Month: February 2024

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I’d only met my neighbor a few times. When she died I took in her dog.

— As we walk the halls of the children’s hospital, I hope my neighbor is smiling, knowing how much joy her dog brings to everyone she meets

Lisa Kanarek with her dog Gaia, who she adopted after Gaia’s former owner died. Gaia is now a pet therapy dog, and the two regularly visit a children’s hospital. Gaia’s birthday is Valentine’s Day.

by Lisa Kanarek

In the early morning after Thanksgiving, I awoke to red lights blinking through the blinds. I slipped a long, puffy coat over my pajamas and rushed outside.

An ambulance idled in my 80-year-old neighbor Sandra’s driveway as paramedics rolled a gurney into her home. Although I hardly knew her, my neighbor’s last trip to the hospital would set off a ripple effect that would change my life and affect others she’d never met.

I remembered Sandra had a large dog, so I texted her friend, Gilda. She took care of the pup any time my neighbor was away, and Gilda and I had exchanged numbers once. Gilda was out of town and told me where to find the spare key to Sandra’s house.

During the three years my husband and I lived next door, I had only been inside Sandra’s home twice. The first was a few weeks after we moved in. I rang the doorbell, and Sandra, dressed in a colorful skirt and blouse, invited me in. I guessed she was in her late 70s.

After introducing myself, her dog walked up to me, sniffed my shoes, then lay on her side.

“I’m Sandra, and this is Gaia,” she said. “She loves having her stomach rubbed.”

I liked my neighbor immediately. She was direct and matter-of-fact with her conversation.

“Trash pickup is on Mondays, and introduce yourself to the security patrol so they’ll know who you are if you need them,” she said as she wrote down her phone number and the security number. She told me about neighborhood parties. “I don’t have time for those,” she said. “I have other things I’d rather do.”

The second time I saw her was a month later when I brought her a plant. She had thanked me for the gift but hadn’t invited me in.

I thought of Sandra and our last conversation as I turned the key and stepped inside her home. The caramel and white husky strolled toward me, her head down and her eyes locked on mine.

Unable to remember the dog’s name, I looked down at the silver tag on her collar. “Hi, Gaia,” I said. She dropped to the ground and rolled on her back so I could rub her white belly.

I texted Gilda to ask if the pup could stay with us until she came back to town. “Sure. Thank you!” she wrote back. During the next few days, Gilda called to tell me she was trying to find someone to watch the dog while Sandra was in the hospital. I told her not to worry; my husband and I would take care of Gaia. I walked her twice daily.

A week later, when Sandra returned home, Gilda temporarily moved into the second bedroom and became her full-time caregiver. As my neighbor’s health deteriorated, Gilda and I became friends. I asked her if I could continue my walks with the dog.

Each time I picked up Gaia, Gilda and I chatted for at least 10 minutes. During one of these conversations, she asked me a question I wasn’t expecting.

“Do you want to keep Gaia when Sandra is gone?”

“She’s not going to live with you?” I asked.

“I wish she could, but we might be moving, and the new yard is too small for her,” she said.

“We’re happy to adopt her,” I answered. “We love Gaia already.”

>Less than two weeks later, Gilda texted me: “The hospice nurse is on her way. I think it’s time.” Within an hour after I arrived at her home, my frail neighbor took her last breath. I waited in the kitchen as Gilda and her husband said their tearful goodbyes.

The hospice nurse called the funeral home, and Gilda’s husband stepped into the kitchen. He patted Gaia on the head and scratched her back. “It’s time to take her to your house,” he said.

I attached her faded orange leash to her matching collar. By the time we crossed Sandra’s driveway and stepped onto my lawn, tears dripped onto my coat. I was mourning a woman I’d only talked with twice, but I felt connected to her through her animal companion, now mine. For weeks, I watched Gaia closely, knowing she would be sad, confused and possibly disoriented moving to a new home.

A month after Sandra died, I completed training as an end-of-life doula. Gaia was calm on our daily walks, even around the small children who stopped to pet her, so she seemed to be a good match as a therapy dog.

I finished the online training with Pet Partners, passed the in-person test and then applied to volunteer at a local children’s hospital.

On our first day at the hospital, I hid my shock at seeing a young girl with a shaved head and tubes attached to her arm, a patch on her hand to hold the IV needle in place. I knew the hospital specialized in treating complex cases, but I hadn’t mentally prepared for what I would find behind each door. Gaia had a different reaction, not hesitating to pad up to the bed and let the girl scratch her behind her ears.

Now, every other week, I slip Gaia’s purple therapy dog vest over her neck, and we head across town to see patients and their families. Before leaving the hospital room, I hand the child a trading card with Gaia’s picture on the front and facts about her on the back: favorite food, activities she likes and her birthday. When I could not confirm her date of birth, I listed my neighbor’s birthday, Feb. 14.

More than eight months later, I’m no longer surprised by the young patients we see. I follow Gaia’s lead and focus on making the children smile. They rub her back and tell me about their pets. Recently, one little boy asked for her phone number, while another told his mom, “Look at her badge, Mom. She’s a doctor!”

Gaia’s life changed when she became part of our family. She interacts with the kids down the street (her fan club) during our walks, and she provides laughter and levity to sick children, all with her tail wagging. She goes with us on road trips and to outdoor festivals where she knows that people will stop to run their hands down her fluffy back or ask her for a high-five.

My life is different too. Meeting dozens of people during our visits has brought out the extrovert tendencies I lost during the pandemic. Before I knock on each patient’s door, I breathe in, then greet families with confidence, knowing the reaction my sidekick will receive. The same skills I’ve learned through being with Gaia, I use as an end-of-life doula. One of the first ways I bond with a patient or a family member is through a conversation about our dogs.

Adopting my neighbor’s dog has allowed me the opportunity to pay it forward in ways I’ve never experienced before. As we pass through the halls of the children’s hospital, I think of Sandra and hope she’s smiling, knowing how much joy Gaia brings to everyone she meets.

Complete Article ↪HERE↩!

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Senior suicide

— The silent generation speaking up on a quiet killer

Graham and Bruce from the Ettalong men’s shed in NSW.

Over-85s have become the Australians most susceptible to suicide and a general lack of support is threatening to make the problem worse

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The age group most at risk of suicide may not be the one you expect.

The highest rate of suicide in Australia, for both men and women, is among people over 85, at 32.7 deaths per 100,000 for men and 10.6 deaths for women, respectively.

The global picture is similar. People over the age of 70 kill themselves at nearly three times the rate of the general population. Suicide attempts are also more lethal among older people, with US data showing that about one in four suicide attempts of older people result in death, compared with one in 25 among the general population.

But even these numbers are likely to be underestimates, says Prof Diego De Leo, emeritus professor of psychiatry at Griffith University.

Unless the death of an older person is very clearly a suicide, it is not likely to be investigated, he says, and deaths relating to misuse of medication or even falls that may have been deliberate are often assumed to be the result of senility or frailty.

“It’s widely reported in literature that there’s much more interest in scrutinising the causes of death of a young body than of an old man,” he says.

Helen Bird, 73, from the inner west in Sydney, believes her grandmother’s death fits in this category.

In 1985, Bird got a call to say that her grandmother Olive, 82, had been found in her nursing home room in Hobart with a serious head injury after falling. She died in hospital shortly after. Bird is convinced her grandmother’s death was suicide, knowing that her grandmother had been depressed and had been stockpiling her medication.

Trained nurse Helen Bird
Trained nurse Helen Bird believes her grandmother suicided in a nursing home, although the death was not recorded as such.

“Nothing stacked up,” she said. “I’m a nurse. But nobody ever asked a question. It was a fall, no one questioned it. It was something that really nobody wanted to hear about.

“It’s something that’s always been with me, with great sorrow really,” Bird says. “She felt, I suspect, there was just nothing more to live for, and that’s really, really sad.”

De Leo says there are very different assumptions around suicide for younger and older people. While suicide by a young person is treated as a tragedy and a mystery, an older person’s suicide is often seen as a rational decision.

“It’s this assumption: ‘he was making a balance between pros and cons in life and he discovered the cons were more than pros and he decided then to exit life’, it’s a rational balance,” he says.

Dr Rod McKay, a psychiatrist with a clinical practice focusing on older people, says it is sometimes assumed that someone dying through suicide later in life has less impact on people.

“Someone dying through suicide later in life does have a different impact on those who know them, but it’s not lesser,” he says.

Both McKay and De Leo are keen to draw a distinction between suicide among older people who are depressed and voluntary assisted dying (VAD), which is now legal in every state in Australia under tight restrictions.

“If someone comes to me and says ‘I want to die because I’m depressed and I see no solution to my depression’, well, as a physician I have to do my maximum best to intervene and try to improve the depression of this person, and I can,” says De Leo. “But [if someone comes with] chronic pain, chronic suffering, no hopes for improvement and inevitability of a progression of the suffering … then I feel different.”

McKay says well-meaning attempts to respect individual choices in regard to VAD, may have meant that physicians have not been proactive in referring older people for treatment of depression.

“That debate and the sensitivities everyone is feeling about trying to act respectfully, risks not identifying or investigating depression or reversible factors to the degree that we might,” he says.

A lifeline for men

Men die by suicide at much higher rates than women across all age groups. Among older men, loss of purpose and identity after retirement, weaker connections to children and grandchildren and to social networks can all be factors.

“We’ve never had anyone here who has taken their own life, or entertained that, that I know of,” says Bruce McLauchlan, president of the Peninsula Community Men’s Shed in Ettalong, an hour and a half’s drive north of Sydney, knocking on a wooden work bench. “Maybe, we hope, it’s the contribution of our shed that helps.

“We look for these things: a person who was lively and talkative goes quiet, then we say: ‘Mate, everything OK with you? Anything we can help with?’. Because we are a family,” McLauchlan says.

The Ettalong group, part of the global men’s shed movement, opens its metalworking and woodworking sheds three mornings a week. On a rainy Thursday, the men are just finishing their monthly barbecue lunch, which is sponsored by a local funeral home.

“It’s publicity for them,” laughs Graham Checkley, 84, a retired Baptist minister who is the group’s welfare officer. “We go to a lot of wakes.”

The group is a lifeline for a lot of men, especially after retirement or bereavement. McLauchlan started coming 12 years ago after his wife died. “The men’s shed helps me manage my grief. Otherwise, I’d be sitting at home watching TV all day.”

Garrick Hooper, 73, started coming three years ago after he retired as a taxi driver, and is still coming, “much to my amazement”.

“I always knew about it and I thought: ‘I’ll be avoiding that like the plague, I’m meaningfully employed.’ And then there comes a time that you’re not and you become officially elderly,” Hooper says. “When you retire, you’ve got to redefine yourself, and that’s just how it is.”

Having a laugh together is a big part of the Ettalong Men’s Shed.
Having a laugh together is a big part of the Ettalong men’s shed.

McKay says this sort of social intervention is incredibly important, and older people have far more resilience than they are often given credit for.

“The vast majority of older people don’t feel as old as other people view them as,” he says. “We look at older people, including older people with lots of problems and say ‘I couldn’t cope with that’. Whereas most older people cope well … so we project that on to them.”

Studies show psychological wellbeing actually improves into older age, though depression goes up again in the over-85 age group.

When that happens, McKay says, social interventions are not enough.

“Older people have extremely low access to psychological treatments, the lowest of any age group,” he says.

This can be as a result of unconscious ageism among medical professionals and a sort of therapeutic nihilism that sees depression as an inevitable part of old age and not something that can be treated.

When older people do receive treatment for depression, it can make a huge difference.

“We know that when you look at things clinically, if there is mental illness there, the likelihood of response to treatment is similar to younger people,” McKay says. “There are a lot of social factors that can be addressed, sometimes there are simple medical factors that can be addressed that can make a huge difference in whether someone sees suicide as an option or not.

“It continues to amaze me sometimes when I meet people and see how poor their quality of life is and then with a good review from a geriatrician or a GP who has the time to do it – and it does take time – just the improvement they can have in their quality of life.”

Complete Article ↪HERE↩!

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Being There for a Loved One’s Final Breaths

— Can our presence at the last breaths of a loved one help us heal?

By Elaine Soloway

My mother’s last words to us were, “Drive carefully.” She had been admitted to a Chicago hospital a few days earlier after signs of a heart attack. It was Dec. 19, 1981, just shy of her 69th birthday on January 30.

As directed by Mom, with my spouse at the wheel, we drove silently home, grateful she was in the good hands of her internist and in one of Chicago’s most prestigious medical centers. But in the middle of that same night, we were awakened by a phone call. I lay silent as my spouse picked up the receiver. I listened, then watched as he pulled a tissue out of the nearby box and handed it to me. “Your Mom died,” he said.

I had no idea her condition was that grave. I pummeled my pillow, soon damp with my tears, shattered I had not been there for her final breaths.

They are likely thinking of my eventual last breaths and are hoping to avoid the trauma and frantic flights that would get them to me in time.

That long ago scenario has resurfaced because my adult children, who live on the East Coast, are asking me to move from Chicago to Boston where I’d be closer to them and my grandchildren. I am 85 and gratefully in good health. But they are likely thinking of my eventual last breaths and are hoping to avoid the trauma and frantic flights that would get them to me in time.

I understand my children’s worries. When my mom died, I dreaded my call to my brother, who lived in Kansas City, Missouri. “Why didn’t you let me know it was so serious?” he charged. “I could’ve flown there and seen her before she died.”

My apologies tumbled with my tears. “I didn’t know it was so serious,” I said. His grief, and my guilt, affected our close relationship. It was as if I had deliberately kept silent because he was her favorite.

Gratefully, we moved on to have a loving relationship. Frequent phone calls and occasional visits to each other’s town were salve. When he became seriously ill at 83, I traveled to see him. But when he died a few days later, I was not there for his final breaths.

‘Please Don’t Let Daddy Die’

Long before my mother’s death, I missed the last breaths of my father. He was 47, a heart attack fueled by diabetes, smoking three packs of Camels a day, and obesity. It was 1958 and I was a 20-year-old student at Roosevelt University when I was called to the school’s office to take a phone call from my uncle. “Get to the hospital right away,” he said.

Hospice workers report that some people who are dying wait to be alone for their final breaths.

I remember racing down several flights of marble stairs. “Please don’t let Daddy die,” I repeated as I sought a cab. But Dad was already gone when my uncle had called. My uncle met me outside of Dad’s room. And with his arm around my shaking body, said, “I’m so sorry; he’s gone.” I missed his final breaths, but I’m certain his labored words would have included, “I love you, Princess.”

My second husband, Tommy, was in hospice at our home after suffering several years of frontal temporal degeneration (FTD) and lung cancer. Neighbors helped me move our queen-sized bed to a different corner of our bedroom and assemble a hospital bed with guardrails. Although some had urged me to move Tommy from the hospital directly to a hospice center, I refused. I wanted him to know I was with him ’round the clock, not miles away where he might feel abandoned, and I bereft.

“I’ll be downstairs,” I told him one night. “And I’ll be up to kiss you goodnight before I go to sleep.” He smiled and squeezed my hand. I had barely settled on the couch when the hospice worker appeared at the top of the stairs. “He’s gone,” she said.

I learned this pause is not unusual. Hospice workers report that some people who are dying wait to be alone for their final breaths.

Now I have far outlived both parents and a husband. I doubt that fact has mollified my children’s concern about the 984 miles that stretch long and unknown between us. I am grateful for our strong relationship. I understand that their careers and own family obligations have skimmed our in-person meetings in Chicago to just a few times a year.

Looking for Peace

But what if I did heed their request and slice those miles to a more manageable five-minute car ride away? Then, if my fatal day arrived in their own backyard, they might be able to be part of a Jewish ritual that could bring all of us peace.

“So often, the experience of a loved one dying gets crowded out by the emotional needs and agendas of family members.”

In my search for end-of-life healing, I found “The Last Breath — Enriching End of-Life Moments” published in the medical journal JAMA by Dr. Martin F. Shapiro, who is a member of the Department of Medicine at Weill Cornell Medical College in New York.

He writes, “In Jewish tradition, the soul leaves the body with the dying breath, and it aids the soul on its journey if those present say a prayer, ‘The Shema” (“Hear O Israel, the Lord is our God, the Lord is One”) as the individual breathes their last breath.”

In his remembrance of his own mother’s death, Shapiro explains, “I certainly did not believe that our words had provided Mom with a ticket to heaven … what we did discuss, and all agreed on that it was a wonderful experience … So often, the experience of a loved one dying gets crowded out by the emotional needs and agendas of family members. Saying this prayer structured our experience in a positive way.”

I realize that even if I did move to Boston, we could emulate the scene in Chicago when despite living in the same city as my parents, or just downstairs from my husband, I missed their last breaths. But at least they would not have to endure an airplane ride with their hearts mimicking a flight’s turbulence.

Should last breaths be enough of a reason for me to move 984 miles away from my current home?

I’ll leave that to my children.

Complete Article ↪HERE↩!

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A cancer patient had decided how to die.

— Here’s what I learned from her.

For those with a terminal diagnosis, it’s getting easier to control death, but the process remains complex

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I first learned about “medical aid in dying” last spring when my sister, Julie, who suffered from advanced ovarian cancer, chose to end her life — in accordance with New Jersey law — after all realistic treatments had been exhausted and the pain medicines prescribed could no longer alleviate her suffering. At that time I didn’t know anyone else who had taken this step. While Julie’s hospice social worker provided answers to our questions, there was much I didn’t know about medical aid in dying at the time she died at age 61, much that I wish I’d understood better.

After Julie’s death, Lynda Shannon Bluestein, 76, became one of my teachers. The married mother of two also suffered from late-stage ovarian — and fallopian — cancer.

In a series of conversations last fall Bluestein told me she had wanted to plan for medical aid in dying when her condition worsened, but medical aid in dying, or MAID, is not legal in her home state of Connecticut. However, it was legal in nearby Vermont, but barred to nonresidents. Last year Bluestein sued the state to eliminate the residency requirement, which put her on front pages throughout New England.

Last March, when her chemotherapy regimen become too much to bear, she stopped treatment and began hospice care. By May she’d won her court case and the right to utilize Vermont’s medical aid in dying procedures

Like others who want to use life-ending medications, Bluestein had to follow a carefully prescribed process, which begins with a terminal diagnosis. Following Vermont’s MAID law, known as Act 39, Bluestein made two verbal requests to her attending doctor, at least 15 days apart, then made a written request signed by two witnesses who were 18 or older.

As she told me, “My two witnesses had no interest in my estate and no influence on my life [and] they weren’t related to me in any way.” (This ended up later sparking a journalism controversy when it turned out one of the witnesses was a columnist from the Boston Globe, who had been writing about Bluestein.) As a final step, a second physician reconfirmed that she met all the qualifying criteria.

By October, when we first spoke, Bluestein had met all the requirements. And so Diana Barnard, a Vermont family medicine doctor who is board certified in hospice and palliative care, called in the prescription for the mix of sedatives and barbiturates to the one pharmacy in the state that dispenses them. They would be held there until Bluestein needed them and would cost her $700 out of pocket, since Medicare, her insurance provider, does not provide coverage.

I spoke with Barnard about what happens during the procedure. “It’s harder to hasten a death than you might imagine,” she said. Five powerful medications are currently used, including diazepam, digoxin, morphine sulfate, amitriptyline, and phenobarbital. Death usually comes within 90 to 120 minutes but can take longer, she explained.

Bluestein completely understood what would happen after she swallowed the lethal mix of medicines. When we last spoke by phone, she told me she worried that if she waited too long, she’d be unable to ingest the drugs or would throw them up. When it became clear over the year end holidays that her health was deteriorating rapidly, she chose her date.

On Jan. 3, she and husband, Paul, drove to a private hospice facility that provides “a safe and caring space” for patients to end their lives.

Barnard explained that when a patient is ready to take the meds, they, a relative or friend would mix the drugs with water or apple juice. It’s crucial to imbibe the entire potion within two minutes for the greatest efficacy, said Barnard. Within a couple of minutes, patients lose consciousness, she said, and “appear to be unaware and not experiencing external stimuli,” with just the heart and lungs still working. Then comes the waiting for the end.

The 2022 Oregon Death With Dignity annual summary reported rare complications such as difficulty swallowing and regurgitation, but Barnard said there are precautions that can prevent most of them. (Oregon is one of 10 states plus the District of Columbia that now allow MAID.)

For instance, Barnard makes sure her patients can swallow effectively and can drink the whole mixture at once (some people practice with a placebo or view a video enactment of how to take these drugs at bedside).

On the morning of Jan. 4, now in Vermont, Bluestein and her husband Paul got up early, he said, and after the rest of the family arrived, he gave her the premedication (which makes the patient calm and drowsy, though not too drowsy to take the next step). After 30 minutes, the hospice owner came in to mix up the life-ending cocktail. He asked her if she was ready, and according to Paul she replied, “I’m so happy I don’t have to suffer anymore.” She drank it all — quickly.

Bluestein was unconscious within five minutes, her husband said. “She looked like she had fallen asleep peacefully. … A lot of the pain that was in her face went away, and I was grateful.” She was pronounced dead by a hospice nurse after just 25 minutes.

A few weeks after Bluestein’s death, I asked Paul Bluestein about the pain she had endured. He replied in a text: “There are some things in life no one should have to see and one of them is watching someone you love in pain.” It was “intolerable” and “undescribable.”

During my last phone call with Bluestein, she made a point to say that making her plan “was extraordinarily difficult. You really have to want to do this a lot, have a fair amount of money, a lot of flexibility, and be very well connected to accomplish this.”

I understood exactly what she meant, as the same had been true for my sister, who, while suffering, had to arrange this last medical procedure.

For critics who fear that MAID could make it too easy for someone to take their own life, or to pressure someone else to take theirs, I offer Bluestein’s words, along with my sister’s experience.

It’s not an easy process, and requires deliberation and intent, and the sign-off from others. But it offers an end to much pain and suffering, and that is a gift to those like my sister and Lynda Bluestein.

Complete Article ↪HERE↩!

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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.”

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Five of the best books about grief

— Moving memoirs and a magic-realist novella are among these stories that can help provide comfort and perspective

Michael Rosen, whose Sad Book deals with the death of his son.

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When it comes to grief, a list of a thousand books wouldn’t be enough. This small selection is offered in the hope that it might contain something that provides solace – or at least that it might point the way to something that does.

Grief is the Thing With Feathers by Max Porter

The premise of this poetic novella – giant crow moves in with bereaved family after mother dies – sounds unlikely. But through this brilliant semi-allegory, Porter captures how loss can upend a family, seemingly stretching space and logic in surreal ways. Told through voices of two boys, their father, and a shapeshifting crow, this is a funny, frightening and loving experiment in magical thinking. As an adult who was bereaved as a child, I approached this tale with some trepidation – fearing it might cut too close. In fact, it provided a kind of fierce comfort – holding pain up to the light, and aslant.

Sad Book by Michael Rosen

Grief might not always be beyond words, but it sometimes needs little elaboration. This spare book, written about the sudden death of Rosen’s son, Eddie, illuminates how grief’s complexity can be rendered through seemingly simple words and images. “Who is sad?” , Rosen writes. “Sad is anyone. It comes along and finds you”. This is not strictly a children’s book, but a book that recognises how acutely grief can speak to the child within us. Quentin Blake’s grey wash illustrations create a space for sadness to breathe.

You Are Not Alone: A New Way to Grieve by Cariad Lloyd

Guests on Lloyd’s award-winning podcast Griefcast have included those who have experienced the death of a loved one by suicide, those who have lost siblings, children, parents and close friends. Lloyd’s brilliant book draws on excerpts from these podcast interviews, together with her own account of negotiating grief – her father died when she was 15. This is an outward-reaching guide, full of humility and humour. A reading list at the book’s close offers further resources and a “handrail through the grief fog”.

Time Lived, Without Its Flow by Denise Riley

Sixteen months after her son’s sudden death, Riley writes of being “superficially ‘fine’” but “with an unseen crater blown into my head”. Moving in diary-like intervals, Riley brings her poet’s skill and formal ice-cold grace to this tender, philosophical account of “an altered condition of life” – the “stopping of time” that occurs after the death of a loved one.

Late Fragments: Everything I Want to Tell You (About this Magnificent Life) by Kate Gross

Kate Gross was 34 when she was diagnosed with terminal bowel cancer. She died two years later, when her twin boys were just five years old. Gross wrote this luminously beautiful memoir-cum-commonplace book partly as way of articulating her own grief for the things she would not live to see and partly as a legacy and love letter to those she left behind. A clear-eyed and extraordinarily uplifting book.

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Not all mourning happens after bereavement

– For some, grief can start years before the death of a loved one

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For many people, grief starts not at the point of death, but from the moment a loved one is diagnosed with a life-limiting illness.

Whether it’s the diagnosis of an advanced cancer or a non-malignant condition such as dementia, heart failure or Parkinson’s disease, the psychological and emotional process of grief can begin many months or even years before the person dies. This experience of mourning a future loss is known as anticipatory grief.

While not experienced by everyone, anticipatory grief is a common part of the grieving process and can include a range of conflicting, often difficult thoughts and emotions. For example, as well as feelings of loss, some people can experience guilt from wanting their loved one to be free of pain, or imagining what life will be like after they die.

Difficult to define, distressing to experience

Anticipatory grief has proved challenging to define. A systematic review of research studies on anticipatory grief identified over 30 different descriptions of pre-death grief. This lack of consensus has limited research progress, because there’s no shared understanding of how to identify anticipatory grief.

Therese Rando, a prominent theorist, has proposed that anticipatory grief can help prepare for death, contributing to a more positive grieving experience post-bereavement. Rando also suggests that pre-death mourning can aid with adjustment to the loss of a loved one and reduce the risk of “complicated grief”, a term that describes persistent and debilitating emotional distress.

But pre-death mourning doesn’t necessarily mean grief will be easier to work through once a loved one has died. Other research evidence shows that it’s possible to experience severe anticipatory grief yet remain unprepared for death.

Carers should seek support

Carers of people with life-limiting illnesses may notice distressing changes in the health of their loved ones. Witnessing close-up someone’s deterioration and decline in independence, memory or ability to perform routine daily tasks, such as personal care, is a painful experience.

It is essential, then, for carers to acknowledge difficult emotions and seek support from those around them – especially because caring for a loved one at the end of their life can be an isolating time.

Where possible, it can also be beneficial for carers to offer their loved one opportunities to reflect on significant life events, attend to unfinished business, and to discuss preferences for funeral arrangements. For some, this may involve supporting loved ones to reconnect with friends and family, helping them to put legal or financial affairs in order, talking about how the illness is affecting them, or making an advance care plan.

Talking is key

Living with altered family dynamics, multiple losses, transition and uncertainty can be distressing for all family members. It may be difficult to manage the emotional strain of knowing death is unavoidable, to make sense of the situation, and to talk about dying.

However, talking is key in preparing for an impending death. Organisations who offer specialist palliative care have information and trained professionals to help with difficult conversations, including talking to children about death and dying.

Navigating anticipatory grief can involve self-compassion for both the patient and carer. This includes acknowledging difficult emotions and treating oneself with kindness. Open communication with the person nearing the end of their life can foster emotional connection and help address their concerns, alongside support from the wider circle of family and friends.

Extending empathy and understanding to those nearing death – and those grieving their impending loss – will help contribute to a compassionate community that supports those experiencing death, dying and bereavement.

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