interview with a death doula — a person who helps support you at the end of your life

This post was written by Alison Green and published on Ask a Manager .
Have you ever heard of a Death Doula? I hadn’t, so when I had the opportunity to ask Death Doula Sharon Crowell about her work, I took it! Here’s our conversation.
What does a Death Doula do?
A Death Doula provides support to a dying person and his or her family/caregiver. Recognizing that death is more than a medical or legal event, the Death Doula performs the often over-looked role of supporting the dying person in identifying their values, beliefs, and important life experiences. The Doula ensures that these are recognized through legacy projects and are reflected in decisions and conditions happening during the last months, weeks, or days of life. The Death Doula will often meet with family members several weeks after the client’s death to talk about how they felt about their loved one’s final days – what went well, what may feel incomplete, and to help provide closure. They do not provide grief counseling or spiritual guidance, but rather stay present to provide space for the dying process to unfold.
In terms of actual tasks, those can vary widely based on the client’s needs. Doulas can help facilitate conversations among family members regarding their loved one’s final wishes. They may help the client to gather recipes, songs, photo collections to leave behind to future generations. The Doula may provide vigil support at the bedside, assist in making calls or greeting visitors, or help plan a memorial service. The list is as unique as the person requesting Death Doula support. At one time I was called in as a Doula after the death. The patient had a sudden heart attack and died in the ambulance on the way to the ER. The spouse requested that I meet her in the ER and to simply sit with her and her husband as she said prayers.
What is a legacy project?
A legacy project is a project that a dying person creates that allows them to be remembered in a special way.If the client has been an excellent cook, the legacy project may be a collection of best loved recipes that can be distributed to friends and loved ones. Recorded interviews that touch on important aspects of the person’s life, photo albums that can be reproduced, collections of music that the client loved or that represented milestones in their life can all be considered as legacy projects. For clients who may be dying at a young age, letters to children or grandchildren to be opened on future special days – graduation, marriage, birth of first child, etc. are sometimes done. In one case, a talented seamstress took all of her friend’s blue jeans after she had died and created small pillows from the denim material to give to a group of friends that the client had identified. Not everyone wants to do something like this, but it is always a possibility. Simply asking “how do you want to be remembered after you have died?” or “what would you like to leave behind for friends and loved ones?’ can open the conversation about legacy projects.
Do people generally know what they want their end of life to look like or is it part of the role to help them figure it out?
In general, most people have not given much thought to planning for their end of life beyond attending to practical measures such as creating an advanced directive or a will. Those are obviously very important and everyone should have those. Beyond those practical measures, however, there is an entire array of decisions that can be made. Our local library recently had a workshop on writing your own eulogy, something most people have never given any thought to. There are a large number of burial options other than burial in the ground or cremation that most people are not aware of. Identifying who you want to have with you at the end of life (and, perhaps more importantly, who you do NOT want with you) is so important. I could go on and on. A lot of people will say something like, “Well, I don’t care about that, I will be dead” or “My children will take care of all of that.” But the more decisions that are made and shared with caretakers or loved ones, the easier it is on everyone in the final days. We plan for births, weddings, retirements, and other life milestones. Death is another transition or milestone, yet we shy away from planning for it as if it is something to be feared and not the opportunity to recognize a unique life well lived. A life whose values are expressed in their death process. Once the person has died, those remaining can take comfort in knowing that they did everything the way their loved one would have wanted.
If someone hires a Doula, it is likely that they have given some thought to these questions already. But you are exactly right. Depending upon how close to death the client is, a Doula can help clarify these wishes and facilitate conversation between the client and family members or friends to ensure that everyone understands what the client wants, even if it is something they would not choose for themselves. Like hospice, engaging a Doula early on when a terminal diagnosis has been given can allow the time for all of these issues to be thoughtfully discussed and communicated. It also allows time for a relationship to develop between the client and caregivers.
How did you get into doing this work?
I am a licensed acupuncturist and several years ago, two of my clients were diagnosed with the same terminal illness. The clients asked if I would come to see them in their homes once they were unable to make the trip to my office. The difference in the atmosphere between the two homes was startling. In one case, family members caring for the client were calm and knowledgeable about the dying process. They had engaged hospice early on and formed relationships with the caregivers. The client was comfortable in a room with the windows open to spring birdsong and soft music playing. The room was free of clutter and medical-related supplies. There were photos of family members and travel that the client had been on around the room. The entire house felt so peaceful. In the other case, the atmosphere was one of chaos and confusion. Yellow sticky notes were pasted on the wall around the bed, which was full of medical supplies. The primary caregiver was fearful to the point of appearing angry and resentful of the role. It was a completely different atmosphere.
That experience left me wondering what I could do to ensure that people had the experience of the first client and not the second client. I poked around on the internet and found out that there was this thing called a Death Doula. I immediately signed up for the weekend long training.
What do you like about doing it?
It is an immense privilege to be with someone during this sacred time. It feels like a valuable service to be able to offer a grounding, stable presence in the midst of the emotions that can get stirred up during the dying process – fear, uncertainty, grief, loss, etc. To simply sit in the middle of all of it and stay present with the client allows the loved ones some space to go through their own process. I also think it is important work to acknowledge the end of a life well lived. We celebrate other transitions in life – birth, graduations, marriages, retirements. Death is another transition and a time to celebrate the unique life of an individual, a life that will never be repeated.
What have you learned from this work?
Even though we know that we are all going to die someday, people are reluctant to address or to talk about end of life wishes with their loved ones. The more that these discussions start when everyone is healthy, the easier (although it is never easy) it is on loved ones who will be with the dying individual. The best decisions are not made in the midst of panic but are made from a position of knowing that one is providing the support measures that reflect the values, beliefs, and desires of the dying person.
Hospice is best called in earlier rather than later. Hospice is a whole other subject, but it can be engaged when an individual is given six months or less to live. I recently read a statistic that on the average people call for hospice care three days before the client dies. Of course, no one can predict the exact time or death. The point is, people delay getting hospice care when it can be such a source of information and support. There is a feeling that calling hospice means that someone has “given up.” Hospice is simply the next step in the trajectory of someone with a terminal illness.
My mom, who is terminally ill , has talked a lot about how surprised people are by how openly she discusses her situation. Some people don’t know what to say because they’re not used to people discussing their own death so freely, and others seem to really like that she’s comfortable talking about it. Why are most of us so weird about death? Is it because in modern life, we have incredibly limited experience being around it, if we’re lucky?
I think that people in America see death as a failure. Look at the language we use – “she lost her battle with cancer.” “He bravely fought his disease for many years.” Death is not something that needs to be denied or fought against. It is a natural part of life. I am not speaking here of sudden tragic deaths such as murders or car accidents. That of course is a different situation entirely.
I also think that there is such an element of fear around death as no one really knows what happens when or after we physically die. There are reports of near-death experiences and from people who were clinically dead before being brought back to life. These reports are very similar. They are, however, for the most part reported by people from the same cultural background. We like to know what’s next and are uncomfortable sitting in the unknowing space that is end-of-life.
Your mother’s frank speaking about her own imminent death is of so much value to so many people. To hear her discuss her own experience in an almost matter of fact way is allowing death to be normalized for people who are reluctant to talk about it. She has shared her experience in such a beautiful and healthy manner. By example, she is also emphasizing the value in living each day to its fullest in the face of a terminal diagnosis. I admire her so much.
You’re going to be my mom’s Doula when the time comes. (Thank you!) What advice do you have for families when a loved one is working with a Doula? What should we know and expect?
The Doula’s role is to make sure that the client’s values and expressed desires are upheld during the dying process. A Doula does not provide medical, legal, financial, or spiritual support/advice. Having said that, every Doula comes to the position with different skills and interests. Some enjoy working with the client on a legacy project, while others are more skilled with the physical end of life process, sitting vigil and explaining to family and caregivers the process of dying. My personal background is as a nurse and acupuncturist. I can help family caregivers understand the medical interventions. (When you are under stress, you have to hear things six times for it to sink in. So even when a medical provider has explained something, the caregiver needs to hear it several times to understand). I also use my acupuncture skills by applying gentle acupressure to points that allow relief from pain and anxiety.
It can be tricky when the family hires the Death Doula rather than the client. This usually happens when end of life is imminent, and often after the patient is able to clearly state their wishes.
The client or caregiver should feel free to ask a Doula about the particular skill set they bring to the role to make sure that what the Doula can offer is suited to the client’s needs.
How does someone find a Death Doula?
Right now, there is no national board or certification process for Death Doulas. Given the vast array of support measures that a Doula can offer, I personally think this is a good thing. It allows the Doula to be responsive to the particular needs of a client and/or the family and loved ones.
The three organizations that have an established reputation for training Death Doulas, and who list their graduates on their websites, include:
The International End of Life Doula Association (INELDA)
The University of Vermont Death Doula Training Program
Doula Givers
A quick google search shows many more training offerings. I personally am not familiar with any of them, but the three listed above have an established track record. Word of mouth is also a good way to find people. Many hospices have a list of Death Doulas to whom they refer patients, as do programs such as Inova’s Life With Cancer.
You can get in touch with Sharon at [email protected] or through her website (currently being updated).
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