people dealing with challenges related to ending a pregnancy. By contrast, end-of-life doulas work with those on the verge of dying, and their families. Also called death doulas, these professionals used to be rare but that changed during the COVID-19 pandemic. Since the virus began wreaking havoc, organizations that support and train death doulas in the U.S. have grown. In 2019, the National End-of-Life Doula Alliance (NEDA) had 260 members in the U.S.; membership grew to 1,545 doulas as of January 2024. Research has found that end-of-life doulas are most active in Australia, Canada, the United Kingdom, and the United States.

“During the pandemic, people were facing their own mortality more than at any other time because there was a lot of dying and grief happening,” says Ashley Johnson, president of NEDA, which is based in Orlando.
Offering various forms of support

Generally end-of-life doulas provide non-medical, compassionate support and guidance to dying people and their families. This includes comfort and companionship, as well as social, emotional, spiritual, and practical support (such as household help or running errands), depending on the provider’s strengths and the patient’s needs. Some end-of-life doulas help with estate planning, end-of-life care planning, or legacy planning. Others focus on helping people create an ambiance they want for their last days, facilitate difficult conversations between clients and their loved ones, or help with grief counseling with survivors.

“People don’t want to talk about death—they’re so afraid of it,” says Elizabeth “Like” Lokon, a social gerontologist who recently retired from the Scripps Gerontology Center at Miami University in Ohio and is now training to become a death doula. “As a social gerontologist, I want to bring it out from hiding and help people accept it. In some cultures, the denial of death, the separation between the dying and the living, is not as severe as in some western countries,” adds Lokon, who grew up in Indonesia.

“We labor into life, and we labor out of life,” says Kirillin. “All of us are born with life and death walking next to us.”
Changing the approach to death

Since it was formed in 2015, the International End-of-Life Doula Association (INELDA) has trained more than 5,600 doulas around the world, but the practice and training of death doulas varies considerably. There isn’t a universally agreed upon description of this type of care or federal regulations in the U.S. for becoming an end-of-life doula or oversight of their work. A study in the journal Health & Social Care in the Community concluded that the lack of a business model for death doulas creates inconsistencies in the services death doulas offer and what patients and their families can expect.

For example, INELDA offers a 40-hour training that focuses on the foundations of doula work and support for the dying. By contrast, NEDA is a membership organization that offers micro-credentials after doulas show their knowledge and proficiency in the skills involved. Other training programs offer four-week in-person courses, 12-week online courses, six-week programs, and other formats.

There’s also no standardized fee structure for end-of-life doulas: It typically ranges from $20 to $100 per hour, depending on the location and range of services that are offered, Johnson says. And some death doulas offer a sliding scale of fees or do it voluntarily, on a pro bono basis. Their services are not covered by insurance.

Regardless of how they’re trained or paid, many death doulas find the practice meaningful and fulfilling.

“People find it profoundly moving—some people use the word honor or sacred,” says Douglas Simpson, a trained end-of-life doula and executive director of INELDA. “End-of-life doulas help people take control of what their death looks like … It’s very fulfilling and not as depressing as people think.”
During the pandemic, Julia Whitty, a writer in Sonoma County, California, who had done volunteer hospice work earlier in her life, trained to become an end-of-life doula because her mother and a friend were on the verge of dying. She wanted to be better prepared personally, and she wanted to help other people with a terminal diagnosis in her social sphere.

“It’s a two-way relationship because you’re learning something from someone who’s coming to their end,” says Whitty, “and hopefully you’re helping them manifest what they want in their last days—physically, emotionally, socially, and spiritually.”

Among the things end-of-life doulas don’t do: administer medicine, monitor vital signs, make or recommend medical decisions for the client, impose their values or judgments on clients, or act as therapists.

“We meet people where they are—we come in holistically and help them navigate the final stages of life,” Johnson says. “It’s helping people face their own mortality with dignity. We’re promoting death positivity, decreasing the stigma.”
Creating a peaceful ending

Eleven months before he passed away, Jerry Creehan was put into hospice care and his wife Sue contacted Kirillin who worked with them once or twice each month for an hour at a time then more often as his condition deteriorated.

At first, Kirillin helped them talk about what death looks like and how Jerry could “own” his death. Sometimes she’d spend time just with Jerry, other times just Sue, and sometimes with both of them. As Jerry got weaker, Kirillin helped him come up with rituals to do with loved ones; she talked to Jerry about what he wanted his legacy to be and helped him write letters to loved ones. With Kirillin’s guidance, they created a detailed plan for his funeral and he designated personal belongings to be given to people he loved on his last night. Kirillin suggested they send an e-mail to friends and family members asking them to share memories and photos of time spent with Jerry.

“We got a wonderful response and put together a legacy journal,” recalls Sue who has three adult children and six grandchildren with Jerry. “I would read it to him, and it was very consoling to him to know that he had an impact on people’s lives.”

On his last evening, May 2, 2022, his breathing had become very difficult. There were 19 people in the bedroom, and someone opened a prized bottle of pinot noir to be used for communion with everyone present. Jerry was a certified wine educator, a foodie, an avid golfer, traveler, and a devout Christian, according to his wife of 46 years.

“He turned to me and said, Sweetie, I think it’s time,” she recalls. They kissed and hugged each other—family members helped put his arms around her—and Jerry said to Sue, “I love you. I always have and I always will. I’ll see you soon.” Then he winked at her and closed his eyes, she recalls. His ventilator was turned off and he passed away.

Afterwards, Kirillin and the hospice nurse stayed with him, bathed him, dressed him, and prepared his body for the funeral home.

“We did everything the way he wanted it to be done—that was a big gift to my family,” says Sue.

The Creehans’ experience isn’t unusual. In a study published last year in Palliative Care and Social Practice, researchers interviewed 10 bereaved family members about their experiences with a death doula and found that it was overwhelmingly positive. The most valuable benefit families gained was an increase in death literacy, including the ability to talk openly about death, which helped them feel empowered to care for their loved ones at the end of life. There was also a positive ripple effect as families spread the word about the benefits of using a death doula.

“People don’t want to wait for death to come and get them—they want to play the hand they were given the best they can,” Kirillin says. “We’re all going to die. I can’t change that. But I can help someone end the last chapter of their life the way they think they should. And I will sit next to them as they own it.”

Complete Article HERE!

What Dying Feels Like

— Palliative Care Doctor

Although a dying person tends to spend more and more time asleep or unconscious, there may be a surge of brain activity just before death

By Denyse O’Leary

Wednesday was Ash Wednesday in the Western Catholic tradition. It marks the beginning of Lent, a season of reflection and repentance. A common custom is that, during the service, the priest traces the sign of the cross in ashes on the penitent’s forehead, saying “You are dust and you will return to dust” (Gen 3:19). It’s one of many customs worldwide that offer a sobering reflection on the inevitability of death for all of us — unless, of course, we are transhumanists who genuinely believe that technology can grant us immortality.

What does dying actually feel like?

Most human beings have always believed that the essence of a human being survives the death of the body though the outcome is envisioned in a variety of ways. But, assuming that pain and distress are controlled, what does dying actually feel like? Can science tell us anything about that?

Caregiver supporting sick woman with cancer dying in the hospital

At BBC Science Focus, palliative care doctor Kathryn Mannix offers a few thoughts from long experience, including:

A dying person spends progressively less time awake. What looks like sleep, though, gradually becomes something else: dipping into unconsciousness for increasing periods. On waking, people report having slept peacefully, with no sense of having been unconscious…
As dying progresses the heart beats less strongly, blood pressure falls, skin cools down and nails become dusky. Internal organs function less as blood pressure drops. There may be periods of restlessness or moments of confusion, or just gradually deepening unconsciousness…
Breathing moves from deep to shallow and from fast to slow in repeating cycles; eventually breathing slows and becomes very shallow; there are pauses; and, finally, breathing ceases. A few minutes later, the heart will stop beating as it runs out of oxygen.
Kathryn Mannix, “What does dying feel like? A doctor explains what we know” BBC Science Focus, February 10, 2024

Surge of brain activity just before death

We are also learning that, contrary to what we might have expected, the brain does not necessarily just die down quietly. Researchers have recorded a surge of activity just before death:

To that end, the brain activity of four people who passed away in hospitals while being monitored by an EEG (electrogram) device was studied.
“The data generated, even though it’s only four patients, is massive, so we were able to only report a fraction of the features that it’s actually showing on the data,” Prof. Borjigin said.
At the time of death, brain activity was detected in the TPJ region of the brain — named because it’s the junction between the temporal, parietal and occipital lobes in the back of the brain.
Dan Gray, “Study finds evidence of increased brain activity in people right before they die,” Medical News Today, May 5, 2023. The paper is open access.

There may be a correlation between the surge of activity and near-death experiences, though that wouldn’t account for the NDEs of people who showed no neurological activity.

In any event, cells deprived of oxygen are doomed. But that does not mean that all of the body’s cells cease to function immediately when a person dies:

The brain and nerve cells require a constant supply of oxygen and will die within a few minutes, once you stop breathing. The next to go will be the heart, followed by the liver, then the kidneys and pancreas, which can last for about an hour. Skin, tendons, heart valves and corneas will still be alive after a day. White blood cells, which are more independent, can keep going for almost three days.
Luis Villazon, “When we die, does our whole body die at the same time? ”BBC Science Focus, nd.

So when a medic declares a person dead, that means that the death process is past the point of no return, not that every cell in the body is dead.

Terminal lucidity — getting in the last word

There are many stories through the ages of people near death suddenly waking up and saying something lucid. Researchers who study the phenomenon call it terminal lucidity. At Psychology Today in 2018, nurse educator Marilyn Mendoza noted regarding research to date::

So far, the response rate to the questionnaire he distributed has been limited. While the results are in no way definitive, out of the 227 dementia patients tracked, approximately 10 percent exhibited terminal lucidity. From his literature review, Nahm has reported that approximately 84 percent of people who experience terminal lucidity will die within a week, with 42 percent dying the same day.
Marilyn Mendoza, “Why Some People Rally for One Last Goodbye Before Death,” Psychology Today, October 10, 2018

As to why it happens, she offers,

There is as yet no logical scientific answer to this medical mystery. There is just not enough information to postulate a definitive mechanism for terminal lucidity. The fact that it occurs in people with different diseases suggests that there may be different processes occurring. Some speculate that this could be a spiritual experience or divine gift. It certainly is a gift for family members attending the death to have one last opportunity to be with their loved one and to say their last goodbyes. Both family members and caregivers who have been witness to this state that they feel changed by the experience.
Mendoza, “One Last Goodbye”

One interesting trend is this: Fifty years ago, slick media commentators expected to report that research into death and dying would explod all those myths about a soul or the hereafter or the human mind. But the opposite has happened. Topics like terminal lucidity and near-death experiences are conventionally researched now. And it’s just as clear now as it was fifty years ago that life is a journey and death is not, itself, the destination; rather, it’s a gateway to one.

Complete Article HERE!

Let’s stop calling medical aid in dying ‘suicide’

By Kenneth Norton

The New Hampshire legislature is considering a bill to join our Maine and Vermont neighbors to allow New Hampshire residents with a terminal illness, in consultation with two medical providers, the option of ending their suffering and having a peaceful death. As a Licensed Independent Clinical Social Worker who has spent over four decades working to prevent suicide at the local, state, national and international level, I think it is time to look closely at the differences between the two, and stop referring to medical aid in dying as suicide.

Legally, in the 10 states and Washington D.C. where medical aid in dying is allowed, the death is not counted as a suicide death. Medical Examiners and Coroners list the underlying terminal illness, which the person was diagnosed with, as the cause of death on the death certificate of patients who utilize medical aid in dying.

People who die by suicide, for whatever reason, no longer wish to live and feel that they have no other option than death. The person who chooses medical aid in dying wants to live yet has been diagnosed with a terminal illness that will end their life, and may cause intense suffering before they die. They are fully informed of other options including palliative care, hospice, and comfort measures. This is not a decision they are allowed to take lightly or at the spur of the moment. It requires thoughtful controls and two medical opinions in support of specific terminal illness.

A high correlation exists between suicide and mental illness. The person who dies by suicide may or may not be rational, or even competent in that moment. Research shows that many suicide deaths are impulsive. Although the person may have contemplated suicide for some time, it may only be a matter of minutes between making the decision to die and then taking their life. By contrast, in medical aid in dying, people go through a formal process with two medical professionals that includes: an assessment of their mental capability, a determination about their terminal illness, an informed consent process including a review of available options, and a mandatory waiting period

People who die by suicide die alone, and often die by violent means. In New Hampshire, over 75% of suicides involve firearms or hanging. Nationally, over 75% of suicide deaths occur in a home or primary residence. These violent deaths result in trauma for their loved ones who return home to find their loved one dead. The scene, shock, and aftermath are so distressing that many people are no longer able to continue to live in their homes. Suicide deaths can also be traumatizing and contribute to PTSD in first responders who are called to the scene.

Family, friends, and loved ones of a person who dies by suicide can experience intense emotions including shock, guilt, anger, shame, regret, and despair as they try to come to terms with the suddenness of the death, and make sense of the often-unanswerable question: “why?” People who are bereaved by suicide may experience suicidal thoughts and are statistically at higher risk themselves for suicide. Suicide deaths are often devasting and life altering for family and friends resulting in a long and complicated grief process that may last years. It is said the person who dies by suicide dies a single death, but their family/friends are left to die a thousand deaths.

By contrast, the person who goes through the medical aid in dying process, frequently includes loved ones in their decision. Most die in their home, surrounded by their family and friends. The death is planned, and peaceful. Family and friends are left at peace knowing that this was their choice and their suffering is over. To be clear, this does not stop those close people from grieving the death, but it eliminates the “whys” and “what ifs” as well as the trauma from a sudden suicide.

Despite our best efforts, there is still considerable shame and stigma associated with, and experienced by family and friends after a suicide. We should be careful not to contribute to that stigma by extending it to medical aid in dying. Whether you support or are opposed to medical aid in dying, we should acknowledge there are significant differences between the two, and we should stop labeling medical aid in dying as suicide.

Complete Article HERE!

Demystifying death

– A palliative care specialist’s practical guide to life’s end

Even people who are comfortable discussing death – including the inevitable prospect of their own – might understand little about how it actually tends to unfold unless they’ve experienced it firsthand alongside a loved one. In this brief animation, author Kathryn Mannix, who worked as a palliative care physician for 20 years, offers viewers a sensitive, honest and practical guide to how death tends to progress under normal, or perhaps ideal, circumstances. Pairing her narration with gentle, flowing animations, the UK filmmaker Emily Downe’s short makes a powerful case that there’s deep value in discussing and understanding death well before it touches us.

‘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

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!

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!