Category: After Death Care

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Apes and Monkeys Have an Awareness of Death

Performing Grieving Rituals and Mourning the Deceased, Study Suggests

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Researchers say non-human primates exhibit an awareness of death.

Non-human primates like monkeys and apes appear to have an awareness of death in the same way humans do, scientists have said. After analyzing over 200 years worth of research into how primates deal with death, they found common behaviors emerged—including carrying their dead, defending the deceased from threats and exhibiting a grief-like response.

There are many stories about apes and monkeys grieving for their dead. For example, a BBC documentary in 2017 appeared to show a group of langur monkeys grieving for what they believe is a dead baby—even though it was actually just a robotic spy monkey.

The same year, scientists observed a chimpanzee using tools to clean the body of a deceased group member. A female sat down with the dead male and used a firm stem of grass to clean his teeth. The practice, researchers say, suggests chimps may have a more sophisticated response to death than we currently know.

Andre Gonçalves from Japan’s Kyoto University and Susana Carvalho from the University of Oxford in the U.K. say there is a huge amount of anecdotal evidence relating to they way non-human primates deal with death—but a review of the literature to find specific characteristics and behaviors has been lacking.

“For the past two centuries, non-human primates have been reported to inspect, protect, retrieve, carry or drag the dead bodies of their conspecifics and, for nearly the same amount of time, sparse scientific attention has been paid to such behaviours,” they wrote in a study published in Biological Reviews.

In their analysis of 240 reports, Gonçalves and Carvalho showed that specific responses emerge among different non-human primate species. Often this involves carrying the dead around—especially mothers and their dead babies. Species that are unable to grasp objects—such as lemurs and tamarins—are observed trying to carry their dead even though they lack the ability.

A chimp cleaning the teeth of a deceased group member.

They also found that group members defend the bodies of the deceased and returning to the body or site of death: “Such places may hold residual information about the event which can arouse curiosity or emotional distress,” they wrote. This behavior tended to happen when an adult died, rather than a juvenile. The researchers speculate this could relate to attachments, with members needing to re-categorize from living to dead—a behavior they say is essential to the grieving process.

In one anecdote about a family of chimpanzees studied by Jane Goodall, a mother named Flo died before her son Flint had become fully independent. After her death, Flint would stare at the nest they shared and returned to the site of her death. He exhibited signs of clinical depression and stopped eating and interacting with other group members. Eventually his immune system became too weak and he also died.

In another case, an adult male howler monkey was observed staying close to the corpse of a female for five days after her death, “suggesting close proximity between these individuals in life.”

“Considering all these findings and given their cognitive abilities, we argue that non-human primates are capable of an implicit awareness of death,” Gonçalves and Carvalho wrote.

They say more research will be needed to confirm whether non-human primates are aware of death—and to what extent they are. “It’s not an all-or-nothing ability,” Gonçalves said in a statement. “Awareness of death includes things such as animate/inanimate distinction, or the sensory and contextual discrimination of living/dead. The concept of death is something we humans acquire between ages three to 10. We can infer that non-human primates have some aspects of death awareness but, thus far, only humans conceptualize it at a higher order.”

The researchers also say further investigation could help shed light on the evolution of our own funeral practices: “Given that there exists a considerable gap in the fossil and archaeological record concerning how early hominins might have interacted with their dead, extant primates may provide valuable insight into how and in which contexts thanatological behaviours would have occurred.”

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What to Know When Choosing Cremation

By Ann Carrns

Americans are increasingly choosing cremation over burial, making it the new norm for end-of-life practices, a funeral industry report finds.

Demand for cremation — the disposal of a body using flame or heat — continues to outpace that for traditional burial, says the National Funeral Directors Association’s 2019 report on cremation and burial. The cremation rate surpassed 50 percent in 2016 and continues to increase, the association found. It is expected to rise to 79 percent by 2040.

The burial rate, meanwhile, is projected to drop to just 16 percent over the next two decades, which means that cremation “is no fading trend,” the association concluded.

Cremation is growing in popularity for several reasons, including cost, the association found. The median cost of a basic cremation — without visiting hours, a memorial service or any other trappings of a traditional burial — is about $2,400. By comparison, the median cost of a burial with a coffin and full funeral home services is about $7,400.

Cremation has generally become more culturally acceptable. The association’s research found that the proportion of people age 40 and older who feel it is important to have a religious aspect as part of a funeral has declined, to 35 percent in 2019 from about half in 2012.

As cremation becomes more popular, more funeral homes are starting to offer it, said Kurt Soffe, a funeral director in Murray, Utah, and a volunteer spokesman for the funeral directors association. Mr. Soffe said his funeral home has offered cremation since 2002. The association says about one-third of funeral homes now run their own cremation equipment, and more are expected to do so in the next five years to meet demand.

Options other than standard cremation are also starting to emerge. Twenty states now permit a process called alkaline hydrolysis, according to the Cremation Association of North America, but its availability is still somewhat limited. Sometimes called “flameless” cremation, the process uses a mixture of pressurized water and chemicals to dissolve the body.

And Washington State recently approved legislation allowing “above ground decomposition,” or composting, of human remains. The resulting soil will be returned to families, just as ashes may be returned after cremation. A company called Recompose is expected to begin offering the service in Washington as soon as next year.

As cremation and other alternatives eclipse traditional burials and funeral services, funeral homes are becoming more flexible in their offerings to remain competitive. Mr. Soffe said his funeral home, for example, had arranged a service for a man who had been a Harley-Davidson enthusiast. Before the cremation, Mr. Soffe said, the man’s body was displayed for viewing dressed in his motorcycle gear.

Here are some questions and answers about cremation:

What does the price of a cremation include?

A basic cremation — called “direct” cremation by funeral homes — generally includes pickup and transportation of the body, filing necessary paperwork, the actual cremation and the return of the ashes to the family, said Joshua Slocum, executive director with the Funeral Consumers Alliance, a nonprofit advocacy group.

Some funeral homes have their own cremation equipment, but others use outside contractors. If an outside provider is used, Mr. Slocum said, consumers should be careful to review the fees to be sure they are not charged twice for similar services.

Rates vary by location, he said, but a reasonable rate for a direct cremation is $800 to $1,200.

Don’t be pressured to buy a coffin. There’s no need for one if someone is being cremated, AARP advises.

The Federal Trade Commission says that no state or local law requires the use of a coffin for cremation and that the funeral home must inform you that alternative containers — such as those made of unfinished wood or even cardboard — are available.

Must I hold a memorial service before or after a cremation?

No. Add-ons like visiting hours or a memorial service are entirely up to you. “You can do everything, or nothing, before the cremation,” Mr. Slocum said. Families sometimes organize their own informal memorial gatherings after the cremation without involving a funeral home.

Are cremation prices available online?

The federal Funeral Rule requires funeral homes to provide prices for all services, including cremation, upon request by telephone or in person. But the rule, which took effect in 1984, doesn’t address online pricing. Consumer advocates are pushing for the rule to be updated to require funeral homes to post their price lists online.

The F.T.C., which enforces the rule, was scheduled to review it this year, but whether that will happen is unclear. Earlier this year, the commission said that the 10-year review period it uses was not mandatory, and the commission could change timelines if it chooses.

A commission spokesman didn’t respond to a request for an update on the review’s status.

One state, California, requires funeral homes with websites to include pricing information online, or to list services and note that prices are available upon request.

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Moving Forward After the One You Cared For Dies

Grieving caregivers typically face a challenging mix of emotions

By Julie Gorges

As anyone who has had a loved one die knows, grieving is a heartbreaking journey. When you’re a caregiver and the person you’ve been caring for dies, experts on grieving agree the psychological outcome and healing process are somewhat different. That’s especially true if your loved one had dementia.

I was the primary caregiver for my mother, who had Lewy Body dementia during the last years of her life. I learned that grief takes many forms, and it isn’t just about mourning someone after they die. When your loved one has dementia, you lose that person in an excruciating way — a little bit at a time. As a result, some of the grieving process begins to take place while you’re still caregiving.

After my mother died, I not only lost her, but part of my identity as a caregiver. My life had changed drastically overnight.

Other complicated feelings often come into play. “After caregivers lose the person they cared for, there is often less grief alone, but a mixture of other emotions,” explains Dr. Marc Agronin, a geriatric psychiatrist and author of The Dementia Caregiver: A Guide to Caring for Someone with Alzheimer’s Disease and Other Neurocognitive Disorders. “Those feelings may include sadness and uncertainty about the future, along with some degree of relief and a desire to move forward.”

After a Death: A Mix of Emotions

This was certainly true in my case. After my mother’s death, the emotions were overwhelming. I was relieved all of my heartbreaking duties as a caregiver were over. No more medical emergencies, constant worrying and sleepless nights. I also enjoyed my newfound freedom to take a vacation, go on a leisurely walk, spend quiet time with my husband or simply enjoy a book.

But there was a lot of guilt mixed in for feeling that way. I also felt remorse about the times I wasn’t the perfect caregiver and questioned whether I made the right decisions along the way.

On top of that, I felt lost. Caring for Mom had been my life for a few years. Most of my thoughts and feelings had revolved around her care. After my mother died, I not only lost her, but part of my identity as a caregiver. My life had changed drastically overnight.

Accept Your Feelings and Move Forward

So, how can you move forward will all the intense and contradictory feelings that come with the territory?

What I learned is that you have to accept all your emotions and be patient with yourself. Feel everything you need to feel. Lean on loved ones. Honestly discuss your thoughts and feelings with those close to you.

However, as time goes on, it’s important not to allow sorrow to become a way of life or dwell on all of the “should-haves” that interfere with recovery. In fact, you’ll need to forgive yourself for mistakes you think were made while caregiving and stop feeling guilty that you’re relieved to have your life back.

The goal is to let go of negative feelings and enjoy a productive life once again.

How is that accomplished?

After my mother’s death, I took an important step that helped me pick up the scattered pieces of my soul and begin living again.

I deemed the year after my mother’s death, my “year of healing” and listed three non-negotiable things I had to do each day. There was nothing new or revolutionary on my list. Just a few simple things that provided an anchor, ensured that I took the time to care and focus on myself and helped me get through a bad day.

My list included:

  • Read something spiritual and inspirational each day. If you’re a religious person, now is the time to embrace your spirituality and rely on your faith to help you move forward. It’s so easy to become sidetracked and allow time to slip by without any spiritual fortification. I realized daily reading, meditation and prayer were necessary every single day.
  • Exercise. I’m not talking about running a marathon or doing 50 deep squats. But, even if it was only for 15 minutes, I did something for both my physical and emotional well-being. Maybe I’d take a stroll through the park listening to the birds sing, do some Pilates or walk the dog around the block listening to soothing music.
  • Do something you love. I thought about what used to make me feel happy and brought fun and joy to my life. Then I made a point of putting those treasured activities back into my daily life. In other words, at the end of the day, I made sure that I did something just for me.

You know what? My list worked. Accomplishing these three things every day helped me feel calmer, more centered and, yes, happier.

I’d recommend making a list of your own. Maybe you’ll include laughing each day, spending time in nature, learning something new, being silly or enjoying time with loved ones.

Helping Others Helps Yourself

Perhaps one of the most important items to put on your list is to perform one simple act of kindness for someone else each day. Compassionate deeds and volunteer work can help you find meaning and purpose again.

“I think focusing on others helps a person to move forward,” says Vicki Tapia, author of Somebody Stole My Iron: A Family Memoir of Dementia and co-founder of AlzAuthors, a website featuring authors who write about their experiences related to Alzheimer’s and other dementias.

Tapia cared for both her parents with dementia before their deaths. “Doing something helpful outside of yourself can often be a balm to the soul, whether it’s lending a listening ear or volunteering to help with a support group for other caregivers,” she says.

Finding a New Perspective on Life

Losing someone you love changes how you look at the world and forces you to acknowledge that life doesn’t last forever. The experience can clarify your priorities and redefine your path. So, embrace the new you and your new life.

“Find a new role that provides meaning and purpose,” suggests Agronin. “This might involve renewed relationships with others, volunteer work, travel or some other pursuit that provides a sense of personal direction.”

Several months after Mom died, my husband and I took an anniversary trip to Chicago. Even though I have a fear of heights, I was determined to sit on one of those scary glass enclosures that jut from the Willis Tower Skydeck, a whopping 103 floors above the city. I had this overwhelming feeling that I had to start living again and this was the first step. So, I bravely forged forward onto the glass and I felt alive, empowered and revitalized.

I have faith that you’ll take that first step too. You will heal, move forward, and rediscover yourself. You will feel happy again. As Martin Luther King Jr. famously said: “Take the first step in faith. You don’t have to see the whole staircase, just take the first step.”

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Here’s How You Can Save the Earth, Even After Dying

Traditional funerals are terrible for the environment. But the green burial movement allows people to be kind to the planet, even after they’ve passed.

by &

If you’re planning a traditional Western funeral for a loved one, burial according to industry standards will cost you — in more ways than one. The materials typically used in the process, from embalming chemicals to casket varnishes and sealants, can seep into ground, polluting the water that you use every day.

In addition, U.S. cemeteries contain an estimated 15 tons of casket steel, enough to build almost all of the skyscrapers in Tokyo, according to TalkDeath, an online community dedicated to encouraging positive conversations around death and dying. Even cremation — often considered one of the most environmentally friendly options — spews fossil fuels into the atmosphere.

So what’s an eco-conscious funeral planner to do? A green burial uses biodegradable materials for caskets and shuns the use of chemicals to preserve bodies. That means adopters can help save the planet while saving themselves (or their families) money in the process.

To learn more about green burials, watch the video above.

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This is what it’s like to be a death doula

The founder of Going With Grace, Alua Arthur, shares how she found her way into death work and how she manages not to take her work home with her.

Alua Arthur

By Anisa Purbasari Horton

For many people, the thought of being surrounded by death (and have that be a central part of how they earn their living) can seem quite morbid. But for Alua Arthur, the founder of the end-of-life planning service Going With Grace, it feels exactly the opposite.

Arthur is a death doula—also often referred to as a “death midwife.” Arthur’s journey to becoming a death doula is a profoundly personal one, but she represents a number of professionals who are active in the growing “death wellness” and “death-positive” movement. As Fast Company‘s Rina Raphael previously reported, this movement rests on the notion that having a good death is “part of a good life.”

Fast Company recently spoke to Arthur about her motivations for becoming a death doula and how she copes with work-life balance as she helps others through the grieving (and often stressful) administrative process that comes before and after a loved one’s death. The interview has been edited for length and clarity.

Helping people become clear on what death looks like

A death doula is a non-medical professional who provides holistic support for the dying person of the family and the family members. I help the people who are close to death on what it looks like. After that, I help family members deal with their affairs.

I also work with healthy people. The way I conceive it, as soon as someone comes into any recognition that one day they’re going to die, that’s the time to start preparing for that, so I help them with an end-of-life plan. It’s where we write down all the stuff that’s going to be a pain. We get clear for what their desires are for life support, and who’s going to make the decisions for them. We walk through important information and documents, like where’s their birth certificate? Where is their retirement account? Where do they bank? 

I also help people who are terrified of death. I find that people are more afraid of the dying process than death itself, so with them, I do death meditations. This looks like us going through the eventual decline of the body, their systems shutting down, and their breathing becoming ragged. It’s an opportunity for the person to lay there with whatever it is they experienced. A lot of times, people experience a sense of peace after going through this process.

The desire to build a career around death

Growing up, I wanted to be lots of things. I really wanted to be an astronaut. I loved to read and immerse myself in another world. I also wanted to be a conductor. I applied to a music conservatory, but I ended up in a liberal arts school that had an okay music program. I got involved in student government and decided to go to law school. I worked in property law, starting with government benefits, and then I moved to domestic violence and then not-for-profit development. I fumbled around for 10 years and started getting really depressed, so I took a medical leave of absence. That’s how I found death work.

I met a woman in Cuba. She had cancer and was traveling, and we bonded. We spent 14 hours on the bus together, and I asked all the difficult questions. What would be undone in her life if the disease killed her? What does she think happens after she dies? Did she live with the recognition of death constantly? They were questions I never really had myself. That was the first time it hit me that death was very real and that we don’t talk about it enough. It became clear that I wanted to spend my career talking about death.

That was solidified when my brother-in-law got sick and died. It showed me how all the ways that we do it now are broken. We had so many questions—how do we transfer the title for his vehicle, and what should we do with his leftover medication? There was nobody to answer them.

A day in the life of a death doula

A typical day always includes a lot of emails. So many emails. The part of my job that stresses me out is the business part. God, it’s the worst! I need to go back to my vision of helping people feel less alone to keep me in clear focus.

I start my day checking on various things—with the people who are dying, how things were over the course of the night. I’ll also check on plans for any funeral procession. I do a lot of phone calls and talk to therapists who work with people that are dying. If I do have clients that are dying, I see them in the afternoon, or I will see my end-of-life planning clients.

These days, I also do a lot of education around death and dying. I’m doing a lot of talks to reach people about how to do this work because we’re all going to have to do it for somebody in our lives.

When it comes to work-life balance, I do things like meditate daily, exercise regularly, and drink a gallon of water every day. I just got my nails done. I don’t deny myself pretty things.

On death and relationships

I talk about death all the time with my friends and family. I think sometimes I can be a little bit annoying because I want people to be authentic in their decision-making. I tend not to tell people what to say or do, and I listen actively. My best friend and I, we always have challenges because she always wants to tell me what to do. It is a struggle for my friends who have a hard time with the concept of their own mortality, because I’m talking about it all the time.

I don’t push the issue with my friends who are uncomfortable, but with my family members, I do. For my dad, he first had to come around to the idea that I wasn’t going to be practicing law anymore. Being an African parent, he wanted me to be either a lawyer, doctor, or engineer. I was like, how about death? He was like, how about what? That was a little tricky. But eventually, we got around to talking about it. After all, I’m the one who’ll have to deal with it when it happens.

I think people actually want to talk about death, but they feel like they don’t have permission to do so because it’s “heavy.” Well, it’s a regular part of living. Without death we wouldn’t have life. It’s funny: when I meet someone for the first time and I tell them I’m a death doula, so many of them say, “Oh, when x died, I wish that you had been there.”

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People in western China smoked marijuana to bury their dead 2,500 years ago

— the oldest evidence of weed smoking in human history

In a tomb in western China, scientists discovered human remains and evidence of marijuana use from 2,500 years ago.

By Aylin Woodward

It appears people have been smoking weed for more than two millennia.

Researchers reported on Wednesday that they’ve found some of the earliest evidence of ritual cannabis smoking in the archaeological record.

The evidence comes from stone-filled braziers — a device used to burn a plant and fill the air with its vapors — that were unearthed in eight tombs at the Jirzankal Cemetery in the Pamir Mountains of western China.

Preserved in the 2,500-year-old braziers were traces of cannabinol (CBN), the compound that forms after tetrahydrocannabinol (THC) comes in contact with the air. THC is the most potent psychoactive agent in marijuana.

This wooden brazier with burnt stones in the center provides some of earliest evidence of ritual cannabis smoking.

The authors published their findings in the journal Scientific Advances. The chemical signature of THC residue in the tomb, they said, indicates that people in this region of China likely smoked marijuana during burial ceremonies, perhaps as a way to communicate with the dead.

“It’s the earliest strong evidence of people getting high” on marijuana, Mark Merlin, a botanist at the University of Hawaii, told USA Today.

This marijuana was potent

Marijuana is one of the most widely used psychoactive drugs in the world today, but the legacy of its use and cultivation spans millennia. The earliest known cultivation of cannabis plants occurred in Eurasia roughly 6,000 years ago, but it was used as a food crop and for hemp material — not smoked for psychoactive effects.

Previous evidence of ancient cannabis smoking came mostly from historical anecdotes, not archaeological evidence. Greek historian Herodotus wrote about ritual and recreational pot use around the same time that these braziers were buried in distant China.

Scientists also found cannabis seeds in a different 2,500-year-old Chinese tomb in 2006, but there was no evidence of smoking

Usually, wild cannabis ( Cannabis sativa) has lower levels of THC than its cultivated counterparts. But the residue in these Chinese braziers indicates that the type of cannabis smoked in them had higher THC levels than wild plants. It also had higher amounts of THC than the cannabis grown in ancient Eurasia, the authors of the new study noted in a press release

The authors aren’t sure whether the cannabis used in this region was intentionally cultivated to have higher amounts of THC (as it is today), or whether the people who conducted this burial had some other way of seeking out more potent plants.

Either way, they appeared to be aware that not all cannabis is created equal when it comes to its psychoactive qualities.

These tombs had evidence of human sacrifice

In the Jirzankal Cemetery, the archaeologists also found skulls and other bones with signs of fatal cuts and breaks, which they interpreted as signs of human sacrifice. They found a harp as well — an important musical instrument in ancient funerals and sacrificial ceremonies.

These clues from the past indicate that the burials had a ritual quality to them, and that smoking marijuana played a role in commemorating the dead.

The excavation of the tomb M12, in which evidence of the oldest ritual smoking of cannabis was found. In the photo, the cannabis brazier can be seen at the middle bottom edge of the central circle.

“We can start to piece together an image of funerary rites that included flames, rhythmic music, and hallucinogen smoke, all intended to guide people into an altered state of mind,” the study authors wrote.

Merlin told The Atlantic that this discovery does not suggest ancient Chinese people were into recreational drug use. Instead, he said, it was likely a spiritual practice — part of ushering the dead into the afterlife and helping the living commune with deities or the deceased.

Complete Article ↪HERE↩!

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How ‘Death Doulas’ Are Helping People at the End of Their Life

They’re changing how we approach end-of-life care.

by Kristen Fischer

To many people, the word “doula” refers to a childbirth coach. But doulas aren’t only available for when life begins — they can help when life ends too.

An end-of-life doula is a nonmedical professional trained to care for a terminally ill person’s physical, emotional, and spiritual needs during the death process. While you may never have heard of this position in the healthcare field, there’s quite a market for “death doulas.”

The role is also referred to as an “end-of-life coach,” “soul midwife,” “death midwife,” or “transition guide.”

Searching for a way for patients to have a “good death” has become increasingly important in the medical community. Last year the medical journal Behavioral Sciences devoted an entire issue to communication over end-of-life issues to ensure patients’ end-of-life wishes were realized.

“In the American culture, where the majority of people die in hospitals, death has been routinely denied, sterilized, and/or removed from view,” said Maureen P. KeeleyTrusted Source. Keeley, who is director of graduate studies at the Department of Communication Studies, Texas State University, wrote in the journalTrusted Source. “Talking about dying with the person that is terminally ill can relieve anxiety for both participants in the conversation, and it can help ensure that final wishes regarding treatment at the end of life are honored.”

Currently there a few organizations that administer credentials for death doulas, including the International End of LifeDoula Association (INELDA), International Doulagivers Institute, and Lifespan Doula Association (LDA).

Jeri Glatter, vice president of INELDA, said her organization has trained about 900 end-of-life doulas in the United States since 2015. The organization provides personal certifications as well as training to hospital staff members including hospice workers. In addition to popularity in the United States, there is a significant interest for training in Asia.

Individuals who seek a personal certification often go on to run their own businesses. An INELDA certification involves attending a training session and then applying for the credential. Several requirements, including hands-on work, must be completed to become certified, which takes the average person six to nine months and is quite rigorous, Glatter said.

Life as a death “doula”

For those who embark on the career, it’s quite a personal choice.

​Kelly Sanders, RN, an end-of-life doula from Michigan, worked as a nurse in the long-term care field for many years before becoming a death doula.

“I saw people die without any control over the process,” she recalled. “It seemed as soon as the terminal diagnosis came, the patient became invisible to family and friends. They would talk as if the patient was already gone, even while the patient was in the room.”

She said that hospice cannot provide all of the services a person needs — especially the emotional help — when they have a terminal prognosis.

“Hospice does a great job taking care of the medical aspect of dying, but due to the changing nature of healthcare compensation, little time was left for the other aspects of dying that are just as important for a peaceful passing,” she said. “End-of-life doula services fit that need.”

She said there is a big misconception that hospice provides the same services as a death doula.

“I think it was the overall idea of hospice, but because of Medicare/Medicaid cuts, hospice only has time to deal with the medical needs. They do not have the training to even do the work of a doula.”

Death doulas can fill a gap in care. People can work with a death doula before they reach a point where they qualify for hospice. And an end-of-life doula is able to devote themselves to a single person, going in without an agenda to fulfill that person’s needs.

What a doula does

Sanders said a huge part of the job is to establish trust and build a relationship with patients and their families. It’s important to respect their wishes and not influence their decisions, she said.

As part of her services for Peaceful Journey Home, LLC, Sanders is often asked to take family photos or assist patients in writing letters to ask for forgiveness. Some patients hire her to plan their funerals.

“The more time that you have with a person, the more you learn and it is easier to learn their life story and advocate for their wishes,” she said. Sanders said it’s important to be flexible during the process. When she notes a patient’s wishes and they change, she gently reminds them of their initial preferences but allows them to change their minds.

“It is their death, so they can certainly have the right to change focus,” she said. “Sometimes we don’t always know what we want, and we mold the idea as we go along.”

Some family members rely on the doula to remain present and keep them informed on the patient’s status while they take a much-needed break.

A death doula can also answer questions about the dying process and empower family members to create the kind of environment that the person dying has requested, said Christy Marek, an end-of-life doula from Minnesota who sees patients locally and offers her services via phone and video conference.

“We help family feel competent and central to the process and less afraid of the unknown,” Marek said. “It is a true partnership, and I think that’s the best support we offer for families — assuring them they are not alone.”

Typical services include helping patients create legacy projects or planning a person’s final days and moments. Mostly, Marek said she focuses on creating a safe space for clients to do the emotional and “soul” work needed to help them prepare for their death.

“I help the individual who is dying to stay close to what is most important in the time that remains, to focus on what is possible rather than on limitation, and to support their loved ones in staying as involved as desired as things progress,” Marek said.

One of the biggest advantages of having an end-of-life doula is the continuity of care and consistent support. Patients often transition from actively seeking curative treatment to no longer receiving treatment. Some are put in hospice, and some “graduate” from hospice before their death, Marek explained.

“These are all circumstances where care teams change and support systems get disrupted and lost. Having an end-of-life doula throughout the process of end of life ensures that there is a consistent supportive foundation that remains the same,” Marek said.

Family ties can help lead to a ‘good death’

Sanders said it is best when family members are actively involved with the doula to respect the patient’s wishes.

“I try to encourage and engage families to participate in the process, especially if they are not in agreement with the process,” she said. “All input is valuable, but I like to politely remind families that this is not their death. So, the dying person’s wishes and needs come first.”

“Many times, a patient is not able to articulate their wishes, such as cases of dementia, but the patient still deserves a lasting tribute,” Sanders said.

Marek said her goal is to serve the patient even if they forget they hired her, don’t remember what they initially asked for, or have different wishes than family members.

She said her ultimate goal is to get what the patient wants — even if she is hired by family members.

Aside from bedside manner, death doulas have to run their business. Their services might be too costly for some patients, and insurance is unlikely to cover their work.

Sanders said an individual package may cover 20 hours for $700 plus an additional fee if the patient wants more time with the doula.

Marek said that prices typically are flexible and can include a weekly or monthly retainer or individual sessions and packages. An end-of-life vigil, which takes place during the active dying process, can range from $1,500 to $3,500 or so.

Leaning ‘into’ the fear

Anyone who is struggling with their diagnosis or wants to leave something behind for family, may want to seek out a death doula.

Sanders loves her job but admits that it’s hard when a patient passes away. “That part never gets easy,” she said. “I take comfort that I was able to help them transition on their terms.”

“Our culture holds so much fear around death that when we find ourselves face-to-face with it, either our own mortality or that of someone we love, we typically don’t know what to do,” Marek added. “It’s incredibly scary to face into the unknown, so most of us do our best not to.”

But Marek said ignoring real life can be harmful.

“It affects not only the person who is dying, but the entire circle that surrounds them,” Marek said.

The presence of an end-of-life doula helps people “lean into” the pain and fear of the unknown. That frees up space and energy so they can experience the emotions including actual joys that come with death. She said the doula’s experience helping others through death can ease the process for both family and patient.

“The comforting presence of a doula enables opportunities for the dying to connect more deeply with loved ones and to enjoy the time that remains, focusing on possibility rather than only on limitation, on what they can control rather than on what they can’t,” Marek said.

She said she believes that many people would benefit from having an end-of-life doula because they can help foster connections even during an emotionally painful time.

“I believe a death doula — the openhearted presence of someone who won’t turn away in the face of suffering and will offer support to help us work with it rather than fight against it — would benefit everyone at end of life.”

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