What is an End of Life Doula?

A few months back, I read a wonderful essay on Salon.com about Mara Altman's experience as an end of life doula.  I'd never heard of a death doula, so I wanted to talk to her about it.  We have doulas for birth, why not for the end of our life?  I think it's a wonderful step towards death acceptance in our culture.

DW: What is a death doula?
MA:  A death doula or as my mentor prefers to call it, an End of Life Doula, is someone who commits to visit a person who is at the end of his/her life for at least one hour each week until the person dies. The doula volunteer aims to get to know the individual beyond his/her illness and has no agenda. My mentor prefers the phrase End of Life Doula to Death Doula because it focuses more on the fact that these people are still alive. You can learn more at this website: doulaprogram.org

DW:  What made you want to become a death doula?
MA:  I had a lot of fear around death. I thought that getting to know this mysterious thing better might release me from some of my terror. I also liked the idea of volunteering and learning. The Doula Program offers great training and a lot of support.

DW:  Prior to the training, did you have personal experience with death in your life?
MA:  Yes. A friend of mine died of cystic fibrosis when he was ten years old. My maternal grandparents also passed. Don’t like it!

DW:  What was the training like?
MA:  The training was really great. We were in a group of about ten people. We met once a week for eight weeks. Each session had a different theme like spirituality, culture, diversity, healthcare systems and tools for visiting. We practiced being in different scenarios and also confronted our own thoughts and fears around mortality. Mostly, we trained to be able to go with the flow and be nonjudgmental of the beliefs and desires of the people we would be assigned to visit. We also gained access to a community of doula volunteers, all of whom were very cool, diverse and open-minded individuals.

DW:  What surprised you the most about becoming an end of life doula?
MA:  I was surprised that it wasn’t about death. I really expected to be matched with someone who would want to talk about death and their impending nonexistence each time I saw him or her. Instead I was matched with someone who I visited for three and a half years and maybe he brought it up once. The experience was much more about getting to know someone and building a relationship and learning the intricacies of human attachment and love than it was about dying.

DW:  What advice would you give to someone contemplating whether or not to become an end of life doula?
MA:  I think it’s an amazing experience and I believe it’s so important to be there for someone at the end of his or her life. It’s actually more of an honor. It felt like a privilege.

I would say that before you do it make sure you know why you are doing it. My mentor mentioned that some people come to the program in the hopes of redoing a death that they have regrets about. For example, if a person wasn’t capable of being there for a parent at the end, he or she may feel guilt and come to the program looking for a redemptive experience. My mentor said that if that’s what you’re looking for, you wouldn’t be happy with your experience. You have to come to terms with those issues in different ways. But if you want to learn and be generous and be challenged, I can’t think of a reason not to become an end of life doula. It’s been one of the most satisfying experiences in my life so far.

DW:  Are you going to continue doing end of life doula work?
MA:  I visited the same person for three and a half years. It was intense and awesome, but also really sad. I took a year off after his death, but now I’m back on the list to be assigned to someone new. Even when you’re not actively visiting someone, you are still very much part of the larger doula community. There are info sessions, monthly meetings and gatherings like picnics and an annual dinner to celebrate the lives of those we lost that year.

Mara Altman is the author of four bestselling Kindle Singles including “Baby Steps” and “Bearded Lady.” She has also written a book, “Thanks For Coming: A Young Woman’s Quest for an Orgasm,” which was published by HarperCollins and optioned as a comedy series by HBO. Twitter: @maraaltman

I'd love to hear your thoughts on this interview and while you're here, please vote in my burial vs. cremation poll at the bottom of my front page.