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Have you heard of “Death Doulas”? They, of course, prefer the term end-of-life doula, but the catchier term is the one that sticks in the mind and is what most people search for when first diving into this broad topic of death, dying well, and end-of-life care.
We will look at the way a death doula can help you navigate the dying process and final arrangements by looking at Henry Fersko-Weiss’ book, Caring for the Dying: The Doula Approach to a Meaningful Death.
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Caring for the Dying – Book Review
The doula approach is a guided process of reflection and planning for the end of a person’s life. The doula helps the dying person think through their end-of-life wishes, the environment of their last days and deathbed, family involvement, rituals, and reflection on the meaning of their death and the legacy of their life.
Secondarily, the doula aids the family in how to interact with a dying loved one, planning together for what to do immediately after the death, and a time of reprocessing with the family after the dust settles from all the funeral arrangements.
Additionally, the doula acts as an advocate for the dying person when they cannot speak up for themselves. This can be especially important if he or she is not conscious and family members or friends have strong preferences and seek to impose their will during a difficult time.
The method espoused by Mr. Fersko-Weiss involves a three-step process:
- Reflection and planning
- Vigil (the last days)
- Death and afterwards
Let’s take a look at each of these phases.
REFLECTION & PLANNING
We are so conditioned not to think about choices, that some considerations never even occur to us. It took years of my working with the dying to first think about where the bed is in the room and what the person lying in it sees in front of them.
Caring for the Dying, page 125
In the reflection and planning stage, the dying one is aware that death will happen in the near future. Often, they are in or nearing the final stages of a terminal illness or have received a conclusive diagnosis. The have already begun thinking and planning for death, which is why they have invited the doula to come and help.
The doula’s first steps are to engage with the dying one and their family with intentional planning and purposeful reflection. Sometimes this work comes easily, but often there are obstacles to overcome.
Perhaps the diagnosis was unexpected and physical deterioration rapid. Or it has been such a long battle that it is difficult to address death because they are so used to fighting against it. Other times the dying one is ready but close family members still cling to unfounded medical hope, refusing to help with planning for the final days. These are just a few of the difficulties a doula might see in the initial stages of their work.
Decisions & Dignity
There are two reasons planning and reflection are so important. The first is practical; the more decisions the family makes ahead of time, the easier the final days and funeral arrangements become.
A second reason is that planning and reflection provide shows honor to the dying one. Mr. Fersko-Weiss explains that as the terminal patient nears death, the face not only the loss of their life but also “the progressive loss of identity, autonomy, functional ability, and control. As these losses pile up, the dying person feels more and more diminished.” (p. 20)
The doula can help the dying one retain dignity and find purpose in their final days by showing them that they still have important choices to make. These include decisions regarding:
- Medical interventions and pain management
- Bedside space and atmosphere
- Manner, frequency, and duration of interactions with family, friends, and caregivers
- Where to die (barring medical emergencies)
- Body disposition options
- Funeral arrangements
- Last will & testament
Caring for the Dying introduces and addresses how the doula can help with each of these topics. Many of these issues should be discussed with the professionals: medical concerns with doctors, legal issues with an attorney, funeral arrangements with a funeral director.
The doula’s role is a little different. They come alongside the dying one and their family as a helper and a guide. The doula can introduce the need for discussion of these matters, remind the dying one that they can make their own decisions, and advocate for their wishes once the decisions are made.
Reflection & Meaning
In the midst of the planning stage, the doula will also encourage reflection and life review.
“Questions about the meaning of one’s life arise quite naturally as a person approaches death,” writes Fersko-Weiss. “The questions center on how well a person feels they have lived, the things they have accomplished, how happy they were, and the impact they had on others.” (p. 82)
The trouble, Fersko-Weiss explains, is that these questions often surface at random times, such as during a sleepless night, and disappear just as quickly without being fully addressed. The doula’s role is to help bring up these questions in an intentional way, allow the dying one to meditate on them, and guide them through life review in an intentional way.
VIGIL: THE LAST DAYS
When the doula and Celia finally planned how people should enter her room, Celia knew that she wanted to incorporate a feeling of gratitude. She didn’t want people to be sad around her because she was dying and they would miss her. Gratitude, she felt, was bigger than loss.
On Celia’s initiative, a favorite chair from the living room was placed at the entrance to her bedroom. The chair had a high back, no arms, and a wide seat; it was comfortable yet also very supportive.
The doula wrote a simple sign that she attached to the door-frame of Celia’s room, right next to the chair. It read: “Please sit here for a few moments before entering my room. Connect to a feeling of gratitude for all we have shared together or what we will share in the next several moments.”
Caring for the Dying, page 131
The vigil is the period in which the person is actively dying. This is when the body is shutting down with no chance of revitalization.
Sometimes this happens over the course of several weeks, and other times it comes on quickly and is over in a matter of hours. Doulas are trained to recognize when active dying begins, and instruct the family and the dying one about what to expect during this final phase.
Signs of Active Dying
The signs of active dying can include:
- Loss of ability to eat or even drink
- Drastic decrease in mobility
- Difficulty speaking
- Drop in blood pressure
- Increased and irregular heart rate
- Changes in breathing
- Fever spikes for no apparent reason
- Changes in skin color
- Loss of sight
In the planning phase, the doula will have discussed with the family what to do and expect during the vigil. Medical professionals and caregivers may also teach the family about the signs of active dying, but the doula’s role is to prepare them emotionally and guide them through these final days.
For those surrounding the dying loved one, this time is known as the vigil.
“The primary aim of the vigil is to hold the space for the kind of dying experience the dying person and the family want. This is why the planning work in the months of weeks before the vigil is so important. It gives the dying person and others the opportunity to think and feel their way into what would make the last days meaningful.” (p. 188)
This, to me, was the most fascinating and thoughtful topic in the book. Planning can be dry, idealistic, or somewhere in between; life review is important but is wholly dependent on how engaged the dying person is in the process. But the vigil is the meeting place between what the dying one and their family believes (or what they think they believe) and what they actually do. As such, the vigil can become an incredibly meaningful time for all involved.
Many times, as a vigil advances, people begin to learn how profound sitting a vigil can be. Without ever consciously discussing it, people get inspired to enter into a dynamic, sacred dance of physical care, touch, speaking from the heart, and following the model the doulas establish.
Death becomes less frightening. Instead, it becomes an honored rite of passage.
Caring for the Dying, page 187
Throughout the book Fersko-Weiss relies on stories to illustrate his points. The stories about keeping vigil, such as the one about Celia quoted above, are some of the most profound in the book. It is here, I think, that many readers will be drawn in and see the rich, powerful work that doulas can do, and decide to either engage in doula training or arrange for a doula to be present for their own final days.
DEATH AND AFTER
Story is at the heart of how we come to understand our experience, digest it, learn from it, and finally let go of the pieces that may hold us back from living our lives with purpose and joy. The trek through grief demands we tell the story over and over. We can’t recover or heal without story. It gives structure and form to our experiences.
Caring for the Dying, page 210
Ritual & Ceremony
In this section we come to understand a little more deeply the importance of ceremonies, rituals, and traditions. These are activities that emerge to celebrate, remember, and honor the story of the loved one’s life as well as the shared story of those present at the death.
Rituals and traditions are ways that we tell the story through symbolic action. Doing so, as Fersko-Weiss says above, gives structure and form to our experiences.
The role of the end-of-life doula is to invite the retelling of these stories in the form of rituals or ceremonies. At the time of death, a meaningful act such as reciting a poem, praying a prayer, playing a favorite song, or simply surrounding the loved one and holding hands in a minute of silence can have a profoundly impact on the now-grieving family. These are ways to honor the dead, but they are also ways to express grief in a healthy way. The doula helps the family recognize what can make a good ceremony to mark the passage of their loved one from this life.
Caring for the Body
Doulas can help the family care for the body after death. Many family members find that there is a healing sense of peace or closure found in caring for their own departed loved one. End-of-life doulas encourage and instruct the family in this sort of involvement.
Care for the body can include washing all or part of the body, changing clothes, closing their eyes and folding their hands, or simply covering them with a sheet or cloth. Additionally, this can be a time where the family can give a goodbye kiss or farewell squeeze of the hand.
Alternatively, the doula can stand in for the family when they do not want to be physically present or involved with handling the body after death. The doula can be present to oversee the hospice staff or funeral home’s handling of the deceased and ensure that things are done respectfully and with dignity.
After the death, the family will often get swept up in activity. They arrange the funeral, have the viewing and memorial services, receive condolences and casseroles. Relatives visit from out of town. The living room gets filled with flowers.
Even after these first few weeks, there is the reading of the will, estate matters to attend to, and tying up the loose ends of a life. Possessions kept, distributed to family members, or donated. There is time for grief, perhaps grief counseling. A new pattern of life without the deceased begins to emerge.
At this time the doula meets again with the family for reprocessing. This is not grief counseling, but rather a time to help the family come to understand the dying experience they have just gone through (p. 209).
In reprocessing, the doula invites the family to retell the experience in their own words. “As the family tells their story and begins giving it shape, the doulas can help mold it from their position as outsiders who also became participants right alongside the family.” (p. 210)
As this happens, the family can uncover trauma and pain as well as profoundly beautiful and joyful memories. The doula helps normalize these things, lessening the negative impact of emotional trauma and highlighting the moments they can hold on to and treasure. Doulas do this not as counselors or psychologists, but as those who have a story to tell of a truly meaningful shared experience.
Caring for the Dying is an important and helpful book for the young “end-of-life doula” movement. It defines the role in personal, human terms, setting the doula as an important link between the family and all the professionals surrounding them at the end of a life.
This is not to say that the doula is something less than a professional; rather, the aim is for more. In addition to a well-formed understanding of death and the dying process, the end-of-life doula helps the family discover peace and meaning by serving and guiding the family personally.
Bridging this gap provides incredible value for the dying and their families, and can set those left behind on a path towards healthy grief. And this value is being recognized within the professional communities of doctors and nurses, hospice and palliative care, chaplains and pastors. Many hospice centers are training their staff with the principles of doula care, and the specialized field of the doula approach to end-of-life care is rapidly growing.
Caring for the Dying serves as a popular-level introduction to the doula role, describing the need and illustrating the effect of end-of-life doula care through emotionally resonant stories. While not a training manual or textbook, the book does a good service in showing the range of care expected and the emotional resilience necessary to succeed. It’s a powerful invitation to the dying and their families to consider using a doula, as well as a call for more workers to join in the movement.