Interview with Henry Fersko-Weiss

End-of-Life Doula Program

What led you to the development of your End-of-Life Doula Program?

I had been working as a hospice volunteer for about four years and that work helped me understand that I was very drawn to work with those facing the end of life. At about age 50, I went to graduate school and received a Masters in Social Work and began working at a large hospice program (Continuum) in New York City. While the care provided by the team was excellent, I sometimes observed that things didn’t always work as well for patients and families during the dying process as we would hope. I heard stories from families about not being present at the death, or of unnecessary hospitalizations (which often resulted in the person dying in the hospital, which was not their wish). I think that we can’t escape the fact that, especially as caregivers are facing the last days of a loved one’s life, the situation elevates anxiety and fear, and decisions are made that they may regret later.

Around the same time, a friend was being trained as a birth doula. As I learned about the process I loved the approach and the philosophy, so I decided to take the training myself, and noted so many similarities between the birth process and the dying process. After my training, I brought some ideas to the CEO of Continuum and she was very supportive of how we could apply this training to our hospice patients and families, so I began to develop the program.

How did you begin?

At the time I was the Manager of the Volunteer department, so we reached out to our volunteers and had an immediate show of interest; our first class had about 17 volunteers respond. Once we saw such enthusiasm, we began to reach out to others whose interests might correspond, such as birthing doulas, interfaith clergy, people who specialized in energy work or other alternative treatments.

What are some of the factors you look for when recruiting volunteers for this work?

My criteria have nothing to do with their professional or healthcare background; it was to find people who really embraced this approach to end-of-life care and felt drawn to it. Most of the volunteer doulas have had some direct experience with a loved one’s death. Generally it fell into two categories; either it had been a positive experience and they want to help other families have that same experience, or perhaps their experience could have been better and this is a way to help make that happen for others.
Volunteers who are trained in the doula program represent a variety of experiences—some are active hospice volunteers in other areas of care; some come from a spiritual caregiving background; and some only participate as end-of-life doulas but do not do other hospice volunteer work.

How does the Doula program, staffed by volunteers, interact with the hospice staff/interdisciplinary team?

One way is through what we call Vigil Work; these are volunteers who attend to the patient or family as the person is dying. Other trained volunteers also do Lead Doula Work; this person serves as the initial connection to the patient and family, ideally right after admission to hospice. That person coordinates with staff and can start helping the patient and family with planning, thinking about end-of-life rituals, etc. Once the patient and family choose to have a Lead Doula involved as part of their care, that volunteer is connected to the person’s plan of care. Part of the training includes training of the staff as well, so that the IDT understands how the doula program can enhance their work.

What do you consider to be a “good” case for a doula to be involved?

Ideally, the patient and family will be open and comfortable addressing issues around death and dying. If a family has limited caregiving support, a doula can be a great addition to the experience. I have found that doulas are often requested when there is conflict among family members, and I have met patients who chose a specific hospice program because of the doula program.

Here’s a great “real life” example of how an EOL doula supported a family. As one patient was actively dying, there were at least 15—20 people in the room with her. But the doula could see that her husband needed some time alone with his wife, and was able to advocate for him and help provide that important, intimate time. Some doulas do experience some resistance from families; they feel that having a “stranger” there at such an intimate time will be disconcerting. But even if they choose not to have the doula present at the actual death, the doula can still provide the family with education about the dying process, and help think about legacy and ritual work that might precede the death. Of course the fullness of the approach can have the most impact, but even in “pieces” can provide great support to families.

What does the typical doula training entail?

The training is 22 hours in total, with Lead Doulas receiving an additional ten hours; traditional hospice volunteer training is generally around 12 hours. The difference is not just in the “intensity” or length of the training, however. In doula training, each volunteer is encouraged to explore his/her own understanding of death and dying, and also to do experiential training around ritual and legacy work. Currently I provide all of the training myself but am hoping to develop a Train the Trainer format.

How can the doula program benefit hospices?

Having trained doulas adds to the core staff that works with patients and families, especially during the active dying process. Sometimes hospice staff can be stretched thin with big caseloads and may not always be as available to families as they would like. A trained doula can provide another set of “eyes and ears,” and the staff knows they will be given important information about the patient’s situation.

In any survey we have done, we have noted that patient satisfaction has gone up when a doula has been involved. Understandably, the dying process can be filled with fear and anxiety; the family is often unprepared for the death, and sometimes not even present, even if they had wanted to be. Including an EOL doula can help avoid some of those situations. Another direct benefit is that there is not a great deal of additional cost to the organization, because doulas are all volunteers.

What are some of the other benefits that you have seen?

Ideally, the work that the doulas do will become an integral part of all patient care. For instance, legacy work is a vital component of what a doula can do with the person who is dying; incorporating that type of work into every patient’s experience can make a huge difference for them and their family.
Another organizational benefit is that the program adds to the “menu” of what a hospice can offer; as the field becomes more competitive, it can lead to referrals and even length of stay. When physicians begin to understand the experience, they may encourage their patients to participate, or to choose a hospice program that offers this additional layer of care.

Being an EOL doula is potentially very challenging work, especially for a volunteer. What sort of support do the doulas get?

When I was staffing the program (at Continuum and then at Valley Hospice), I was the primary support person. Any hospice wanting to include a doula program would need to be sure that there were understanding staff members who were there to offer psycho-emotional support. After every vigil, when a doula has stayed with a patient while he or she died, there is a “processing meeting” to both help the doula learn from the experience and process what has happened.  Being part of that experience is understandably very meaningful and very intense; it’s important to be able to ensure that the volunteer doula can find a way to understand the experience but then let it go. Often times I will encourage a break between volunteering for vigils, to ensure that return to normalcy for awhile.

How do you match up the doulas to those who are dying, since obviously that is not something that can be pre-scheduled?

In one program, doulas sign up to be “on call” for specific five or six-hour shifts. At another program, one or two of the volunteers were designated as “schedulers.” As it became clear that a patient was beginning the active dying process and requesting a Vigil, these schedulers reach out to other volunteers to cover specific shifts. Often members of the IDT will also participate in part of the vigil as well. I could see this type of program being used in other settings, such as long-term care settings; it does not need to be embedded in a hospice program.

What to you are some of the critical components of a good EOL doula program?

I always emphasize planning as an integral part of the overall program. The focus is on how to make a person’s last days meaningful; that can include important elements such as the atmosphere and the environment of the space.  The event is always sacred, but it must also be accessible to others who may want to participate. For instance, the doula may help the person designate a particular place that he or she will want people to sit in during the vigil; that helps set the tone that this is not an “ordinary” space or time, even if it is just an ordinary chair. With all of the stress that families are going through as someone nears the end of life, attention is not always given to what that actual dying process will be like. Having an EOL doula can help the dying person contemplate what might bring meaning at that time.  Just opening up these conversations can create a new and transformative experience for the dying person and those who love him or her. 

For more information, please contact Mr. Fersko-Weiss directly at hfw4589@optimum.net, or 845-988-6767.