Doulas are tasked with maintaining a sense of calm for dying people and those around them, and opening the conversation about death and loss, topics that can often be taboo
In October of 2016, Gregory Gelhorn ran the Twin Cities Marathon. Seven months later, he was diagnosed with ALS, a progressive neurodegenerative disease that causes nerve cells to break down, resulting in muscle weakness and atrophy. The average life expectancy of an ALS patient, once diagnosed, ranges from about two to five years. The cause of ALS is not fully understood, and no cure is known. Gelhorn was in his mid-40s.
“It was a shock,” said Kathy Fessler, Gelhorn’s sister. “He was always the one who took the best care of himself.”
Dying from ALS is a singularly awful experience; the disease causes the body to progressively deteriorate while the mind remains clear and lucid. Gelhorn had loved being active. He had played three sports in high school, coached girls’ basketball and served as a travel director at Lakeville North high school in Lakeville, Minnesota. The disease progressed rapidly; soon, he was using a wheelchair and relied on a BiPAP machine to breathe. Doctors estimated he only had a few months left. Gelhorn and his family – his two teenage children, wife, parents, and siblings – began to grieve.
In the midst of it all, Fessler happened to see an article in the Star Tribune about Christy Marek, a certified end-of-life doula who lived only a few miles away. Fessler contacted Marek, who soon took on Gelhorn as a patient.
A doula, typically, is a professional who helps mothers during pregnancy and childbirth. Unlike midwives, doulas do not serve in a medical capacity; rather, their primary role is to provide emotional, physical and psychological support.
The practice originated in the natural childbirth movement in the US in the 1970s, alongside the Lamaze method and the popularity of alternatives to hospital birth, like water birth and home birth. That same generation of Americans who were having children in the 70s are now approaching their twilight years, and the practice of serving as a doula has expanded in scope. End-of-life doulas use the same concept as birth doulas: they provide support for the dying.
“On all sorts of levels, I think the Baby Boomers, that generation has just been here to shake things up,” said Marek. “The natural birthing movement, they did that. And now it’s the same thing. They’re saying, no, I don’t want the death my parents had. We are rich in possibility, why can’t I make this whatever I want it to be?”
End-of-life doulas are sometimes called death doulas, though many have reservations about the term.
“To me, end-of-life is a process,” said Marek. “The work I do with people isn’t just about that one point in time when somebody dies.”
Although doulas are not required to have medical training, many come from the healthcare field. Shelby Kirillin, an end-of-life doula based in Richmond, Virginia, has also been a neurointensive trauma nurse for over 20 years. It was her experiences in the neuro-ICU that led her towards becoming a doula. Many of the deaths she had seen there, she explained, struck her as cold, sterile and lonely.
“I just couldn’t imagine that the person dying had ever envisioned their death to be like that,” she said. “Dying isn’t just medical. It’s spiritual.”
Fascinated by the idea of a structured approach to end-of-life care that prioritized the individual wishes of the dying, Kirillin enrolled in a doula training course with the International End of Life Doula Association (Inelda), a not-for-profit that promotes the approach. Although there is no centralized regulatory body for doulas, training and certification programs are offered by a number of organizations, including Inelda and the Larner College of Medicine at the University of Vermont.
“There’s so much fear and anxiety about death,” said Janie Rakow, the president of Inelda. “The doulas are there to calm everyone down. They work with the dying and their families to educate, to explain what’s happening. That what they’re seeing is part of the dying process.”
Rakow and her business partner, hospice social worker Henry Fersko-Weiss, founded Inelda in 2015 to train doulas and promote their use in hospices, hospitals, prisons and homeless shelters. Their training program covers topics like vigil planning, active listening and doula self-care.
Part of what doulas do is open the conversation about death and loss, topics that can often be taboo or deeply uncomfortable for the dying or their family.
“Can you imagine if a woman was going through labor and no one around her was talking about it or preparing for it? There’d be an uproar if we treated birth like we treat death,” said Kirillin. “You have to talk about it. You’re dying and you’re no longer going to be here.”
Doulas help their patients plan out their deaths: talking with them about their wishes, and how they would like to spend their last day. Some prefer to die in a hospital, others at home. They decide who they want around them, whether it’s with all their family and friends, or a religious figure, or alone. They choose the details of the setting, whether they want to hear music, whether they want to have someone hold their hand, and what rituals – religious or secular – they want performed.
Doulas often also perform legacy work, the practice of guiding the dying to create tangible artifacts to leave behind for their loved ones. Sometimes, it’s a photo album, a collection of recipes, or a video archive. One of Rakow’s patients wrote a series of letters to her pregnant daughter’s unborn child, expressing her hopes and wishes for a granddaughter she knew she would never meet.
As death approaches, doulas are tasked with maintaining a sense of calm for dying people and those around them.
“One of my patients this past spring, as he was transitioning, he started to vomit,” said Kirillin. “I reminded everyone that when a woman is laboring a birth, sometimes she vomits. It’s the body’s natural way. Let’s just make him comfortable.”
Finally, the last part of a doula’s work comes a few weeks afterwards, when the doula meets with the deceased’s loved ones to reprocess and discuss everything that has occurred.
“It’s after the casserole brigade has come and gone, and everyone’s gone back to work,” Kirillin said. “We talk about grief and bereavement. You’re not going crazy. You can be happy and sad in the same moment. There is no timeline.”
Of course, the practice of guiding the dying on their final journey is not new. Death is not an unknown phenomenon, and the act of tending to the dying has existed as long as human civilization itself. Marek has a theory for why the need for a formalized approach to death has manifested now, in these particular circumstances – why the dying feel the need to contract a trained professional, rather than being able to rely on a more organic source of support.
“In America, a few generations ago, our communities were doing this work,” she said. “The reason the role is showing up in a formalized way now is that we don’t have those community ties any more, not in the same way, and certainly not the same level of responsibility to each other as used to be woven into our communities.”
Kirillin agreed: “I would love for our culture to never need me,” she said.
Much of doula work is the very definition of emotional labor, and though Janie Rakow suspects some doulas feel conflicted about taking money for their services, she sees the profession as no different from that of therapists or hospice workers.
“I had one of my patients tell me I wasn’t charging them enough,” she said, though Inelda also encourages pro bono work, and many doulas serve purely on a volunteer basis. She also cautions her doulas not to take on too many cases in a row, and to be cognizant of their own mental health. But, she said, the act of tending to the dying is not as depressing as many assume; rather, it can be very rewarding.
“When you sit with a dying person and they take their last breath, it is as amazing and awe-inspiring as someone taking their first,” said Kirillin. “It is important, and sad, and needs to be cherished.”
Gregory Gelhorn died in September 2018. He spent his last day in his home, surrounded by his family. Together, they watched a movie and listened to 90s prog-rock.
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.”
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.”
Two brothers are combining palliative care expertise, linguistics and AI to encourage more effective conversations between doctors and people receiving end-of-life care.
Hospitals track infection rates, bed occupancy and many other measures. Why not good conversations, too?
One afternoon in the summer of 2018, Bob Gramling dropped by the small suite that serves as his lab in the basement of the University of Vermont’s medical school. There, in a grey lounge chair, an undergrad research assistant named Brigitte Durieux was doing her summer job, earphones plugged into a laptop. Everything normal, thought Bob.
Then he saw her tears.
Bob doesn’t baulk at tears. As a palliative care doctor, he has been at thousands of bedsides and had thousands of conversations, often wrenchingly difficult ones, about dying. But in 2007, when his father was dying of Alzheimer’s, Bob was struck by his own sensitivity to every word choice of the doctors and nurses, even though he was medically trained.
“If we [doctors] are feeling that vulnerable, and we theoretically have access to all the information we would want, it was a reminder to me of how vulnerable people without those types of resources are,” he says.
He began to do research into how dying patients, family members and doctors talk in these moments about the end of treatment, pain management and imminent death. Six years later, he received over $1 million from the American Cancer Society to undertake what became the most extensive study of palliative care conversations in the US.
The resulting database contains over 12,000 minutes and 1.2 million words of conversation involving 231 patients. This is the basis of the Vermont Conversation Lab, which Bob created to analyse this data and find features of those conversations that make patients and family members feel heard and understood.
Brigitte’s job in the lab that summer was simple: listen to moments of silence and categorise them. The idea was that they could indicate emotionally charged connections between doctor and patient. Once the silences were coded, they would be used to train a machine-learning algorithm to detect them automatically – and, with them, moments of emotional connection.
You might ask what place algorithms could possibly have in this sensitive realm. The reality is that healthcare communication needs help, especially in palliative care, where practitioners seek to bring patients to their deaths as meaningfully and painlessly as possible.
In 2014, the US Institute of Medicine made improving doctor-patient communication a priority in its landmark study, ‘Dying in America’. An analogous publication in the UK, Ambitions for Palliative and End of Life Care, emphasised the need for patients, family and caregivers to have “the opportunity for honest, sensitive and well-informed conversations about dying, death and bereavement”. It reiterated that doctors need to make those conversations possible.
Most of the resulting communications training seems to offer scripts and templates to help doctors deliver bad news and make decisions with patients. But this is not enough. In this context, doctors really need to understand conversations more broadly. They need to appreciate everyone’s role in a conversation. They need to learn the ability to listen and be silent. They need to confidently recover from conversational missteps.
“Oncologists are in general very uncomfortable with this kind of thing. They want to focus on treatment, and they talk eloquently about different protocols and clinical trials,” says Wen-Ying Sylvia Chou, a programme director in the Behavioral Research Program at the US National Cancer Institute. She oversees funding on patient-doctor communication at the end of life. “But sitting in the place of being a listener is not something that clinicians are trained for or necessarily comfortable doing.”
End-of-life medical conversations also often involve language in extremis.
Enter Bob Gramling. Hospitals track infection rates, bed occupancy and many other measures. Why not good conversations, too?
Amiable and serene, wearing a bracelet of Buddhist meditation beads, Bob sees a big role for artificial intelligence (AI) that can detect and measure the features of clinical interactions that matter to patients, then report those measurements to numbers-oriented healthcare systems.
Once such technology is widely available, he says, “we can incentivise our hospitals to build systems to improve those interactions and reward doctors for doing it”.
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“How are you?” asks the nurse practitioner, who’s just come into the patient’s room.
“Fine,” the patient says. She’s a 55-year-old white woman with stage 4 breast cancer. Neither she nor the nurse practitioner know that she’ll be dead in five days.
“No, you’re not,” the nurse practitioner retorts.
“Oh, a loaded question,” the patient laughs.
“It’s been a long – well? No,” says her spouse.
“No,” says the patient. “It’s a polite question, it’s a polite answer.”
This is a snippet of a conversation in Bob’s database that he played to his brother David, a linguistics professor at the University of Arizona. David recognised the dynamics of this specific moment. The people in that room hadn’t been talking about care or disease, but they had been doing something important in the conversation that would affect the quality of the care.
When the Gramlings’ father died, David flew home from a literature studies fellowship in Berlin. But years earlier, he’d been intimately involved as a caregiver, witnessing a “smörgåsbord of insane, irrational communication failures” with lawyers, nurses, nutritionists and priests.
For a year after their father’s death, the brothers were swallowed by family matters. As they emerged, they began talking about palliative care communication and linguistic research in healthcare settings, and began to collaborate professionally.
The most recent result is a book, Palliative Care Conversations, published in early 2019. It aims to show physicians how conversations work, such as how clinicians and patients often understand words and phrases differently. David looked at the conversations at a granular level, using the tools of a linguistic subfield called conversation analysis. He spent years listening to audio recordings of the conversations, noting moments worth closer analysis.
Meanwhile, Bob provided clinical details about medical culture. In the last few years, he has also hung out with jazz musicians, who are master communicators when they’re improvising, and visited the Stanford Literary Lab to see how digital tools can be applied to massive literary corpuses to understand patterns too diffuse for human readers to catch.
Research on end-of-life communicating and decision-making typically looks at what doctors or nurses say. It rarely takes into account the deeper linguistic and cognitive factors that influence patients’ abilities to communicate in the first place.
As the Gramlings note in the book, the above back-and-forth between patient, spouse and nurse practitioner is remarkable for a first exchange between strangers. They explain that’s because “the clinician is willing to risk conventional rapport-building pathways by contradicting the family member’s self-reported state of mind”. In other words, the physician has opened the door to a looser mode of relating – and it works.
Another conversation doesn’t go as well. It’s a “pragmatic failure”, as David would say.
“When I came in,” says the nurse practitioner, “I saw you were watching Scrubs.”
“Scrubs?” the patient says. He’s a 63-year-old black man with stage 4 kidney cancer, who will live for 135 more days.
“Have you ever seen Scrubs?” asks the nurse practitioner, who is white.
“Yeah,” the patient says. “No, I wasn’t watching Scrubs.”
As the exchange unfurls, it’s clear the patient and clinician won’t connect. The clinician then seems to want to force their way to the task at hand, and forget the small talk where rapport could be built.
“When you study communication in healthcare, you’ll see a lot of monologues from doctors,” Bob says. “I don’t mean that in an insulting way – it could be really good information.” In palliative care, he explains, conversations are different: “It might be just because it’s the nature of palliative care. It’s what we do and what our value is… there is a lot of turn-taking.” That’s another term he learned from his brother. It refers to the back-and-forth of conversation.
“This is not a clean, rational, logical experience that fits on an 8-and-a-half-by-11 piece of paper, it’s a human-engaged relational endeavour,” he adds. “If we’re going to develop metrics for that, we’d better be looking at both the beauty and the science from many angles.”
Research on end-of-life communicating and decision-making typically looks at what doctors or nurses say. It rarely takes into account the deeper linguistic and cognitive factors that influence patients’ abilities to communicate in the first place.
One study, by speech-language pathologists in the late 1990s, showed just how large these language challenges can be. They gave a battery of language comprehension and memory tests to 12 hospice patients: 11 of them couldn’t recall words, had difficulty understanding things and pronouncing words, and had difficulty remembering what was said to them. These symptoms get in the way of normal activities, like having conversations.
Even something as crucial as how well older patients can hear gets overlooked. In a 2016 survey of 510 hospice and palliative care providers across the US, 87% of them said they did not screen for hearing loss, even though 91% of them agreed that patients’ hearing loss impedes conversation and negatively affects the quality of the care they receive. Only 61% said they felt confident nonetheless that they could deal with patients with hearing problems.
The Gramlings pay a remarkable amount of attention to another factor: the pain, shortness of breath, fatigue and medications that can keep patients from communicating normally.
In his research, David has addressed what he calls “language in extremis”: what happens when people’s ideas about language and communication buckle under the strain of circumstances, as in multilingual experiences in Nazi concentration camps, or interpreting in border patrol detention facilities.
End-of-life medical conversations also often involve language in extremis. As cancer brings a person’s life near to its end, they may have lost some of their lifelong communicative powers to the disease or its treatments. They may have less ability to speak subtly and indirectly, which is important for politeness. Shallow breathing shortens utterances, and drugs may block word-finding. All of this reinforces an asymmetry in communication that doctors don’t always grasp.
At the end of a patient’s life, there may not be effective medical treatments, just things to discuss and plans to make.
A physician might encourage a patient to speak openly, and indicate their willingness to listen, but in practical terms, “That gesture doesn’t quite work,” David says, and doctors need to understand why.
At the same time, people still hew to lifelong social conventions about being a user of their language. They might be dying, but “They don’t back away from their interactional responsibilities,” David says. They honour turn-taking; they don’t interrupt. They tell jokes, they use family language, and they create mini-rituals of inclusion and exclusion, often to deal with the communication asymmetries.
“If I were picturing the developmental arc,” says David, “it wouldn’t be coasting down into death. It would be all the way and sometimes heightened. The kind of complex literacy you need to use in a hospital setting in a serious illness, and managing all your oncological terms – it’s almost like the competencies themselves get expanded in this end of life.”
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In his lab, Bob is examining even more fleeting aspects of conversations, such as pauses. It’s an interesting choice, because pauses might be considered as a sign that a speaker has lost their way or that an interaction is breaking down. On the other hand, pauses are easy to locate in the acoustic signals of recorded conversations. And they might indicate where someone is listening or about to say something important, so they might be a good thing.
Bob’s team used machine learning to identify pauses of 2 seconds or longer in spoken conversations, then human coders like Brigitte Durieux tried to categorise them, looking for ones that were more than just silence.
Because they didn’t have access to what the doctors or patients were actually thinking, they looked for the presence of emotional words and other sounds like sighs or crying on either side of the pause. Did a question about the quality of life, treatment hopes, prognosis or dying precede the pause? If so, the pause may have been because the doctor invited the patient to consider something.
The team found that during some of these pauses, some connection, shift or transformation was occurring. These “connectional silences” were rare. Out of a set of 1,000 clips with pauses, a mere 32 were connectional in nature. They were brief, as well, most lasting less than four seconds. But there’s still power in them.
The dynamics of a conversation change dramatically after such a connectional silence. Suddenly, a patient will be talking more than they did earlier. They’ll be directing the conversation, not the doctor. It’s as if the mutual agreement to pause for two seconds spilled into an agreement to shift roles.
“No, for some reason I guess I just in my head was gonna be on [chemotherapy] for the rest of my life and everything was gonna be hunky dory and…” a patient begins.
A 2.9-second connectional silence follows. The doctor inhales audibly, to signal they will respond, which makes the patient pick back up.
“You know. I knew early on, I mean you told me early on it’s not like and then this will be the rest of my life. Something, you know, might go down.”
The doctor responds. “Something. That can be a very hard thing to think about. That here we found something that’s helping but you can’t stay on it for the rest of your life.”
In other moments, the silence comes after a doctor has said something empathetic.
“It’s rare of me to tell somebody point-blank you’ve got to stop. However, I will say you have my permission to set limits,” the doctor says.
“Okay,” says the patient, then falls silent for nearly seven seconds.
His wife chuckles. “He can’t stand the thought of it. I can tell by his laugh,” then she laughs.
“I know he can’t stand the thought of it,” the doctor says.
“No, that’s okay,” the patient says. “I’ll get used to it.”
Or in another instance, the doctor tells a patient’s spouse, “what you feel is really hard. It’s really hard.” There’s a 2.8-second silence.
“I just wish he had a better quality of life.”
“I know, I know,” says the doctor.
Even though these connectional silences don’t happen often, Bob thinks they’re good linguistic markers of connection exactly because doctors don’t commonly use them. When someone good at monologuing and interrupting falls silent, it may mean they’re allowing something else to happen.
Bob surmises, “More often than not, the conversations that have a lot of space in them are probably going to lead to people feeling more heard and understood.”
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Judy had a question. Having come to the hospital at the University of Vermont to recover from the flu, this elegant, 83-year-old woman was lying in her bed. Two doctors had come to her room bearing news. It was cancer, not the flu, and it had spread from her liver. She could undertake a course of chemo, or she could have her pain managed as she died.
She turned to her daughter, Kate, sitting beside her. “What should I do?” she asked.
When the doctors had requested this meeting, Kate had dropped everything to be there. It seemed unusually serious. Now she knew why. She wondered why she hadn’t seen the signs of her mother’s cancer. Judy’s skin had started to look yellow, she recalled. But instead of recommending a check-up, she bought her mother some pinker make-up.
In this pivotal conversation, the doctors presented the options but also wanted to know what was important to Judy. They knitted the science together with thoughtfulness and compassion. Kate was struck by their slow, almost languid approach to delivering the news.
Slowly it dawned on her that this was a conversation about her mother’s death. Neither of them had prepared for this. Not now, not so soon.
“It had the nature of a conversation with a clergyperson rather than a doctor,” she remembers. Pastoral kept coming to mind.
At the end of the conversation, one of the doctors gave her his card. It was Bob Gramling. Kate has since seen the bright blue spectrographs showing gaps in conversation – where the pauses occur. She thinks these are important moments as well.
“Where there’s silence, where there are gaps, that’s where the caring shows up,” she says. “I think it’s incredible work to point out to doctors there’s a lot going on in the silences.”
Bob and David have only scratched the surface of how these conversations work. So far they have only studied English speakers, for example; pauses work differently in other cultures, so they need data on those moments, too. And because their data comes from people with cancer, there’s a concern that the analysis may be skewed.
With cancer, says Wen-Ying Sylvia Chou of the National Cancer Institute, most patients have time: “They continue to be themselves and continue to be part of the conversation and any ongoing discussion.” With other diseases, though, there could be more risk that the person would “lose cognitive function or physical function”. In those cases, she says, conversations “would look very different”.
Healthcare’s use of natural language processing – technologies that treat language as data – is expanding, and the chances are good that research like that of the Gramlings will expand to cover conversations with people who have other serious illnesses.
What is a conversation?
Bob isn’t the only researcher exploring the use of artificial intelligence in palliative care. In 2017, James Tulsky, a palliative care physician at Dana-Farber Cancer Institute in Boston and a Harvard professor who studies health communication, stressed that “mass-scale, high-quality automated coding will be required” to give feedback that helps clinicians improve their expressions of empathy.
Tulsky turned to Panayiotis Georgiou, a computer engineer at the University of Southern California, to develop automated detection of emotional connections between doctors and patients. In 2017, a team headed by Georgiou showed that certain acoustic features of the speech of couples in counselling could be used to predict marital outcomes. What if algorithms could do the same for palliative care conversations?
“The technology in theory exists out there to do all this,” Tulsky says. “It’s just a matter of doing enough research, running enough iterative trials, training up the machines to actually get these algorithms trained well enough so you could apply them to more random talk.”
I ask Judy’s daughter Kate what she thinks of using artificial intelligence to enrich human connections. “I wouldn’t worry about the technology,” she says. “The more technology, the more sacred the conversation becomes.”
What does she mean? Anything that enables humans to use their voices more effectively with each other is a good thing, she explains: “It’s because of the increasing technology that the interaction becomes more wonderful.”
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What is a conversation? It’s a setting where humans interact, often for a purpose but sometimes for none at all. People have to learn how to have conversations but when they become expert in their culture’s conventions, conversing becomes so automatic it feels natural.
Modern healthcare has hijacked conversation and made it a tool by which physicians can achieve their ends.
According to David, “The contemporary hospital still understands ‘conversation’ as ‘making a pre-determined X happen through conversation’.” This is a barrier in serious illness and end-of-life care, where the conversations need to be venues for figuring out what the X might be.
At the end of a patient’s life, there may not be effective medical treatments, just things to discuss and plans to make. This may need a more natural conversation than a medical one, a conversation in which none of the participants may know what the outcome will be.
After all, these conversations aren’t just for doctors; they’re for patients, too. And family members, nursing aides, housekeeping staff. “There are a lot of human beings who have a vested interest in this other human,” Bob says.
There are critics who don’t think artificial intelligence and machine learning have a role to play in palliative care. Bob’s view is that shying away from analysing this kind of conversation in this way means that essential opportunities for improving it will be missed.
“It is helpful, as a discipline that has historically thought of communication as just the art of medicine, to actually think that, no, this is a science,” he says. And understanding that science could help us re-engineer the healthcare system to support more meaningful conversations.
He’s aware of the delicacy in institutionalising and commodifying a human interaction, though. “As a physician,” he says, “I was afraid of being a researcher that was going to oversimplify this kind of sacred experience into something that’s measurable and convenient and essentially meaningless.”
That’s where Brigitte Durieux struggled with her feelings as she listened to thousands of audio clips of pauses. In some conversations, people were laughing, but she was struck by the loneliness in others. She had begun to recognise patients’ voices and wondered what had happened to them.
“Nobody is perfect, but there are times when one realises there’s something that could be said to make this feel less like a loss,” she says. Sometimes she whispered under her breath something the doctors could have offered instead.
After Bob found Brigitte crying, he wrote an ethics proposal to the hospital so that he could introduce a new procedure into his lab. He borrowed an idea from the hospital’s palliative care unit, where staff gather every week to say the names of people who have died, then ring a singing bowl.
Now, at the start of every Vermont Conversation Lab meeting, a researcher reads the name of one of the patients from the database and rings the bowl. So far, they have gone through the list of names twice.
The ceremony helps, says Brigitte, because it reduces the guilt of turning a sensitive moment in someone’s life into a piece of data.
“What it does ultimately,” she says, “is recognise the humanity of things.”
When Maine passes a law allowing physician-assisted dying (PAD), it will be joining nine other jurisdictions in the United States.
By October, one in five Americans (22%) will have a law that allows terminally ill patients, most of whom have cancer, to choose an end to their life with medical help from a doctor.
However, the practicalities of actually doing so are formidable, and patients who choose this option find there are many obstacles in the way.
First is finding a doctor who will participate. Many doctors have moral objections to PAD, refuse to participate, and will not refer patients.
This sounds familiar to Charles Blanke, MD, professor of medicine at the Knight Cancer Institute at Oregon Health and Science University in Portland, who has been participating in PAD since it was legalized there in 1997.
Blanke says patients have told him that after being turned down by their physician, they also were not given a referral; instead, they were told by their doctor that “they don’t know anyone, and good luck finding someone.”
I believe this is patient abandonment.
Dr Charles Blanke
“I believe it is patient abandonment,” Blanke told Medscape Medical News. “For some patients, it takes them months to find me, so it’s no wonder many are too ill by then to proceed.”
In general, eligible patients say that PAD was not offered to them, Blanke said, but he argues that “it is legal and should be put on the table.”
He emphasized that physicians should never be pressured to participate in PAD, but they should refer patients. “We need to make it more patient friendly and more accessible.”
For years, Oregon was the only state that allowed the practice.
In recent years, however, other states have passed similar laws — Washington in 2008, Montana in 2009, Vermont in 2013, California in 2015, Colorado in 2016, Washington, D.C. in 2017, Hawaii in 2018, and New Jersey just a few weeks ago.
Lack of Training
That some doctors do not want to participate in PAD is understandable; many have moral objections to the whole idea, citing the Hippocratic oath to ‘do no harm.’
But there are signs of a shift toward more acceptance.
For instance, a 2018 Medscape ethics report found that 58% of doctors who responded to the survey said physician-assisted death should be available to the terminally ill, similar to 57% in 2016, and up from 54% in 2014 and 46% in 2010.
However, doctors who are willing to participate find it difficult to do so.
“The law makes no provision for medical training, there is no formal system, and I believe that is one of the major barriers and a shortcoming of the law in every state where it is legal,” said Lonny Shavelson, MD, a California physician based in the San Francisco area who specializes in aid in dying. He founded Bay Area End of Life Options in 2016.
“I agree that sometimes there is a moral objection, and there is sometimes institutional resistance, but most commonly it is lack of training,” he said.
Doctors, as a rule, like to do things they’ve been trained in.
Dr Lonny Shavelson
“Doctors, as a rule, like to do things they’ve been trained in and don’t like to do things they haven’t been trained in,” he added.
He noted that his practice has received more than 800 requests for medical aid in dying from different patients throughout California.
“Every patient who comes to us does so because they can’t find another doctor,” he said. “Everyone thinks it’s because of moral objections or that the patients live in rural communities, but it’s not the case for most of the patients.”
Shavelson told Medscape Medical News that he always calls the patient’s doctor, and most of them are not morally opposed to participating in PAD. “But what they tell me is that they’ve never been trained and that they don’t know anything about it. They don’t know what medications to use, or anything about the paperwork or protocol,” he said.
Barriers To Access
“The great news is that we have 22 years of data in Oregon, and the law is protecting patients,” says Kim Callinan, CEO of Compassion & Choices, the largest national advocacy group for aid in dying.
“But we also have robust data showing that the law is not meeting its intentions and that we have erected too many barriers for many to access it,” she told Medscape Medical News.
Callinan believes that improvements are needed to allow the original intention of the law to take place. “We want to keep the right safeguards in place,” she said. “But we are seeing such small numbers of people using it, and in many cases it’s because they can’t get access.”
Recent reports confirm that the number of patients who have chosen PAD — and who have completed the process — remains small.
For example, data from Oregon show that from 1997–2018, prescriptions have been written for 2217 people, and 1459 patients have died from ingesting the drugs.
In California during a single year (2017), 577 individuals received prescriptions and 374 people died after ingesting the medication.
Shavelson feels the actual demand for PAD is not reflected in the current statistics, and the numbers would probably be much higher if there was more access to physicians.
He argues that a more accurate survey would be to identify how many patients have requested PAD but could not find a physician to help them, he said. Shavelson believes that number would be significantly higher than what has been documented.
Institutional Barriers
In some cases, it is not the physician making the decision but the healthcare system.
A recent survey of 270 California hospitals, conducted 18 months after implementation of the state’s End of Life Option Act, found that 61% of hospitals had a policy forbidding physicians to participate (JAMA Intern Med. 2019;179:985-987).
“We found that of the 164 hospitals in California that opted out, 56% allowed physicians to refer patients to another provider and 29% of hospitals did not provide any guidance on this question,” said lead author Cindy Cain, PhD, assistant professor in the Department of Sociology at the University of Alabama at Birmingham.
“I support the idea that a health system can opt out,” says Peg Sandeen, PhD, MSW, executive director of the Death with Dignity National Center, a nonpartisan, nonprofit organization. “As much as I don’t like it, and think physicians should be free to practice, the health system has that right to do so,” she said.
However, not referring patients is an entirely different issue. “The outright act of refusing to refer a patient puts the physician into an ethical quandary,” she said. “Referral is part of how medicine is practiced, but it is up to the individual physician to make that determination.”
Waiting Times Present Another Barrier
The whole PAD process requires two oral requests with a waiting time of at least 15 days between them, and also a written request using the statutory form included in the state’s aid-in-dying law.
There are slight variations among states (eg, Washington, DC also requires two witnesses). Many states also require a second waiting period, in which the physician must wait 48 hours from the time of receiving the written request to write the prescription.
Callinan believes that the waiting periods, as well as the need for two doctors to confirm eligibility, are redundant in some cases. “The eligibility is that a patient has 6 months or less to live, and 2 doctors have to certify that,” she said.
“But if someone is already enrolled in hospice, as many are, it has already been determined that they meet the 6-month criteria and that the decision has been made to forgo treatment. In this case, they should only need one doctor to authorize it,” she argues.
A new law in Oregon may cut some of the waiting time, as it allows physicians to make exceptions to the waiting periods if the patient is likely to die before completing them.
“Oregon law has not evolved since it was written 20 years ago,” said Blanke. “This new bill will eliminate the waiting period for those who are imminently terminal. It won’t affect very many people, but it will help a few get quicker access.”
Shavelson praised the new Oregon law. “I think the 15-day waiting period is obscene because it’s not 15 days,” he said, explaining that it may be more like 3 or 4 months, as patients have to find a doctor and then may have to wait weeks for an appointment.
“The idea was that it was supposed to be a period of contemplation, but many patients have been contemplating since they got their diagnosis,” Shavelson pointed out. “They didn’t start thinking about it when they first made their request — they have been thinking about this for a long time.”
Patients in this waiting period may be dying or losing the mental and/or physical ability required for self-administration of the drugs, he explained. In his own clinical practice, about 30% of patients die during the 15-day waiting period, he estimates.
This is a similar proportion to that found in recent study from Kaiser Permanente Southern California, where one third of patients became too sick or died before the process was completed (JAMA Intern Med. 2018;178:417-421).
Accessing and Taking the Drugs
Even for patients who do manage to get through the bureaucracy, there are challenges in the practical steps of actually obtaining the drugs. A physician can only write the prescription and it is up to the patient to procure the drugs.
When states began to first legalize PAD, the drugs of choice were oral pentobarbital and secobarbital. However, as of 2015, both of these drugs have been largely unavailable, as previously reported by Medscape Medical News.
Through trial and error, a group of physicians eventually developed a drug regimen (DDMP2), which contains diazepam 1 g, digoxin 50 mg, morphine 15 g, and propranolol 2 g. It is more complicated than the barbiturates but has been found effective.
Shavelson explained that an updated version known as D-DMA (no propranolol and amitriptyline 8 g added), which is both faster and more reliable than all other protocols, is in the process of replacing DDMP2.
Both formulations are compounded by a pharmacist and available as a powder, which then must be mixed with 4 oz of apple juice and taken as a liquid/suspension.
Shavelson noted that physicians may not know where a patient can fill the prescription.
“It’s not something that can be filled at the local CVS or Walgreens,” he said. “A regular pharmacy doesn’t have the ingredients on hand, and for the DDMP2 combination, it has to be compounded.”
In California, two pharmacists currently fill about two thirds of the prescriptions. “Pharmacists need training as well,” Shavelson contends. “They are an integral part of this process.”
Even the last step in the whole process, the actual ingestion of the drugs, can be difficult for some patients.;
State law requires that the lethal dose be self-ingested via the digestive tract (orally or through an nasogastric (NG) or gastrostomy tube). The restriction that the drugs must be self-administered was to help ensure no one could harm a patient against his or her will.
However, many terminally ill patients are so sick they can’t physically mix the solutions, pick up and take the medicine, or swallow the drugs. Blanke estimates that around 10% of the patients he has evaluated have swallowing issues, and they fear that they will be unable to swallow the medications when they are ready to die.
To get around these practical difficulties, a proposed bill in Oregon sought to allow patients to self-administer intravenous drugs.
“There are many people who cannot swallow or administer through an NG tube, so just pushing the button on a pump syringe would allow them to take the medication,” said Blanke. “The IV could be put in right before they used it.”
Putting in an IV is easier than an NG tube, he explained, and much less invasive than a gastrostomy tube. “There’s really no difference between them, as far as putting medication in,” Blanke said. Both require some intervention and hold the same risk that someone else can administer the drugs.
Although the bill passed through the Oregon House of Representatives, it stalled in the Senate and has not moved forward. Some opponents of the bill feared that it would move Oregon closer to allowing euthanasia, while others cited the high cost of pump syringes.
Blanke believes that much of the opposition was really directed at the concept of assisted dying. “The arguments were with Death with Dignity,” he said. “Not the idea of making changes in the law or the use of an IV.”
The practical difficulties of PAD in the United States contrast with a much simpler process in Canada. Since 2016, Canada has legalized medical assistance in dying, which allows for both physician-assisted euthanasia and self-ingestion of a lethal dose. Patients have overwhelmingly selected physician-assisted euthanasia, where the lethal dose is administered intravenously by a clinician. According to Health Canada, of the nearly 7000 Canadians who have chosen to end their lives since the law went into effect, only six people have opted to self-administer drugs.
Physician Education and Training Needed
The biggest barrier — and the most imperative need — is physician education and training in PAD, argues Shavelson.
“Traditionally, teaching happens at large institutions, medical schools, universities, academics — but they won’t touch this,” said Shavelson. “They don’t want their reputation so-called ‘sullied,’ and are frightened that their reputation will take a hit. I don’t think that’s true, and I think people would feel that it’s a good thing to have medical centers more involved in this.”
Academia has fallen down on their responsibility, he contends. “This is a legal medical procedure and there is not one medical institution in my state [California] that is doing formal training on this. It’s not part of any conferences or any continuing medical education.”
As an example, the University of California, San Francisco, forbids palliative care residents and fellows from participating in aid-in-dying practices. The end result is that there are palliative care fellows coming out of training who have no experience in this area.
“Their patients will be asking about it, since palliative care doctors get asked about it more than any other specialty except for oncology,” said Shavelson. “So we will have palliative care and hospice doctors who have no training in it, and that’s absurd. This is part of the realm of what they are going to have to deal with in their practice, and institutions have forbidden it.”
However, next year the first conference for clinicians on medical aid in dying will be held in Berkeley, California, and will really delve into the nuts and bolts of practicalities, Shavelson explained. “The topic has come up at conferences, and there have been other gatherings to discuss it, but the focus has been on policy and ethics.”
