Tag: Doula

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Death doulas can fill care gaps at the end of life

Palliative care nurses, social workers and people from the funeral industry are among those who work as death doulas.

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With continual advances in modern medicine, we’re enjoying longer lives. As the population ages, and particularly as many people are living longer with cancers and chronic diseases, end-of-life care is adapting and changing.

People who are approaching the end of their lives will usually spend some or most of their time at home, requiring care and support to do so. Family members might not always be available to provide this care. When they are, the process can be rewarding, but it can also be challenging and complex, often leading to a severe emotional burden for the carer.

Gaps in our health and social care systems are starting to be filled by death doulas. But beyond providing practical support, families are increasingly seeking the services of death doulas to help navigate the experience of dying. Those nearing the end of their lives, too, may bring in a death doula to ensure they can die the way they want to.

We urgently need a conversation about death doulas and new models of care at the end of life. We are continuing to build an evidence base through research with the death doula community and via consultation with the health services that interface with death doulas.

Defining the death doula

We’ve seen a similar concept in midwifery, where birth doulas have long been providing social, emotional and practical support to help women through the process of childbirth. This has been shown to have positive outcomes for mothers and their babies.

Like birth doulas, death doulas’ roles and functions are non-medical; these can include advocating, supporting (spiritually and sometimes physically), guiding, and providing emotional support to the person and their family, mainly in the home.

We undertook a systematic review of the literature to find available evidence about the death doula role. We found little formal academic literature describing the role, their training, or contribution to individuals, families and the health system.

But what we do know is that each death doula enacts the role differently. They might spend time with the dying person, offering emotional and spiritual support, and sometimes providing physical care. They might support the family carers in the work they are doing. Some death doulas are only present in the last days of life, offering “vigiling” – sitting with the dying person so they are not alone.

Some doulas offer after-death rituals such as helping families prepare the body or keeping the deceased at home.

A death doula can provide additional support to family members acting as caregivers at the end of life.

Some death doulas are paid by families who engage their services. Families have often found their chosen doula online or through word-of-mouth. Other death doulas work voluntarily, in a similar way to a hospice volunteer. But, because there are no formal structures or registers, we don’t know how many death doulas there are.

In Australia and elsewhere, palliative care nurses, social workers and those from the funeral industry work as death doulas. This seems to be a natural progression, but it’s a grey area: doulas are providing care, but are not registered or supervised.

There is little formal assessment to guide patient and family choice or to inform end-of-life care provided by professionals.

How can doula care be formalised?

Providing care in homes can be informal. It may be provided by families, friends, or community groups. Care can also be formally negotiated and provided by health services, aged care providers or private agencies.

It’s necessary to understand the implications of the death doula role. For example, they could become part of formal care arrangements such as home care packages or via private health insurance funding.

We also need to look at how these new roles are authorised to represent the dying person, as they are neither a family member nor a qualified health professional. It’s also important that they are appropriately trained and insured (if providing paid services).

There are personal, social and cost advantages in enabling care in the home for a dying person. For families, being able to support the person in a familiar environment can be a powerful motivator to engage a death doula to fill the gaps in care provision.

For the health system, care in the home is seen as positive. It can avoid unnecessary hospital use and help spread the costs of caring.

For the dying person who may prefer to die at home, it is a way of achieving this. Importantly, death doulas can improve the dying person’s ability to control their own care.

The death doula role may well incorporate some of the direct care provided by families and help them to navigate the complex needs and planning required at the end of life. If so, death doulas could represent an important opportunity to improve dying outcomes.

We need to ensure our community is informed, health service provision crosses both hospitals and homes, and that those providing care – regardless of setting – have skills and knowledge appropriate to their role.

Complete Article ↪HERE↩!

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Cradle to the grave: ‘death midwife’ faces court battle to keep her title

B.C. College of Midwives and Pashta MaryMoon, 65, to litigate ‘death midwife’ title this week

Death midwife Pashta MaryMoon (far right) uses a live model to demonstrate how to properly wash and care for a dead body at home. MaryMoon will be in B.C. Supreme Court this week after the B.C. College of Midwives filed an injunction to demand she stop using the title.

By Liam Britten

In a sworn affidavit, Pashta MaryMoon says her passion for alternative holistic death care began when she was a seven-year-old girl watching a 1950s western movie.

She described watching a scene with a pioneer’s wife whose husband had died. The fictional woman, all alone, had no choice but to care for his body herself, prepare it for burial, inter it and then comfort their grieving children.

“Young as I was, and with the benefit of hindsight, this ‘hands-on’ approach struck me as making more sense than conventional funeral practices,” MaryMoon, now 65, wrote.

“I am a Death Midwife; Death Midwifery is my vocation and it is what I do.”

The problem with MaryMoon’s vocation, in the eyes of the B.C. College of Midwives, is its name.

The college, which is the legal body regulating and overseeing the practice of midwifery in B.C., has sent several cease and desist letters to MaryMoon since 2016 demanding she stop using the term “midwife” to describe her services.

Now, it is turning to B.C. Supreme Court to compel her to drop it in a two-day hearing this week.

Cites history back to ancient Egypt

MaryMoon evokes the Egyptian goddess Isis’ dual roles as a god of life and death to explain what she says is the traditional dual role of the midwife.

According to the college of midwives, its birth-focused registrants provide a “continuity of care and support throughout the childbearing experience.”

Before birth, they provide physical exams and diagnostic tests; during birth they can conduct normal vaginal deliveries; and they also provide postpartum care after birth.

MaryMoon says death midwifery honours the philosophy and tradition of traditional midwives as someone who “attends to birth or death.”

In a document submitted to the court, her friend Mia Shinbrot outlined the services MaryMoon provides.

Before death, she helps the dying plan at-home funerals and work through their grief; during the death itself, she organizes death vigils; and after the person has died, she takes care of paperwork, helps with the funeral and provides grief support.

MaryMoon, in her affidavit, said the dual role of a midwife stretches back into ancient times and claims its roots go as far back as recorded history, as evidenced by ancient Egyptian gods like Isis or the Bird-Headed Snake Goddess, which she claims have aspects of both life and death in their natures.

College wants to avoid confusion

In an affidavit of her own, college of midwives registrar Louise Aerts argued it is important to keep the term midwife legally reserved for college-certified midwives to avoid confusing or misleading members of the public.

Aerts declined to comment further for this story, saying the matter is before the courts, but in her submission, she noted that other holistic death practitioners call themselves “death doulas” or end-of-life doulas.”

Douglas College even has an End-of-Life Doula certificate program.

 

But MaryMoon, in response to that, said the term “death midwife” is the only title that accurately encapsulates her services and approach. She believes there is no chance of confusing her work with that of a college-certified midwife.

“When people hear ‘death midwife’ or ‘death midwifery,’ they automatically assume a philosophy about it, in part, because they’re familiar with birth midwives,” MaryMoon said.

“There’s no other term in our culture right now that that the public recognizes.”

Pashta MaryMoon says about a half dozen other people called themselves “death midwives” until the B.C. College of Midwives ordered them to stop. MaryMoon believes she is the last one remaining in B.C.

She believes that without the title, people facing death will not know that they can take a different approach to dying.

She will ask the B.C. Supreme Court for an exemption to restrictions on the midwife title on Nov. 29 and 30.

Complete Article ↪HERE↩!

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Death doula says opioid epidemic means more end-of-life services needed in the Downtown Eastside

Amanda Page Brown completed her training to become an end-of-life doula last November and now is trying to secure funding to work full time as a death doula in the area of Vancouver hit hardest by Canada’s overdose crisis

The stretch of East Hastings Street that runs through Vancouver’s Downtown Eastside sees emergency authorities respond to thousands of overdose calls every year.

by Travis Lupick

Last fall, Amanda Page Brown visited a friend in the hospital.

“As I was leaving, I saw their roommate laying in bed, skin and bones, and very little life in him,” she told the Straight. In a telephone interview, Brown explained that she recognized the man through her job as a support worker in Vancouver’s Downtown Eastside.

“He was completely alone and no one knew he was there, dying,” she continued. “I asked him if it would be okay if I visited again. He said yes.”

Brown sat with the man once more before he passed away a few days later. “I realized I was the only person who knew,” she said. “I was it.”

The experience affected Brown deeply. “He taught me much over those three final days,” she said. “He taught me the path I’m meant to walk.”

Brown learned that she wanted to help people in the Downtown Eastside make the transition from life to death. Especially those residents who might not have anyone else to be with them during that time. She began researching how she might be able to do that, and found a certificate course at Douglas College.

“End-of-Life Doulas are advocates for their clients and complement the work of the medical community and hospice-palliative care workers and volunteers,” the program’s website reads. “End-of-Life Doulas assist clients in creating and carrying out their health-care treatment decisions, as well as providing support to clients and their family and friends.”

Brown completed her training to become an end-of-life doula (also known as a death doula) last November. Now she’s trying to secure funding to work full time as a death doula in Vancouver’s Downtown Eastside.

Brown said that her plan is to collect support via her Facebook page and an accompanying fundraiser, but hopefully not for more than one year. Then, with a little experience under her belt (plus the previous seven years she’s spent employed in the Downtown Eastside), she’s hoping she can secure a staff position or reliable and sustainable funding from one or several of the many government agencies, private organizations, and nonprofits that operate in the neighbourhood.

“As a doula, you can walk in as a trusted friend. That’s what is needed here,” Brown said. “I want to be able to offer things like bedside vigils. If somebody is going to be taken off of life…and if that person doesn’t want to die alone, then somebody should be sitting with them.”

There are typical scenarios where it’s easy to understand why a death doula might be needed. For example, an elderly Downtown Eastside hotel tenant with an alcohol problem who doesn’t have any family. But Brown described other situations where it might be less obvious how someone could benefit from the presence of a death doula.

“I’ve asked drug users who have had quite a few overdoses, ‘Has anybody ever asked you if you are trying to kill yourself?'” she recounted. Brown said that with folks in that type of situation, she could befriend them and, once a bond is established, offer to help them draft an advance-care plan.

“Hey, I hear that your overdosing a lot,” Brown explained she could say to them. “Does anybody know your wishes in case something does happen to you?…Because we can do this on a legal piece of paper. Why don’t we do this?”

Brown added that these types of conversations can have unintended benefits.

“That might actually open up another conversation about maybe treatment or detox,” she said. “Maybe, maybe not. But it might be another way to open another very important conversation down here.”

There were 367 illicit-drug overdose deaths in Vancouver last year, up from 235 in 2016 and 138 the year before that. For every fatal overdose that occurs in the city, there are many more that are reversed.

Coco Culbertson is a senior programs manager with PHS Community Services Society (PHS), a nonprofit that manages more than a dozen supportive-housing buildings in Vancouver. She also happens to have the same end-of-life doula certificate that Brown has.

Amanda Page Brown is employed as a support worker and wants to become a full-time death doula in Vancouver’s Downtown Eastside.

“There are volunteer networks that provide this service for free, but maybe not necessarily for the population that we support,” Culbertson told the Straight. “There are so many people in the Downtown Eastside who are living with a chronic illness and comorbidity and who become palliative or require some level of hospice. And there are very limited resources for those folks.

“Having someone who has the expertise and the empathy—professionalized empathy—to sit with them as they live out the last few days, weeks, or months of their life, would be an incredibly meaningful thing,” she said.

Culbertson noted that PHS staff often spend time with tenants who have been transferred to a hospital and are nearing the end of their life. But everyone is spread thin, especially since the dangerous synthetic-opioid fentanyl arrived and overdoses skyrocketed, she added.

“Someone who is able to provide more support for people who don’t have a family…that would be an incredibly important thing,” Culbertson said. ” I think it is just as important to offer dignity and humanity in death as it is in life.”

Complete Article ↪HERE↩!

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‘I’m a friend at the end – why I became a death doula’

Hilary Pepiette is an end-of-life doula

When a loved one dies, it is often medical staff, a hospice and an undertaker who deal with the final moments.

But families can now bring them back into the home, engaging an end-of-life doula to take care of the last wishes and arrangements for their loved ones.

Hilary Pepiette, a solicitor, is one of Scotland’s first end-of-life doulas.

She thinks there is a great need for her role as a “friend at the end”.

Hilary told BBC Radio Scotland’s Kaye Adams programme: “An end of life doula is someone who supports and walks alongside a dying person, the family and people close to that person, through the dying process, through the death and sometimes after that.

“The doula is your consistent flexible presence to fill in the gaps and give support emotionally, spiritually and practically in whatever way it is needed for each individual person and your family.”

Hilary believes we have handed over control to the professionals.

She said: “I have seen family members who have died and I think there is a feeling for me that I would love to do more and make sure that people can have the best possible death they can have, and to celebrate life.

“It is about making sure people live their life to the absolute fullest potential as long as they possibly can, and celebrate that, and then help them have the death that they want to have, give them come control over that.

“My mum died at home and while we did the best we could and it was a good death.”

Death is a taboo

But she added: “I wish I knew then what I do now about what was going on for her at that time.

“It’s only in the past 100 years or so that people have stopped caring for their dying family members at home and it all became about hospitals and the medical profession.

“Death has become a taboo and something that people have stopped talking about. But the more we are open about it the better. Being with someone and having those final conversations is so rewarding.”

Hilary thinks people can talk about their end of life wishes more easily with someone who is not family

As a solicitor in Edinburgh, Hilary processed wills and personal business. She decided to take her end-of-life services one step further.

She said: “It felt natural. I have been a private client solicitor for more than 20 years, and through that I have worked with a lot of people planning wills, powers of attorney and advanced medical directives to help them think about and plan for the end of their life.

“It seemed like a natural progression to me to take that one step further and think about what happens after the legal documents have been put in place.”

Hilary’s firm BTO, is the first to offer an end-of-life doula as part of its services.

What does an end-of-life doula do?

A doula will talk and listen to the patient’s wishes and hopes for the way they will die

According to Hilary: “I do things from washing dishes or making their dinner or cutting someone’s nails or feeding them at the end of their life. Also providing the personal care that might be provided in a hospice.

“Also talking. There is a big role for conversation here where it can be really hard within a family to have the difficult conversations about what you want the very end of your life to be like, where do you want to be when you die, who do you want to be there. Do you want music playing?

“It is establishing what the biggest hopes and fears are. What are you most afraid of? Is it pain or losing control of autonomy, of making decisions. Having those conversations is a big part a doula can play.

“Some people are never comfortable talking about it. But most people who are given that opportunity and a safe place to do that are happy to do that and have those conversations.”

Someone who agrees with Hilary is Prof Dame Sue Black, forensic anthropologist and vice chancellor for engagement at Lancaster University, wants death to be celebrated more.

She told Kaye Adams: “It is an inevitability, it is going to happen. What we can’t control is how it happens.

“In the past that would have often been done by family. I think we have become scared of death, we don’t want to admit it exists.”

Prof Black was awarded a Damehood in 2016

Prof Black thinks people have been conditioned to believe in a certain way of doing things.

She said: “People tend to accept there are rules we have to abide by but generally there aren’t. It’s important those left behind feel they have the autonomy to respect the person they have lost in a way that helps them with their grief.

“We think a funeral has to be very specific in that it has to have hymns and speaking, and it doesn’t. We need to have a confidence that those who are left behind have control over the celebration of the person who has been lost.”

She also thinks people should not be afraid of the last moments and to make the most of them.

She said: “I think we forget sometimes when patients are advancing towards the end of life that we think they are not listening and don’t communicate.

“There is some research that suggests the last sense to go may well be hearing so that’s the time we need to tell them how much we love them, how much we care, what a difference they’ve made.

“One of the last things we can do is communicate.”

Complete Article ↪HERE↩!

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A New Life for Dying:

Death Doulas and the Death Positive Movement

By Kristi Pahr

[O]ur great grandparents and their great grandparents and their great grandparents would have thought the way we die is strange. They died at home, we die in hospitals and nursing homes. They died surrounded by loved ones, we die surrounded by doctors and nurses. They died where they lived, we die where we die. Up until the mid-1800s, death was an everyday part of life. Members of multigenerational households, which were the norm, lived together and died together. Whether it came quickly or took its time, death happened in the home, just like birth. Just like life.

And when they died, their loved ones held space for them in their homes. Family and friends grieved them and remembered them and loved them through the transition and beyond. Today, though, death is scary. Death isn’t part of life anymore. We’ve removed it from the home and tucked it away in antiseptic, clinical, brightly lit spaces and it’s become foreign to us.

But, death doesn’t have to be frightening. Or solitary. Or clinical. Death can be peaceful and calm, serene and sacred. There is a movement of people taking death back. Pulling it from the cold, harsh confines of the hospital room, and bringing it back into the home and into the world of the living. Death doulas are on the forefront of the fight to reclaim grief and demystify death.

Death doulas, or spiritual midwives, serve a similar function to birth doulas or midwives, but on the other end of the spectrum. A birth doula helps the mother bring life into the world, a death doula helps when life is ready to depart the world. They provide support for the dying and the family, creating space, answering questions, asking questions and being a calm and loving presence during a time of great change.

Janie Rakow, president of INELDA, the International End of Life Doula Association, describes a death doula as, “… someone who acts as a guide and companion through the end phase of an illness. This work can start as soon as someone is admitted to hospice.” She says, “the doulas work with the dying person and their loved ones through the final dying process and into the early grieving stages afterward.”

Rakow explained that INELDA’s doula’s work generally runs in three stages. They begin by discussing death with the patient and the family, openly and honestly, allowing them to explore their feelings and their fears. The doula helps to establish what Rakow describes as “personalized, guided visualizations” and the dying’s preferences in music and readings are also defined. A vigil plan is also worked out during this time.

The second stage begins as the patient begins to actively die. The doulas hold space created during the establishment of the vigil plan and allow family to take breaks as needed, knowing that any changes will be relayed immediately. They don’t have to be afraid of not being present because the doula is trained to recognize the different stages and hallmarks of the dying process and can alert the family as things change. The doula is present during the death and stays with the family, providing comfort and support, until after the funeral home has come.

During the third stage, after the death, the doula helps the family to process their grief and answers any questions or concerns the family may be holding onto from the death.

While the term “death doula” is new, the concept of holding death and grief as sacred is not. Death becoming medicalized and moving into hospitals played a big part in it becoming something that families and loved ones feared. Grief over the loss of loved ones, the period of mourning after a death, were, until relatively recently, significant and special things. Now, however, we are encouraged to hide our grief, to consider it a messy and private thing, when, for generations past, it was a point of community. People were not expected to grieve alone when their loved ones died. They were lifted up within their communities and mourning was neither shameful nor private. They were given time and space to mourn.

Another group whose aim is to re-center grief and take back ownership of death is the death positive movement, begun by mortician Caitlin Doughty. She started The Order of the Good Death in response to the culture of fear that surrounds modern death. The group’s mission is to break down that fear and make death a part of life. According to The Order of the Good Death, the group is comprised of funerary professionals, academics and artists who strive “to bring death awareness and acceptance into a culture that is all too often death phobic.”

Both of these groups are working hard to bring death back into life and remove the stigma and fear modern society has pinned to the natural process. Both groups advocate for death as a sacred experience, a personal experience, a life experience.

By utilizing the services of a death doula, loss and grief can be refocused on the love and the sacred, instead of on fear and negative emotions. By joining, or just acknowledging, the death positive movement, people can help to de-stigmatize the process of dying, which in the end will make the idea of death much easier for everyone to digest.

Complete Article HERE!