Death Doulas
A Conversation with Susan Nesbitt
Story by Parker Forsell
Photograph by Dylan Overhouse
For most of history our pathway into this world has been through the hands of midwives and doulas. In the 21st century, these positions might have affiliations with hospitals, but that is actually a quite recent development. Midwives often receive more medical training regarding pregnancy, birth, and the postpartum period and doulas are more likely to be trained to provide you and your family with emotional, informational, and physical support during pregnancy, birth and the immediate postpartum period.
Major hospitals are developing birthing wings, which have been influenced by the fact that many women resist the sterile and fluorescent lit atmosphere of traditional medical establishments, and seek out home births or birth in a birthing center. Many midwives and doulas remain separate from hospitals, yet perform all the functions that would happen there. They will meet with expecting parents several times during a pregnancy, not only offering education on the baby’s development, but emotional support for the tremendous responsibility and gift it is to bring a human into the world. With the help of the midwife and doula a birthing plan is put together that includes medical considerations, but importantly an intentional plan for supporting the emotional and even spiritual comfort of the expecting mother, her baby and the family.
What about our pathway out of this world?
We can look to ancient cultures and see evidence of elaborate rituals based on beliefs held regarding the after-life. Many indigenous cultures talk of the path of souls and the spirit of loved ones traveling an invisible journey to star clusters and up through the milky way. There are considerations for the time of year that certain constellations are in a part of the sky - to the point of delaying burial or ceremonies until that time of year.
As we are coming to understand, many indigenous traditions are not something from the past, but in many instances are still being practiced today and have much to teach us.
Our European immigrant ancestors and for the most part current traditions, continue to follow a fairly similar path - preparation by a mortician after death, initiation of a wake where friends and family come together to pay respects, a funeral service (that many times involves a church pastor or minister), and then burial. There are many degrees of how this might be expressed spiritually, by the family and by those attending the event. Much of the tenor of the funeral is shaped by the family and loved ones and sometimes the one who has departed through a living will or conversations with friends and family.
Although the above may be the usual, there are many derivatives. In 2006, Susan Nesbitt and a group of women in the Viroqua, WI area founded Threshold Care Circle to help families rediscover the traditional folkways of a home vigil and family-directed funeral. The group also helped to found the Driftless Green Burial Alliance to educate and assist those interested in natural burial without traditional embalming fluids, and a simple wooden casket.
Nesbitt came to her life’s path through the experience of sitting with a dear friend at the end of their life. The experience was so moving for her Nesbitt says, “I knew deep in my bones that I wanted to do this again, that I wanted to be with people and their families during this sacred time.” At the time she knew nothing of death doulas, but found that one could become a hospice volunteer without a nursing degree. She has been a hospice volunteer for 20 years.
Henry Fersko-Weiss, author of Caring for the Dying: The Doula Approach to Meaningful Death, was a hospice nurse in New York City for six years and during that time he witnessed many patients dying under less-than-ideal conditions. Patients being rushed to the hospital to die, when they had specifically requested to die at home, a husband or wife sleeping through the death of their spouse in the next room because they were exhausted and did not recognize the signs of imminent death. There was something missing in the hospice program, the hospital could see it too, but the overall structure and caseload prevented them from being able to seek a solution.
In 2003, a friend of Fersko-Weiss decided to leave a PhD program in anthropology to become a birth doula. As he learned how she was working with people during their birth experience he began to wonder if the model might also work with those during the end-of-life journey. He ended up going through birth doula training to thoroughly understand the process.
After discussing his experiences with the CEO of the hospice he received her blessing to pilot a program of death doula training based upon what he had learned during the birth doula training. In 2004, 17 people enrolled in his program and became the first death doula’s in the country. Since then Fersko-Weiss has trained hundreds of others, over 2000 people have gone through his training to pursue the work of a death doula professionally or simply to help friends or family during their end-of-life journey.
Susan Nesbitt witnessed similar unevenness to the care she as a volunteer and the nurses were able to give within the structure of the hospice program. Though she says that hospice volunteers are doulas, a non-medical companion to the dying, there is further training for a doula. Nesbitt had been interested for a time in how she could become even more deeply involved in the hospice work, even contemplating being a nurse, social worker, or chaplain, but ultimately shied away from those roles because she felt that many times they did not get to spend much time with the person who was dying. In 2017, she first heard about death doulas, and ended up seeking out a doctor in La Crosse that had attended a training in Colorado. She recommended to her a program at the Conscious Dying Institute in Boulder, Colorado, and in 2019 she took the training to become a Sacred Passage Doula. Subsequently, Nesbitt went through a one year training in Oregon and is currently in her second year of apprenticeship.
Fersko-Weiss begins his book “Finding Peace at the End of Life”, by outlining the differing stories of a couple with the process of dying. The husband in the partnership had a precipitous, downward path caused by a tumor. Though they were working with a home health care nurse, one morning she came to find him unresponsive and immediately called 911. He was rushed to the nearest hospital, not his own, and slipped into a coma. After hours of sitting in a crowded waiting room the nurses encouraged his wife to go home and get some rest before her husband’s surgery the next morning. Her husband ended up dying alone, she actually found him herself when checking on him the next morning.
Understandably, the woman was greatly affected by the process and became determined to be more aware and in control of the process of her own end-of-life journey. When she found out she had ovarian cancer four years later she began work with a death doula.
An important part of the work with a doula involves working with your family and loved ones to discuss important life events, lessons learned, values they’d chosen to live by. An outcome of the process in this case had been to unpack a box she had been saving for years with cards and letters her husband and children had given her. They all took the time to read and discuss the memories the cards and letters brought up and her two children and a grandchild ended up making two large collages that put together pieces connected with the family. Fersko-Weiss writes, “the best part of this legacy work was the opportunity that she had to speak to her two children directly about the important values that had sustained and deepened her relationship to their father over the years.” The process helped her to let go of many of the negative memories that were associated with her lack of closure regarding her husband’s death.
Other activities that the doula worked with her on included guided imagery involving imagining a meaningful place from her life experience. The ability to become practiced in the process was meant to help bring a general sense of well-being and also a means to help alleviate discomfort associated with symptoms. The doula also worked with the family to discuss ways to bring a sense of the sacred into the space where she would die and a ritual that they would all do right after she passed.
“Death never takes a wise person by surprise” - Jean de La Fontaine
When it got close to the time of her passing one of her daughters had moved in, the doulas had established a schedule of round the clock shifts and the sacred space of the room had been prepared. She was surrounded by pictures, lavender scented candles were burning, family and friends were present. The doulas made sure her mouth and lips stayed moist, held her hand, caressed her face, and spoke to her of the special place that she had been envisioning during her guided imaginings.They were playing her favorite music and friends and family took turns reading quotes from the legacy collage that her children and grandchild made.
The process went on for three days with people spending time with her in shifts. When the doulas determined late one night that she was close to the end the children were called or awakened and both were able to be with her as she took her last breaths.
It might seem obvious, but one of the most important aspects of doula care is the ability to listen to a person experiencing their path to death. Fears, regrets, frustrations, struggling to understand a relationship with God or the afterlife - may be some of the whole-hearted and emotional concerns someone is needing to share. To be a deep and active listener, one has to leave a lot at the door, remain open and caring and conscious of inner dialogue that moves away from being able to really hear what someone has to say.
There are definitely parallels here with meditation or mindfulness, which lays a focus on letting the things go that take you away from being present. Centering is a technique that one can use to come into the present moment. It can involve focusing on the breath, taking some time, even 10-15 minutes, before visiting someone to simply pay attention to the breath. The simple act of taking the time to focus in this way can de-clutter the mind and aid in being able to truly be present and active in deeply listening to someone sharing the most important thoughts from their life.
Nesbitt mentions drawing from Parker Palmer’s Circle of Trust and the Touchstones that outline thoroughly how to participate as a deep active listener. She goes on to say that being present is so important for a doula, “I think all of us know what it feels like to be in the presence of a person who is really actually there. Listening without an agenda, with an open heart, non-judgmental. We are so often distracted that I feel it is the best I can offer, to just be present without any judgment.”
She also outlines that in deep active listening another key idea she has drawn from Palmer is that when the going gets tough, turn to wonder. “If someone is relating a really difficult story and I find myself dropping into a judgmental thought, I try to ask an open and honest question, rather than some thought that I feel I already have an answer to in my mind. To me active deep listening is being present, being in non-judgment, no fixing, no saving, no correcting, and turning to wonder. Also, importantly, being comfortable with silence.”
The practice of death doulas is so new that most people have never heard of it. Many of us live in fear of death or if we aren’t actively in fear, we have subconsciously pushed it off to a place where we don’t encounter the thoughts. In Nesbitt’s work she is frequently encountering family members who are meeting the idea for the first time and she has witnessed many who have been profoundly affected by the process. As part of her work with conscious dying she has been able to take many people and their families through a three month life review process. The work has even expanded beyond those that are actively dying to those that are deciding to participate in this process for their own preparation purposes.
The three month life review process addresses the question of having three months to live. What are the physical, spiritual, emotional, and practical levels of life? What are the areas of your life where you may have regrets, you wish things had gone differently, what things have been left unsaid, or what things do you still want to do. What would concrete steps look like right now? Nesbitt says, “the life review is really an opportunity for the dying person to reflect on their life in a profound way, but also to tie up loose ends and make amends when possible.”
Connected to the process can be a legacy project, visually pulling together pictures, stories, poems that have been influential in the life of a person and their family. Nesbitt says this can be a real gift to those that are left behind, “but it really helps people to see their gifts to the world, it may seem at first that some things are not that important, but most often it helps reveal to them their legacy. All of us have something to say and contribute.”
These projects also offer a chance for the dying person to experience how others have seen them as well. Nesbitt echoes, “it really gives the opportunity for all kinds of mysterious things to unfold.”
Another aspect of doula work includes the idea of vigil or some conscious participation in what those last days and possibly the days after death may entail. Nesbitt says there are two forms of vigil, the process of sitting with someone who is actively dying and the home funeral process that involves actively sitting with someone who has already died, praying in whatever way that might evolve. Whether before or after, the idea of vigil is to help with the transition. “It is being a companion, who is sitting and holding space. It doesn’t matter what the person’s beliefs are about the afterlife, religion or spirituality, the important part is that you are sitting there as a soul companion,” says Nesbitt.
As alluded to above, many cultures, ancient or current, connect ritual with the death transition. Nesbitt believes this is an extremely important part of the process, “it is a bit of a lost art, but I believe it absolutely helps with healing.” As a doula she tries to encourage people to incorporate ritual whenever possible, however that looks to them. Nesbitt remarks, “it does not need to be some elaborate, religious thing, it can be pretty basic, but it is showing up with intention.” She says she has seen the power of ritual play out in every single death journey she has shared.
Nesbitt relates a particularly powerful moment with a mother and sister of a recently deceased individual. Prior they both had shared that they did not want to see her after she died and they did not want anything to do with that process. Nesbitt shares, “we told them of the process of care of the body, that they could be included and it was a lovely way to cleanse the body, to prepare the body for the final destination.” They were open to the doula and volunteers doing this process, but they did not want to participate. It was taking place in a nursing home and the family was waiting in the hallway, but began to peek in to see what was going on. Because of their curiosity they were ultimately invited in and they ended up bathing the woman, their daughter/sister. Nesbitt says, “it was really beautiful and so profound and healing for them.”
Nesbitt adds that part of the work with the Threshold Care Circle is teaching how to bathe the body. She says, “it is actually incredibly intuitive, it’s in our bones, but we have given it all over to the funeral directors and we don’t know how to do it anymore.” Nesbitt remarks, it is just like when you take your baby home and think you don’t know how to wash a baby and have your first moment of insecurity. But you do it and then realize that you intuitively knew what to do. “It is the same thing with a dead body, you very lovingly wash the body and you can infuse that with as much ritual or ceremony as you want. There could be prayers, there could be music playing, the room could be decorated with flowers and wonderful smelling herbs. There can be an anointing of the body, with oil, blessing the head, and the eyes that have looked out onto the world, the nose that has smelled things and the mouth that said beautiful things.” The process can be made however the family wants, the doula can be doing these things for the family or they can be doing it together.
These rituals often can be part of the vigil process while one is actively dying and the family and their loved one may be very involved with how this will happen. Nesbitt notes a recent family she worked with that really took up this process, praying and singing during those final days with their loved one. The singing and praying continued during the washing of the body and others came when they were finally carrying the gentleman out of the nursing home and joined in the singing as they carried him out.
The body was wrapped in a special blanket for transporting him home where people sat vigil with him for four days around the clock, praying and reading, helping with the transition. Nesbitt stresses how all of this ritual can be very important for the healing process.
While this stands out, the idea of ritual tends to be taken up by individuals in quite a natural way. She says she can bring suggestions or examples of what others have done, and importantly assure people that they will not do anything wrong, but Nesbitt adds, “If you put your heart into this it will be beautiful, it will be meaningful.”
If one has the opportunity to be part of this process with their loved ones at the end of life, Nesbitt also stresses the very practical component of having things in order. It becomes a gift to those that are left behind to have things spelled out, things as mundane as passwords and other household directives. She works with people who are not diagnosed in any way yet as well, but want to be prepared. “Planning for death and talking about death does not need to be morbid,” Nebitt adds, “it really is something that our culture does not like to do.” She feels bringing death out of the closet and talking about it is part of being grateful for being alive, while also being conscious of what is inevitably going to happen.
A plan can have many components, the nitty gritty of financial aspects, but also things like - I want this psalm to be read or I don’t want anything from the bible to be read or this music playing. A plan can involve the room you will be in and different aspects that would make that feel safe and welcoming. An important part of laying out many of these practical things is that maybe you will not be able to share in the same way toward the end. Maybe you have heard people remark, “well, I don’t care what happens, I will be dead.” Nesbitt emphasizes how helpful this can be to your loved ones, to have a real idea of what you prefer. And if you generally don’t care, then it is still really helpful to write down things like passwords and other practical information that will be helpful to your loved ones.
Conscious dying is an art that we can choose to re-remember. With the help of a growing movement of death doulas and doulas in collaboration with hospice nurses, one can actively seek a sacred and holistic path toward exiting this world. May more of us contemplate the beauty of life to the point that we take care of ourselves and those around us through a shared understanding of our end-of-life journey.
For those that wish for some follow up from this article or to investigate these ideas further, Nesbitt points readers to the Threshold Care Circle and a book they put together called My Final Wishes. It can be found via their website: thresholdcarecircle.org
For those interested in connecting with a doula or just more information check out National End-of-Life Duola Alliance (nedalliance.org), Conscious Dying Institute (consciousdyinginstitute.com), and The Peaceful Presence Project (thepeacefulpresenceproject.org). Nesbitt is training through Anamcara Apprenticeship at the Sacred Art of Living Center in Bend, Oregon - apprentice.sacredartofliving.org