Updated 10/24: On October 12th, Governor Newsome unexpectedly vetoed SB 305, citing conflicts between state and federal laws as well as potential loss of federal funding. He did so “begrudgingly,” calling the federal government’s position on cannabis “ludicrous.”
The awkward legal-ish status of cannabis is something that affects many. And out of those, perhaps terminal patients are the most in need. When someone is painfully dying in a hospital, they are generally pumped full of drugs that often leave them barely conscious, or fully asleep.
Ryan had stage 4 pancreatic cancer that had reached the point where he needed professional care, but his only option to treat the intense pain was morphine, and even fentanyl—which is up to 100 times stronger than already-potent morphine—leaving him barely conscious, or asleep. The last days of his life were being stolen, and he wanted all the coherent time he could gather to spend with his 9-year-old son
So Ryan asked his father, Jim Bartell, to get him off the pharmaceuticals so he could function in some capacity during his last days. Jim located a hospital that would allow cannabis, and Ryan was promptly transferred to it. On the first day that Ryan was allowed cannabis, they had to spray a tincture under his tongue because he couldn’t even swallow.
But by the next morning, he was reportedly alert, talkative, and pain-free. Ryan was able to spend his last two and a half weeks of life chatting on the phone and taking visitors—connecting, laughing, and taking the precious time to say goodbye.
But Jim Bartell’s mission had just begun
Ryan Bartell passed away on April 21, 2018, but Jim wasn’t done with this issue. He drafted a bill that would allow terminally ill patients to use medical cannabis in hospitals.
In an interview with Leafly, he shared that as President of a San Diego firm that handles things like government PR, he’d been prepared for this mission—he’d already reviewed hundreds of government bills over the years.
After three long months of research and another three weeks of drafting, he took SB305 to Senator Ben Hueso at the end of 2018. Sen. Hueso agreed to sponsor it, and Jim and his staff continued to work together near daily until SB305 was submitted in February. Much of the pushback came from the California Hospital Association, who feared that they would lose federal funding as cannabis is still federally classified as a Schedule I drug.
But they worked through the opposition, drafting the bill so if the government were to change position and enforce federal prohibition against cannabis—then that hospital would be suspended from compliance.
And on September 11th, 2019, the California State Legislature unanimously approved their Senate Bill No. 305, which was aptly, and powerfully, titled “Ryan’s Law.” It’s now on its way to California’s pro-cannabis Governor Newsom, who is expected to sign it in the coming weeks. If all goes as predicted, it will come into effect on January 1st, 2020.
This means that starting next year, terminal medical cannabis patients with a prescription will be able to use cannabis in forms other than smoking/vaporization in hospital care. Cannabis will be procured by the patients, not the hospital. Hospitals will not be allowed to interfere with its administration, but will be allowed to help if needed.
Next steps for Ryan’s Law
Jim doesn’t plan to stop there. He says that this issue is affecting people like Ryan, and the people who love them, all over the country—so he’s doing something about it. First steps are to take on the geographically (and politically) close states of Oregon and Washington. And now they’ll only have to amend the bill with state-specific health codes instead of starting from scratch. Hopefully these states align quickly, and others as well.
Medical cannabis may be legal in many places, but patients in need of this medicine still face obstacles in terms of using it when and where they need it. While the chronically ill and those still in the fighting stages of diseases aren’t yet protected, this is an encouraging step in the right direction.
While some other states have on the books that they allow cannabis in hospitals, this will be the very first law that requires allowing it. Finally.
Even with such strict laws in place, a massive library of studies supporting the power of medical cannabis have amassed over the decades. It’s beyond time that medical cannabis became more accessible.
The booming hospice industry is changing what it looks like to die in the U.S. Rather than under the care of doctors and nurses in a hospital, more Americans than not now spend their final days in familiar surroundings, often at home, being cared for by loved ones.
While hospice has been a beautiful experience during a difficult time for many families, a yearlong reporting project by WPLN finds end-of-life support often falls short of what they need.
“Our long-term care system in this country is really using family, unpaid family members. That’s our situation,” says professor Katherine Ornstein, who studies the last year of life at Mount Sinai Hospital in New York. “As we increasingly see that we want to provide home-based care, we’re relying even more on caregivers. And it does take a toll.”
The federal government has found that families often misunderstand what they’re entitled to when they elect hospice. And many still have to pay out of pocket for nursing home services or private caregivers, which Medicare rarely covers — all while the hospice agency is paid nearly $200 a day.
Hospice has catapulted from a sector led by nonprofits and volunteers to one dominated by investor-owned companies — including several based in the Nashville area such as Amedysis and Compassus — with more growth expected.
In the process, hospice has ballooned into a nearly $19 billion industry. It’s now the most profitable service sector in health care, as the industry’s business model relies heavily on unpaid family caregivers.
“This seems like it’s in sync with patient-centered care,” says Ornstein, “but the reality of that situation may be very, very challenging.
“I think we have a responsibility to really think about whether the families can handle this.”
‘A Longer-Term Thing’
The Fortners could be the poster family for hospice of old. On an overcast morning last May, they gathered with dozens of other grieving families at Alive Hospice’s residence in Murfreesboro for the nonprofit agency’s annual butterfly release.
McCoy Fortner, 8, opened a triangular box and a dormant monarch began to twitch.
“You can also whisper to it to tell the person in heaven what you want to say,” he explained.
He held the winged messenger on his forefinger until the black and orange wings perked up and stretched out. He relayed a few words to his father, Jeremy, who died two years ago of cancer.
“Thank you for being my best dad,” he said as the monarch took flight.
McCoy’s mom, Elicia, stood behind her son with tears in her eyes. Her husband called off endless chemotherapy. He was on hospice at home and then moved to a residential hospice facility where he passed away. Between the two, he was on hospice for 10 days.
Elicia Fortner said she just wishes they had stopped curative treatment and switched to hospice sooner.
“I don’t know if I really understood the options,” she said. “I didn’t realize hospice could be a longer-term thing.”
The Hospice Nudge
The average amount of time patients spend on hospice has been creeping up steadily, amid an industry-wide push that has aligned most of the interests in health care. The Affordable Care Act gave hospitals new incentives to reduce the number of deaths that occur in the hospital or shortly after a patient’s stay. Some studies suggest that’s caused an uptick in hospice use. And many doctors have been sold on the idea of prioritizing quality of life in the final days.
More patients are also eligible: Hospice has expanded beyond cancer to any terminal illness.
Very few people now die in a hospice facility. More often, hospice is received at home or, increasingly, in a nursing home.
Jessica Zitter, an emergency physician in Oakland, Calif., wrote a book about needlessly dying in the hospital on ventilators with very little consideration about quality of life. She advocates for prioritizing comfort care, which often means recommending hospice. When a patient has been told they have less than six months to live, Medicare and most private insurance will allow them to sign up for hospice services meant primarily to help them die in peace.
Zitter filmed one documentary called “Extremis.” It showed the impossible end-of-life decisions that have to be made in a hospital.
Then, she decided to make a second documentary, still in production, following a husband who took his wife home on hospice after ending cancer treatment.
Zitter met with Rick Tash and Bambi Fass for the nine weeks she spent in at-home hospice. The storyline didn’t play out as expected.
“It made me realize how naïve I — the doctor of death — was,” Zitter says. “This is this beautiful love story of these two people. Then you hear him say, ‘I didn’t sign up for this.’”
Tash became overwhelmed — from managing Fass’s morphine doses to getting her to the toilet every few hours.
With at-home hospice, everyday caretaking — and even many tasks that would be handled by professionals in a hospital or nursing home — are left to the family.
Medicare requires agencies to provide a few baths and a nurse check-in each week. But government data reveals that, on average, a nurse or aide is there at the house only about half an hour a day.
Zitter sat Tash down at his kitchen table, with his granddaughter on his lap. She encouraged calling in reinforcements.
“Asking for more support from hospice, if you need it, is really important,” she told him.
“Yeah, but what they offered me was a volunteer for two hours, one day a week,” Tash responded.
“That’s it?” Zitter asked.
“That’s what they offered,” Tash said.
Zitter was stunned. She realized Rick was getting all hospice had to provide, and it wasn’t nearly enough.
“The good death isn’t as easy as you might think,” she says. “We’ve got to put some things in place here so we can make it more likely that people can achieve that.”
When her husband got sick with kidney cancer and died four months later, Jane Whitlock, having had no experience with death or grief, found that the guidance and spiritual care provided by hospice just wasn’t enough. Resolving to find her own purpose while answering for the gaps she saw in end-of-life care, she followed her intuition and became a death doula.
A death doula, or end-of-life doula, is someone trained to provide holistic care to a dying individual. There is no nationally standardized certification program, which means there are multiple training options—a process that involves a set of training classes and documented hours of direct client support, plus whatever specific assessments a particular certification program requires. Death doulas represent a growing movement toward redefining our typical approaches to death.
A death doula’s role is as nuanced as each individual who occupies that role, and Jane Whitlock sees herself first as a companion. She provides comfort and support to the dying individual and their “tribe”—as she often refers to the circle of family and friends—through a time for which most people may not be spiritually prepared. Through intentional connection, she deciphers how she and the tribe can best serve the dying person. She abides by the slogan, “Death: it’s a collaborative event!”
This Q&A has been edited for clarity and length.
The Growler: Why do you believe death doulas are important?
Jane Whitlock: A doula helps ask the big questions so this process is as spiritually comforting as it can be. Think of your deathbed and how you want to feel—at peace, right? So, how do you get there?
A doula also gives you some sense of what’s coming and can support you through these tough situations that you may not be prepared for. You haven’t been here before and often don’t have any bank of knowledge to draw from.
Cultures have evolved to include how we care for people who are dying and have died, and while some intact cultures can trace their beliefs back very far (to the Buddha, for example), Americans don’t have those deep ties.
Since the Civil War, the standardization of funeral homes, embalming, and the medicalization of end-of-life have removed death from the home. We no longer know how to care for people who are dying, how to have home vigils, how to mark significant transition points (leaving a body for the last time, a body leaving the house).
How can our modern standardized systems shift to accommodate what death doulas have to offer?
It would be amazing if hospitals employed doulas! Wouldn’t it be great if you could transfer someone who has died to a room to clean them up, bring the family in, and have someone guide them through rituals of saying goodbye and nurturing the body?
I think a lot of times this seems like a white lady movement—like, we want to cover everything in crystals and candles and aromatherapy or whatever. I push pack against that because there are so many other ways of experiencing death. This movement needs to be more inclusive, to change a whole bunch; being a death doula is a teeny, tiny door, and there is a lot of growth ahead.
What characteristics make an effective death doula?
You have to be able to empty yourself out, to be hollow and free of judgment, of any preconceived ideas about what should be happening. You have to listen without thinking and really be with someone when they’re suffering without trying to fix it. An effective death doula is someone who is calm, quiet, and vulnerable. It’s really so much about vulnerability.
I volunteer at a hospice and often have to practice that whole “soft belly” thing, to stop before every room and become wide open. Even when someone doesn’t want to see you, you have to think, “It’s not about me.” You just kind of clear your energy, go into the next door. You have to fight being defensive in order to just be vulnerable.
What are some ways to go about changing our death culture?
It really starts with your stories. We don’t tell our death stories; we tell our birth stories and our family stories, but we don’t tell our death stories. It would be great to just listen to a bunch of stories about how it happens, maybe know just some weird and messy stuff, too. What was it like? What would you have done differently? What went well? What surprised you?
There’s this guy, Dr. Allan Kellehear, who says our inability to talk about death is a public health epidemic. He refers to the AIDS epidemic and how you couldn’t shut a bathroom stall without a poster on the back teaching about prevention and safety. Wouldn’t it be great if we took that type of vast approach to shifting death culture?
Another maverick in the field, Suzanne O’Brien of Doulagivers, says there should be someone on every block who knows the end-of-life basics so that when somebody in your community is dying, they are supported.
Who do you think is the best at approaching death?
Well, the Buddhists, hands down. They’ve got the saying: “We are of the nature to get old; we are of the nature to suffer; we are of the nature to die.” Imagine if that’s how we started every morning—we wouldn’t be so shocked by death! There are people who think that aging is some kind of radical punishment or who feel entitled to live in a full healthy body forever. That’s just not our nature.
I would say that to prepare for death, you have to get your spiritual house in order, whatever that means to you. Life is finite, super fragile, and you are not entitled to anything! So, spend your time wisely and be grateful.
Those six words are something of a mantra for Kayla Moryoussef, a Toronto “death worker” who has spent the last six years immersed in death and dying. As the program manager of the Toronto Home Hospice Association’s “Death Café” initiative, she holds sessions for people to talk about death (more about that later) and, in addition, works to help people experience a “good death.”
What might make a death good? That probably depends on the person, but one of the main things Moryoussef works to get people to let go of is fear.
And she’s not alone. While it’s still a relatively niche corner of the death care industry in Canada, there are an increasing number of people with “death doula” or “end-of-life-worker” practices and, like Moryoussef, most are participants in the “death-positivity” movement.
“It’s not that we should celebrate the fact that people died,” says Moryoussef, who works with Toronto’s Home Hospice Association and has a practice called Good Death (www.gooddeath.ca) through which she runs “Death Café” sessions in Toronto. “But we should accept the fact that people die and, even though it’s not a good thing, it’s an OK thing that’s a part of life. As soon as we recognize that, it becomes less scary.”
In a nutshell, the theory is that we’ve lost touch with death, which used to be more a part of life than it is now. Prior to, say, 100 years ago, people often died at home and, if they lived in small communities, neighbours and family dealt with a lot of pre- and post-mortem issues. As it became more “hands off,” it also became distant, invisible and shrouded in mystery. As a result, we’ve become more afraid of it. Some people use euphemisms, like “passed,” others speak in hushed tones, as though something shameful has happened. At death cafés, people learn to talk about it more openly, in hopes of getting past the fear and awkwardness.
“People get together to talk about dying and death,” says Moryoussef. “They’re not support groups, they’re not grief and bereavement groups, they’re literally just open forum events, although, since we realize that certain populations have different needs, we started to make some population-specific, so we have LGBTQ cafés and, in November, we’re having our first death café for people with chronic illness and chronic pain.”
Death cafés (or “death salons,” as they’re sometimes called) are one of the most successful components of the death positivity movement, says Dr. Katherine Arnup, retired professor at Carleton University and author of “Family Perspectives: Death and Dying in Canada,” a report published by the Vanier Institute of the Family.
“I just looked at the most recent stats, and there have been 9,261 death cafés in 65 countries,” says Arnup, pointing out that this is pretty good given that they only started eight years ago. “I’ve been to a few and it can actually be kind of fun, with a lot of laughter surprisingly. I mean, 65 countries is pretty impressive and there are other ones like “Death over Dinner” and “Death at a Bar,” you know, those kinds of things.”
There’s obviously a demand for a different conversation about death and dying than the one most of us have been having, but public and private sessions aren’t all that death workers offer. Moryoussef has been called upon to join families sitting in vigil and help dying people settle on a “legacy” — usually letters, gifts or memoirs that are to be given to loved ones, post-mortem. This, along with dying at home (when possible), is all part and parcel of the philosophy of the good death. Some death workers even help families who want a home funeral clean and preserve the body.
There are some parallels between this and the big midwifery resurgence (circa 1960-1990s) that saw feminists objecting to a medical system that tended to keep women in the dark and gave them few choices. The modern midwifery movement worked to rectify that by giving women information, encouraging them to be active in making a birth plan and, in some cases, even empowering themselves to choose to deliver at home, instead of the hospital.
So, since birth and death — the only two inevitabilities of life — arguably faced many of the same problems, why didn’t we notice that the death care industry needed some changes, too?
Dr. Arnup says demographics played a big part in the shift in attitudes toward death.
“I don’t like the stuff around the Baby Boomers so much, how you see claims that Boomers changed everything, from the way we eat to the way we die,” says Arnup. “But I think there’s something to be said for the fact that, just because there are so many of us, some have a sense that we can do anything and control things. Certainly some Boomers pushed for medical assistance in dying, which is now the law of the land, and they’re also the people who are supporting hospice.”
Boomers aren’t alone in wanting to avoid the indignities of, say, a protracted death in a hospital, but the sheer number of people in that demographic who hope for pain-free deaths, surrounded by friends and family and, ideally, in their own home, is starting to reshape the industry by supporting alternatives like Moryoussef’s.
And, as she says. It’s still sad — for everyone. It’s not a celebratory moment. But since letting go is a natural part of life, it’s also OK.
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.
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.”
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.
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.
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.
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.
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.”
