In our culture, many fear and avoid the topics of death and dying at all costs, but we all eventually die. Death is a universal, fundamental human experience much like birth. It’s a transition, a passage. It is a time of potential growth and deep connection. Death is part of life. It does not have to be something that just happens to us. Our experience of death is something that we can shape and share with our loved ones in the context of our end of life circumstances.
A Little History
The word “doula” is derived from ancient Greek meaning “a woman who serves.” Of course, people of all genders today serve as doulas. The modern role of the doula was associated with the natural birth movement in the late 1960’s in which a person, usually a woman, served as a companion to the birthing mother, supporting her emotionally, physically, and spiritually throughout the birthing process.
The Role of the End of Life Doula
The role of the end of life doula is as broad and diverse as the clients we serve. Doulas provide emotional, spiritual, and practical non-medical support to individuals at the end of life and those who love them. The doula’s work is based on the specific needs of the individual and takes place wherever they call home -- the family home, assisted living/continuing care facilities, hospice programs, etc. End of life doulas work with individuals and families from all walks of life and faith traditions in collaboration with the client’s healthcare team and other care providers. A key skill that doulas bring to our work is deep, active listening. Listening is the foundation upon which our collaboration with individuals is built, enabling the doula to meet them where they are, understand their perspectives, and focus on their specific needs.
Benefits of Working with an End of Life Doula
The end of life doula’s unique role can bring extraordinary benefits to those who are dying and their loved ones. Doulas can “fill in the gaps” that other types of care are not designed to provide. The doula has the time to focus exclusively on the needs of the individual and their family. Some benefits of working with an end of life doula include:
helping the dying and their loved ones manage fear and anxiety through listening, conversation, guided imagery, breathing techniques, and other activities, along with caring touch, based on the individual’s consent/comfort level.
offering a calming, supportive, non-judgemental presence during a time that can be quite stressful.
offering emotional support to individuals and families.
providing non-medical comfort measures (companionship and presence, readings, music, soothing oils, etc.).
providing respite care so that loved ones can sleep, eat, and otherwise care for themselves.
connecting individuals and loved ones to community resources that are beyond the doula’s scope of practice.
assisting with funeral and burial planning.
Framework for Care
There are many ways to be a doula. In my practice, I use the International End of Life Doula Association’s (INEDLA), three-phase model, developed by Henry Fersko-Weiss, as a framework:
Phase I: Summing Up and Planning
This phase is focused on exploring important aspects of the dying person’s life. It may include elements such as a life review and the creation of a legacy project where the individual and the doula, along with loved ones if desired, explore and reflect on the client’s life. This reflection can take verbal, written, visual, or audio form, or may be expressed in any way that the client desires. A legacy project can also be done entirely by the family/loved ones if the client is not able to participate. It can be a beautiful way to preserve the individual’s memory and provide a tangible way for loved ones to connect with the dying long after they’re gone.
Another aspect of this phase includes planning for the client’s last days. Where do they physically want to be during their last days of life? How do they want that space to look, feel, smell, and what do they want that space to include? How does the client want to be treated by loved ones — do they want to be touched and held? Do they want music? Do they want photographs of their loved ones surrounding them? Would they like their pets to be involved? How will the client’s spirituality be honored? This phase, like all of the other phases, is based on the specific needs and desires of the individual and because of that, can take many forms.
Phase II: The Vigil
The Vigil takes place in the days and hours leading up to the client’s death and is the time when the planning work in Phase I is enacted. This is a time of “holding space” at the bedside. The doula provides emotional, physical (non-medical), and spiritual support for the individual that may include touch, guided imagery, readings, music, ritual, and more, based on the needs and desires of the client. The doula also supports the loved ones at this time, providing information and reassurance about the dying person’s symptoms as they occur. The presence of the doula can also provide opportunities for loved ones to rest, eat, shower, and otherwise care for themselves with the knowledge that their loved one is not alone.
Phase III: Reprocessing and Early Grief
After the individual has died, the doula may remain involved with the loved ones for approximately 1 - 3 months as a support person for the early stages of grief and bereavement. The doula supports the loved ones with deep, active listening as they reprocess stories about their loved one in general and specifically leading up to the client’s death and at the moment of death. Reprocessing can help loved ones begin to integrate and express their emotions about the loss. The doula may utilize many of the tools that were used during the earlier phases of work with the family including guided imagery, relaxation/breathing techniques, honoring the spiritual, etc. The doula is also in a position to provide additional resources should loved ones need to look beyond the role of the doula for assistance and support.
In addition to the role described above, end of life doulas can serve as funeral guides, helping families and loved ones explore options from traditional, mainstream funeral/burials to green burials, home funerals, etc.
If you are reading this, it is likely that you are exploring death, dying, and grief, have a loved one who is nearing the end of life, or that you are nearing the end of life yourself. These can be difficult and sensitive topics to explore and the prospect and process of dying can invoke fear and anxiety. End of life doulas meet clients where they are without preconceived ideas or judgement and provide support as needed to help ease the transition for the individual who is dying and their loved ones. Doulas can empower individuals and loved ones to take ownership of their own dying process, enabling them to open up to the opportunities that this profound stage of life presents to us.