All pets go to heaven.

— She helps them do it at home.

Eden Gaines, left, talks with veterinarian Karen Meyers about the decision to euthanize Xochitl, a boxer-Great Dane mix who has cancer.

By

Veterinarian Karen Meyers pulls her black minivan into the driveway of a townhouse in Maryland’s National Harbor. The home, in a gated community, is perched on a windy bluff not far from restaurants, bars, a casino — places of revelry.

The vet carries her brown doctor’s bag inside. There, she meets her patient: Xochitl, known as Xochi, an 11-year-old boxer-Great Dane mix weighing around 80 pounds.

Xochi, recently diagnosed with cancer, is struggling. A film covers her right eye. She had been bleeding from her mouth, refusing to eat. Now she stands in the townhouse’s living room, mournfully greeting family members who have come to say goodbye.

Xochi climbs onto the living room’s leather couch and lies down. Owner Eden Gaines and her family gather around her. Meyers opens her bag.

Meyers explains the procedure. First, Xochi will be injected with a sedative to make her fall asleep. Five to 10 minutes later, Meyers will administer sodium pentobarbital, which will euthanize her. But Xochi would feel no pain, Meyers assures the family.

She asks whether anyone has any questions.

No one does.

“Here we go,” she says.

Meyers says she has euthanized 1,500 animals in four years.

Pet adoption spiked during the pandemic, with nearly 1 in 5 American households taking animals in and spending far more on them than pet owners did decades ago. With more beasts in our lives — as companions, as emotional support animals, as the beneficiaries of pet trusts — it only makes sense that their owners want their final moments in their lives to be as peaceful and painless as possible.

That’s where Meyers comes in. Working with Lap of Love, a company that provides veterinarian referrals for at-home pet euthanasia, she travels from house to house in the D.C. region offering grieving families’ animals what the word euthanasia means: “good death.” In four years, she has euthanized 1,500 animals: cats, dogs, rabbits, rats. Some had been with their owners since childhood. Some had traveled the world with them. Some were their owner’s sole companion.

Meyers has observed death rituals that include praying, burning incense, wrapping a deceased pet’s body in a white sheet, and opening a window for a pet’s spirit to exit. She has listened to owners read poems or letters to their pets and cried along with them.

“When people hear what I do for living, it sounds sad,” Meyers says. “But it’s strangely rewarding. … You give pets a peaceful experience. It’s a final gift.”< Meyers has been surrounded by a menagerie all her life. Growing up, she usually had a dog and one or two cats; at various times, she’s also had two hamsters, two turtles, a guinea pig, a bird and four chickens. Right now, she has Wren, a 6-year-old Cavalier King Charles spaniel; Travis, a 3-year-old pug; Brinkley, a 13-year-old rat terrier Chihuahua; and Pablo, a red-belly parrot. Right before the pandemic, Meyers decided to shift to doing euthanasia full time. She had been a veterinarian for more than two decades, and pet euthanasia turned out to be less stressful than working in an office while raising two children. In-home euthanasia can be easier on animals and their owners than office appointments with other sick animals and their distressed owners crowded around.

The first injection makes Xochi fall asleep.
Rameses Gaines holds a piece of Xochi’s fur.

Meyers administers the first shot in Xochi’s back. The dog, already lying down with her head on Gaines’s lap, turns to glance at Meyers as if mildly annoyed.

Then, the dog relaxes.

Minutes pass.

Using a hair clipper, Meyers shaves an inch-long strip of one of Xochi’s legs and inserts a small IV line. After confirming that the family wants to continue, Meyers administers the second shot, the one with the fatal dose.

Gaines looks at the spot on Xochi’s leg where the IV had been inserted.

“It’s amazing how gray she became,” Gaines says.

Meyers holds a stethoscope to Xochi’s chest. “Xochi has her wings,” she says.

The family cries.

So does Meyers.

She and Gaines embrace.

Meyers maneuvers Xochi onto a stretcher and covers her with a blanket. With the help of Gaines’s sons, she loads the dog into her car. Eventually Xochi will be cremated and her ashes returned to the Gaines family.

Death is a part of life, Meyers says.

“Many times, people will comment how a human family member passed, and it was so painful at the end, and this is peaceful by contrast,” she says.

They tell her, she says, that they wish they could go the same way.

Rameses Gaines touches a mold of Xochi’s paw print.

Complete Article HERE!

Is extending life by weeks worth the toll some cancer drugs take?

— Doctors push for ‘common-sense oncology’

When a treatment buys a few weeks or months but comes with with a lot of side-effects, then the perspectives of people with cancer may differ, says Dr. Christopher Booth.

People may celebrate a 2-week improvement in survival without acknowledging costs

By Amina Zafar, Christine Birak

Tom Somerville’s decision to stop medical treatment for his end-stage cancer was a personal one.

Somerville, 62, was diagnosed with colon cancer in 2021 that later spread to his liver. He had six months of chemotherapy to slow down the cancer, which he said also left him exhausted with nausea.

The Kingston, Ont., resident decided to take a break from treatment to enjoy a trip with his wife to Victoria.

“Things that you cherish change, right?” Somerville said. “I used to love being out in the bush, but now it is just nice to have a sunny day, sit with my family [and] have visitors.”

Somerville said he came to terms with his prognosis and decided to enjoy the rest of the life he has left, extending the chemo break to a full stop. He said he was relieved to not “feel crappy” from the treatment anymore.

A man stands with a woman holding an umbrella while on vacation in B.C.
Tom Somerville, left, and his wife, Katherine Somerville, enjoyed a vacation in Victoria while he paused cancer treatments.

Dr. Christopher Booth, Somerville’s medical oncologist at Kingston General Hospital, supports him in his decision.

Booth is also part of a group of cancer doctors in Canada and the U.S. who say medications with marginal benefits are overused for patients in the end stage of the disease. The oncologists have started a campaign through their website, journal articles and podcasts encouraging honest conversations about use of the drugs with cancer patients, their families and experts.

The goal of what they call “common-sense oncology” is to prioritize treatments that meaningfully improve survival and quality of life. They aim to address what they see as problems in the field, such as a lack of critical thinking in oncology training, falling standards for drug approvals and avoidance of end-of-life discussions.

Balancing hope and reality

Booth said while there have been incredible advances in cancer treatments in his 20 years of practice, there’s also an unfortunate reality: cancer can’t always be cured. He strives to convey it in a compassionate and clear way.

“Balancing … providing information but also providing hope, that’s the art of cancer care,” Booth said. “Balancing hope and reality, balancing treatment and quality of life and side-effects, that’s the tough part of this job.”

Booth said he thinks everyone would agree that a treatment that helps a patient live for extra months or years is very helpful. But when a treatment buys weeks with a lot of side-effects, then patient perspectives may differ.

In part that’s because the cancer drugs that can shrink tumours alsocome with side-effects, including fatigue, vomiting and hair loss.

A woman with long hair, seated wearing a black top and black glasses.
Not having treatment for cancer isn’t giving up, says Rachel Koven of Kingston, Ont.

Dr. Bishal Gyawali, a medical oncologist and associate professor at Queen’s University in Kingston, was motivated to press for changes when he noticed increased spending on treatments that don’t make much difference in patients’ lives while at the same time agencies didn’t put resources to what’s already been proven to work.

Gyawali previously treated people with cancer in Nepal, Japan, and the U.S. and saw the same trends there.

When attending oncology conferences, Gyawali said presenters would celebrate a two-week improvement in survival from a new treatment. Then, behind closed doors, other delegates would talk about the risks and costs of the drug.

“People are saying is this really meaningful?”

Gyawali aims to normalize asking such questions.

Quality of life and quantity

Rachel Koven’s husband, Ken Koven, was diagnosed in his late 40s with adenocarcinoma, which starts in gland cells of the esophagus tube. His cancer was found where the esophagus meets the stomach.

The father and avid runner treated having cancer like a battle, his wife said. He had nine months of palliative chemotherapy that’s given to relieve the symptoms of cancer and improve quality of life, but not meant to cure the malignancy.

The cancer spread. He then underwent radiation to the brain in Kingston, Ont. In 2016, about 16 months after the diagnosis, he died at age 49.

“For my husband, his hope was anchored in treatment,” Koven said. “However well-rounded the discussions we had, he would have always chosen treatment, and I can’t begrudge him for that because that is where he believed his strength was.”

Now, Koven feels families should ask more questions of doctors, such as:

  • How much time does this treatment offer?
  • What are the real costs and benefits of the treatment?

Koven said not having treatment is sometimes seen as throwing in the towel, but that can be misleading.

A man stands wearing glasses, a striped shirt, suit jacket and conference lanyard in front of a blue backdrop reading American Society of Clinical Oncology.
Dr. Bishal Gyawali wants people to ask whether a two-week improvement in survival is meaningful.

“Not having treatment isn’t giving up,” Koven said. “Sometimes by having treatment you are giving up. You are giving up time with your family. You are giving up a quality of life necessarily for something you are not trading off any extra days.”

Koven wrote an essay in 2018 on her experience as her husband’s caregiver in the Canadian Medical Association Journal. At the time, she was motivated “to contribute to the best possible life in the face of death.”

Now Koven advocates for the oncology field to “recalibrate” toward an emphasis on what brings the person joy rather than only focusing on treating their cancer. Finding novel treatments that will really benefit patients is also important to her.

Seek meaningful answers

Dr. Elizabeth Eisenhauer ran more than 170 cancer drug trials in Canada, the U.S. and Europe. Now retired, Eisenhauer won the 2021 Canada Gairdner Wightman Award for investigating new cancer drugs and delivery approaches, including for Taxol, an anti-cancer treatment.

“It’s a good thing we are having so much interest in finding novel therapeutics for cancer,” Eisenhauer said. “But my goodness, let’s find the answers that matter to patients, too.”

Eisenhauer recalled how in the 1980s, scientists set an arbitrary number as a standard, worldwide indicator of safe tumour shrinkage for early clinical trial research.

After that, measuring whether a tumour grew by 20 per cent on a CT scan, the definition of progression, became an endpoint, or goal, for pharmaceutical companies running randomized trials, Eisenhauer said. Randomized trials are meant to guide whether a drug should be used as a standard of care by physicians.

“You have an answer sooner [using tumour shrinkage], but is it an answer that is meaningful?” she said.

Eisenhauer would like to see cancer clinical trials include more criteria.

“I think common-sense oncology from my perspective as a trialist needs to come from the perspective of trying to be sure that the trials that we design at least can capture the information that will be of importance to those discussions with the patient sitting in front of you.”

Eisenhauer said there aren’t a huge number of game changers in oncology every year, but many are available in Canada. She said costs to patients in terms of side-effects and time coming to the clinic also need to be considered.

A patient receives chemotherapy treatment for breast cancer in France.
Randomized trials are meant to guide whether a physician should use a chemotherapy agent as a standard of care.

Despite that, other Canadian researchers looking last year at use of treatments like chemotherapy or major surgery among more than 151,000 people who died found that a treatment was commonly given — in 41 per cent of cases — in the last 30 days of life but was potentially inappropriate.

So far, Gyawali said the common-sense oncology movement is gaining momentum worldwide and he’s received positive feedback from regulators, physicians, patients and payers.

Tom and Katherine Somerville now take time every day to enjoy moments together, like walking down to the pond near their farmhouse, going for a drive on a sunny day or listening to old tunes.

For them, quality of life includes loving glances.

“You appreciate that moment and you want to take it all in and those are the simple things that really are not so simple,” Katherine said. “They’re the important things.”

Death doulas

— Helping people at the end of their life

By

You may have heard of a birth doula – someone who provides non-medical support and advocacy throughout pregnancy, birth and after the baby has been born. More recently, so-called death doulas – people who assist at the other end of the lifespan – have been growing in popularity.

The role of death doulas is still relatively new, so the terminology and definitions of what they are based on what they do are in flux. They are sometimes referred to as an end-of-life doula, soul midwife, death coach, dying guide, death midwife and palliative care doula. The actual term used is often down to the preference of the practitioner and how they define their work, as well as cultural norms within the country they work in.

Death doulas are known to work in Brazil, Canada, the Czech Republic, Germany, Ireland, Italy, Japan, New Zealand, Russia, the UK and the US. They tend to provide support to people with life-limiting or terminal illnesses, focusing on improving both the quality of life and the quality of death someone experiences. This can include helping with funeral plans, talking about the processes involved around death, or helping someone with their care appointments.

Sometimes, the doula’s contribution is simply about being next to the person and providing company.

The work of a death doula can extend beyond the dying person. They can provide emotional and social support to family, friends and even neighbours – typically the informal carers and social network surrounding the dying person.

Doulas help those close to the dying person with the impending loss (so-called anticipatory grief). Some also carry out errands and chores to enable them to spend time with the dying person. They may also continue to visit those people after the death to support them as they grieve. Crucially, death doulas can enhance the links between professionals and the social support around a person by helping with communications and advocacy work.

Filling the gap

With healthcare systems and informal carers typically stretched beyond capacity, death doulas can provide a means to fill the gap and provide personalised attention. Someone can access doula support either privately or, depending on the doula, through voluntary means.

My colleagues and I recently examined how end-of-life doulas can be provided by the NHS. It noted that the flexibility of the services doulas can provide was not only helpful for the dying person but also for the wider healthcare system. It helped people who may otherwise not receive support due to service gaps, strict referral criteria, or lack of social support.

Beyond supporting individuals, some death doulas see community engagement as core to their role. They are keen to share information about the dying process and grief with others. They may host workshops or death cafes. Across this work, their contributions are to normalise talking about death, dying and loss in society.

Anyone can become a death doula, and it is not currently a regulated profession. There is a wide range of doula training available internationally, including online, provided either by individual doulas or by organisations such as Living Well Dying Well.

People at a death cafe
Death cafes give people the space to talk about the ultimate taboo.

Personal experience

In addition to their doula training, doulas bring their own professional and personal experience to the role. International research on death doulas has noted that many who have become death doulas have a background in professional healthcare, social care or education, and may already have some experience with death.

Those who have trained to be a death doula can be eligible to join a community of practice. Within the UK, End of Life Doula UK is a membership organisation for doulas, setting standards for doula practice and representing doulas. Similar organisations exist globally, including the International End of Life Doula Association.

Death doulas are not a replacement for specialist palliative care and cannot prescribe drugs. Their role is to support people in having a good death.

The growing demand for death doulas is one example of how society is questioning what a good death can be and how to make it happen. Other examples include discussions about assisted dying and improving death literacy. Rather than consider death a societal taboo, there is a growing recognition that people want to value the end of life and reshape how it is experienced.

Death doulas can play a pivotal role in supporting a dying person and those around them. Their support can be emotional and practical, often bridging the gaps in existing support or helping to signpost to relevant services. Not everyone may want a doula, but those who do may see it as someone who can guide them through a significant life process.

Complete Article HERE!

“I’m not afraid of dying…

But I’m not ready to give in yet”

Lisa Brassington spoke with us in October as she was receiving support from Marie Curie Hospice, Bradford. Here she talks about how the kindness of Marie Curie staff made all the difference to her wellbeing.

By Lisa Brassington

I was diagnosed with a brain tumour in 2011. I’ve had years of radiotherapy and chemotherapy, but I’m on the very last chemo now. After that, there are no more treatment options. The tumour has started to spread to my temporal lobe, so it’s affecting different areas of my body and I’m paralysed down one side. I now need a lot of support.

I used to go to the gym three times a week and I loved food and cooking. I love reading and history. I fostered and rescued Bassett hounds. I had a Bassett hound called Ralph who I walked daily, but I had to give him up. A fantastic rescue charity found him a beautiful home and they keep me updated on his progress. I’ll never be able to have another dog. That breaks my heart.

Before coming to Marie Curie Hospice, Bradford, I’d been stuck in my bedroom at home for over eight months. My husband and I had been looking for care that whole time and couldn’t find anywhere that could support my needs. I felt so unsafe and frightened. Eventually, we found the hospice, and now I feel so safe, cared for, and even loved.

Nothing better than a hug

The Marie Curie Hospice in Bradford is fantastic and it had such an impact on my outlook. It’s not just the unbelievable care they give, it’s their kindness as well. I’ve never experienced kindness like it here, and I’ll never forget that. The staff are always smiling, and I get hugs and lots of care and attention. There’s nothing more important to me than a hug.

Before I arrived, I hadn’t eaten for a long time, so I had no energy, but the food here is delicious and the nurses encourage me to eat. Now everybody is saying I’ve got colour in my cheeks – it’s amazing.

The nurses offered to take my bed outside

There’s a lovely bath here that I can use, and I have a beautiful view of the garden outside of my room, I can watch the squirrels and birds feeding on the bird table. The nurses even offered to take my hospice bed outside if I wanted them to. Because of my condition, I wake up and I don’t know what day it is. I’ve been FaceTiming friends and family thinking it was the evening, but it’s actually been the morning. The nurses write down on a board what day it is and who is supporting me, which is so simple but so helpful for me.

When I first arrived, I told the staff that I love dark, West Indian rum. They told me I can have some here, and so I have my little rum nightcap, which is lovely. Nothing is off limits.
— Lisa

The healthcare assistants and nurses always find time to come and charge my electrical devices, which keep me in touch with family and friends. They’re constantly busy helping people, I can hear their buzzers going off all the time calling them into different rooms, but they still find time to come and charge my things for me and spend some time with me.

A sense of achievement

The hospice has got a fantastic physiotherapist team who have helped me to use the gym. I’ve even taken four steps, which is amazing. It’s not just the sense of achievement for me, it’s the feedback the team gives. I constantly get praised and encouraged. I never realised how important encouragement was until I came here. They have given me some exercises, and I do what I can to try to get my body working.

We’re all dying… I’m one of them

I’ve had a fantastic life, I’ve done everything I’ve wanted to do, I’ve been everywhere I wanted to go. I’m now doing my bucket list. I’ve jumped out of aeroplanes, I’ve gone down to the Spinnaker Tower, I just love doing something different. I’d love to go on a zip-wire, in fact I had a joke with the team here about the hoist in my room!

It was frightening when I first heard the word “hospice” because I just thought of dying people. There’s nothing wrong with dying people, we’re all dying, but it scared me to realise that I’m actually one of them. Now, I’m not afraid of dying. In fact, sometimes, I think it’s going to be a release. But, I’ve always been a fighter and I’m not ready to give in yet.

Complete Article HERE!

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!