When Esther Bhandari’s mother, Kyung Hee Chang, was diagnosed with aggressive kidney cancer in the spring of 2022, Bhandari was shocked. “She was 80 years old but fiercely independent,” Bhandari told me in her home in Short Hills, N.J.
Chang had surgery to remove the affected kidney, but after a short plateau during which her health seemed to stabilize, she quickly declined. She chose to forgo chemotherapy and moved into Bhandari’s home to spend what time she had left with her daughter, son-in-law, and granddaughter.
It was Bhandari’s first experience taking care of a dying person. A friend suggested that an end-of-life doula, also known as a death doula, might help her prepare for her mother’s impending death and offer her added emotional support during such a difficult period. An internet search for “end-of-life doulas near me” brought Bhandari to Holly Strelzik’s practice. They first spoke by phone in July 2022.
Strelzik was unable to meet with Bhandari in person, so they agreed to connect by video. Strelzik facilitated Chang’s enrollment in a hospice program; she counseled Bhandari on how to prepare herself and her 11-year-old daughter for Chang’s death. She arranged for another doula from her practice to assist Bhandari around the house and provide additional companionship for Chang. “My mom spoke broken English to her, and the doula sat with her, held her hand. It was like an instant friendship,” Bhandari said.
Bhandari and Strelzik met virtually once or twice a week until Chang’s death the following month. Bhandari remains grateful to have had Strelzik’s support and guidance. “She helped me be calm in the midst of chaos. Sometimes, she just let me cry,” she recalled.
Chang’s final words were “haeng bok hae,” which Bhandari translates as “I am happy.”
Intimate, spiritual work
The word “doula” derives from ancient Greek, meaning “a woman who serves.” Many people are familiar with doulas as birthing companions, but over the past 20 years, there has been increasing use of doulas for end-of-life support. Just as birth doulas coach, comfort, and offer companionship to the expectant mother, death doulas do the same for the dying and their loved ones at the opposite end of life’s journey. They also help caregivers cope with witnessing and tending to the dying process, and they help prepare caregivers and the dying mentally and emotionally for the end. They also fill a critical gap in end-of-life care.
Home hospice agencies offer vital services for terminally ill people who wish to die at home, assisting with, among other things, pain management and helping the terminally ill avoid needless medical procedures. Such care, which minimizes suffering, is associated with what we might call a good death. But while it is often thought that home hospice workers are the primary caregivers for the dying, this is not so. Instead, it is loved ones who often do the heavy lifting, both physically and emotionally, that comes with tending to the dying. It can be overwhelming for both the dying and their caregiver. This is where a death doula comes in, and the work they do speaks to the nonmedical, more spiritual side of what it means to have a good death.
Among many other things, death doulas can help the dying to resolve long-simmering personal conflicts with an estranged family member or friend, for example. They can help the dying find meaning in the life that is drawing to a close. They can see to it that one’s deathbed wishes are honored. And they can support the dying’s loved ones with the terrible anticipatory grief that accompanies bearing witness to and taking care of someone living their final days.
Health insurance does not typically cover the services of doulas, though some work as volunteers. Among those in private practice, fees vary widely, from $50 to more than $100 per hour. Kris Kington-Barker is the director of Outreach & Care Provider Programs for the International End of Life Doula Association, INELDA, one of several doula training organizations. There is no universal certification for becoming a death doula, and there are many places to find one, such as INELDA and the National End of Life Doula Alliance (NEDA), which offers “Tips for Choosing an End-of-Life Doula.”
“When people are faced with their own mortality,” Kington-Barker says, “there are so many things they come up against. It is an opportunity for a person to be able to explore their thoughts. A doula invites the conversation to happen.”
One such doula is Janie Rakow, who worked with 52-year old Lisa Mauriello before her death from ALS, amyotrophic lateral sclerosis, in 2021. A mother of three children in Summit, N.J., Mauriello wanted to be there in spirit for her husband, Bob, and their three sons after her death. Rakow helped her create a legacy project. Mauriello and Rakow filled boxes with photographs and messages for Bob and the children. Mauriello handwrote some of the notes, including ones in sealed envelopes meant to be opened at future milestones, such as high school and college graduations, wedding days, the births of first children. Other notes, Lisa dictated to Rakow. “It’s so humbling to be part of the process,” Rakow says. For Bob, these mementos are the most precious tangible reminders of Lisa’s love that she left to him and their sons. “If my house was on fire,” he says, “they would be the first things that I would grab once I knew everyone was safe.”
Planning ahead — for death
Many people make practical plans for their elder years: choosing a health care proxy, completing an estate plan, and even making funeral and burial arrangements. But what other weightier personal choices might a person wish to consider as their death approaches?
Claudia Coenen, who lost her first husband to a heart attack when he was 50, learned the hard way to anticipate such a question. The sudden traumatic loss left her feeling angry and abandoned, inspiring Coenen to become a certified grief counselor. When, 17 years after losing her first husband, she faced losing her 72-year-old second husband, John “Moke” Mokotoff, to metastatic lung cancer, Coenen knew they would both need extra support.
“He was afraid I would be angry with him or that I might become overly emotional,” Coenen recalls. “I wanted him to feel peaceful and to know and truly feel that he was loved.”
Coenen reached out to a nearby end-of-life doula, Karen Bellone, to supplement Mokotoff’s home hospice care.
During one visit, Bellone led Mokotoff on a guided meditation to alleviate his stress and anxiety. During that session, she dabbed rose oil on his forehead. “Smell can stimulate memories of comfort. I call upon rose oil a lot in my work, as it is calming, comforting, and uplifting spiritually,” she says. “He fell asleep soon after our session.”
In her next visit, Bellone led Mokotoff on what she calls a life review, a process that mines memories to help the dying connect the dots of their lives in a meaningful way and to unburden them of unresolved issues. The goal is to leave the terminally ill person feeling more at peace with their life and relationships.
In the last few days of Mokotoff’s life, many friends and family visited him and Coenen in their home. A Tibetan lama performed end-of-life prayers, and Mokotoff’s guru in India offered final blessings via teleconference.
Mokotoff died peacefully in the couple’s bedroom at home — his expressed wish — about a month after his first meeting with Bellone. Recalling Bellone’s work, Coenen says, “What she did was very deep and very effective. She was a calming presence.”
Sherrie Dulworth is a New York-based freelance writer who writes about health care, work and careers, and human-interest topics.