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Why people choose medically assisted death revealed through conversations with nurses

Without an understanding of the complexities of medically assisted dying, it’s difficult for patients and families to make good decisions.

By and

Since Canada legalized Medical Assistance in Dying (MAiD) in 2016, as of Oct. 31, 2018, more than 6,700 Canadians have chosen medications to end their life.

Canadians who meet eligibility requirements can opt to self-administer or have a clinician administer these medications; the vast majority of people choosing MAiD have had their medications delivered by physicians or nurse practitioners. Canada is the first country to permit nurse practitioners to assess for medically assisted dying eligibility and to provide it.

The precise meaning and implications of MAiD — in particular, who can request medical assistance in dying in Canada — is still evolving through court rulings. Québec’s Supreme Court recently struck down the reasonably foreseeable death requirement under the Criminal Code and the end-of-life requirement under Québec’s Act Respecting End-of-Life Care.

Without the requirement of a reasonably foreseeable death, it is likely that other legal challenges will occur to extend assisted dying to other groups such as those whose sole underlying condition is severe mental illness.

Involvement of nurses

Our research has explored how the nursing profession is regulating the new area of responsibility towards medically assisted dying and how nursing ethics might guide policy and practical implications of nurses’ experiences.

Current legislation guards the right of health-care providers to conscientiously object to participation in MAiD. Nurses who do conscientiously object have a professional obligation to inform their employers of that objection, to report requests for MAiD, and to not abandon their clients. They also must ensure that their choices are based on “informed, reflective choice and are not based on prejudice, fear or convenience.”

The nurses who surround the process of medically assisted dying are an important source of insight into the complex and nuanced conversations our society needs to have about what it is like to choose, or be involved with, this new option at the end of life, and to be involved in supporting patients and their families toward death with compassion.

Researchers are following how the nursing profession is regulating nurses’ involvement in medically assisted dying.

Impoverished stereotypes

Our most recent research involved interviews with 59 nurse practitioners or registered nurses across Canada who accompanied patients and families along the journey of medically assisted dying or who had chosen to conscientiously object. Nurses worked across the spectrum of care in acute, residential and home-care settings.

During our research, and as we followed media stories, we became aware that as with other morally contentious issues, involvement in MAiD has often been discussed in one-dimensional ways: We noted stereotypes of health-care providers and patients who heroically conquer suffering, death and the system by taking control of what might otherwise have been a difficult and prolonged dying. We also observed caricatures of oppositional or religious right-wing persons and institutions who stand in the way of compassion and dignity.

Neither of these perspectives do justice to the complexities of MAiD as it is enacted. Without an understanding of those complexities, it is difficult for patients and families to make good decisions.

Nurses accounts of MAiD

Nurses told us that medically assisted dying is about so much more than the act itself. Medically assisted dying is a conversational journey with patients that lasts weeks or even months.

These discussions patients have over time with skilled and compassionate health-care professionals help to determine whether this is what they really want, or whether there are other options that might relieve their suffering.

Conversations between patients and their families are essential to negotiating a common understanding and moving forward together.

Indeed, evidence has suggested that these conversations, when experienced as meaningful by patients, may help to alleviate the suffering that leads to the request for a medically assisted death. This is particularly true if the suffering has arisen from the sense of isolation.

If and when patients decide to proceed with MAiD, then conversations are required to ensure that all of the organizational details (what, where, when, how) are patient-centred choices and that those who are involved know the part they are to play. After the act of medically assisted dying, it is compassionate conversations that support families in navigating an uncharted bereavement process.

So yes, medically assisted dying is about supporting autonomy, but it is also about understanding that autonomy exists within, and is shaped by, our constellation of relationships. We need to be talking more about the essential nature of what it means to have a good death.

Complex reasons to choose death

MAiD is often spoken of as the definitive intervention that ensures control over the alleviation of suffering. But, we have learned that MAiD can also be chosen as the antidote to a system that fails in compassion or equitable palliative care access.

It may seem the perfect solution for rural and remote patients who want a home death but are unable to find sufficient palliative care in their context.

It may seem the best option for patients who do not want to enter what they perceive to be the dehumanizing environments of residential care.

We heard a story of one man who had overstayed the time allowed on a palliative care unit. His doctor was a conscientious objector to medically assisted dying so each time health professionals planned to transfer him to residential care, the man asked for a medically assisted death. In doing so his stay in palliative care was assured.

We need to ensure that inequitable access or lack of caregiving networks do not become the default reasons for requesting a medically assisted death.

We heard other stories of patients who were not willing to tax their caregivers any longer, particularly if those caregivers sent cues that they were exhausted.

So, while medically assisted dying does promise control over people’s suffering, it can also be used as a form of resistance to a challenging system or depleted support.

We need to plan ways to ensure that inequitable access or lack of caregiving networks do not become the default reasons for requesting a medically assisted death.

Deeply impactful

Nurses emphasized how important it is to have preparatory conversations repeatedly. Organizing an assisted death is labour-intensive for all involved; it requires thoughtful and detailed planning within the care system and among families and support networks.

Often the first time that patients and families hear a detailed explanation of the process is when the nurse or the physician first assesses eligibility. Nurses said it is not uncommon for patients to experience uncertainty, to vacillate in their decision around an assisted death, or to experience fear at the moment of death.

It is tough to talk about your uncertainty when so many have invested time and energy into planning your death. At the time of assisted death, nurses and physicians go to extraordinary lengths to ensure a “good death” by normalizing the process, fulfilling patient wishes and providing exemplary clinical care.

Despite all of this, the death is often deeply impactful because it is so different than the death we have known where people gradually fade away. Persons receiving medically assisted death are fully there one minute, and gone the next.

Within minutes they go from talking, to unconscious, to a grey pallour that signifies death, and this “greying” affects even seasoned health-care providers. The death can provoke an array of overwhelming emotions in health-care providers and families alike, both positive and negative.

With the changing landscape of medically assisted dying in Canada, the need for reflective conversations becomes ever more urgent. We need to better understand how medically assisted dying changes the nature of death to which we have become accustomed and how those changes impact all those involved.

Complete Article ↪HERE↩!

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Music and spirituality at the end of life

By Noah Potvin

Music and spirituality are two mediums frequently – almost ubiquitously – partnered in cultures around the world with the intention of enhancing engagement with the divine. Spiritual practices are infused with music to intensify the transpersonal components of worship, meditation, and ritual. Correspondingly, musical encounters are infused with spiritually-based beliefs and practices to provide individuals connections with themselves and others in uniquely powerful ways.

For many, this easy, reciprocal flow from music to spirituality may come as no surprise: both are malleable mediums responsive to the people engaging with them and the settings in which they are engaged. For instance, Amazing Grace performed at a funeral in a church with a large congregation might be led with a louder volume, increased pressure, and heightened resonance to match the congregation’s energy as they worship through song. In contrast, Amazing Grace performed bedside in a hospital room with a patient and caregivers might embody quieter, more prayerful qualities intending to comfortingly hold the patient in their depleted physical state and engender intimate musical sharing.

As music and spirituality intertwine, their boundaries become increasingly fluid to the point that distinguishing between one and the other becomes trivial. To be spiritual is to be musical, and to be musical is to be spiritual.

A similar malleability is also present in individuals’ health journeys. Objective characteristics of health – such as symptom acuity/chronicity; treatment dosage and frequency; and curative versus palliative outcomes – are subjectively experienced in response to the individual’s values, morals, and disease trajectory. For instance, one person’s 6 out of 10 pain is their daily baseline and thus easily managed, while another’s 6 out of 10 pain is breakthrough and requires treatment. Similarly, one person may prioritize the improved quality of life offered by palliative care while another may prioritize the potential increased longevity offered by curative treatments.

These dynamic, emergent qualities of music, spirituality, and health are a result of each being culturally situated phenomena. That is, the manner in which music, spirituality, and health are conceptualized and engaged with is directly informed by the distinct cultures in which they manifest. This leads to a fraught but important question: If music, spirituality, and health are each unto themselves complex phenomena derived from cultural factors, how do all three interact when they intersect in a singular encounter?

Board-certified music therapists frequently navigate this encounter in hospice. Hospice is a philosophy of care that prioritizes quality of life with six months or less to live, putting critical health issues at the forefront with limited time to facilitate resolution and closure. At such a juncture, spirituality can be a critical resource for patients and families who are simultaneously managing in the moment and preparing for the future. The type of resource spirituality can become (e.g., comfort in ritual, strength from scripture or peace through prayer/meditation/worship) is determined by the specific faith traditions of the patient – not just an identified denomination but the explicit experiences patients engaged in as part of their spiritual practice.

Music therapists assess those faith traditions for each patient and, coupled with a similar assessment of patients’ music traditions, craft music experiences that help patients become aware of and engage with their spiritually-based resources. These culturally informed clinical music processes interweave music, spirituality, and health in a way that affords patients agency in dictating the circumstances of their death. Yet, contemporary discussions in the music therapy literature have tended to frame spirituality from such a broad and generic stance that it becomes difficult for music therapists to locate spiritually-based resources in patients.

To address this limitation, my co-author (Cathleen Flynn) and I recently authored a paper that explored a specific culturally informed music, spiritual, and health intersection: music therapy for Christian patients and caregivers during imminent death. Using this intersection as a foundation, we developed a theoretical model positioning music therapy as a psychospiritual ministry providing patients and caregivers access to a faith-based resource – the Holy Spirit – that assists with transcendence as end-of-life transitions neared.

Transcendence, a difficult concept to lock down, is a movement beyond the typical, readily accessible experiences that define our day-to-day to experience the self and other in new ways that push beyond our known thresholds. For Christian patients who are imminently dying, that transcendence is vertical, an upward trajectory that moves them closer to an integration with the divine as they move beyond the corporeal. For Christian caregivers, that transcendence is horizontal, an outward trajectory that moves them closer to mortal support structures that assist in their transition to bereavement. The Holy Spirit, an intermediary between the mortal and divine, is the faith-based avenue through which these different but concomitant transcendences occur. From this vantage point, the music therapist assumes a ministerial role, constructing dynamic music experiences that facilitate interactions with the Holy Spirit promoting patient and caregiver transcendence.

Such explicit framing is ethically fraught. First, we do not argue that adopting a Christian lens is the “only” way or the “correct” way for music therapy to be practiced in hospice; rather, we introduce this theoretical model as a broad template for conducting spiritual assessments of patients from diverse traditions and beliefs. Second, this is a person-centered model wherein any implementation of Christian theology into music therapy processes is cued by the patient rather than introduced by the music therapist; this is an essential aspect as it avoids the perception that music therapists might leverage privilege to proselytize to patients. Third, there are numerous avenues for ethical and effective clinical support of Christian patients and families at the end of life, and this model is not meant to be a linear prescription; rather, it is an exploratory avenue that opens a multitude of additional doorways for providing psychospiritual care.

As the baby boomer generation continues to advance in age, it will be increasingly important that healthcare systems are well positioned to provide comprehensive end-of-life care addressing mind, body, and spirit as equal partners in whole-person health. Music and spirituality continue to be important day-to-day aspects for many people, and exploring diverse permutations of music, spirituality, and health intersections can be an important contribution to this pursuit of the good death.

Complete Article ↪HERE↩!

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New program provides mobile end-of-life support to people in poverty

The new Palliative Outreach Resource Team (PORT) brings compassionate medical care and support to people living in poverty at end-of-life. Dr. Fraser Black,Island Medical Program’s associate dean of student affairs, is a team physician.

Death may be the great equalizer but the availability of good end-of-life care is rarely equitable. Now, a new mobile palliative care program designed to address that inequity is providing care and dignity to people with life-limiting illnesses who are homeless and living in poverty in Victoria. 

The Palliative Outreach Resource Team (PORT) is a collaboration of the University of Victoria, Island Health, Victoria Cool Aid and Victoria Hospice. PORT acts as a bridge between people with serious illness and their caregivers, palliative care, and other health and social support systems. 

The program is built upon lessons learned from a three-year study led by UVic palliative care researcher Kelli Stajduhar, lead investigator of the Equity in Palliative Approaches to Care program with the Institute on Aging & Lifelong Health and the School of Nursing. The study followed 25 people living homeless or barely housed while struggling with life-threatening medical conditions. The 2018 report Too little, too late: How we fail vulnerable Canadians as they die and what to do about it, found that homeless and barely housed people have to navigate many systems—health care, housing, social care—and that as their health declines, their ability to access these systems also declines. The big takeaway: despite a terminal diagnosis of cancer, heart failure or lung disease, those who were able to access palliative care actually experienced an improvement in quality of life. 

For PORT’s first year, the clinical team will be funded by Island Health and Saint Elizabeth Health Community Enterprise, a social enterprise with a commitment to end-of-life care for marginalized communities. Mirroring similar models in Toronto and Calgary, people can self-refer or be referred by their caregivers to a palliative care nurse and a physician who provide whole person care, manage the pain and symptoms related to life-limiting illness, support chosen family and caregivers, and provide grief and bereavement support. Chosen family and caregivers in this population include “street family” and shelter, housing, harm reduction, and peer and support workers from inner-city community organizations who are doing the bulk of end-of-life care for people living in poverty. 

The Vancouver Foundation is funding the UVic-led evaluation of the program, as well as the development of initiatives to increase access to and quality of palliative care in the inner city. The PORT team, which began service in July, has supported three deaths and is currently supporting seven people who are dying.

“For almost a decade, providers in our community have cobbled together resources to meet the needs of our clients who are living with unmet palliative needs,” says Grey Showler, director of health and support services at Cool Aid. “We are thrilled to see PORT come to life.”

“Over the next year, we will be implementing this model of palliative care in collaboration with organizations and people who have expertise in care and support for homeless and vulnerably housed people at end-of-life including street families,” says Jill Gerke, director of the palliative and end-of-life care program with Island Health. “We are using research and promising practices to inform the development of this model adapted to our community that bridges existing support and services.”

“Palliative care isn’t a ‘thing’ or a ‘place’ but an approach that focuses on whole-person care for the person, their family and community. This approach necessitates a community response where everyone sees their responsibility and their part in care for dying people,” says Stajduhar.

Complete Article ↪HERE↩!

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The art of doing makeup on a dead body

Applying makeup on a dead person is not much different than on a living person, one funeral director says.

A funeral director says that applying makeup on a body is not much different than on a living person.

By Terry Nguyen

Evie Vargas had always been drawn to death. That sounds morbid, or possibly extremely goth, but her interest wasn’t in the afterlife nor the aesthetics. Vargas wanted to pursue a profession rooted in service, and entering the death care industry was a calling — an inexplicable calling that, once she began work, seemed like destiny.

Throughout high school, Vargas considered attending mortuary science school, but worried she wouldn’t be able to handle the sight of a dead body. Still, she knew that a two-year program could lead to an associate’s degree, an apprenticeship, and eventually a mortician job.

To gauge her nerves, Vargas decided to go to a place that would expose her to death firsthand: a funeral home in Illinois.

There, she shadowed an embalmer, who offered her a part-time job after their first session. “He said he saw something in me,” Vargas says, still amazed at how prescient the offer turned out to be. “I didn’t have a license to embalm so I did makeup, dress, and casket.” She’s worked there since graduating from mortuary school.

Even after eight years in the industry, makeup and hair is still a special part of her job, Vargas says. As a funeral director, she does “basically everything” — administrative work, service preparation, meeting with family members, embalming bodies. But she thinks mortuary makeup work is uniquely intimate and significant.

Funeral director Amber Carvaly sets up for a viewing.

Makeup plays a starring role at many funeral services — the last time family members will physically see their loved ones before the casket is closed. These services are usually done by a certified embalmer, a person tasked with cleaning and preparing the body, who takes on the burden of replicating a person’s likeness and essence. Makeup artists — whether embalmers, funeral directors, or freelance workers — find meaning in this ritualistic work of dressing a body, mulling over the details of its presentation, and receiving input from the family. It can help loved ones grieve, artists say, in remembering a person at their best.

Embalming a body and applying eyeshadow seem to demand different skills, but the work contributes to the body’s final presentation. Embalming is typically the first step; fluids are injected into a body during the process to slow its decomposition for the funeral ceremony.

According to the Funeral Consumers Alliance, the process could give the body a more “life-like” appearance, although it isn’t always required. Amber Carvaly, a funeral director at Undertaking LA in California, doesn’t think embalming is necessary for most natural deaths, although it might firm up the skin more. She says that applying makeup on a body isn’t drastically different than working on a living person.

Carvaly has an array of products in her makeup kit — typically thicker theatrical makeup for discoloration or jaundiced bodies — but drugstore brands like Maybelline Cosmetics work fine. There are little techniques and tricks she’s picked up, for example, in applying lipstick on a dead person’s lips, which are much less firm.

She uses a pigmented gloss or mixes a dry lipstick to paint the color on. Vargas prefers using an airbrush kit for a more natural look, since it provides full coverage and is easier than applying foundation.

Carvaly doesn’t work with bodies as much as she likes to anymore, ever since cremation overtook burials as the preferred means of after-life care in 2015. While there is no proven correlation between price and popularity, cremation is cheaper than a burial. According to the National Funeral Directors Association (NFDA), the average burial and viewing costs $8,508, while the average cremation and viewing comes out to $6,260.

Post-death makeup is only a fraction of the cost for burials — an average of $250 per funeral, according to the NFDA — but the added costs aren’t worth it for some, Carvaly says. Many families struggle emotionally and logistically in the aftermath of a death, she adds. The logistics that go into the burial ceremony, especially dress and makeup, are often the last things on their minds.

A common complaint from families is that a body doesn’t look like their living relative. The embalmer might have parted their hair differently or used an unfamiliar lipstick color. Carvaly points out that family members can do makeup on their loved ones before the body is sent to a home. But if they’re uncomfortable with that, she encourages them to assist the embalmer with the makeup and presentation.

“Doing makeup with the family present is extremely rewarding,” she says, adding that family members’ input makes it much easier to capture the aesthetic essence of a person. It’s helpful for the families as well: “When you’re grieving, having a physical or artistic activity can help walk you through it.”

Years before Carvaly went to mortuary school in Los Angeles, she worked as a cosmetologist on film sets. She’s changed careers multiple times — from makeup to nonprofit work to the death care industry. Like Vargas, Carvaly is dedicated to the service aspect of her job, and she sees makeup as a physical manifestation of that service.

In her seven years of work, Carvaly’s found that most people are uncomfortable in the presence of a dead body, even in preparation for the burial. “I’m more than happy to do makeup for a family if this is something they don’t think they have the strength to do,” she says. “But I want them to know that they have options.”

On rare occasions, she brings along makeup or hair tools for families to touch up their loved ones at the service. She once worked on a woman with blonde, beehive-style hair that she struggled to recreate. At the funeral, Carvaly suggested that the woman’s daughters help her touch it up — a request they were initially shocked by.

“Allowing people to be a part of the funeral is important,” Carvaly says. “Keeping that veil of magic up prevents regular people from doing something very valuable.” Families shouldn’t hesitate to ask a funeral home if they can do their loved ones’ hair and makeup, which could reduce costs, she says.

Shifting social norms and new funeral practices, like eco-friendly burial options, have driven homes to find ways to increase profits — often at the expense of families, who are missing out on an opportunity to properly grieve, Carvaly explains.

“There is no law that prohibits people from coming into a home and requesting that they do makeup on the deceased,” she wrote in an e-mail. And while Carvaly feels that her job is a calling, the daily human interaction can be taxing. The most difficult part of being a funeral director, she says, is explaining why people have to pay for certain services that the home offers.

It’s what upsets people the most, but homes also have to pay for overhead expenses — the indirect costs of operating a business. Carvaly’s funeral home, Undertaking LA, opts to rent time and space from another crematory.

Carvaly’s funeral home co-founder, Caitlin Doughty, has found unprecedented success on YouTube under the account Ask A Mortician, a series where Doughty takes questions about her work and about death.

Demystifying death is a big part of Undertaking LA’s mission — to put the dying person and their family back in control of the dying process and the care of the body. It’s a liberal “death positive” approach, one that Carvaly likens to “breaking down the walls and windows” of a rigid centuries-old industry. Vargas feels similarly, and tries to destigmatize the death industry on her YouTube channel.

After a death occurs, families often immediately send the body to a funeral home and don’t interact with their loved ones until the ceremony. And sometimes, they’re taken aback by the body’s made up appearance. Reclaiming the makeup process can be a cathartic first step, as an unexpected outlet for grief, and eventually acceptance of the death itself.

Complete Article ↪HERE↩!

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Some Blunt Advice About Your Death

Author and end-of-life educator Sallie Tisdale gets real about death and dying.

“We’re beginners at this. Everything you know falls away.”

By Sydney Worth

Sallie Tisdale has advice for all of us future corpses. And that is to talk bluntly about death—especially our own.

Tisdale has worked in palliative care and is an end-of-life educator and Buddhist practitioner who holds workshops on death preparation. Her recent book, Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying, was named one of the New York Times Top Books of 2018. In it, Tisdale explains the realities that come with dying and the importance of normalizing conversations about death.

Ideas of impermanence and rebirth after death are tenets of Buddhism, yet Tisdale finds they don’t make the prospect of dying easier to grasp. At 62, she still finds it difficult to imagine herself as a future corpse. When death hits close to home, everything feels clumsy and uncertain, she said. “We’re beginners at this. Everything you know falls away.”

Rather than planning too meticulously for  a “good death,” Tisdale suggests adopting a “mastery of death”—just coming to peace with the fact that we all must die eventually—because we can’t know how our death will go.

Still, that doesn’t mean you shouldn’t prepare. I spoke with Tisdale, and here’s what she suggested we can do.

Sydney Worth: How has your experience with end-of-life care affected the kind of advice you give in your workshops?

Sallie Tisdale: A lot of what I do as a nurse is to normalize [death]. One of the things I want people to consider if they’re going to be with someone who’s dying, is what do you bring into that room. Are you bringing ideas of what you think is a good death that might start to impact how you care for a person? A good death—most people think that means peaceful, no pain, and at home with family. That’s not realistic for a lot of people. I want people to get in touch with their own state and realize that we’re all carrying around some kind of idea about death.

Worth: Where do you think our avoidance of death comes from?

Tisdale: We in the modern West are in a unique position. In less than 100 years, [death has] disappeared from the home in the U.S. That change happened because families became more mobile and scattered. It’s the current generations that have not been exposed to it very much.

Worth: So, this lack of exposure is a result of modernization?

Tisdale: We have a fantasy that we’re going to die in our home like we did 150 years ago, but that world doesn’t exist anymore. [Death] may not look like the fantasy we’re still carrying around. A body gradually loses all of its integrity as we die. We need to say you might have diarrhea at 3 in the morning. How is that going to be handled? And how does that fit into your fantasy? I like this idea of a mastery of death meaning that I am at peace in myself. My dignity and self-worth have nothing to do with what happens to my body.

Worth: Can we start mastering death now?

Tisdale: Notice I didn’t say “master” death, because we don’t get to stop it. Mastery of death would mean acceptance. It’s this old Zen saying, “We love the china bowl because it will break.” We love the fragile. And that’s why we love each other—because we only have so much time. We see the fragility of change.

Worth: What are some things people forget to do before they die?

Tisdale: An awful lot of people never tell their friends or family or doctor what kind of death they want to have. There’s nothing more difficult than being handed this awkward object of a loved one’s corpse and being told what to do with it in a moment when you’re in emotional distress. Why would we consign our family to make that decision instead of being willing to talk about it?

Worth: When should we start preparing for death, then?

Tisdale: Today.

Complete Article ↪HERE↩!

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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↩!

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8 tips for understanding the ‘netiquette’ of death and grief

By Mark Ray

When Carla Sofka’s mother died just before Thanksgiving 2017, Sofka didn’t immediately post the news on social media. She was busy planning the funeral, making travel arrangements and getting an obituary ready for the weekly newspaper in her mother’s community.

“We had 23 hours to get the information to them if we didn’t want it to be 10 days before Mom’s obituary was in the local paper,” said Sofka, a professor of social work at Siena College in Loudonville, New York.

Then the phone rang.

Unbeknownst to Sofka, the funeral home had posted the obituary on its website, and almost immediately a childhood friend had spotted it and shared it on Sofka’s Facebook page.

“The minute that obituary showed up on my feed, people who saw it started posting comments and messages to me,” she said. “I didn’t even know this was going on, because I didn’t know it was there.”

What makes Sofka’s story ironic is that she has been writing and teaching about the impact of technology on grief and dying for decades. She even coined the term “thanatechnology” (“thana-” means death in Greek) in 1997. But in her moment of grief, she never thought to say to the funeral director, “Please don’t post Mom’s obituary on your website until we tell you that we’ve notified the people who need to find out another way.” (By the way, that funeral home now asks families whether posting is okay.)

Lee Poskanzer, CEO of Directive Communication Systems, which helps clients safeguard digital assets in their estates, experienced a more pleasant Facebook surprise in 2010 when he posted news of his mother’s death on Facebook.

“A very close friend of mine, who I would never have thought about calling, actually hopped on a plane and was able to make my mom’s funeral the next day,” he said.

The Social Media Rules Have Changed

As Poskanzer and Sofka’s stories illustrate, digital technologies have changed the rules surrounding grief and dying.

“How does one decipher a uniform approach when our society is using technology in so many diverse ways and each one of us has a different approach to our online presence and our digital footprint?” Poskanzer asked.

Fortunately, experts like Poskanzer and Sofka have begun answering those questions. While the landscape is still shifting, it’s possible to discern some basic rules of “netiquette.”

Here are eight tips about death and social media:

1. Leave the scoops to CNN and Fox News. If you’ve heard about a death but haven’t seen a Facebook post from the next of kin, that could be because family members are still trying to contact people who need to hear the news firsthand. Sofka said a good question to ask yourself is, “Is it your story to tell?”

2. Think before you post. Even when it’s appropriate to share, make sure what you’re sharing is appropriate. Don’t post painful or disturbing information without the family’s consent — and even then consider whether sharing is appropriate. “We may not recognize that we could be harming someone by posting or tweeting or putting a picture on Instagram,” Poskanzer said.

3. Avoid being cryptic. Nuance vanishes in cyberspace. A post that said “I’m praying for the Johnson family at this difficult time” could refer to anything from a death to a job loss to a house fire. “You have to know the poster in order to understand a little bit where they’re coming from,” Poskanzer said. When in doubt, pick up the phone.

4. Remember that news travels fast. When Sofka’s aunt died unexpectedly, she elected not to tell her teenage daughter, who was on vacation in Florida and didn’t know her great aunt well. Unfortunately, cousins began posting stories about the deceased woman on Facebook, so Sofka’s daughter quickly found out and wanted to know what was happening. “I can’t believe I didn’t expect that,” Sofka said.

5. Be patient. “Sometimes people watch how many people like a post or how quickly they acknowledge it,” Sofka said. “Somebody who’s grieving doesn’t have the time or energy to focus on that.” And if you’re on the other side of the situation, consider posting something like Sofka did after her mother’s passing: “I’m overwhelmed by the caring and the kindness of the postings. Please forgive me if I don’t have time to respond right now.”

6. Watch out for problems. Unfortunately, online death notices can attract everything from negative comments to fraudulent GoFundMe campaigns allegedly set up to pay for funeral expenses. “As family members and friends, if we see that, we need to contact the family immediately so somebody can contact GoFundMe,” Poskanzer said.

7. Be helpful — but not too helpful. It’s fine to offer to monitor the family’s online presence for problems, but don’t go too far. Poskanzer recalls a woman whose husband had just passed away. “While she was sitting shiva (mourning in the Jewish tradition), somebody had memorialized the page to her husband’s Facebook,” he said. As a result, the grieving woman no longer had access to the page. Facebook also has information about legacy contacts; people chosen in advance to oversee memorialized accounts.

8. Adjust your response to the situation. Poskanzer lost a friend recently who was very active on social media — to the point of chronicling her cancer battle online — so sending online condolences after she died made sense. On the other hand, Sofka talked with a woman who’s not active on social media and had recently lost her father. “She said, ‘Nobody sent cards; that was the hardest thing for me, because if felt like nobody cared,’” Sofka recalls.

As the rules of netiquette change — funeral selfies, anyone? — perhaps the best rule to follow is the Golden Rule: Blog, post and tweet about others as you would have them blog, post and tweet about you.

Complete Article ↪HERE↩!