While some doulas usher in the beginning of life, others choose to embrace the end. Greek for “woman who serves,” a 21st century doula assists with life’s most remarkable transitions: birth and death. For an end-of-life doula like Juliet Sternberg, facing death is her job. Sternberg, 54, has worked as a social worker for more than two decades, and three years ago became program manager at New York’s Doula Program to Accompany & Comfort. In both her own relationships and those of her volunteer staffers, she has discovered the joy in the bonds that can develop between the living and the dying.
You started off in mental health, and then transitioned into geriatric social work. It seems you’ve always had a passion for comforting people. How did you get involved in working with dying people?
My first client at the mental hospital was schizophrenic. He pulled out all of his teeth with a Swiss Army Knife when he was in college because he didn’t want to be attractive to girls. He taught me a huge lesson about accepting people. When I transitioned into work with older people, it still came down to the same lesson I had learned from my first patient. You’re just accepting people for however they’re doing. I really came to love supporting people through the whole winding down period. I see it as a period of life, rather than a period of death.
Death doulas, end-of-life doulas, and spiritual midwives? What’s the proper term to describe the work you do?
There are people who call themselves death doulas. They are trained to work with people on vigil work, specifically the last 12-18 hours of somebody’s life. They will work with the family in helping somebody into the great beyond. We are end-of-life doulas. It’s rare that one of our volunteers is actually there for the last moment. Our focus is the last one to two years of somebody’s life. We train volunteers to form relationships. The visits provide patients with the one thing all the professionals aren’t doing: to just plop down and say ‘How are you doing?’ It’s about really getting to know somebody in this point of their life, all the while knowing they’re going to die.
What exactly are the duties of an “end-of-life” doula?
The point is that there are no duties. You’re showing up every week to just sit down and talk. We have a patient who is a retired Columbia professor. Every week he prepares a lecture for his doula. The doula volunteer was learning Sanskrit! The same people who referred him also referred a woman who loves playing checkers –all she wants to do is play three games of checkers a week! She had a stroke, and her speech isn’t all that great, so they truly communicate via checkers.
Death doulas require a three-day training. What is the training process like for an end-of-life doula?
We have an eight-week training where we teach these people to think about their own relationships with illness and how can they learn to listen. It is important to learn how to communicate with somebody, while not trying to fix the problem.
What is the application process like?
We have about 300 applications a year to be a volunteer; we weed it down to be about 12-15 people. We don’t accept anyone with a background in social work, so our volunteers are actors, international hair stylists, aroma therapists, PhD students, or even retired physicians. You name it! At the moment, we have about 40 people visiting people in their homes or nursing homes. The youngest volunteer is 25, and the oldest is about 86. The youngest patient I’ve known is 43, and right now we’ve got two that are 99.
How are the patients referred to the program?
We spend a lot of time reaching out to social service and medical professionals. The patients are required to have some other professional in place. We don’t want the doula having to take on these types of routine tasks. We want to keep that a pure relationship, without having to worry about cooking or cleaning.
How do you match both the volunteer and the patient?
Very carefully. We’ll focus on the patient’s background, career, family, life experiences, and then we’ll see what the prognosis is. A lot of it is based on location. For example, we have a 99 year old who just got referred in Washington Heights. She speaks fluent Italian. The closest volunteer to her also happens to speak Italian. Another patient was one of the original flight attendants for Pan Am. We matched her with a young girl who has traveled a lot for business. They’ve had quite interesting discussions. The older lady was quite conservative and they managed talk through quite different perspectives and find common ground there. It’s those little details that make a strong relationship.
How do you deal with building a relationship with someone when you know the inevitable outcome?
What I’ve found working with people who owned dying animals is that the most intense, loving relationship was in that last six months when they knew the animal was going to die. Their attention to detail and the love that developed was greater than all the years beforehand. The same is true when the doula volunteers enter into a relationship. They know the person is sick, but that love still develops.
When that patient does pass, how does the doula deal with his or her own grieving process?
Some people are really surprised at how deeply they miss somebody. There is a sense of satisfaction in recognizing the relationship had been good, they had an impact on somebody’s life, and someone ended up impacting their life. It seems like an odd thing for somebody to want to do, but our volunteers keep coming back. We always have them take a break for usually around four to six months until receiving another assignment.
How has your work changed your perception about the end of life?
I would refer to it as a stage of life. It’s really more about life than death. I’ve been really surprised at how few patient conversations are actually about death. Very few of the discussions are actually about fears or thoughts about death. People are not thinking much about death. I just had a call from a patient this morning. He probably doesn’t have more than a few months to live, but he’s talking about moving out of New York City in the next couple of years. They’re really thinking about life