The Buddha was strolling with Ananda one day when they came across a monk lying near a tree. He was soiled with urine and feces and so weak from illness that he couldn’t stand.
“Why are you here all alone?” the Buddha asked. “Why are none of the other monks caring for you?”
“Honorable One, I have not cared for any of them. So they do not care for me.”
The Buddha sent Ananda for rags and water, and together they washed the monk and changed his robe. Then they lifted him onto a bed.
After the monk was more comfortable, the Buddha called those meditating nearby and criticized them for their neglect of the fellow.
“You have no parents now,” he told the homeless ones. “You must look after each other. Care for your teachers, your students, and those in your community. Look after each other as you would look after me.”
Shakyamuni was our Great Physician, dedicated to healing our deepest wound. In addition to teaching that we must face death directly, he also stressed the importance of caring for others who are sick and dying. Most of his advice focuses on encouragement, especially about keeping faith in the dharma, but this doesn’t mean ignoring the needs of the body. By his own experience of ascetic extremes, the Buddha came to understand that unmet physical needs could interfere with spiritual development. He created rules for the early sangha designed to simplify daily life, allowing one to face the fact of impermanence clearly. Yet many of those rules could be suspended when one was sick—such as the otherwise prohibited use of a bed. How we care for others, he taught, is not only an expression of our practice but also a practice in itself.
Throughout human history people have been familiar with sickness and death. While this is still true for people all over the world today, Western cultures began segregating the ill and the dying about a hundred years ago. Few of us today care for seriously ill people, and many will never be near a dying person or see a dead body. Ours is a peculiar kind of ignorance, and we suffer as a result: we are left vulnerable, unable to plan for our own needs or help others in theirs.
Those few of us who have seen a person die may have seen how difficult a death can be when the support system fails. The Western model of health care is bewilderingly complex.
I’ve worked in American health-care systems off and on for more than thirty years, and I still struggle to find my way through its maze at times. When someone I love is sick, I know how to work the system and which code words unlock automated answering services and stop hurrying staff. Yet when I am sick or someone I love is sick, I am vulnerable. At such times, we all need a guide.
In 2003, Henry Fersko-Weiss, an American social worker, saw this need and addressed it by creating the first formal death doula program in the United States. After living for two years at Dai Bosatsu Zendo, a Rinzai Zen monastery in New York’s Catskill mountains, and then training under Bernie Glassman and Sandra Holmes, Fersko-Weiss went to graduate school for a master’s degree in social work, after which he worked in a hospice. It was a good program, but he saw the many ways in which even a well-run program could fail.
In the US, almost all hospice service is delivered in a person’s home. This happens even if the home isn’t safe or easy for a sick person to navigate. Home hospice relies on family members to provide the actual physical care, and this happens even if the family doesn’t have experience or skill. It sometimes happens even if the family isn’t entirely willing or able. With the best of intentions, the staff of many hospice and home-health agencies can’t meet all the needs of patients; their caseloads are too big to allow generous support.
Fersko-Weiss saw that the missing piece was a kind of guide—a person who knew the winding path of dying and could work on plans and offer many kinds of help. This guide would need to be someone not busy with other needs, without a caseload at all, who would be dedicated to the single person in the bed. A friend of his had trained as a birth doula, a professional who guides women before, during and after childbirth. Fersko-Weiss wondered whether a similar arrangement would work in hospice. So he trained as a birth doula as well, and then translated the diverse skills to meet the needs of the dying.
The result—the death doula—is not a new role by any means but rather a role recovered from a culture that had turned away from the death bed.
What a death doula does exactly will depend on their experience and each person’s needs. Many doulas offer their services in the traditional way of community elders and women called to caregiving as service. Whether volunteers or professionals, they work with the team of doctor, nurse, social worker, and chaplain, but they occupy a unique place. Fersko-Weiss and the organization he founded, the International End of Life Doula Association (INELDA), established a training curriculum in order to provide skills and a foundation in the principles of end-of-life care. The goal, however, is the same—to help the dying find their way to a meaningful and peaceful death. The doula may be responsible for many tasks, but in simple terms a doula’s role is to be genuinely helpful.
According to Fersko-Weiss’s curriculum, the job of a doula has three phases: planning, support during dying, and bereavement. In the weeks and months before death, the doula may visit several times with a patient and family in order to sort out expectations about death and dying and begin work concerning legacy. This last is a significant part of the job—to help a person decide how they want to be remembered and prepare what is to be left behind, such as photographs or letters. As time goes on and the relationship deepens, a doula can provide respite for the regular caregiver and companionship for the patient, help with housework, or run an errand. Doulas usually don’t do hands-on care, but they may assist if needed. (The doula may, in fact, spend more time with the dying person than any other professional.) They can act as a calming liaison between the family and the caregivers, helping to solve problems as they arise. The doula learns to gauge the needs of the dying person as well as those of the family and to think about what may be getting missed amid all the details and emotions. My favorite example is the position of the bed. Often caregivers will dictate the placement of furniture based on their physical tasks; but a doula will find out what the dying person wants to see and will make sure that the bed position allows for this view.
One of the tasks of the doula is to help the patient turn toward death in an honest way. Nicole Heidbreder is a death and birth doula as well as a registered nurse. She practiced at Thich Nhat Hanh’s community in France, Plum Village, and now works in the Washington, DC area. Heidbreder says that one of her responsibilities with dying people is sharing the knowledge “that I am in a body that is of the nature to die.” This requires that the doula be self-aware, recognizing fears and fantasies in herself as well as in others. Part of her practice, Heidbreder says, is “showing up with a calm nervous system” even in chaotic situations. Fersko-Weiss has woven Buddhist elements (“without identifying them as Buddhist”) into the training he designed. “The dying space is a sacred space, and it requires leaving behind all the busyness we drag around in our minds,” he told me. He teaches students the techniques of active listening and breath-based meditation, with a focus on intuitive response and nonjudgmental communication. “We teach that before you enter the home or the room, you spend 15 minutes or so [in silence].” He recommends placing a chair near the door of the person’s room, a place where each visitor can stop before entering and do an internal check. This allows one to meet the needs that are arising in the moment rather than follow a list of tasks to accomplish. Heidbreder calls this “incorporating the pause.” She wants to remember that she is also doing the work and needs to name her experience, a belief that “comes out of my Buddhist understanding that we think we find places of stability, and then the ground shifts again.”
“During the second phase, when somebody is actively dying, we are there as much as possible, six, ten hours at a time,” says Fersko-Weiss. “We often try to be there around the clock, 24/7, through the last days and hours of that person’s remaining time. We might work shifts, to really be there during the active dying.” The doula is able to watch for the subtle signs of changing conditions and translates these to the family. This kind of sustained attention is not possible for professional staff in almost any setting. Such focus can be difficult for many family members as well, who may have their own physical needs or have work or childcare that must be handled—or who may simply be overwhelmed by events. Fersko-Weiss adds, “Nothing prepares you for the actual events.”
Nothing prepares you. I sometimes have to break the news of a death to family members. No matter how anticipated the death, no matter how old or ill the person was, the actual death is a shock. The caregiver stays calm in order to allow others to fall apart, because sometimes falling apart is what we must do. I know for myself that decades of experience disappear when the person who is dying is someone you love. I have felt that personal shock, the vast denial of impermanence, and the repeated surprise of acute grief. Ordinary function isn’t possible in those moments. Some decisions can’t be made. The doula can then gently lead people through any farewells they planned and make sure that important rituals aren’t forgotten.
The doula’s job continues after the death. The third phase, beginning a few weeks after the death, is to support bereavement. The doula may help the family talk through the events of dying, to clarify what happened and what is remembered.
This new job is an old role, one often filled by the elders of a community. It was never what one would have called a profession, and today there exist no national certification requirements, no regulatory body, and no standard requirements for doulas. Anyone can offer the services. Some training programs operate largely online and have greatly varied curricula and costs. For $149, you can get a copy of the FabJob Guide to Become a Death Doula ($19.97 on its own) and be certified as a doula by an online program that also certifies bakery owners and personal shoppers. Or you can pay $1,800 for 75 hours of training in person with people who already do the work.
Henry Fersko-Weiss founded INELDA to fill the gap by offering professional training and certification. Fersko-Weiss has trained nurses, social workers, chaplains, and physicians as doulas, but professional experience isn’t required. (A person with no experience around dying people will be steered to volunteer opportunities first, to ascertain their interest.) The program lasts several weeks and requires experience with at least five patients. The training includes evaluations and tested competencies as well as a written test. In return, the new doulas receive a thorough report and a certification from INELDA. Fersko-Weiss has written a book about the training and the work called Finding Peace at the End of Life. (In full disclosure, I wrote the foreword.)
Some doulas have pushed back against the movement toward certificate programs generally and INELDA specifically. These trainings, they argue, are too prescriptive and have overlooked how other caregivers, including many women of color, have approached end-of-life care since before INELDA’s inception.
“Our training doesn’t present the history,” says Fersko-Weiss. “It’s a course on techniques and principles of care.” INELDA has made some adjustments in recent years, including additional training on bias, diversity, and culture meant to address “the history of discrimination and outright cruelty to Black people in this country that has made them hesitant to access hospice and end-of-life care.” Fersko-Weiss hopes the organization is evolving into “a much more inclusive organization.”
At the present time, almost all doulas are privately hired and not part of a formal team. This most natural of roles at the bedside isn’t seen as essential and isn’t compensated by insurance or hospice benefits. Fersko-Weiss’s hope is that hospice in the future will include the doula as a recognized part of the team. He envisions a grassroots movement supporting the role and imagines a place for doulas in hospitals, nursing homes, and retirement centers. INELDA trainers have worked in the prison system in California—pro bono—to teach inmates how to care for each other. They’ve done similar training with veterans and are now doing this in a hospice for homeless people.
Our practice brings each of us face-to-face with the changing, impermanent self. In time this leads to a new equanimity. We do this practice for ourselves and also to help others. Good care for the seriously ill and dying is free of pity and regret. Good care doesn’t flinch. A section of the Anguttara Nikaya describes the qualities of a good caregiver. In Bhikkhu Sujato’s translation:
A carer with five qualities is competent to care for a patient. What five? They’re able to prepare medicine. They know what is suitable and unsuitable, so they remove what is unsuitable and supply what is suitable. They care for the sick out of love, not for the sake of material benefits. They’re not disgusted to remove feces, urine, vomit, or spit. They’re able to educate, encourage, fire up, and inspire the patient with a dhamma talk from time to time. A carer with these five qualities is competent to care for a patient. (AN 5.124)
How many of us have cultivated these qualities? If you find a fellow practitioner in distress, are you ready to help?
In another section of the Anguttara Nikaya, a practitioner reflects on how naturally we are repelled by old age, illness, and death. Such states are disgusting, he thinks. But on reflection, he realizes that because “‘I, too, am liable to grow old, it would not be appropriate for me to be horrified, embarrassed, and disgusted when I see someone else who is old.’ Reflecting like this, I entirely gave up the vanity of youth.” In the same way, he realizes that he will get sick. He realizes that he will die. He realizes that we must find a way to talk about our deaths. Current events are giving us a new chance: the pandemic of a novel coronavirus is forcing many people to face the possibility of their death and the deaths of those they love. We can develop skill in this effort, so that when old age and illness and death—impermanence—come into our living room, we will know what to do. Until then, we may need a doula.
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