Tag: Death Talk

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Former Ottawa paramedic on his experience with death…

‘I’ve got a busload of people up here in my head’

J.P. Trottier in 2006, when he served with Ottawa Paramedic Service.

By Bruce Deachman

J.P. Trottier was with the Ottawa Paramedic Service for 36 years – 21 as a frontline paramedic and 15 as public information officer. He retired in January 2017.

“I don’t know how many deaths I’ve seen, but it’s in the hundreds. I remember one shift doing three vital-signs-absent calls in a row. That was a busy eight hours.

“You just never know where you’re going to be in five minutes. Are you going to be in the middle of a crime scene? Are you going to be in somebody’s living room, somebody with abdominal pain? Somebody having a heart attack?

“Sometimes, it’s just the daily grind. It can be very humdrum, and then all of a sudden your next shift will be just crazy. You’ll do a shooting, you’ll do an elderly gentleman who’s collapsed at home and his vital signs are absent, you’ll do a childbirth call … you’ll do a whole bunch of different things.”

“You have some really horrible moments in the job, and you have some absolutely spectacular moments. Paramedics have what they call the holy-shit call. They take a look at the person and they know they’re in trouble — that that person is in deep trouble and probably minutes from dying. We call that the holy-shit call. It’s like, get to work. And you can tell after a little bit of experience — you walk into a room and look at somebody. And then it becomes a bit mechanical; your training kicks in and you don’t really think about it. But when you see them like that and 10 minutes later you’ve given your medication and taken your vital signs, or your partner’s taking the vital signs and you’ve slapped the oxygen on them or maybe put in an IV and put the medication in when all the vital signs are OK and off you go. And 10 minutes later when they’re looking much better, it’s an amazing thing to see. It’s absolutely beautiful. It’s absolutely the best part of the job.”

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“You don’t forget many of them. The difficult ones you don’t forget. I tell people that I’ve got a busload of people up here in my head, waiting to step out. It’s not being haunted; it’s just that you will never be able to forget that eight-year-old boy who played chicken with a train and lost. You’ll never be able to forget that. If anybody were to come to me and say, ‘Oh, I can handle it … ” Yeah, OK, maybe you can handle it differently than I can, but there’s no way you’re going to be able to forget that. The young boy who comes home from school for lunch and finds his mother dead upstairs because she put a shotgun in her mouth. You’ll never be able to forget that. Never. But they don’t haunt me.

“Very early in my career I had one of those horrible calls – it was a young girl, six or seven years old, crossing the street and was struck by a car. She died en route, and every time I drive by there, it’s like, ‘This is where it happened.’ And it’s no more than that. But they’re with you.”

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“There’s that horrible side where you can’t help … they’re in a car crash, pinned, and the paramedics are trying to put the IV in and they’re doing a whole bunch of different things, and you’re waiting and waiting, and the blood pressure is coming down and down and down, and you can’t stem the bleeding because you can’t access where the injury is.

“So yeah, sometimes you can’t resuscitate them, and that’s the moment that you turn your attention to the family. They’re not the patients, you’re not there specifically for them or because of them, but all paramedics will do this; they will turn their attention to the family.

“I used to do presentations for career days at high schools, and they would ask what’s the most important thing about your character that would make you a good paramedic, and I would say two things. The first was that you really have to be a caring person, because that’s what you do. That’s your job, you’re caring for people — their emotional needs, their physical needs. And the second part is good communications skills. You must have good communications skills because of instances like this, where a family member has passed away and you need to inform them. And don’t use any jargon, don’t use any of that nonsense. ‘I’m sorry he passed away. We couldn’t do anything.’ And you don’t give them a lot of info, because they’ll forget most of it after you tell them.

“We have to be careful what we tell them, because they will remember that moment, forever. It really demands respect, and I don’t care if they’re gang members or whatever the case may be. We don’t care; it’s a patient and they have friends or family, and there’s a mother or father somewhere, maybe, or children, grandchildren or great-grandchildren, and all of them will be affected by this.”

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“I would often turn my attention to people’s rooms to give me an idea of the life they led. The older generation especially will have a lot of photographs on their dressers or in the bedroom. Even if I don’t know these people, it kind of puts you there. Look at the clothes they’re wearing. Look at the cars they were driving. It gives you a bit of a glance at their lives. There are pictures of their children and grandchildren. It kind of gives you a quick bio of them.

“The ones that really stand out for me are ones where someone’s standing next to a Spitfire, because you know they served. Did he fly planes? Was he in the war? Was he a mechanic? You can sometimes ask the family a little bit about them — you have to tread carefully there, because they may not take it very well. But in some instances I was able to ask the family. ‘Oh, he served?’ — because there’s a picture of him. ‘Yes, and he went to this battle and that battle,’ and of course they’re proud of that. And sometimes I take a minute to thank them for their service to their country. Sometimes you’ll see their medals on the wall, and you can talk about that a little bit.

“It can be fascinating. You don’t know about this person or the life they led, if they discovered a cure for something. You just never know.”

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“Has my view of death changed over the years? Yes. I think just because of the sheer number of calls that we do with death and near-death … a patient you were able to get back from the grip of death that they were in. The shootings, the stabbings, the crib deaths — Sudden Infant Death Syndrome — for sure, gave me a better understanding of death. You’re more aware of death and what it means and why it happens, a little bit — we can never know why, really. But it gives you a better appreciation of it, and thus a better understanding of it.”

“You see a lot of circumstances. The suicides are sad. And you also see the murder-suicides, and those are weird. There was one I did where this man had custody of his child during the weekend, and he decided on Sunday night that the child was not going back home to his mother, and threw him off the balcony and then jumped himself.

“So you get to the scene and you’ve got this to deal with. And you only know the circumstances after the fact, but you have a damn good clue that at three o’clock in the morning, when the OC Transpo driver found him when going out to his shift, that the kid, maybe two or three years old, didn’t wake up fully dressed at three o’clock in the morning to jump off of the balcony. So now you’ve got that anger issue. You want to kill yourself? That’s somewhat understandable. But to take an innocent child away from his mother and his life? It’s just … it’s weird. There’s this brain storm happening there in your head, in my head, that’s very difficult to deal with and make sense of. So those are very difficult to do.

Complete Article ↪HERE↩!

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6 thoughtful things to do after someone dies

When it comes to being helpful, actions can speak louder than words

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When trying to provide help or comfort to someone who has recently lost a loved one, we’re likely to agonize over the right thing to say.

Sometimes the best way to help isn’t to say anything at all, but to do something specific that is supportive and meaningful.

Offers of support can be open-ended and vague, and often the last thing a grieving person wants to do is devote effort to an ambiguous offer of food or company.

Knowing the best way to lend a hand can be difficult, but it shouldn’t stop you from trying.

With that in mind, Considerable spoke to experts in the field of grief and trauma recovery, who helped us create this list of 6 thoughtful actions to do when someone has passed away.

1. Be present and be persistent

Many folks experiencing a loss receive an abundance of attention and help in the direct aftermath of a death, only to encounter a substantial drop-off in communication as the weeks pass by.  That follow-up period is an important time to remain available to the bereaved.

Dea Dean, family therapist and licensed professional counselor in Ridgeland, Mississippi, emphasized the importance of staying in touch after the initial period of shock following the death and funeral.

Dean recommends not leaving plans open-ended. “Set a reminder in your phone once a week to text,” she said, “and ask to fulfill a specific need.”

And if that offer gets turned down, don’t get discouraged. “Offer to pick up your friend and take them somewhere and let them know you’ll continue to ask. Don’t stop offering and inviting if they decline. Keep pursuing them,” Dean said.

Kriss Kevorkian, PhD. MSW, an expert in grief, death, and dying, agrees: “Continue to be available and present for the bereaved. Keep in touch week after week as best you can. In all these actions, please make sure not to take over the conversation.

“Just be present, loving and your authentic self in compassion to another,” Kevorkian continued. “Most people want to have someone check in and visit.”

2. Help around the house

There’s no shortage of chores and small tasks that can be of great assistance. You can grocery shop; help with the laundry; clean closets, cellars, and attics; care for pets; or do yard work.

In addition, think about simple ways you can offer relief to the grieving person that aren’t cooking and cleaning.

Are they planning on sending thank-you notes to people who attended the funeral service? Consider buying them the cards and stamping them.

Dealing with the legal documents that follow a death can also be a huge hassle for the bereaved.

If you have skills in this department, help the mourner organize the task, make lists of people to call or meet with, and look up addresses online.

3. Get them out of the house

Being physically active and connecting with nature can be a great way to help ease feelings of isolation and sadness. A long walk in the fresh air can be revitalizing, or if there’s a specific game or activity (tennis, bowling, swimming) you have done with the person in the past, try that.

Just as constructive: Bring them to a coffee shop or museum. And if they aren’t feeling it, no big deal.

Dean said, “Let them know they don’t have to hide how they’re feeling and that you’re open to staying out or going home at their leisure.”

4. Memorialize the deceased

Helping to commemorate the deceased, whether individually or collaborative with others, is a thoughtful gesture that can help evoke positive memories for the mourner.

Whether it’s a piece of art, a poem, or a framed photograph, showing you care with a creative work is an extremely nice gesture.

Also consider making a charitable donation in the name of the deceased.

5. Avoid bringing food and flowers

Think outside the box. Bringing food and flowers is a thoughtful gesture, and of course providing food can be especially helpful as someone deals with a traumatic loss and lacks the time and energy to cook.

But Sherry Cormier, licensed psychologist and a certified bereavement trauma specialist in Annapolis, Maryland, offers this advice: “Be very careful about the ‘usual suspects’ given to grievers, e.g. food and flowers. Some people are allergic to flowers and flowers die and have to be cared for at a time when grievers don’t feel like caring for anything. Often grief survivors are inundated with food and end up throwing food away. Also there is the issue of food allergies.”

Instead of bringing over a casserole, try paying for a meal service that can be used when the mourner really needs it.

And instead of flowers, try a gift card or a certificate for a massage.

6. Listen

“Listening is a huge gift,” Cormier said. “Grievers may need to talk and tell the story over and over to help them heal. If you can simply be present and listen and avoid being prescriptive, this is wonderful.”

Making yourself available while being patient and comfortable not having answers or the “right words” is important.

According to Dea, “If we give them the space to talk freely (without believing we have to take their pain away or do anything to fix it) it can bring them great relief.”

Dr. Kevorkian agrees: “The best action to take in this situation is to listen and not interrupt with your own story or judge what the other person is sharing.”

And as you consider the best ways of helping someone, make sure you cater to their personality and their needs.  No two people grieve the same way or on the same timeline, so be flexible with both your time and your expectations.  

Complete Article ↪HERE↩!

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Living Well…

Embracing the natural stages of the dying process through hospice care

By Lauren Glendenning

When patients need hospice care, family members and other loved ones often feel overwhelmed with emotion. A caring and supportive hospice team can help alleviate some of these feelings.

We asked Kristine Cooper, executive director of Home Health and Hospice at Memorial Regional Health, to help readers understand more about hospice care at MRH and how it affects patients’ families.

What are some ways that hospice care can relieve stress for those who may be in charge of an elderly loved one?

Kristine Cooper: Hospice really provides support not only to the patient but also to the caregivers. We have nurses that spend time with caregivers, educating them about the disease and dying process. We also have our LCSW (Licensed Clinical Social Worker) who spends time with the patient and caregivers, discussing end-of-life planning. She also works with caregivers and families to address anticipatory grief.

Are there any myths about hospice care you’d like to clarify?

 

One myth would be that hospice hastens death. Hospice really embraces the natural stages of the dying process and neither intends to hasten or prolong death. Our team partners with the patient and family on the journey. Another myth is that hospice is expensive. Medicare actually covers the cost of hospice, including medications to treat symptoms related to the patient’s terminal diagnosis as well equipment needed to care for the patient safely in their home.

Why is it important for families to know about hospice care?

Hospice is not about giving up hope, it’s about refocusing hope. With hospice, there is hope that pain and other symptoms can be managed so that loved ones can live their best life in their final days. Hospice also offers hope to families and caregivers by providing support during this difficult time.

When is hospice care is necessary?

Hospice is here for patients who have been diagnosed with a life limiting or terminal illness with a life expectancy of 6 months or less to live.

What kind of care do hospice patients receive?

Hospice provides nursing, emotional and spiritual support. Hospice can also provide support from physical, occupational and speech therapy with the focus of helping patients move safely. We also have volunteers that can provide companionship and assist with light housekeeping and cooking. All these different services make up the patient’s care team that works closely with their doctor. The overarching theme about hospice is that it is really about what the patient or family needs.

Complete Article ↪HERE↩!

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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.

Complete Article ↪HERE↩!

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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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Aid in Dying Soon Will be Available to More Americans. Few Will Choose It.

By October, more than one in five U.S. adults will be able to obtain lethal prescriptions if terminally ill. But for those who try, obstacles remain.

By Paula Span

On Aug. 1, New Jersey will become the eighth state to allow doctors to prescribe lethal medication to terminally ill patients who want to end their lives. On Sept. 15, Maine will become the ninth.

So by October, 22 percent of Americans will live in places where residents with six months or less to live can, in theory, exercise some control over the time and manner of their deaths. (The others: Oregon, Washington, Vermont, Montana, California, Colorado and Hawaii, as well as the District of Columbia.)

But while the campaign for aid in dying continues to make gains, supporters are increasingly concerned about what happens after these laws are passed. Many force the dying to navigate an overly complicated process of requests and waiting periods, critics say.

And opt-out provisions — which allow doctors to decline to participate and health care systems to forbid their participation — are restricting access even in some places where aid in dying is legal.

“There are what I call deserts, where it’s difficult to find a facility that allows doctors to participate,” said Samantha Trad, the California state director of Compassion & Choices, the largest national advocacy group for aid in dying.

“We’re nearing a tipping point,” said Peg Sandeen, executive director of the Death With Dignity National Center, which oversaw the Maine campaign. “The issue, while still controversial, is less scary.”

The New Jersey bill had neared passage several times since it was introduced seven years ago, but derailed in 2014 when Chris Christie, the governor at the time, threatened a veto. Finally, legislators passed the Aid in Dying for the Terminally Ill Act this winter, and Gov. Philip D. Murphy signed it in April.

In Maine, the state legislature voted yes this spring, but supporters were unsure what the new governor, Janet Mills, would do. As in New Jersey, a Democratic governor replaced an outgoing Republican who had promised a veto.

Gov. Mills signed the law last month. “I do believe it is a right that should be protected by law — the right to make ultimate decisions,” she said.

What’s changed?

All these laws require states to track usage and publish statistics. Their reports show that whether a state has six months or 20 years of experience, the proportion of deaths involving aid in dying (also known, to supporters’ distaste, as physician-assisted suicide) remains tiny, a fraction of a percentage point.

California, for example, in 2017 received the mandated state documents for just 632 people who’d made the necessary two verbal requests to a physician, after which 241 doctors wrote prescriptions for 577 patients. More than 269,000 California in all died that year.

With such data showing no slippery slope toward widespread use or abuse, “a lot of the hypothetical claims our opponents made no longer carry so much weight with lawmakers,” said Kim Callinan, chief executive of Compassion & Choices.

Ms. Callinan also pointed to changing attitudes within the medical community, once a well funded source of opposition. In recent years, a number of national organizations and a dozen state medical societies have instead adopted neutral stances.

“It levels the playing field a little,” she said.

Opponents, including Catholic organizations and some disability activists, still denounce these laws. In March, an aid-in-dying bill passed the Maryland House of Delegates but failed after a tie vote in the Senate. Opponents are attempting a ballot initiative to repeal Maine’s new law and pursuing a slow-moving court case to invalidate California’s.

Public opinion polls consistently show broad support for aid in dying, however. Compassion & Choices says its upcoming legislative targets include Massachusetts, Maryland again, New Mexico, New York and Nevada.

But the persistently small number of users suggests that most Americans close to death would not personally choose to self-ingest barbiturates, even if they support legalizing that option. The low numbers may also reflect difficulty in actually using these laws.

A recent survey of 270 California hospitals, published in JAMA Internal Medicine, found that 18 months after implementation of the state’s End of Life Option Act, more than 60 percent — many of them religiously affiliated — forbade affiliated physicians to participate.

Compassion & Choices is intensifying efforts to persuade local health care systems, doctors and hospices to agree to consider patients’ requests.

Even aid-in-dying laws long on the books are beginning to draw renewed scrutiny.

For decades, the model has been the first-in-the-nation Oregon law, which took effect in 1997. It requires a terminally ill patient to see two doctors, make two oral requests for a lethal prescription plus one in writing, and face a 15-day waiting period.

Every state law but one incorporates those elements. (In Montana, a court legalized aid in dying, so there’s no statute.)

“There’s too many roadblocks in the existing legislation,” said Ms. Callinan, whose organization has long promoted that legislation. “They’ve actually made it too difficult for patients to get through the process.”

Indeed, a study from Kaiser Permanente Southern California, a health system that supports patients who request and meet requirements for aid in dying, shows that at least a third of those who inquire about it become too ill to complete the process, or die before they can qualify.

Yet states are enacting even more supposed safeguards. Hawaii, whose law took effect in January, requires a 20-day wait; both its law and a proposed Massachusetts law add a mandated mental health consultation.

By contrast, the Oregon legislature recently approved an amendment waiving the waiting period in cases where the physician believes the patient will likely die within 15 days. Gov. Kate Brown has until Aug. 9 to sign it.

Perhaps, Ms. Callinan proposed, aid-in-dying laws shouldn’t require waiting periods.

“It takes people a long time to find a first doctor, to make an appointment, to find a second doctor, to find a pharmacist,” she said. “The process itself is a waiting period,” one often exceeding 15 days.

Since rural areas face physician shortages, Compassion & Choices has also urged that nurse-practitioners and physician assistants be allowed to provide aid in dying in states where they can legally write prescriptions.

In Oregon, a veteran state legislator has taken an even more audacious step toward expanding access.

State Rep. Mitch Greenlick has introduced several bills that would permit those in the early stages of dementia and other neurodegenerative diseases to use aid in dying, securing prescriptions they could then use later as their illnesses progressed.

“You could make the request when you were cognitively able to do it,” he said.

Every existing state law bars that. Those requesting aid in dying must have mental capacity; dementia patients will have lost it by the time they’re within six months of dying. National groups emphatically oppose Mr. Greenlick’s propositions.

Yet those at heightened risk for Alzheimer’s disease, the most common form of dementia, are already well aware of aid-in-dying laws, and some would opt to use them, researchers at the University of Pennsylvania recently reported.

They interviewed 50 older adults enrolled in a drug study, most with family histories of Alzheimer’s, all found to have elevated levels of the biomarker amyloid. “We describe it as an increased but uncertain risk of developing Alzheimer’s disease,” said Emily Largent, a Penn bioethicist.

The team’s interviews revealed that about two-thirds of the group would reject aid in dying and about 15 percent had ambivalent responses. But one in five said they would pursue it if they became cognitively impaired, were suffering or burdening loved ones.

Overall, “very few understood that they wouldn’t be eligible” for lethal prescriptions under current laws if they developed dementia, Dr. Largent said.

But they were strikingly open to legal aid in dying.

“It was important to have it available,” she said. “Even if they felt they wouldn’t choose aid in dying themselves, they weren’t opposed to it for others.”

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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