NC Women Embrace Ancient Practice of Death Caregiving

Durham, N.C., resident Omisade Burney-Scott (right) with fellow death doula Vivette Jefferies-Logan.

By Cynthia Greenlee

Ivette Jeffries-Logan and Omisade Burney-Scott are friends for life – and collaborators in death. Three years ago when a mutual friend realized she wouldn’t survive pancreatic cancer, the two central North Carolina women were within the circle of friends she summoned.

Over the course of about three months, the women stayed at Cynthia Brown’s side, as the community activist and one-time Durham City Council member went about the process of dying.

They rubbed her head, kept a watchful eye on her pain, and helped her decipher doctorspeak. And when her spirits appeared to lag, they’d tell her jokes and sing at her bedside.

This, Jeffries-Logan says, was a good death: “If I can help someone at the end of life heal and be clear, I will. There are some things we are required to do alone, but we are not isolated. We are community people. What happens to my nation happens to me. What happens to me happens to my nation.”

Jeffries-Logan and Burney-Scott are death doulas; their form of caregiving is both old and new. The ancient Greek word “doula,” meaning “woman servant” or “slave,” was repurposed in the 1960s to describe birth workers who offer encouragement, back rubs, and other assistance during childbirth.

These days, end-of-life doulas, sometimes called death midwives, are an emerging profession in the growing death positivity movement, which urges a paradigm shift for thinking and talking about death as natural and not inherently traumatic.

They provide nonmedical support to help ease the final transition for the terminally ill. But it’s not merely about that culminating moment, “The End.” They help the dying and their loved ones navigate death with all its “before and afters” – including sickness, acceptance, finding resources for all the legal housekeeping, funeral planning, and bereavement.
For Burney-Scott and Jeffries-Logan, it’s the highest calling.

Sisters in ritual, they performed sacraments of soothing and release drawn from their West African and Indigenous spiritual traditions. Burney-Scott is African American and was initiated in the West African Ife religious practice, and Jeffries-Logan is a member of the Occaneechi Band of the Saponi Nation, a tribe rooted in the North Carolina Piedmont region.

Being a death doula “is not fun. But it’s an honor,” says Burney-Scott, a healer and longtime advocate who most recently worked as a reproductive justice organizer in North Carolina.

She stumbled into the practice when her mother’s dear friend, a hospice nurse, showed Burney-Scott what to do at her mother’s passing.

“I didn’t want to do it,” she says. “The thing I feared most, from when I was a little girl and even when my mom was healthy, was losing my mother. She was that mom that all my friends would talk to, the mom who could let you know [you] were the most special person in the world even when she was yelling at you to do your laundry.”

Near the end, her mother made her retrieve a manila envelope containing her will, insurance information, deeds – the bureaucracy of death. But without ever using the word “doula,” her friend guided Burney-Scott in ushering out of this world the woman who had brought her into it.

“Aunt Cora” encouraged Burney-Scott to whisper her love in her mother’s ear, to hold her hand, play music, and to be present in “an organic practice.” One day, when her mother struggled to breathe, Cora assured Burney-Scott that she didn’t need to fetch doctors – that nothing was wrong.

“She’s leaving,” Cora told her, a simple statement that’s also a tenet of end-of-life care: Death can’t be controlled, but you can prepare for some aspects of it.

Because there is no universal or official training, no licensing and no regulation, there is no official estimate of how many death doulas operate in this country.

But death and dying are constant. And beyond the eulogies and coffins, there’s a clear and growing need for death-related services. The number of Medicare-approved home- and hospital-based hospices, for example, rose from barely 30 to slightly more than 3,400 between 1984 and 2009. A decade later, more than 4,500 exist, according to the Centers for Medicare & Medicaid Services.

Groups such as the International End-of-Life Doula Association and others train and certify doulas, providing hands-on experience, like a practicum. Still, many death doulas enter the field as Burney-Scott did, pressed into duty by a family member’s passing.

Few can make it into a full-time, paying job. Others have a background in the clergy or are people of faith, are volunteers involved in work with the sick and shut-in, or are shamans or healers.

Still others start end-of-life doulaing because they are nurses, midwives, or health care professionals who, through experience, have come to know that end of life is more than just what happens to your body.

Merilynne Rush, a nurse and home-birth midwife, co-founded Lifespan Doulas, an organization that trains and certifies end-of-life doulas. In three years, she says, the group has trained 200 people. She sees the need to educate and vet death doulas even while she thinks that community-trained doulas are valuable and necessary.

“There are so many people who are called in their communities [to do this] that no one should tell them they can’t,” Rush says. “I’d never be able to go into every community. That’s one reason for never having any kind of regulation that imposes a state-sanctioned structure that says you are in or out.

“At the same time, when you are working within a medical organization, they need to know you are OK and there are some standards,” she adds. “Training should never be mandatory, but optional.”

A diversity consultant who focuses on Native communities and trauma, Jeffries-Logan distrusts what she believes is a move toward professionalization.

Her death doula work is grounded in Indigenous customs, and communicating with the ancestors does not happen through curricula. Heeding a call from her ancestors, she did a traveling ceremony, designed to pave a deceased person’s road to the afterlife, for an infant relative who died before he turned a year old.

As part of a common tribal custom, she won’t speak the name of the deceased aloud for a year; to do so could keep the spirit tied to its temporal life – now a thing of the past – and distract it from the arduous journey to the ancestors.

Neither she nor Burney-Scott takes money for what they do. Rather, they extend their services to family and friends based on existing connections and an understanding that death is cultural and clinical. “It’s not like I was going to roll up and do this with just anyone. I don’t do shallow-ass relationships,” Jeffries-Logan says.

She questions what happens when the training moves out of informal community pedagogy and into a classroom.

“Who’s the certifying body? Who has the funds to pay for services?” she asks. She thinks of formalizing death doula work in the same vein as yoga, an Indian spiritual system that has been co-opted from communities of color and networks of caring to be dominated by White instructors who teach a fraction – the poses, the breathing – of the whole for pay.

Both women know that communities of color lag in accessing end-of-life care – whether due to cultural beliefs, experience and well-founded fear of racism in medical settings, lack of insurance or financial resources, or misconceptions about what’s available.

For example, Black people represented 8% of those receiving Medicare-funded hospice benefits in 2017, compared to 82% for White people.

In many Southern Black communities, people won’t talk about death, Burney-Scott offers. “There is truth in our mouth. You can manifest things with your word. Don’t talk about death [lest] you invite it in.”

That goes for other communities, as well. A 2010 study comparing Latino immigrant to White cancer caregivers found that the Latinos were surprised and even disturbed by transparent talk about death in hospice pamphlets and consultations.

Furthermore, Rush says that generally when death is imminent, “most people are overwhelmed and don’t know where to turn. They don’t even know that they can get hospice earlier. And even then, they may have a nurse come in for a few hours or an aide, but they aren’t there all the time. People have to rely on their community and network.”

And that’s just what Cynthia Brown did once she accepted that she wasn’t going to beat cancer, calling on the women her family members sometimes referred to as “Cynthia’s girls.”

“She invited us into the process from the very beginning. We swung into action on the logistical things: running errands, taking her to appointments, making meals,” Burney-Scott says.

“And then she said, ‘I want to cut my hair.’ She had 12 braids left. Each one of us cut two braids. Then, she called and said, ‘Hey, will you come over and help me write my memorial?”

She summoned Jeffries-Logan and another friend to help her assemble and bless her ancestors’ altar. With trademark precision and humor, she even planned who would cook at her funeral repast or meal: not her many loving White friends; she didn’t trust their chops in the kitchen.

Her death doulas and friends, in turn, called on each other, their own histories of loss, and their ancestors to help guide Brown through her own departure.

And when the end came, the friends all rolled to the hospital one last time. Burney-Scott donned her trademark white head wrap and packed a bag with crystals and Florida water, a citrusy blend believed to have calming properties.

Jeffries-Logan carried tobacco as an offering; red cedar to represent blood and life force; water from the Eno River, which courses through her tribal nation’s territory; and a ceremonial turtle rattle, used by tribes in special ceremonies.

“Cynthia fed me, I laid up on her couch, we carpooled to anti-racism trainings around the state,” Jeffries-Logan says, her eyes moist and a catch in her voice. “And when we did a ritual for my mother [who died from Alzheimer’s disease] in the ocean, Cynthia told me, since she had lost her parents at a young age and had to be like a mother to her younger siblings, she knew what it was like to be a motherless child. I was going to do whatever I could for her.”

She didn’t want her beloved sister-friend “scratching and clawing to stay here.” So she stroked the soles of Brown’s feet – which got cooler and cooler as death approached – not to bring back sensation, but to help untether her from this earth.

When Brown took her last breath, Burney-Scott’s and Jeffries-Logan’s hands were among those resting on her body. It was a fitting end: a social death for a community advocate who told her friends, “You continue to fight the good fight, and you have to promise me that you won’t leave anyone behind.”

Complete Article HERE!

Exploring the End with a Death Doula

By

Unlike most people, Anne-Marie Keppel isn’t afraid to talk about death. From her home office on Craftsbury Common, she works as a death doula and life cycle funeral celebrant through her businesses Stardust Meadow and Village Deathcare. When jewelry maker and Hardwick resident Cecilia Leibovitz lost Michael Secore — her partner of nearly 18 years — to cancer last September, Anne-Marie was there to help ease the transition and provide support to the family during their time of grief.

Now Cecilia makes memorial jewelry to commemorate loved ones, using pieces of clothing and personal artifacts. We sat down around Anne-Marie’s table with glasses of mint tea to talk about our experiences with death and why we are so afraid to discuss it openly.

Bereavement doula help grieving families with pregnancy loss

“I couldn’t believe the suffering. We can’t not support these families.”

By Meghan Holohan

When Holly Wilkerson was 21 weeks pregnant with her second child, she went for an appointment to learn her baby’s gender. Instead she heard tragic news: The baby had passed away at 16 weeks. Soon after she went into labor and returned to the hospital to deliver her stillborn baby. She had no idea what would happen. Then Heather Bradley arrived.

“I was very thankful to have her navigating. I had given birth before. This was a very different experience, obviously,” Wilkerson, 32, a high school German teacher from Greensburg, Pennsylvania, told TODAY Parents. “She really helped talk us through the feelings we were feeling, kind of making sense of things.”

Bradley is a bereavement doula, a professional who supports people “through grief and loss” of childbirth. While doulas coach families through pregnancy, birth and the postpartum period, bereavement doulas help families through pregnancy loss. That means they comfort them during the labor and delivery, help them fill out death certificates, assist in making funeral arrangements, help moms when their milk comes in and coach them on how to react when people ask, “What happened to the baby?”

What does a bereavement doula do?

“It is stuff you never think you’ll need to think about,” Bradley, of Pittsburgh Bereavement Doulas, told TODAY Parents.

Bradley had worked as a doula for years, but when a friend suffered a miscarriage she felt stunned by what the grieving mom experienced.

“It was awful. Hearing what other people said to her and how other people abandoned her. I couldn’t believe the suffering,” Bradley said. “We can’t not support these families.”

She started researching bereavement doulas, sometimes called death doulas, and took some online courses and attended conferences. For the past year, she’s been offering her services in the Pittsburgh region.

“The research out there has shown what is important to these families is continuity of care,” she explained. “It is the same person who knows your story and your issues. Having access to resources and options is key.”

Heidi Faith founded the bereavement doula training network Still Birth Day, which she started after she experienced pregnancy loss and grappled with so many difficult challenges. She wondered how she could tell her husband or what it was like to be a mother to a child who did not live. She had worked as a doula for a decade, so she realized she could offer something to families going through the same thing.

“I am here to bridge the gap where birth and death meet. I am here to provide comfort,” the Kansas City, Missouri-based doula told TODAY Parents. A bereavement doula, she said, “is someone who can translate and help them move forward while they’re crumbling.”

Often family or friends of a woman going through pregnancy loss finds Faith and connect with her or another bereavement doula for support for their loved ones. Faith finds that treating the family with dignity and respect helps them mourn and celebrate their child.

“A few generations ago they thought the most prudent thing is to rush the baby out of the birth space and tell the mother just to move on,” she said. “Women in our family tree will tell you, ‘50, 60 years ago I gave birth to my baby and she died and we never talked about it. I wish we would have.’”

Complete Article HERE!

Scared of death?

An end-of-life coach might be the answer

By

You may be familiar with birth doulas. These coaches, or “birth companions” assist pregnant women through the delivery of their child and postpartum recovery. They’re not OBGYNs, but they are highly trained in how to offer emotional and physical support and guidance to a mother.

Sound nice? Plenty of moms-to-be think so, and the doula movement has been growing steadily over the past couple of years. Now people on the other side of the life spectrum can contact doulas as well to quell fears about dying and ease their transition.

In order to decide if an end-of-life doula is right for you, it’s first important to understand what exactly they are, and what they’re not.

First off: The preferred term is, in fact, end-of-life doula, rather than “death doula.” Death doula admittedly has an intriguingly spooky, cultish air about it, but it tends to perpetuate negative misinformation about the role, like the idea that these doulas assist in administering lethal injections. And in order to bring awareness to any movement or group, it helps to consistently use the same terms.

To find out more, Considerable spoke with Deanna Cochran, founder of Quality of Life Care and one of the founding directors of the National End-of-Life Doula Alliance

“I’ve been doing this since 2005, before there was a death-positive movement at all,” Cochran said. “What was going on was a scattering around the world … I found them when I began blogging in 2006 as a private end-of-life doula.

“I thought I was going to cause a scene doing what I was doing … I wanted everyone to know that you can have this medicine, these treatments, this therapy long before you’re sent to hospice. Nobody wants to admit they’re dying, but then people have miserable experiences dying because they’re not getting palliative care.

So what exactly is an end-of-life doula, and how are they different from, say, a hospice nurse or in-home caregiver?

Cochran described an end-of-life doula as “a person who accompanies another through dying and death — holistic, nonmedical, practical support.”

Doulas don’t exist separately from hospice care. In many cases, end-of-life doulas work in conjunction with hospices to provide an overarching holistic experience.

“End-of-life doulas accompany hospice,” Cochran explained. “Hospice is fantastic, but the problem is they don’t have the kind of time that might be needed. Nurses can’t stay with a patient for hours and hours — sometimes the hospice would like more support for the patient but the hospice doesn’t always have the volunteers available.”

“[Think of a doula] kind of like a firefighter; the doulas understand that you never know when vigils or a high-need situation is going to happen, and they’re willing to go out there in the crisis situations. Hospice volunteers are not expected to tend to crises; they’ve planned their volunteer schedule. The doula team is that kind of team within hospice.

“We’re like mediators or advocates; we’re not advocating for the family against the system — we’re advocating for the family and the system.”

In many ways, doulas act as a bridge between the other care services end-of-life patients will receive. 

“Information gets lost between nursing home, hospital, and rehab. Medications get lost along the way, people aren’t getting informed, so a doula can make sure everyone’s informed all along the way,” Cochran said. “At death the [hospice care] team is gone; bereavement is a new team. But a doula is entered into the system before death, during, and after, during bereavement. They offer an extra layer of support not just for the family, but for the hospice team. Extra expertise, extra training, and they know their place alongside hospice. It’s not a different agenda.”

Doulas are trained to assist both the dying patient and their loved ones through all stages of death, something that most hospitals and hospices don’t supply. They have to be incredibly empathetic and ready to jump in with an appropriate care response in all manner of situations.

“[Doulas] have to be OK being a witness and not a savior; a companion, not a leader. They have to come in with curiosity, not a plan. They have to be very self-aware,” Cochran told Considerable.

Death and the dying process is a sensitive, tricky subject, and some misconceptions about end-of-life doulas have arisen as a result. Doulas are often referred to as spiritual, and their approach to help and healing has spiritual elements. “Spiritual is a term that especially means vastly different things to different people, and some patients may feel concerned by that definition.

“Doulas are not trying to replace the [hospice] chaplins by providing spiritual care. Just by being present, that’s spiritually supportive,” Cochran explained.

And, especially importantly: “We are not euthanizers! There was an ugly article insinuating that death doulas ‘do the final thing’ … Absolutely not. That has nothing to do with us. We would never be responsible for the final medication in any assisted death. That’s not our role.”

Cochran also mentioned that doulas are especially important these days because the way we die has changed. 

“We’re living with chronic illnesses for a long time. Modern marvels are promising to keep us alive; we’ve never died like this before, of course people are scared.”

By becoming aware of the dying process sooner, and as medical science keeps terminally ill patients alive for longer than these diseases used to allow, patients have more time to contemplate death and face the reality of what the end of their life will entail.

“In advanced illness, everyone in the care system is focusing on life, even in the face of dying,” Cochran said. “Let’s start having gentle, realistic conversations that this train isn’t going backwards. Let’s focus on excellent symptom management and care for the whole family to support you as best as possible and not traumatize you through a system that’s trying to turn you around when you’re not going to.”

To find out more about end-of-life doulas, and where to find one in your area, check out NEDA’s website.

Complete Article HERE!

‘Dying is so medicalised. It makes people fearful’

The founder of Soul Midwives on how greater compassion and care can lead to people having a more gentle, tranquil death

Felicity Warner: ‘We need to take the care of dying people back into the community.’

By

Felicity Warner wants everyone to die well. She is the woman behind Soul Midwives: non-medical companions who provide one-to-one holistic and spiritual care to people who are dying. The term “midwife” is no accident. It refers to the similarities between drawing our first breath and our last. Just as there are certain stages for a woman in labour prior to giving birth, so are there certain end-of-life stages before someone eventually dies, says Warner. It’s the same idea as end-of-life doulas. “A soul midwife will recognise those stages and will work with them like a midwife would at birth.”

Soul midwives support a dying person to set out their wishes for the final days in a death plan. They listen, keep vigil, allow people to talk openly about their impending death and fears, and provide therapeutic support to help alleviate anxiety and pain. This can be through breathing techniques, massage, sound and music therapy and essential oils. As the “soul” in the title suggests, the role also offers a spiritual dimension linked to healing and detachment. But it’s not just about helping people to die without fear, loneliness or anxiety. It’s also about making people realise they are valued, says Warner. “I’m very keen on that because a lot of people we work with don’t have anyone in their lives. Making them feel that they are special is a very big part of our role and to honour them as the people that they have been, because you can be made to feel very anonymous when you’re dying, whether old or young”.

The daughter of the former Conservative MP David Mudd, Warner cites the “harrowing deaths” of her grandmother – with whom she had lived after her parents divorced when she was six, who died of lung cancer when Warner was 14 – and her stepfather two years later that forced “an enormous amount” of processing and reflection early on and led her to become a health journalist.

In the 1990s, Warner found herself writing a number of features about women dying of breast cancer. Interviewees revealed their loneliness and isolation and the sense of being locked in a room with an elephant in it. “The biggest thing was the feeling that they couldn’t talk to anybody honestly about the fact they knew they were going to die, because everybody kept saying ‘we’ll get you through this; you won’t die’.”

They talked and Warner listened. “I think there was a healing in that they could just talk frankly about how they really felt to somebody who wasn’t judgmental in any way.” But Warner saw her journalistic boundaries begin to slide as she stepped in to fill unmet needs, such as giving a massage after one of the women confided that “nobody touches me any more” because of her cancer. When the last of six women she had interviewed died, her decision to help dying people full-time was realised.

She began volunteering in her local hospice, where she noticed “big gaps” in care delivery: the “one-size-fits-all” approach, for example, that saw everyone “wrapped up with crocheted blankets” and “given plastic cups to suck out of”, regardless of their age or their personal needs.

“I sat there thinking it would be so useful if someone could join up the dots in what I was seeing with people who were dying. If there could be some kind of middle ground between the clinical care given and the sort of tender loving care that goes such a long way when you’re really feeling ill, because that seemed to be very lacking or offered very willy-nilly and not always to everybody.”

Warner began road-testing what would become her “gentle dying” approach – the basis of soul midwifery. “It was realising how little things can make such a difference to people at the end of life. Even just sitting and holding their hand is massive to someone who has got no one else sitting with them, and having time to do that is a big thing.”

Warner outlined her philosophy in a book in 2003, then began delivering training in Dorset, where she lives. So far, more than 1,000 individuals have paid to attend her courses, including Macmillan and Marie Curie nurses, doctors, chaplains, social workers and psychotherapists working in the NHS, as well as people from South Africa, Canada, the US and Australia. Around 40% of trainees have gone on to practice.

Warner runs a referral service from the Soul Midwives website. Many practitioners offer sliding scale charges, opt for a donation or charge nothing at all. “Nobody would ever be turned away if they could not pay,” says Warner. “It is not about the money. Nobody would be excluded on financial grounds.”

Soul midwives can now be found in care homes, hospices, hospitals and within the home throughout the UK. They liaise with GPs and district nurses if someone wants to die at home. Warner admits that it’s taken time to build trust with other care professionals, but adds, “this trust has grown as the value of our work is being understood and seen.”

For her, soul midwifery is a movement that can fill the gap once met through closer community networks and she views dying as a process rather than an event – something that she feels has been lost over the generations. Recently Warner has introduced the idea of soul midwife “residencies” so that end-of-life discussions leave the confines of hospitals and hospices. “We need to bring the care of dying people back into the community. It’s been so medicalised and taken out of most people’s normal environment, and that makes it very fearful [for people].”

She cites a recent example of a soul midwife pitching up at a library for a morning so that people could come and discuss various aspects of dying. She now hopes to persuade a coffee shop chain to host residencies.

What is clear is that ensuring a tranquil, gentle death for others is also good for Warner’s own soul. She says: “I feel it’s my reason for being here.”

Complete Article HERE!

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

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

Alua Arthur

By Anisa Purbasari Horton

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

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

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

Helping people become clear on what death looks like

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

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

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

The desire to build a career around death

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

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

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

A day in the life of a death doula

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

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

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

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

On death and relationships

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

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

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

Complete Article HERE!

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.”

Complete Article HERE!