Back in the early-1990s I became a hospice volunteer. I wanted to give back in some way for the goodness I experienced in my life. For four years I visited with dying people and their loved ones. In the beginning of my volunteer work I just socialized and provided brief times of respite for caregivers who were stressed and exhausted. But as time went on I found myself getting more engaged with the people I was assigned to visit. There were moments of incredible openness when the dying person, a partner, or an adult child would share their emotions or particularly important stories of their life.
I realized that many people approaching death and those around them had a powerful need to talk to someone who would listen to them without an agenda, without judgement—someone who didn’t have an emotional stake in their sharing. I discovered that it was very natural for me to be that person. And I was deeply touched by the raw human honesty of those moments and the trust people felt in me. I didn’t give them answers, and I learned that they didn’t want my answers anyway. They only wanted to be heard; to experience a compassionate presence.
It was out of those experiences that I recognized a calling to be there for people who were dying and grieving. I wanted to do more than volunteer for a few hours a week. So, I decided to go to graduate school and become a social worker to work with dying people full time. I was in my forties, married with two young children, and needed to keep working, which made graduate school incredibly difficult. But three years after starting I received my MSW and went to work at a small hospice.
Somewhat later I went to work at a large hospice in New York City. It was there that I came to experience the limitations of hospice. The hospice I worked at provided tremendous benefits to the dying in the form of medication, equipment, and supplies at no cost to the dying person and their family. Each patient also received visits from a nurse, social worker, chaplain, and a home health aide; again at no cost. But the visits by clinicians were generally very short and far enough apart to make deep work on issues and emotions rare. The clinicians wanted to do more, but the finances of hospice reimbursement and its medical orientation limited their efforts to crisis management. The way I had hoped to serve the dying turned out to be an idealized view of what was actually possible in the reality of the health care system that dominates end-of-life in this country.
I wanted to find a way to do more for the dying. It was then that I was introduced to the model of care birth doulas offered women and their partners in the months of pregnancy, through the labor of birth, and afterwards as people adjusted to their new life with a baby. Their work produced beautiful, meaningful birth experiences even in what was generally a painful process. The way they held space for the wishes of birthing mothers and their partners, the attention they gave to the sacred dimension of the process, the use of ritual and guided imagery, their focus on presence and atmosphere all made perfect sense to me as a way to care for the dying as well. Here was an approach and techniques that could fulfill my longing to be of better service.
I interviewed many birth doulas about their approach and took a birth doula training myself. Finally, I went to the CEO of my hospice and presented the idea of starting a death doula program at the hospice. I felt certain we could train lay people to be death doulas in the same way lay people were trained to become birth doulas. The CEO gave me her blessing and thus was born the first end-of-life doula program in the U.S. run by a hospice. That was in 2003.
Several years later, after successfully managing the program and serving as a doula myself for dozens of dying patients and their loved ones, I began teaching the death doula approach publicly. I taught at the Open Center in NYC and the Institute of Traditional Medicine in Toronto, Canada.
Finally in 2014 I left my day job as a hospice social worker and manager to co-found the International End of Life Doula Association (INELDA), a 501c3 nonprofit. I led that organization until the end of 2021, when I decided to give up my administrative work. Now I’m offering my services directly to people who can benefit from my 20 years of involvement in this field.