Category: Death Education

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How to Make End-of-Life Planning Less Stressful

— One tip: Do it over chocolate cake.

By Jancee Dunn

I recently hosted a strange family gathering: an end-of-life lunch.

It was my sister Dinah’s idea. She had been saying for months that it was time to discuss my parents’ final wishes while they were both still able to weigh in.

But I kept putting off the conversation. Who wants to think about it, whether it’s your own or the death of someone you care about?

Research shows that fewer than one third of U.S. residents have advanced-care directives, or detailed medical instructions in the event they can’t communicate their own wishes. Without such instructions, loved ones are left to use guesswork, which can be confusing and chaotic.

So I pushed past my reluctance and invited the family over to talk about everything from their positions on resuscitation and funeral plans to who will take their cats. I even tried to make things festive by ordering pizza and baking a chocolate cake.

I learned things about my family that I never knew: My mom and dad don’t want a memorial service. (“We don’t like big gatherings, whether we’re alive or dead,” my mom explained.) My sister Heather, meanwhile, wants hers to be held at Starbucks. (A Starbucks rep said that while this was “definitely a unique inquiry that we don’t get across our desks often,” they declined to comment further.)

Our lunch was occasionally weird — my dad once read that your “cremains” can be pressed into a working vinyl record, and he briefly floated the idea — but the gathering wasn’t as sad or awkward as I imagined it would be. Instead, it was a relief to chat openly about my folks’ end-of-life wishes instead of repeatedly stashing them away.

If you’ve been putting off these discussions, here’s how to get started.

Schedule a conversation.

First, ask your relatives if they’d be open to a family meeting — in person or on Zoom — and then set a date.

If you need a conversational starter, Mirnova Ceide, an associate professor of geriatric psychiatry and geriatrics at Albert Einstein College of Medicine, suggested bringing up a news story about dementia. “You can say, ‘This got me thinking about how important it is for us to talk about these issues now,’” she said.

If you are the older relative, consider initiating the family meeting yourself, Alua Arthur, an end-of-life doula and the author of the upcoming book “Briefly Perfectly Human,” suggested.

It might feel uncomfortable to broach the subject, she explained, but you can think of getting your affairs in order as a posthumous gift to your family.

You are sparing them a scenario “where they are in the midst of tremendous grief, and then they’re also trying to figure out what to do with all your stuff and where to find your passwords and everything else,” Arthur said.

Prepare a checklist.

Create a document that the whole family can access, and assemble a checklist of topics and prompts to go over, Dr. Ceide said. A good source for questions, she said, is the end-of-life guidelines from the National Institute on Aging.

The two vital things to discuss in the initial meeting, Dr. Ceide said, are who will serve as a health care proxy, acting as your stand-in for health care decisions, and what directives should be in your living will.

“We cannot exert control over the timing and nature of our death,” Diane Meier, a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai, added. “You cannot anticipate exactly what the circumstances will be. So the most important thing to do is to identify someone you trust to speak for you if you are unable to speak for yourself when decisions need to be made.”

The institute also has a list of ways to create advance directives for little or no cost. (And Medicare covers advance care planning as part of your yearly wellness visit.)

Once you decide on your health care proxy and draft a living will, you can make it official by completing a durable power of attorney for health care, a legal document that names your health care proxy. Then distribute copies to your doctor, loved ones and, if you have one, a lawyer. (A lawyer is helpful but not required, according to the institute.)

Get reflective.

Our family had a long talk about how my parents wanted to spend their remaining years. Arthur, the doula, suggested asking: What is still undone in your life? “Because that helps you figure out where you want to place your time and energy,” she said.

We went over the things our parents still wanted to do, and how we could make them happen. My parents said they hoped to travel locally a bit more. My dad wants to attend his 65th high school reunion in Michigan (“at my age, they do it every five years”). Dinah, my sister, said she would accompany him.

Another helpful resource is the Stanford Letter Project, a free website that offers tools and templates for writing a “last letter,” a personal message of gratitude, forgiveness or regret to share with the people you love.

Consider regular check-ins.

End-of-life care is likely too big a topic to resolve in one meeting, Dr. Ceide said. She encourages families to have a regular conference call to check in.

Doing this can help you get on the same page so you’re all aware of, and planning for, issues like getting a ramp for your parents’ house, Dr. Ceide explained. You’re able to address “little things as they come so that when the bigger issues happen, you already have an infrastructure and a comfort with communicating together about these things.”

After our meeting, my father asked me to pack up a piece of chocolate cake to take home. “After all this death talk, I should probably seize the day,” he said.

Complete Article ↪HERE↩!

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Death doulas

— Helping people at the end of their life

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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↩!

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Planning for end-of-life expenses amid soaring costs

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In the realm of financial planning, agents and advisors diligently guide their clients through the complexities of retirement savings, investments, and insurance. Yet, there’s a critical aspect that often doesn’t receive the attention it warrants until it’s too late: the cost of dying. Recent data reveals a stark reality: The price tag attached to end-of-life care and funeral expenses is climbing, propelled by inflation and escalating health care costs. Let’s look at the implications of these rising costs and outline strategies financial professionals can employ to assist their clients in preparing for the future.

The unavoidable cost of dying

The Consumer Price Index indicates a notable 4.8% increase in funeral costs over the past year, signifying the upward trajectory of end-of-life expenses. An average American now faces more than $24,000 in medical and funeral costs at life’s end. Specifically, end-of-life medical expenses average more than $16,000, while the median funeral cost nears $8,000. These figures highlight an uncomfortable truth: even in death, one cannot escape the financial implications of inflation.

Deepening funeral costs

The average funeral in the U.S. costs between $7,000 and $12,000, encompassing expenses from caskets and embalming to transportation, plots, flowers, services, headstones and funeral home fees. Opting for more elaborate services or higher-end options can significantly inflate these costs. This financial burden is not one most individuals wish to impose on their relatives posthumously.

The true ‘killer:’ Medical care costs

Although funeral expenses are steep, the cost of medical care in the final stages of life is even more daunting. Medicare provides some relief but hospital, palliative care and hospice care costs continue to surge. Hospital stays can exceed $10,000 per day before insurance. Despite a preference for dying at home, only about 25% of individuals do so, with the majority ending their lives in some form of medical care facility.

Planning for estate and legal considerations

Beyond medical and funeral costs, there are estate and legal fees to consider. The process of settling an estate and distributing inheritances involves a complex web of legalities, adding another layer of expense that can easily propel total end-of-life costs beyond $50,000.\

Strategic planning for end-of-life expenses

  • Savings and investments. One approach is for clients to allocate a portion of their savings or investments specifically for end-of-life expenses. This proactive measure can mitigate the financial impact on loved ones.
    • Insurance solutions. Life insurance or specialized end-of-life insurance products can offer a safety net for funeral and other final expenses. However, seniors may face high premiums, and those with existing life insurance policies may be overinsured if they plan to use these funds solely for funeral costs.
    • Life insurance settlements. For seniors facing steep life insurance premiums or those with more insurance coverage than necessary, a life insurance settlement presents a viable option. Selling their policy in the secondary market can provide them with a lump sum to cover end-of-life expenses, freeing them from the burden of escalating premiums.

    The role of agents and advisors

    Financial professionals play a pivotal role in navigating these complex waters. By conducting policy appraisals, advisors can determine whether a life insurance settlement is appropriate, potentially reallocating those funds toward long-term care insurance or directly covering end-of-life expenses. This strategic planning can alleviate the financial strain on clients and their families, ensuring a more manageable and dignified end-of-life experience.

    As the costs associated with end-of-life care continue to rise, agents and advisors are tasked with a crucial responsibility: to help their clients plan comprehensively, considering not only the joys of retirement but also the inevitable costs of dying. By exploring all available options, from savings and investments to insurance products and life insurance settlements, financial professionals can guide their clients toward peace of mind for themselves and their loved ones. Inflation may be an unyielding force, but with thoughtful planning and strategic advice, navigating the financial aspects of end-of-life can be less burdensome, allowing individuals to focus on living their final days with dignity and grace.

    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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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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Not all mourning happens after bereavement

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

By and

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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