End of life care: medical, emotional and spiritual support

— End of life care can be varied, holistic, and filled with love. We look at two end of life services – hospices and end of life doulas – that show how medical, emotional, and spiritual needs can be looked after in different settings.


What is end of life care and what is palliative care?

There’s a lot of confusion around palliative and end of life care. For starters, although related these two terms do not describe the same thing – they are distinct.

Receiving palliative care doesn’t neccesarily mean you’re dying – rather that this kind of care is for people with incurable diseases, many of whom could or will live for many more years or decades. It’s about making life as manageable and as good as it can be.

End of life care is a form of palliative care you are given when you’re approaching end of life – it offers support and is wide-ranging and holistic.

When does end of life care start?

From a healthcare perspective, end of life care may be recommended if you are likely to die within the next 12 months, although this can sometimes be hard for doctors to accurately predict. End of life care may last a few hours, days, weeks, months, or sometimes more than a year – the only rule is that it begins when you need it.

Who provides end of life care?

End of life care doesn’t just take place in a hospital or hospice with doctors and nurses. Depending on your needs and care plan, you could receive various forms of this care at home, over the phone, or at specialist day centres. A whole host of specialists and non-specialists can deliver end of life care.

Specialists include palliative care physicians and nurses – such as Marie Curie and Macmillan nurses – but also counsellors, social workers, bereavement therapists, speech therapists, religious or spiritual carers, and many others.

Non-specialists are made up of people in your community who have different roles to play in your care. These include district and practice nurses, GPs, and pharmacists.

This should give an idea of how varied and personalised end of life care services can be.

What services are available for end of life care?

Here we take a look at two important forms of care that showcase the range of services available.

  • Hospices – hospices are specialised healthcare spaces for palliative and end of life support. Yet, hospice care extends beyond hospice beds and medical treatment.
  • End of life doulas – outside of your medical needs, doulas offer emotional and spiritual care, and they can do this inside or outside of the hospice setting.

Spotlight on: hospice care

In hospices, specialist palliative and end of life care is delivered by a multi-disciplinary team, made up of people who have different roles in a person’s care. This includes doctors, nurses, physiotherapists, occupational therapists, complementary therapists, counsellors and chaplains.

Jodie Morris is deputy director of nursing and care at Myton Hospice. She explains how hospices offer so much more than medical treatment:

“Hospices are happy places full of love and laughter where families can create special memories and spend quality time with their loved ones. This isn’t just about medicine – it’s about whatever is important to the patient and their family and friends. We take a holistic approach and see the person – not their illness.

“At Myton, we provide support right from the moment a person is told that their illness cannot be cured until the very end of life. We provide this free service in our three hospices, in the community via our Myton at home service, and as an outpatient service:

  • Our outpatient services – help people to live well for longer with their terminal illness. This may include advance care planning, counselling, lymphoedema therapy, complementary therapy such as massage for relaxation, physiotherapy, and occupational therapy.
  • Our hospice inpatient services – provide symptom control and end of life care.
  • Our hospice at home services – provide care and support for people in their own homes in the last weeks and days of life.
  • Our bereavement support – looks after the wellbeing of family and friends after their loved one has passed.

Going the extra mile

Jodie goes on to describe how the staff and volunteers at Myton go the extra mile to look after the wellbeing of their patients, welcoming beloved pets and arranging birthday celebrations, weddings and christenings at their hospices, often at very short notice.

Kerry and David’s Myton Wedding

David Black was admitted to Coventry Myton Hospice on Friday 13th May 2022 and less than 24 hours later he and his wife Kerry had their wedding at the hospice. On hearing the couple’s plans to marry, Myton staff and volunteers pulled out all the stops to arrange decorations, food, and refreshments to ensure they had the best possible day making precious memories. They were surrounded by close family members and their two sons, Fergus now aged 10 and Alfie, 7. David sadly died aged just 41, one week after being admitted to Myton.

Kerry said: “Alfie and Fergus were so excited to see us get married and I’m so pleased that they have such happy memories of the hospice. Their faces say it all and for that I will be forever thankful to Myton.”

Kerry and David's wedding
Kerry and David’s wedding

Spotlight on: an end of life doula

An end of life doula, sometimes called a death doula or death midwife, is a non-medical specialist trained to provide emotional and spiritual support to terminally ill people. According to the International End of Life Doula Association, a doula “holds the space for the kind of dying experience that honours who the person is and has been in their life.”1

Alessandra Olanow is a trained end of life doula and author of Hello Grief: I’ll be Right with You. She explains how a doula can be a comforting and positive presence:

“Doulas are there to allow the dying person to be who they are, and to allow them to be more than old or sick. A doula listens deeply to the concerns, fears, hopes, and life stories of the dying person and their loved ones to bring them peace at the end of life.”

There are many things a doula can do, including:

  • Being a companion and source of comfort.
  • Offering emotional support to the care recipient and their loved ones.
  • Have conversations that help death seem less scary and lonely.
  • Providing practical support – for example, walking the dog, providing care, preparing meals, and running errands.
  • Being a point of contact for the other care teams.
  • Enabling family carers to take a break.
  • Advocating for the care recipient’s wishes – for example, making sure the desired religious or cultural rituals are followed during end of life or after death.

Doulas can visit people at home, or in a facility such as a hospice or nursing home. Alessandra volunteers on the palliative care floor of a New York hospital. She adds that training as an end of life doula has helped her appreciate living: “I used to avoid thinking about death and dying; it was just this fearful thing. Now, I choose to live my life with an understanding that every single day is a gift.”

Alessandra’s advice for coping with loss

If your loved one is approaching death, an end of life doula needn’t disappear the moment they have passed on. They can also support you through your grief, offering guidance and comfort.

Alessandra shares this advice from her experience helping with grief: “Allow yourself the time and space you need without expectation. There is a misconception that grief has a timeline and that there is a certain way to grieve. But there isn’t. Everyone grieves at their own pace and that is ok.

“It can be helpful to have a creative outlet to express overwhelming feelings of loss. When I first lost my mother, I began to draw my feelings – these drawings became my book, Hello Grief. I hope it helps others to process their own grief.”

Further reading

  1. International End of Life Doula Association: What is an end of life doula?

Complete Article HERE!

A guide for the end

— Woman finds support in end-of-life doula program

Jane Schostag (left) sits with her end-of-life doula, Mary Beth Trembley, at Schostag’s Skyline home on March 15. When Schostag learned she had terminal cancer, she sought out Trembley as a doula for support and guidance on her end-of-life journey. This week Schostag entered hospice.

By Brian Arola Mankato

Jane Schostag doesn’t shy away from discussions about death, even her own.

The Skyline woman, a longtime English teacher at Mankato West before her retirement, has terminal cancer.

Rather than avoiding the topic of her own mortality, Schostag has been spending what will likely be her final months reflecting on and preparing for what she calls her “farewell journey.”

An end-of-life doula is helping guide her.

“People have doulas when they have babies because having babies is a lot of work, it’s stressful,” she said. “Well, so is dying, so you got a coach on one end and a coach for the other.”

End-of-life doulas serve as nonmedical companions offering support and guidance on death, sometimes complementing medical services provided by hospice care. A doula’s specific duties vary depending on their background and the person’s needs, but one important quality they share is a willingness to acknowledge and talk about death.

Having doula Mary Beth Trembley with her during this stage in life, Schostag said, is like having a “caring, informed friend” willing to tackle the topic head-on.

By putting death on the table, the hope is people live their final days to the fullest instead of awkwardly avoiding any talk of what will inevitably happen.

“We should treat it as a sacred time and support that process,” Trembley said. “People think it’s morbid to talk about death and dying, but we’re all going to die. It’s part of life.”

Trembley is one of several trained end-of-life doulas in the Mankato area — she received her training through the Conscious Dying Institute in Boulder, Colorado. These doulas meet up monthly to support each other and share resources.

The services can be available on a volunteer basis or paid depending on the recipient’s circumstances.

When they find out about someone in need of a doula, they consider which of them would be the right fit. Sometimes a person will meet with multiple doulas, such as when Trembley introduced colleagues to Schostag because she knew they’d get on well.

Their end-of-life doula network in the Mankato area was just getting up and running when the COVID-19 pandemic started, which made connecting with more people difficult.

Now, as the network looks to work with more people, Trembley and Schostag hope sharing their experiences as doula and recipient leads more people to become doulas and more people to seek out the services.


Schostag found out she had a malignant lesion on her tongue about two years ago at age 76. In her memoir, the tools for which her daughter, Lindsay, gifted to her a couple of Christmases ago, she described the cancer as making her sound like she’s been “hitting the margaritas.”

An oral surgeon removed the cancer, but she next faced a decision about whether to start radiation treatment. She remembers hearing in detail about how the treatment could have debilitating, painful impacts on her head.

Having already enjoyed a full life, she chose to prioritize the quality, rather than quantity, of the rest of her life. It meant forgoing radiation.

“Even if the cancer returns,” she wrote, “I do not think I will choose to do radiation or chemotherapy. At my age, I fear sickness or debilitation more than death.”

If she were younger and still had children to raise, her decision might’ve been different. She feels gratitude for the good run she’s had — from a fulfilling professional career in education to advocating for children in the court system to being a wife to husband David, a mother to Lindsay and a grandmother.

She notes she isn’t saying others should go the route she went, but thinks people who’ve lived abundant years should examine their options before immediately proceeding with unpleasant, possibly debilitating treatments.

To her, doing so risks “outliving our quality of life.”

In July, Schostag learned she had a swollen lymph node near her surgery site. A biopsy on the node misdiagnosed it as negative for cancer, giving it three months to grow before confirmation of the cancer’s return was revealed by another biopsy in October.

By then, the cancer was rapidly spreading. She again elected to forgo treatment.

Kindred spirit

Schostag was already familiar with the doula program through past presentations and had it in mind to seek out when she needed it. If people need the guidance of counselors before going to college and other important steps in life, she said, why not seek out guidance before death?

“Why not a person who’s an expert at making the best of what you have left, which is really what I see doula work as being,” she said.

She and Trembley knew each other through their church, Unitarian Universalist Fellowship of Mankato. The two met, along with David, in October to review what doula services entail and set a plan for regular meet-ups.

Having family involved and on board makes it easier, Schostag said.

“I think it’s good for families to talk about it,” she said. “We’re gonna deal with the preparations that need to be done. We’re gonna talk about what our thoughts are and what we’re scared of.”

Family and friends otherwise might not know what to say to someone facing death, creating an awkwardness of avoidance. Embracing the subject brings it to the forefront, creating space for people to say what needs to be said before it’s too late.

“It’s interesting what your demise does to other people,” Schostag said.

Doulas can help people work through what to say to their family and friends, Trembley said. They try to bridge gaps, whether the gap is a needed conversation with family or establishing a will and advanced directive.

“When you’re with somebody who likes to talk about death and dying, it’s a different conversation,” she said.

Trembley joined Schostag on her medical appointments, offering another set of ears. Although not all doulas have a medical background, Trembley’s career as a psychiatric nurse proves helpful.

The doula’s work doesn’t necessarily end when their companion’s life ends. They can be a source of comfort to the surviving family afterward.

A grieving person sometimes receives an initial outpouring of support from their social circles before people move on with their lives. Trembley sees potential in doulas continuing to offer support for as long as the surviving family needs it.

Trembley and Schostag think of themselves as kindred spirits when it comes to outlooks on life and death, which furthers their bond. Trembley described Schostag as an “amazing person” whose wealth of life experience will educate people about an important resource.

“By talking openly about death and dying and doula work, she’s helping,” she said.

Schostag’s journey took its latest turn this week when she found out her cancer had spread to her hip area. In one sense, she said after finding out, she felt “very lucky that I went as long as I did without pain.”

Her hospice team has been wonderful, she added. So has her family, friends and doula.

Shortly after starting with Trembley, someone asked Schostag about her doula.

“She’s great,” Schostag recalls responding. “She’s really into death.”

In a society so averse to conversations about death, she said, having a doula on her journey makes the end less lonely.

Complete Article HERE!

The Art of Dying

— Overcoming Our Fear of Death

Enduring, accepting, and embracing the inevitability of one of mankind’s greatest fears.

By Jocelyn Tatum

On my desk at home, I have a true-to-life-sized concrete sculpture of a skull with little porcelain bluebirds resting on its mouth, ears, eyes, and one on its crown. I found it at ArtsGoggle in Fort Worth 13 years ago when the local arts festival was just starting out. I gravitated toward it because it reminded me how fleeting and fragile life can be. The birds, to me, represented the creativity that comes forth in the face of our finitude. The idea was that this mortal reminder would help me get past writer’s block. After all, as a journalist, these stories are not my own. They are your stories. I am merely the vessel who delivers them using my passion and acute sensitivity to humanity. And I borrowed this idea from 14th-century monks who kept skulls on their desks as a reminder of their mortality as they wrote their philosophical dissertations, so this idea wasn’t new. “For dust you are, and to dust you shall return.” Sounds familiar, right? This symbol of death on my desk was a reminder to face my fears head on, and that I am just passing through this world, adding my thread to the massive tapestry that is the story of all us.

I have always thought of myself as a pilgrim. Just passing through. The joys in life like my son, friendships, or romantic partners are merely finite gifts lent to me from the universe, never mine to keep or clutch. I have found that the pain is in the clinging to life or avoidance thereof, whether it is my own or another’s. Peace and serenity lie somewhere in the middle. Everything temporal, everything passing. Life doesn’t have to be so serious, and I think my journey exploring my own non-imminent death has reminded me of this. When achieved, this allows me to live with a free spirit and detachment to the things that weigh me down. And as things have gotten heavier for me lately with my father starting palliative care for his cancer and the loss of a great love in a breakup, I decided it was time to stare death and grief boldly in the face.

Two Fort Worth women just launched their business, The Art of Dying, in January 2023 after completing their death doula training. When I came across their Instagram (@theartofdyingfw), I became curious. Very curious. So, I kept digging. It turns out that a death doula is like a birth doula but assists with the process of dying. They are an end-of-life companion who can guide the dying, whether that is connecting them to a number of resources or inspiring ideas for how to celebrate the life they have left. “The Art of Dying [is a] small collective that offers support, celebration, and companionship to individuals and their loved ones through the end of life.” They offer services for those who have a terminal diagnosis or those who want to plan early in life and are non-imminent.

These end-of-life practices have been steadily growing since the pandemic, according to Alvin Harmon, the head of the National End-of-Life Doula Alliance on an NPR news segment that aired Jan. 17. “How people died, that was what became important, having that safe space, that whole space, people dying in a manner that felt safe to them and was important to them,” Harmon said on air. Any little dignity people had left when dying was stripped of the dying during the isolating loss of COVID-19. This phenomenon led Fort Worth’s Lacy Buynak to get her death doula training. She lost her grandmother during the pandemic.

“As I was grieving her death, I was having this huge collective grief for all of these people who didn’t get that,” she says as tears form in the corners of her eyes. “I started thinking that that has got to be one of the worst ways to go.” She got to say goodbye to her one last time before she died but realized so many others did not have this experience.

Now business partners in all thing’s death, Buynak and Taykor Bell had been friends since attending school together in 2001. Twenty years later, in April 2021, Buynak called Bell to catch up. They had been talking about something else when Buynak said, “I did a crazy thing. I signed up for a training program to be a death doula.” She remembers getting a “holy-shit, so-did-I”-type of response.

The two had been keeping an ear on the heartbeat of death for years as a separate fascination while a parallel nationwide phenomenon of making death more palatable, eco-friendly, meaningful, and even enjoyable was disrupting the $20 billion funeral industry, which celebrity mortician death advocate Caitlin Doughty argues exploits people’s grief and turns it into a profit. After their own experience with death, Buynak and Bell saw a need to provide a comprehensive and holistic service in Fort Worth that also educates the community one death at a time. “We want to hold space for people in those moments. Raising awareness for collectivism, the practice or principle of giving a group priority over an individual, for being there for people,” Bell says.

Bell had her first existential crisis in grade school. She thought about dying and going to heaven and thought, “That is forever.” Her mind kept seeing “road barriers” to this thought of permanence, and anything past that scared her (to death). She couldn’t understand forever. For her, something so big and unknown brought up this debilitating fear. She knew then that death would be her biggest teacher, and her training for this vocation is her life experience. Not only has she read many books over her 40 years alive, but she was able to be there for her mother as she was dying in a way that she would want someone to be there for her. It occurred to her that many people die in the most isolated and sterile way in the U.S. even before the pandemic.

“The vision is to put ourselves out of business to remind our culture to do this for each other. This is a business needed more than ever. There are so many ways people can feel vulnerable and alone, and death is when that is most poignant,” Bell says.

This year marks the 10th year since Bell’s mother died of adrenal cancer. The story gave me chills. When Bell decided to leave her current career, she looked at the amount of money her mother left her, an account she was hesitant to touch because it was the last lifeline to her mom, and it was the exact amount she needed to get her death doula training. Then Buynak called.

DeathShadowFIN.jpg Illustrations by Brandon Hayman[/caption]

My Journey

I met with Bell and Buynak for sparkling tea at Leaves Book and Tea Shop in Fort Worth’s SoMa district. They had a big biodegradable binder waiting for me on the table with their logo on the front. Page 1: “In this binder, you will find a comprehensive list of legal documents to gather, logistics and arrangements to consider, as well as various comfort and care services you may be interested in learning more about.”

Section 1, “Legal: Advance Directive, Durable Power of Attorney, Last Will and Testimony.” This is definitely the least enjoyable part of the process. I went to the websites, which was about what I expected from government sites. Then I had to download a bunch of PDFs to print, fill them out, and then take them to be notarized. Then file them. Bell recommended using RocketLawyer (not a shameless plug) unless you have some massive estate to work through.

Not going to lie, this part made me feel uncomfortable. Itchy. It asks a lot of questions that I really don’t feel like I know the answers to yet. And when it got to the body disposition authorization that included some subtext about whether your body remains are acceptable if you want to donate it to science, I had to step away and get some fresh air. “So you’re saying my body could be rejected even after I die?” I thought.

“We want people 40 and younger to get their [act] together. It can be sad, confusing, and beautiful,” Bell told me regarding the Art of Preplanning, a service they offer to those who get their affairs in order even if death isn’t imminent.

Well, I do not have my act together. And I am not going to lie, this has brought up some feelings. So, I decide once more to procrastinate on the legal paperwork, which Bell and Buynak have both said I need to knock out first because something can happen to us at any moment. Digging into the resistance, I redirected my efforts into research about how to overcome this fear. What I found brought me peace beyond what I could have ever expected.

Overcoming Fears

“The cave you fear to enter holds the treasure you seek,” said 20th century author Joseph Campbell.The New York Times reported a phenomenon in an article titled “South Koreans, Seeking a New Zest for Life, Experience Their Own Funerals” where people choose to face their mortality. “After an instructional lecture and video, participants are led into a dimly lit hall decorated with chrysanthemums, where they sit, often tearfully, beside caskets and write their last testaments. Then they put on burial shrouds and lie down in the coffins,” the article reports. What surprised me is many participants photographed were young and healthy with no end in sight, but some had a terminal illness and wanted to prepare while others struggled with suicidal thoughts and wanted to put those to rest. They reported emerging from their mock funerals and meditations around death with a new and hopeful perspective on life.

Buddhist monks contemplate images of decaying bodies to unlock the door living in the present and letting go of fears. “It makes disciples aware of the transitory nature of their own physical lives and stimulates a realignment between momentary desires and existential goals. In other words, it makes one ask, ‘Am I making the right use of my scarce and precious life?’” Arthur C. Brooks wrote in an op-ed piece for the NYT.

Guided meditations on mortality such as this can be one of many life-affirming activities that can give us a new take on life, according to the resourceful website orderofthegooddeath.com. The website is an endless resource for all things death with everything from how to have conversations about it to how to have an affordable and intimate funeral at home. It was created by YouTube star, mortician, former cremator, and best-selling author of the memoir Smoke Gets in Your Eyes: And Other Lessons from the Crematory, Caitlin Doughty. In an interview on a segment on “CBS Sunday Morning,” Doughty says, “Americans need to think more about end-of-life rituals, instead of keeping death at a distance.” Her advocacy around changing the way we die and think about death has started a movement across the country. “They are just of the belief that the more we talk about it openly and honestly, the less terrifying it needs to be,” the “CBS Sunday Morning” reporter narrates. Doughty’s more recent book, From Here to Eternity, illustrates how death is handled in a more meaningful and intimate way in cultures across the world. What does it mean to have a good death? Is it not to be so separated and detached from the process, to stop looking away?

Doughty even offers a course, complete with videos, lessons, and guided meditations for the price of $195, called Mortal that gives patrons the tools for facing death. Lessons with titles like, “I create my own meaning,” “I meet my true self on my deathbed,” and “There are parts of my death I can control,” help people better cope.

It made me think, why do we wait until the end to start celebrating life? Why do we wait until we are at our rock bottom, when life strips us of everything that we think validates us as humans, to start living in the way we were always meant to?

Ironically, facing death and working with death doulas like Matus and Buynak helped me release the inhibiting fear of loss and to rethink the way I live. And I have been able to show up differently around my father’s terminal cancer. I don’t need to look away, nor do I need to fix it. I can just be with him in it. It puts me at ease to know there is a slew of tools and support out there.

When I was little, I had a fear of being eaten by a monster and dying. I would lie in bed each night staring at the closed closet door waiting for it to open at any time to claim my life. One night, I had the thought, “What is actually in there?” I got up and looked. Nothing was in there, and I started sleeping through the night again. Peace ensued, and a nascent lesson was learned — the pain was in the resistance, the looking away.

American Poet Andrea Gibson’s YouTube video went viral after she famously shared her story about how her cancer diagnosis transformed her lifelong debilitating fear of death into “boundless bliss.” Once she learned that her whole torso was filled with masses, she said she felt her heart immediately begin to open up. She now walked through the world realizing that she may not be here tomorrow, which pushed her deep into the present moment. The paradox is that facing death cured her fear of death. “Why would I waste my time not in search of the celebration [of life] and not in search of awe? There has been so much love this year that I believe legitimately everything is on my side, and I believe death too, is on my side. And the second I realize that death itself is on my side, I felt like nothing could kill me,” Gibson says in an interview.

DeathPartyFIN.jpg Illustrations by Brandon Hayman[/caption]

The Dying

“It is the most supremely interesting moment in life, the only one in fact when living seems life,” wrote Alice James — William and Henry James’ sister — as she faced death.

Whenever I experience some tragedy in life that brings me to my knees, there is also a death to my “self” that happens, which then strips away my ego. All spiritual transformations and religious conversions speak of this. Nature does too after a roaring forest fire burns thousands of years of story to only be reborn in new growth that is stronger. I have to ask myself, is the key to a more meaningful and deeper life usually comes after facing death, figuratively or literally? “All life is lived in the shadow of its own finitude, of which we are always aware — an awareness we systematically blunt through the daily distraction of living. But when this finitude is made acutely imminent, one suddenly collides with awareness so acute that it leaves no choice but to fill the shadow with as much light as a human being can generate — the sort of inner illumination we call meaning: the meaning of life,” Maria Popova of The Marginalian n wrote in an essay.

I watched the movie “Marcel the Shell” the other day, and at the end, the main character, Marcel, reflects on a great loss, the loss of his beloved grandmother, Connie, also a shell played by Isabella Rossellini. Before Connie dies, she led Marcel to a quiet place to perch in the basement where the window was always cracked. There the wind blew through Marcel’s shell creating a new sound, a new experience. In the face of loss, Marcel experiences the meaning of life. “It connected me, I felt, to everything. Because if I wasn’t there, the sound wouldn’t exist, and I felt like everything was in pieces, and I stood there and suddenly we were one large instrument. I like to go there a lot because it reminds me that I am not just one separate piece rattling around in this place, but that I am a part of a whole. And I truly enjoy the sound of myself connected to everything,” Marcel says.

Just before she dies, Connie reads the poem “The Trees” by Philip Larkin.
The trees are coming into leaf
Like something almost being said;
The recent buds relax and spread,
Their greenness is a kind of grief.
Is it that they are born again
And we grow old? No, they die too,
Their yearly trick of looking new
Is written down in rings of grain.
Yet still the unresting castles thresh
In full-grown thickness every May.
Last year is dead, they seem to say,
Begin afresh, afresh, afresh.

We tend to look at death as a failing of our bodies (or minds) when it is a natural part of living, of returning, of renewing. Experiencing death is one of the few things all humans have in common, which makes it a thing that connects us in our humanity like the wind in Marcel’s shell. I learned many lessons planning my death with The Art of Dying’s Buynak and Bell. Lesson 1: When that wave of grief hits, whether it is losing my father to cancer, my boyfriend to a breakup, or facing the end of my own life, I can’t swim against the current. I shall surrender to the fear and pain and fall back into the healing water until that final wave washes me ashore.

Lesson 2: To start living as if it could all end tomorrow and work with the doulas to plan a dinner party with my favorite people complete with toasts and convivial conversations about dying, loss, bucket lists, and to celebrate life.

Complete Article HERE!

Before your real funeral, you should attend a “living funeral”

— At this event, you’ll be around to hear the eulogy.

by Alexandra Keeler

  • A “living funeral” — also known as a “living wake” — is a ceremony held for a person who is still alive.
  • The living funeral has cultural roots in Japan as well as in long-held indigenous North American traditions.
  • While living funerals can ease fear and anxiety about death, traditional post-mortem funerals retain an important role in the grieving process.

“What a waste. All those people saying all those wonderful things, and Irv never got to hear any of it.”
— Mitch Albom, Tuesdays with Morrie

Death is inevitable. It is out of our control. But how we die is within our control. One way to reclaim some measure of control over death is by way of a “living funeral,” also known as a “living wake” — a ceremony held for a person who is still alive, often to celebrate their life and legacy while they are able to participate. Unlike a traditional funeral, it is a way for the person to say goodbye to loved ones and to be able to smell the flowers at their own funeral.

These events are often planned with the help of a “death doula,” who can provide guidance and support in creating a meaningful ceremony that reflects the individual’s wishes, values, and beliefs. The word “doula” is derived from the Greek term doulē, which means “female servant.”

A death doula is a trained guide who can provide  a holistic, community-based and personalized end-of-life experience. They work alongside medical and palliative care professionals rather than replacing them. Their training can include knowledge of the biological, psychological, social, spiritual, legal, and ethical aspects of end-of-life care. Overall, death doulas can help to alleviate the collective fear of death and promote greater peace and understanding in the face of this universal experience.

Where did living funerals come from?

The specific origins of living funerals are difficult to trace, as rituals like these have developed independently in different cultures over time.

The Lakota Sioux have a tradition of the living funeral in which they repair relationships or make amends, distribute family heirlooms, and eat traditional foods as a way of purifying and preparing for death. Near the time of death, family, friends, and neighbors gather to say farewell.

A living funeral is for the dying, while traditional funerals are for the survivors.

Anishinaabe people in the Great Lakes region of Canada and America also honor their dying loved ones with end-of-life ceremonies. A pipe ritual is commonly conducted by a spiritual leader to guide the person’s spirit to the spirit world. The sacred pipe is a revered tool for communication with the Creator, and during the ceremony, tobacco is smoked to express gratitude for life and creation. The dying person makes amends with the Creator while family members pray for their safe passage. Sacred medicines are burned, offerings of food and cloth are made, and loved ones sing sacred songs to ease the pain of the dying until their spirit leaves their body.

The Japanese have a non-traditional practice called seizensō, which means “funeral while alive.” According to cultural anthropologist Satsuki Kawano, this gives the elderly a novel sense of independence, countering negative perceptions of aging and the elderly. Due to various societal and economic factors, Japan’s traditional respect for elders is eroding and ageism has become a problem. Seizensō challenges the notion that the elderly are passive or burdensome members of society and emphasizes the importance of shaping their own lives and legacies.

What does a living funeral actually consist of?

Planning a living funeral is very personal and customizable, and the specifics can vary. The ceremony can be held in various locations, including a person’s home, an outdoor spot, a favorite restaurant, or any place of significance. Guests can bring mementos that trigger memories and stories, informal speeches can be made, and a designated friend or officiant typically orchestrates the activities. The sequence of events can include any variety of activities that reflect the individual’s personality and interests, but food, videography, music, art, and visiting the final resting place are some common choices.

One of the most important aspects of the living funeral is making the dying person feel comfortable and cared for. BJ Miller, a palliative care physician at the University of California-San Francisco Cancer Center, said in a 2015 TED talk, “So much of it comes down to loving our time by way of the senses — by way of the body; the very thing doing the living and the dying.” He urges people involved in end-of-life care to consider the bodily senses of the person who is dying. He recommends creating a pleasant and comforting experience for them that takes all of their senses into account and honors their dignity. He describes one elderly woman’s request to feel her dog pressing its nose against her skin.

Death doula Alua Arthur emphasizes creating an ideal deathbed as part of the living funeral ceremony. She advises making it comfortable, aesthetically pleasing, and sensually enriching by including favorite scents (incense), colors (pillows, art, flowers), and sounds (singing bowls, music).

If a ceremony is intended to help the person nearing the end of their life overcome anxiety about death, one of the events might include a guided meditation that walks the dying person through a visualization of their own death. Visualization techniques can be used to induce a sense of calm and connection to the natural world, and can help one to confront and come to terms with one’s own mortality. One such visualization guided by death doula Brooke Manning involves imagining oneself in a peaceful natural setting and then visualizing a metaphorical representation of life as a light within the body. This light is then imagined to sink down into the earth, joining up with lights that represent other people’s life sources, creating a sense of connection to the universe and fostering a deep understanding of one’s place in the world.

Informed consent should be at the center of a living funeral ceremony. It is important to ensure that the person for whom the living funeral is being planned has autonomy. A living funeral can also be an emotional experience for everyone involved, so it is important to ensure that the person and their loved ones are emotionally prepared for the experience.

Any decisions made should also be respectful of the person’s cultural, religious, and personal beliefs. To ensure that the ceremony appropriately reflects this, it is important to involve doulas who have the necessary cultural and spiritual knowledge, so it’s often helpful to select someone who approaches this work through a polytheistic lens.

One of the main decisions when planning a living funeral involves the timing of the ceremony. While it is a personal choice, and there is no specific requirement, most people choose to have a living funeral when they receive a terminal diagnosis or when they feel that their death may be approaching. However, others may choose to have it earlier to proactively participate in the event, enjoy the celebration of their life, and have meaningful conversations with their loved ones while they are still able to do so.

Living funerals can’t replace the real thing

Unlike in a traditional funeral, a living funeral allows the central figure to speak, hear others speak, take part in rituals and rites of commemoration, all while in the presence of supporters as witnesses. It is a collaborative and personalized ceremony that empowers the person of focus with agency during a time when their control is slipping away.

Psychologist Dr. Nick Capaul, who specializes in grief and loss, explains that an appropriate way to think about the difference between the two types of funeral, is that a living funeral is for the dying, while traditional funerals are for the survivors. Although both are beneficial, the latter is often still required for the bereaved to gain closure. In his experience, when families opt for a living funeral instead of a traditional post-mortem funeral, other family members or friends of the bereaved push back. They almost always want a traditional funeral. When people are robbed of their opportunity to confront and process death, people can experience what is called “disenfranchised grief.” In reference to grief, disenfranchisement means depriving someone of their right to grieve. Dr. Capaul believes that a living funeral does not include the element of loss, and if there is no loss, you are not truly confronting grief or processing death.

Dying individuals are often isolated due to illness or conditions that limit their communication and mobility, while friends and family may also avoid interactions due to discomfort and cultural taboos around death. A living funeral can provide one last party, similar to an Irish wake. In general, while being around a person nearing the end of their life can be emotionally challenging, creating more opportunities to spend time with them can be beneficial for everyone involved.

Complete Article HERE!

New end-of-life doula services focus on rural, houseless populations

— OHSU School of Nursing alum aims to make end-of-life a social, not medical event

By Christi Richardson-Zboralski

As a hospice nurse, Erin Collins, M.N.E., RN, observed that many of her patients were afraid of dying, in denial of their imminent death, and consequently unprepared for it.

Now, she’s seeking to change that: Collins’ new organization, The Peaceful Presence Project, views compassionate end-of-life care as a basic human right, and is creating a social death care movement through education for clinicians, volunteer-based programs, and an innovative concept called end-of-life doulas.

“As health care providers, it is not always about saving lives at all costs, it’s about supporting someone to live and die well,” Collins said. “That often includes where they want to die and who they want to be present.”

Collins is a certified hospice and palliative care nurse with 16 years’ experience in oncology and end-of-life care. She recently completed a Master of Science in Nursing Education at the OHSU School of Nursing, Portland campus, and was selected as a 2022 Cambia Health Foundation Sojourns Scholar.

The mission of The Peaceful Presence Project is to reimagine the way communities talk about, plan for and experience serious and terminal illnesses. Its approach is based on the compassionate communities model of end-of-life care, which asserts people facing serious illness should spend 5% of their time with a health care professional, and views the end-of-life as a social event with a medical component — rather than the other way around. Their doula program helps fill the 95% of time people aren’t face-to-face with their health care provider.

Doulas are people who are trained to serve. Many people are familiar with birth and postpartum doulas, who serve families during and after the birth of a child. End-of-life or death doulas serve families during the end of the life cycle. End-of-life doula courses provide training in how to be a present and active listener; create a calm and compassionate environment; and provide non-medical comfort measures, such as distraction, guided imagery and repositioning to help alleviate symptoms. Trained volunteers may help with legacy projects, including collages, audio or video recordings, and other ways to display physical objects. When needed, they help with memorial planning.

The trainings emphasize how to facilitate compassionate discussions about death-related topics. In 2023, Collins will develop a continuing education program for rural health care workers through her Sojourns Scholar project to improve access to palliative care in communities where specialists often don’t exist.

Community-based end-of-life support

Lily Myers Kaplan speaks highly of The Peaceful Presence doula training she took in 2022. Meyers Kaplan is author of two books on loss and legacy, co-founder of The Spirit of Resh Foundation, the Ashland Death Café and The Living/Dying Alliance of Southern Oregon.

“There was a particular session on approaching end-of-life with veterans, which helped me see the need for diverse approaches to different populations. The difference in end-of-life support between those who have lived in a rural setting, caring for the land, or being actively reliant on their physicality versus someone who has had a more traditional or urban life is quite distinct.

“For example, caregivers who may be responsible for vast swaths of land — anywhere from 20 to 80 acres or more — need support from others who understand their needs,” said Myers Kaplan, who lives in the Applegate Valley, a rural area of Oregon that includes large stretches of land that provide solitude and a level of independence that most urban lifestyles don’t experience.

A caregiver in Depoe Bay reluctantly accepted help from The Peaceful Presence Project after his wife got him on board. After several long years of treatment and many ups and downs, Ray Burleigh’s adult daughter, Becky, had reached a point in her cancer treatment where it no longer worked. Burleigh had strong doubts when the hospice nurse brought up the topic. However, his wife, Jeni, said yes to the help.

With the support of two death doulas from The Peaceful Presence Project, Elizabeth and Erin, the Burleighs found some measure of relief. The death doulas told the family they would bring community support from around the Bend area.

“I was still not convinced. We needed practical help. Becky’s house is hard to heat and she was concerned they were spending too much money on keeping the house warm. It’s heated by a wood stove,” said Ray. “I told them to bring us some wood, not expecting anything. Two nights later, a truckload of wood came — not just one bundle, a truckload. I was shocked! We couldn’t have done this without Elizabeth and the doulas.”

Without the doulas’ help, Ray said they would have had to put Becky in the hospital, and possibly ended up sick themselves.

“The doulas provided night-shift help because we weren’t getting any sleep. They helped with groceries, created a schedule for visiting hours, and the fire,” he said.

Elizabeth and Erin identified 25 people in the city of Bend who were willing to help them out, including neighbors, and many people who are now friends of the Burleighs. Jeni’s family from the same area were also there to help.

Because of his time alongside these doulas, Ray has decided to take The Peaceful Presence Project doula training.

End-of-life care for under-resourced communities

Lora Munn, a yoga teacher who is National End-of-life Doula Alliance proficient, took The Peaceful Presence Project training in 2021.

“End-of-life care is not only being talked about in rural communities, but also actually being spread throughout rural communities thanks to the folks at The Peaceful Presence Project,” she said.  

Munn lives in White Salmon, Washington, and serves all communities located in the Columbia River Gorge. She said she understands that “folks in rural and houseless communities may not have access to resources for the dying and their loved ones in the same way that urban communities do. Because of my education and training through The PPP, I am able to provide these necessary services to my small community. Through my training, I learned how to provide compassionate care for all beings, regardless of housing status or location.”

Because palliative and end-of-life care resources are sparse within rural and houseless communities, Collins and her team facilitate advance care planning to encourage these populations, and others, to think about their end-of-life experience.

“Parts of the state where there is no hospice care or even palliative care need more resources, and one way to address that is to have support embedded in the community,” Collins said.

Through two grant-funded projects, doulas and public health interns have been trained to hold advance care planning “pop-ups” at a navigation center for people experiencing homelessness, as well as in rural health clinics. Navigation centers are low-barrier emergency shelters that are open seven days per week and connect individuals and families with health services, permanent housing and public benefits.

Conversations about what their death experiences could entail are uncommon for people experiencing homelessness, Collins said. The general population tends to choose a spouse or family member as their medical decision-maker. But within the homeless population, a non-family member or someone in their so-called street family is more likely to be their choice. In the absence of a named decision-maker, the hospital may call an estranged family member or someone with whom they are not in contact.

“Equitable care means providing equitable services,” Collins said. “This includes advance care planning for people who are experiencing homelessness. We found that many of these folks have never been asked what their preferences are at end-of-life.”

Educating health care professionals about palliative care

Although it’s important to educate people in the community, it doesn’t stop there. Collins emphasizes the importance of education for all health professionals about serious and terminal illnesses — which is not traditionally an in-depth part of the health care curriculum.

“Nurses and physicians don’t always know how to have those conversations. Palliative care should be part of all health education,” Collins said. “Not just a specialty, but a standard part of education.”

To get participants thinking about ways to support their patients, The Peaceful Presence Project asks them to reflect on key questions: How do you ask someone about what they want if they are dying? How can you have a compassionate conversation?

“Training in communication skills allows you to feel empowered as a provider and as a fellow human being,” said Eriko Onishi, M.D., an assistant professor of family medicine in the OHSU School of Medicine and a palliative care physician at Salem Hospital. “It makes you a better listener through your professional sense of curiosity about other people. You feel as if you are truly walking alongside your patients, guiding them in the right direction, instead of just feeling the way blindly, guessing at each step.

“It’s important to understand that it isn’t about exercising power or control over patients,” Onishi continued. “Rather, it is using this powerful communication tool to support everyone involved, to help them to feel safe because the situation itself is under control.”

Onishi is passionate about the need for such conversation skills training.

“To be a clinician, both knowledge and communication skills are equally essential — it’s never a one-or-the-other choice,” Onishi said. “As a physician, my job is to provide medical guidance to the patient and their family, guided by the best intentions and a caring heart. If I cannot do all of these things, I cannot do my job.”

Ultimately, Collins said, it’s up to the individual patients to discuss how they want to experience their end-of-life, knowing that flexibility and adaptability are key. Having a plan is important, and when things don’t go according to plan, community-based support for death and dying can alleviate a stressful process for all involved — providing what people need to live and die well.

Complete Article HERE!

When death becomes you

— My journey towards becoming a death doula

Dana Purdom taps into her deep intuition to find her calling as a death doula.


When I was as young as four years old, my mother would send me to my grandparents’ home to stay during the summer months. I was this little girl, neatly coiffed, dressed impeccably, and placed on a plane to fly across many states to Leakesville, Mississippi. I was a quiet and reserved child, and shy, which, I believe, others perceived as timidity and an inability to fit in. But I knew this was not true.

I was deeply intuitive, sensing, empathetic, and feeling all things around me. I wasn’t quiet. I was observant. I wasn’t shy. I was curiously aware. I wasn’t timid or unable to blend in. I was simply different. And this made others uncomfortable in ways I couldn’t name or remedy at such a tender age. So I shrank into myself and sat quietly as I watched others – aunts and uncles, cousins, friends – live their lives out loud. The only people I felt understood and knew me were my grandparents. They had a way of communicating, seeing and loving me in ways I can only attribute to them also being intuitive.

During those summers. I spent hours wandering in the fields and deep woods, exploring and communing with nature. I heard the sounds of animals moving from one place to another, giving instructions of where they were headed next. I would listen to the trees, the leaves and the brush as they sang, sending messages to one another of what season it was, and whether or not to bend and stretch when the breath of God blew on them.

And though these times were glorious, expansive, and faith-forming for me – instilling a sense of other-worldly trust and peace – there were moments of fear of the unknown, of otherworldly happenings that I couldn’t explain.

At times, asleep in the back room of my grandparent’s home, I would be overcome by a weighted feeling, making it difficult to breathe. Subconsciously, I was taken to a deep, dark, unknown place. No matter how hard I fought – to get away, to breathe, to scream – it was pointless, as the grip on me was too great to overcome.

“The witch was riding you,” a family member told me.

Whenever this happened, it would physically feel as if I was experiencing death, or the dying process. First: asphyxiation, immobility and panic would set it in because somehow, even in this state of paralysis, I knew death was imminent. And then, an unwavering calm, a gentle peace, a release or surrender to the unknown would take over, shortly after the “witch riding my back” dismounted and the paralysis ended.

These moments are what I understand to be my induction into the mystical world of death and dying. As these moments continued to happen over the years while visiting my grandparents, I began to intimately connect with the peaceful surrender of death. It no longer frightened me, but instead, drew me closer. I wanted to know more about what I was experiencing and the visions I saw. I wanted to know more about death and its transcendental relation to the beyond.

Early on, I couldn’t comprehend my curiosity about death or why these experiences happened to me. But I’ve come to understand this mystical phenomenon as a gift, a blessing and a means to serve others by becoming a death doula.

A culturally spiritual call

We live in a death-denying culture. But because of my childhood, the draw of the witch that was riding my back, and my growing intimacy with death, my curiosity grew into a deep passion: what happens, I wondered, when a physical body is no longer present in the natural world and has returned to its original form as a spirit, transitioning into its next phase of life?

For me, death is never ending; it is a transition from one life-form to the next. I am a soul cultivator, one who seeks to hear the heart of others, beyond the words they speak, desiring to reflect back to them the love, care, and peace they long for in their lives. If they never received this type of care in life, if I can give that to them in death, I will have lived fully into my call of “doing the work my soul must have,” as theologian Katie Geneva Cannon challenges each of us to do.

For me, death is never ending; it is a transition from one life-form to the next.

Like a midwife who assists in the process of birthing, a death doula “guides a person who is transitioning to death and their loved ones through the dying process,” according to the International End-of-Life Doula Association. Death doulas have existed as long as death itself; culturally, however, Black death doulas have specifically answered the spiritual call between Black people and their tormented, historical relationship to death and dying. This became more pronounced during the COVID-19 pandemic and the growth of social movements focusing on Black and brown lives — and deaths.

“The inequities in the way we live and die could not have become more apparent during this time, coupling both the pandemic and social movements we’ve witnessed in the last two years,” according to grief consultant Alica Forneret in a story on refinery29.com. Forneret also is the founder of PAUSE, which creates culturally specific spaces that provide end-of-life resources and grief support.

Nikki Giovanni once said, “death is a slave’s freedom.” Black people’s history with colonized culture has demanded that the care and personal needs of its own community regarding death and dying be met in ways that greater society doesn’t recognize.

“God’s salvation is a liberating event,” James Cone wrote in his book, The Cross and the Lynching Tree, “in the lives of all who are struggling for survival and dignity in a world bent on denying their humanity.”

New rhetorics of lynching and continual perpetuation of Black tropes dehumanize and distort one’s humanity in death. These are primary reasons why Black culture, by restoring power and dignity to the dead, has taken personal agency in God’s vision for humanity. Black funerals, therefore, are celebrations that honor the life that was lived on this side of eternity, and they rejoice in the transition into the next.

And this was what our ancestors did in remote, secret places: they practiced sacred religious traditions because they were prohibited from performing funerals or any traditions that commemorated the dead. Black funerals were once one of the only spaces not permeated with Whiteness, where we could live into our traditions in our own sacred ways.

And so, more and more Black people, by becoming or by employing death doulas, are seeking to protect the knowledge that not only Black lives matter, but also Black deaths.

Black ancestry has taught us to acknowledge death as a moment of joy, to celebrate the transition from pain and suffering in this world, to that of being in the arms of their Creator, where they will walk around heaven all day, as the song goes. Funerals, for instance, are called “homegoing services,” and are outpourings of both joy and grief. Helping the dying do so in dignity while remembering and honoring ancestral traditions, and ensuring that the family of the dying person is nurtured, became the impetus that moved me in the direction of becoming a death doula.

Black ancestry has taught us to acknowledge death as a moment of joy, to celebrate the transition from pain and suffering in this world, to that of being in the arms of their Creator.

While there are currently no licensure requirements to become a death doula, organizations exist to provide death doula certification and training. Going With Grace (goingwithgrace.com) offers death doula/end-of-life training “steeped in ancient wisdom traditions adapted to modern times” and prepares individuals to take the National End-of-Life Doula (NEDA) proficiency assessment. Passing this curriculum exam, according to the NEDA website, earns the doulas a badge that assures them and the families they assist that the doula has competencies and knowledge around, among other things, spirituality, the dying process, non-medical care and comfort, and grief, and that their understanding of these areas aligns with those of others in the field.

Being a death doula differs from chaplaincy and hospice care. While death doulas do not provide medical care, they do collaborate with hospice programs, bridging the gaps and strengthening the relationships between medical and non-medical support, as noted on cremationassistance.org. Hospice care is regulated by Medicare rules, which limits caregivers’ interactions with patients and families. Death doulas bridge this gap by showing up in the following ways: grief support, advance health care planning, end of life planning, practical training for family caregivers, funeral/memorial planning assistance, needed relief for family caregivers, companionship to patients, vigil presence for actively dying patients and more, as every death doula is different and has their own specialties they provide.

And while chaplains also do this work, there are differences between chaplaincy and being a death doula: education, training, certification, and ways of making meaning of a person’s experience of sickness, death, and dying. Chaplaincy is not only shaped by one’s own religious tradition but also the extensive religious and philosophical studies completed during graduate school. Death doulas have more flexibility in their practice. Doulas are able to serve as many or as few clients as they wish to serve at a time, whereas chaplains are limited to serving those within the institutions where they are employed. And death doulas are independent contractors charging an hourly rate or setting a flat fee, but services are not covered by insurance, Medicare or Medicaid.

A death doula can also help relieve the burden of improper or confusing end-of-life planning, and support family members who are responsible for completing their loved one’s affairs. You can find a death doula by checking registries that are available in individual states.

Death should not be a taboo topic

We live in a death-denying culture, where the discourse surrounding death is taboo, and we don’t want to accept that we live in a finite world. We shun people who talk about death, especially those people who may be living terminal lives. We do this as a means of self-preservation, not wanting to be exposed as being vulnerable or appearing weak for expressing emotion. I believe that if we talk about death and dying more, in constructive and life-giving ways, and with the support of a person like a death doula, the topic will become less taboo.

I recognize I have a unique perspective concerning death and dying. Death is inevitable, and neither humans, nor any of creation, were meant to live forever. I believe we are spiritual beings, having a human experience. And as I was writing this article, the song “Take Me to the Water (to be baptized)” by Nina Simone dropped in my spirit.

In death, we are reminded of our ‘maternal baptism’: dying to the spiritual realm from which we came and, born to life in the maternal waters of the womb, becoming the physical beings we were created to be. In baptism, we see the death and resurrection of Christ as well as our own. Though, in baptism, we are “not actually dead, placed in the tomb, and brought back to life …” the sacrament re-members us to Christ’s passion, giving us new life in Christ (Cyril of Jerusalem).

If we allow this consideration of baptismal grace being the death and life of a soul, then death becomes a return to the waters that once birthed us. No longer physically present in the earthly realm, and yet, still present as spirit.

Like other injustices, this “holy disruption” of a pandemic “has magnified the problems Black people face in the death and dying space,” says Alua Arthur of Going With Grace.

By dispelling myths regarding death, through curating soft landing spaces for mind shifts to occur, while holistically supporting those in the midst of experiencing death, I aim to become a change-agent in the death doula industry — re-writing the narrative of what Black death is and how beautifully sacred the dying process can be.

“When death comes to find you, may it find you alive.” — African Proverb

Complete Article HERE!

Giving the gift of a ‘good death’

By Megan Crotty

It was a normal workday at Patty Burgess’ cosmetic surgery consulting business, then the phone rang.

It was a call for her coworker, Rona, from her doctor that made her visibly upset. The doctor had test results for Rona but would not give them to her over the phone, so Burgess said, “We’re going,” and the two drove to the doctor’s office.

The tests revealed stage 4 lung cancer.

“It was shocking, and it just changed everything on a dime,” said Burgess, who became Rona’s caregiver at the end of her life. “She was a dear friend. She helped introduce me to hospice, and I learned what an unbelievable, valuable benefit it was. The next thing you know, my whole life had changed.”

Serving a need

After being a volunteer, trainer and community educator for hospice, Burgess saw the need for better training of hospice volunteers and caregivers. Fast-forward 20 years, and Burgess is a national trainer, speaker and educator in end-of-life matters, and she has trained more than 15,000 volunteers, staff, end-of-life doulas, caregivers and students thanks to her company, Teaching Transitions.

The course, “Certified End-of-Life Specialist and Hospice Volunteer Designation,” is being offered at North Carolina’s Randolph Community College starting next month.

Patty Burgess

“People plan more for buying a car or going on vacation than they do for their own death,” Burgess said. “One of the things that our course seeks to do is try to help transform the experience of dying, grief and loss from one of only fear or sadness or being overwhelmed into peace, connection, meaning and even a little bit of awe. That’s a good death.”

She continued: “Lots of times the patient is ready, but the family is not. Sometimes, getting the family to come to terms with, and to understand the sacred passage — and all the connection and time and all the beauty that can really be had — can make a huge difference in the death of their loved one.

“I’m not necessarily wrapping death up with a big red bow because sometimes it can be pretty messy, but it’s usually messier when people don’t know what to expect; they’re fearful, and they’re overwhelmed. But if they know what to expect and understand that this is a normal, natural part of life and if we’re seeking a good death, it’s much more likely when people know what’s coming.”

Course details

Burgess said the immersive, self-paced, online course teaches students to cultivate a high level of compassion and empathy, and to eliminate factors that may obstruct the delivery of high-quality care and companionship to whomever they serve.

The course features 10 modules:

  • Welcome, Overview and Purpose of the Course
  • Hospice 101: Introduction to Hospice Philosophy, Benefits, Eligibility, & Team Approach to Care
  • Personal Death Awareness, Exploring Beliefs and Fears, Advance Directives
  • End of Life Communication: Speaking and Listening Differently
  • Clinical Care at End of Life: Signs & Symptoms of Approaching Death, Universal Precautions, Pain & Symptom Management, Safety in the Home, Actions When Death Occurs in Various Settings
  • Spiritual and Cultural Diversity and Inclusion in the Dying and Death Experience
  • Loss, Grief and Bereavement: Understanding, Coping and Healing: Supporting Others through Grief
  • Self Care & Resilience: Managing Personal Stress and Avoiding Burnout
  • Legacy: Last Words, Eulogies and a “Dialogue with Death
  • Putting it All Together: Volunteer Roles, Visit Etiquette, Ethics and Needs of the Dying

The course also meets and exceeds the Medicare regulations for hospices, and the training recommendations by the National Hospice and Palliative Care Organization (NHPCO). It is appropriate for personal or professional caregivers or healthcare staff wishing to enhance skills and credentials.
It is also valuable for various roles and disciplines (as either entry-level training or continuing education), such as nurses, grief counselors and more clergy.

“There are lots of times when we have nurses in the program who have worked in oncology and spent their time trying to keep people alive,” Burgess said. “They never really dealt with death. Initially, this course was designed for hospice volunteers, but it’s for the layperson, students looking to enhance their professional credentials… We’re all going to become a caregiver to someone.”

Burgess was one of seven original founders of the National End-of-Life Doula Alliance (NEDA) in 2018. Today, NEDA has welcomed more than 1,300 members since its formation and continues to grow as this healthcare segment gains popularity and utilization.

Complete Article HERE!