Susan Clark, age 5, would shiver in her bed. The heat never reached the room on the top floor that she shared with four siblings. In the middle of the night, she braved the stairs in the darkness to use her eldest sister’s bathroom on the floor below. It was that, or peeing in a bucket.
That year, her 2-year-old sister died. “She just disappeared,” Clark, whose name has been changed in this story to protect her privacy, said sixty years later. “My parents never talked about it. She was just gone, gobbled up in the night.”
Clark never found out what happened to her sister, only that her parents didn’t have enough money to pay for a doctor. Later in the year, she started school in Valley Stream, New York, and discovered a funeral home across the street. During recess each day, redheaded Clark crossed the street and entered the facility. The managers let her into the home, where she ambled through a room full of open caskets. “I’d go in and look at the people, and collect all the little memorial cards,” Clark said.
Death once again touched her life decades later, in February 2019, when her youngest sister Joe died of a fentanyl overdose at age 56. She left no will, only a scribbled note for Clark that mentioned that she wanted to be cremated. That’s when the chaos began.
The rest of Clark’s family was Catholic, and demanded embalmment and a burial. Yet after Joe’s autopsy, Clark couldn’t stand thinking about how uncomfortable her sister would’ve felt with the embalming process. “I was extremely embarrassed, because of how private she was.”
As Clark lived closest to Joe’s home in Hamden, she exercised the legal authority to cremate her sister. “I rushed to everyone’s hate list. My eldest sister threatened to sue me. Now no one speaks to me. I lost Joe, I lost the whole family.”
Clark believes that her family’s inability to discuss death led to the division between her and her siblings. But Clark wants to be different from her family. After stumbling upon a New York Times article about death cafes—monthly meetings for people to chat about death over cakes and tea—she decided to venture to her first one in late July 2019 at Koffee?, a cafe in New Haven. She’s only missed one session ever since. These nighttime meetings provided Clark a space to talk about her sister again, to share with others the lonely journey she’d been on ever since Joe’s death. It was her doorway into the death positivity movement, which has been slowly altering how people approach death and dying across the country.
Two nights before Halloween, Nathalie Bonafé, with her gray pixie cut and a scarf knotted around her neck, commenced the tenth death cafe of the year by inviting attendees to introduce themselves. A newcomer named Amber, dressed in a pea green cardigan, went first. “I’m here because I’m 63 years old and childless.” With no children to care for her and her husband in their old age, she said, she worried about dying alone.
A tray of vanilla scones and chocolate chip muffins, sugary crust glistening in the reddish lamp light, passed from hand to hand. Bonafé, the moderator of the discussion, broke eye contact with Amber to place a scone on a napkin. Dripping rain jackets hung from the backs of chairs in the cafe. Of the twenty people who had gathered, some were past middle age and worried about the future. Others were doctors or hospice care workers. Four, including Bonafé, were death, or end-of-life, doulas, non-medically trained people who are hired to help those approaching the end of their lives. The rest were just curious. Amber, perched on a stool, passed the tray of desserts to Mo, an energy healer (whose name has been changed in this story to protect her privacy), with large eyes magnified by thick rectangular glasses. Across from Mo sat a young woman sporting devil horns and a young man dressed as the Joker. Behind the couple sat a young botanist and a middle-aged man with wooden beads around his neck.
As the introductions finished, Bonafé cleared her throat. “Thank you all for sharing,” she said. “I want to reiterate that we’re here to be human together. We’re here to embrace our humanity.”
Stories tumbled from participants’ mouths, as the warm lamp lighting and the scent of coffee grounds weakened inhibitions. Another death doula with curly bangs covering her forehead spoke about a client, a terminally ill 49-year-old Ghanaian woman with a husband and numerous teenage boys. “Why her? Why not me?” she asked.
In response, a middle-aged man shared that his daughter is non-verbally autistic. After spending years questioning “why me,” he decided upon a new world view. “I believe in a deterministic world,” he mused. “We’re living in this beautiful machine.” He had surrendered control over what happened in his life, and tried to live in peace with his circumstances.
Bonafé, delighted, sipped her coffee. “I’m going to have to smoke a cigarette after this because I’m on such a dopamine high. Just being present here with all of you—it’s beautiful.”
The death positivity movement aims to destigmatize death and transform it from the terrifying to the peaceful. From death cafes to end-of-life doulas, the movement supports those who feel sidelined by the medical system.
In some ways, “death positivity” is a return to the way people used to relate to death. According to Stephen Latham, a bioethics and political science professor at Yale, death was not a taboo subject before the medical advancements of the twentieth century. Prior to the invention of antibiotics in the years following World War II, simple infections killed people, sometimes within hours. “There was almost nothing that medicine could do to stave off death,” said Latham. The inefficacy of early medicine against disease made death a less predictable, pervasive force in communities. The stigmatization of death, according to Latham, is more of a modern phenomenon.
In 1953, the polio vaccine was invented. A year later, the first successful organ transplant occurred. Two years after that, metastatic cancer was treated successfully for the first time. By the 1970s, doctors became skilled enough to keep terminally ill patients alive, making death a long, drawn-out process. “Medicine got good enough to be burdensome,” Latham said, or powerful enough to maintain patient’s lives at the expense of a good quality of life. Death moved from home to hospital, causing people to spend their final days secured on a gurney surrounded by masked doctors, attached to tubes and blinking machines. According to a 2016 study, 72 percent of Americans die in hospitals.
As more people died under fluorescent lights in hospitals, death became removed from everyday life. The death positivity movement, said Latham, is an attempt to oppose that change, “to make death more calm, more beautiful, more anticipated,” something that can be normalized and embraced.
There are nine end-of-life doulas registered in Connecticut with the National End-of-Life Doula Alliance, which includes 288 doulas nationwide. From advocating for their clients’ needs in hospice care centers and arranging financial plans to making cups of tea and having deep conversations, doulas bring guidance to those who confront the medical system in the weeks before death.
When Bonafé, owner of a private death doula practice called A Gentler Parting, takes on a client, she never knows how she will end up assisting them. If the client asks for a shaman, lawyer, or financial consultant, she finds one. If the client is in pain, Bonafé consults nurses to readjust pain medication. If the client’s family members are in distress, she talks them through any fears they may have. The crux of the job, according to Bonafé, is being a loving presence. “They just want the company,” explained Bonafé. “We let them be in this circle of love.”
Bonafé’s fees depend on a client’s needs. She charges $500 for two to three preliminary meetings, which last around six hours each. She meets with the client’s family and combs through legal documents, such as wills and advanced healthcare initiatives, which outline a patient’s end-of-life medical wishes. In total, most clients end up paying between $2,000 and $6,000 for a doula’s services. “Once people understand what I bring to the table, they have no problems with my fees,” she wrote. “I can help them save aggravation and money overall by helping them think rationally instead of out of fear.”
Despite increased media coverage in The New York Times and Wall Street Journal, end-of-life doulas are still relatively unknown. When Bonafé attends dinner parties and describes her job to people she’s just met, they often respond with shock and confusion. Many people do not learn about these services, or understand them, until it’s too late.
Chanel Reynolds was one of those people. In 2009, Reynolds received a phone call that changed her life. Her husband José, 32, had been struck by a vehicle while biking. Reynolds spent the next week in the ICU, torn not only by the possible loss of her young husband, but by the logistics of death: she and José weren’t prepared to die. After the first forty-eight hours at the hospital, the doctors told Reynolds that José would never recover. They inundated Reynolds with questions: did they have disability insurance? Did José write a legal will? Did he have an advanced care directive? Would he want her to pull life support?
Reynolds’ most pressing thought was: what would happen if she pulled the plug on her husband? How long would it take for him to pass away? (She has since learned that the time frame can range anywhere from immediately to a few weeks.) She realized how little she knew, standing in the sterile hospital hallway, helpless. “That was a whole new pitch-black room that I was looking into,” Reynolds said.
Without guidance, the process of facing death or grieving can be overwhelming, even all-consuming. With only doctors to direct her through the process, Reynolds felt lost.
The work done by death doulas often overlaps with the treatment provided by palliative care doctors, who offer the most holistic medical care available for patients suffering from long-term or terminal illness. At Yale New Haven Hospital’s palliative care department, a doctor first evaluates a patient’s condition on a scale of zero to one hundred, with one hundred indicating perfect health. Afterwards, the patient sits down with the doctor to outline their “Goals of Care,” which allows the palliative care team to understand what matters most based on the patient’s desires and preferences. The doctor then constructs a plan of care, which may include pain medication and physical therapy. Similarly, doulas sit down with their clients to talk through what they want most in their last few weeks. The doctors connect patients with chaplains and art therapists, something that death doulas also regularly do.
But there is a systemic shortage of palliative care, which makes palliative care departments short-staffed and limits the amount of time that can be spent on each patient. While there are only 1,400 palliative care centers nationwide, 42 percent of all Americans have had a friend or relative suffer from terminal illness in the past five years. Palliative care specialists at Duke University estimated in June 2019 that there is one palliative care physician for every 808 general patients in the United States. At Yale New Haven Hospital, the palliative care department, comprised of twenty-five staff members, cares for thirty five to fifty patients at any given time, according to Mark Swidler, a palliative care doctor at YNHH. This number is a small fraction of the 1,541 beds available at the hospital—which explains where end-of-life doulas step in. They do what palliative care doctors and hospitals cannot: provide hours and hours of constant, undivided care to the dying.
Part of the reason that palliative care departments cannot keep up with demand is that they are underfunded. Most patients enrolled in palliative care are above the age of 65, so Medicare pays for a large percentage of their palliative care costs. According to Health Affairs, Medicare’s approach to reimbursement favors medical procedures over palliative care procedures. In other words, Medicare doesn’t cover palliative care to the extent that it does other medical expenses. This disparity in reimbursement is visible in doctors’ paycheck gaps. In New Haven, general surgeons earn $161,000 more per year than palliative care physicians, according to Glassdoor.
Bonafé is a strong proponent of palliative care, but recognizes its current limitations. “They’re not given a lot of space and resources to function,” she said. She wants palliative care physicians to refer patients to her doula practice, but she says her meetings with doctors at YNHH have been fruitless.
Laura Morrison, a palliative care doctor at YNHH, hesitates to refer her patients to doulas because health insurance does not cover doula fees. “It’s harder to refer when it’s financially out of pocket,” said Morrison.
“They just need to know that we are around to help them do an even better job,” Bonafé said. “Until they understand that, we are not going to be welcome with open arms.”
In December 2018, Bonafé took on a client, a retired German professor at Yale whom I’ll refer to as Sara for the sake of confidentiality. She was dying from cancer and had no living family. During her last four weeks, Sara moved into a nearby hospice, and Bonafé visited her daily. Beyond advocating for her needs, such as readjusting her laxative medication when Sara experienced debilitating diarrhea or speaking to the front office when a staff member made a rude remark (“Well, you’re not going to be here long!”), Bonafé made sure that Sara’s experience was as peaceful as possible. When Bonafé noticed that a jazz guitarist came to play on the weekends, she scheduled a concert in Sara’s room. Sara loved jazz. “She was absolutely delighted,” Bonafé reminisced, with a wistful smile.
One afternoon, on one of her better days, Sara looked up at Bonafé from her bed with a feisty smile. “You should bring some wine. It’s medication, you know.” In her younger days, Sara had been a wine connoisseur, but had not had one sip since her cancer diagnosis. The following day, Bonafé brought a bottle of French wine, and they enjoyed a glass together in the waning afternoon light. Bonafé recalled that Sara said, in a burst of joy, “I don’t remember ever having such good wine.”
“She was in heaven,” said Bonafé later. “It brought her so much joy. I saw her big smile, and that rush of dopamine.” When Sara passed away weeks later, Bonafé combed through Sara’s apartment, donating furniture and passing important legal documents to her attorney.
Those surrounded by family members can also benefit from working with doulas. Sharon McCullough, an end-of-life doula working out of Southington, Connecticut, is trained in Clear Light Meditation, which helps make the dying process more tranquil through bedside meditation. Last year, one of McCullough’s clients lived in hospice care for the last few days of his life. The client had recently ended a series of aggressive treatments that left his family in a state of stress and conflict. McCullough decided to lead a meditation at his deathbed. “I was able to provide peace in a turmoil-filled environment.”
Clients are willing to pay thousands of dollars for these services, which include companionship, meditation, and the doula’s constant phrases of affirmation and comfort. The expanding market for end-of-life doulas reveals the gaping hole left by the medical system when it comes to death.
And yet end-of-life doulas face a long road ahead before they become a household name. Their obscurity arises not just from the fact that the clients of death doulas can’t posthumously make referrals, but also due to the lack of nationwide standardization. While nurses and doctors must pass standardized exams in order to earn a license, death doulas aren’t licensed. Instead, they may attend one of dozens of different training options and take an online exam, which costs $115, to earn a proficiency badge from the National End-of-Life Doula Alliance. The organization’s website stresses that “families can know that an end-of-life doula who has earned a NEDA Proficiency Badge has met certain standards,” called “Core Competencies.” These standards include basic values such as professionalism, technical knowledge, and communication. The National End-of-Life Doula Alliance’s mission is to increase awareness about and popularize this profession across the country. Currently, not every doula training program or doula falls under the umbrella of this organization. Realistically, the standardization of end-of-life doula practices won’t be easy. Each doula has their own approach to treatments, whether it’s meditation or legal assistance, and a doula’s expertise arises from experience and practice in the field, something that can’t be evaluated on an exam.
Additionally, being an end-of-life doula is not a full-time job. Five of nine end-of-life doulas in Connecticut don’t have a full roster of clients likely because most people have not heard of their services. “Nobody makes a living being a death doula yet,” Bonafé said. Bonafé works as a landlord, Harrison pet-sits, and McCullough works in a hospice. Doula Jill Bowens works at Quinnipiac University as an administrative assistant while starting a private doula practice. “The goal is to phase out of my nine-to-five and spend the last retirement years of my life as an end-of-life doula, doing this work as long as I can,” said Bowens.
For now, Bonafé mentors younger doulas like Bowens and makes sure that each visitor to her death cafe is received with open arms. Six months ago, at the July death cafe, Bonafé noticed a newcomer—Susan Clark. Her vibrant red hair and stories made her unforgettable to Bonafé, as Clark opened up about her sister’s death during discussion. “She was sharing in a very beautiful way,” Bonafé recounted. “And then magic happened.”
At each subsequent cafe, Bonafé noticed that Clark smiled a little more. At the next cafe, Clark brought in a framed photograph of Joe, Clark’s sister, taken in Hawaii days before her death. Eyes obscured by sunglasses, Joe wore a t-shirt emblazoned with turtles, a parrot balanced on each shoulder. Joe adored turtles and had adopted two from a shelter, Clark told the group. At the October death cafe, Clark was the last to speak.
“We’re tenacious for life,” Clark said. “We don’t want to give it up. It wasn’t in her control. It was her time to go. I probably will be fighting with her forever for leaving though.”
As the cafe wrapped up, participants zipped rain jackets and returned mugs. People slipped into the rainy night, on solitary walks or drives back home, just as quickly as they gathered.
— Candice Wang is a junior in Berkeley College. She is a co-editor-in-chief of The New Journal.