Shape-Shifting as an End-of-Life Doula During COVID

— We’re not inclined to sit idly as the world suffers

(Originally published by MedPage Today on December 3, 2021)

A doula is a non-medical care provider who supports people through intense times, such as birth and/or death, complementing any available healthcare services. Humans have assisted other humans through these complex thresholds since, well, always. The doula role during birth was formalized (with training programs offering certificates) in the 1990s. A trained doula’s presence during the end of life, however, has been a more recent development over the past decade or so. Although doula services vary somewhat depending on gifts, strengths, and interests, doulas focus mainly on the tasks of planning, preparing, and processing. During COVID-19, being an end-of-life doula has taken on an entirely new meaning.

What Type of Care and Support Do Doulas Provide?

Planning

Planning support can include advance care forms, such as directives and supplemental questionnaires. A doula will not make any medical or legal recommendations regarding specific decisions, though. Instead, we encourage clients to have conversations with their doctor or lawyer, and we offer to brainstorm questions together before those appointments. Doulas promote informed consent. We want to ensure clients have all the information they need concerning pre/post-death care, and to make their best choices in regard to living well during the time they have left. Additionally, details like scheduling appointments and visits as well as organizing meal deliveries and pet walking can be arduous alongside the emotional, exhausting journey at life’s end. Doulas can manage some of the minutiae so loved ones can be more present at the bedside. To aid in the process of releasing one’s earthly grasp, a doula might assist with “death cleaning” and/or bequeathing treasured items.

Preparing

Preparing includes setting up each client’s space and natural network of friends and family members for optimal living and dying (vigil) experiences — with contingency plans, of course. Doulas connect clients to beneficial resources when services fall outside of our role and scope. We research what is available in our local community and have a trusty directory list at the ready. We gently remind clients: It often feels “too early” until it’s too late, in terms of accepting hospice care, checking off bucket list items, or expressing what they hold deeply.

Processing

Doulas are story-catchers. We listen with sincerity and kindness. Many clients spend time reminiscing as time grows short. They appreciate invitations to vent and lament to someone who will not attempt to cheer them up or minimize their concerns. They want to reflect on memories, hardships, joys, and patterns of behavior. They might want to capture some of their stories in a more lasting form — legacy projects. Doulas help design customized options that can include audio or video recordings, a scrapbook with photos, a t-shirt quilt, artwork, or another type of gift that reflects the uniqueness of each particular person.

Pandemic Pressure

COVID-19 has thrust our undeniable mortality into our collective awareness. Like many people, doulas have needed to adapt creatively to meet the growing need. In the month leading up to COVID-19 reaching our shores, I was visiting with a family facing loss. I provided respite to the partner while assisting my client with creating keepsakes for their children. We were already facing challenges related to this client’s disease progression, so when safety protocols kept me away, everything changed. I continued my phone calls with the partner, but it was far from ideal. Honestly, I felt helpless and wished I could have done more. Around this same time, many hospices put volunteers on hold to minimize the risk of infection, further isolating people during vulnerable periods.

While we are skilled at “sitting on our hands” when the moment calls for it, such as while keeping vigil during active dying, doulas are not inclined to sit idly as the world suffers. During lockdowns, some of our work shifted to virtual platforms when circumstances allowed, depending on the cognition and energy level of our clients, their interest in that kind of connection, and internet bandwidth. Video visits have been a lifeline for many. This led me to wonder, how else could I provide support during this time rife with loneliness?

Along with several colleagues, I helped launch an IRB-approved research project focused on pandemic grief. Our StoryListening Study is inspired by research on storytelling during early bereavement with healthcare surrogates. We are inviting people who have endured a loss during the pandemic (caused by COVID-19 or inevitably impacted by it), including clinicians, affected staff, friends, or family members to share their grief story with a trained StoryListening Doula via telehealth. As a StoryListening Doula, I do not direct or reframe the participant’s experience. I invite. I allow. I am an ally, meaning I walk alongside, utilizing silence often and mirroring back what I am hearing to deepen or clarify the exploration.

I feel honored to bear witness to struggle, stress, and resilience as people integrate a cataclysmic change and/or compounding losses. I am present as people sift through remnants of a broken heart or an overwhelmed psyche to perhaps find glimpses of hope, pride, and even meaning. While these stories are often heavy and emotional, they are equally inspiring and awe inducing. Sharing these tender memories might help illuminate a person’s inner truth and sources of strength.

I have been able to rejoin a few clients in person more recently, which is a welcome advancement, yet my face is doubly covered and this undoubtedly affects our ability to communicate. As we dream of the days beyond the pandemic, I anticipate some of these newer practices will persist. We will likely have hybrid options available — virtual for those who prefer it or who cannot easily access in-person care and face-to-face for others. Regardless, doulas will carry on with our work of assisting others as they face the hardest things, morphing as needed with steadfast dedication.

Francesca Lynn Arnoldy is a community doula and the course developer of the University of Vermont’s End-of-Life Doula Professional Certificate Programs, a researcher with the Vermont Conversation Lab, and a hospice volunteer. She is the author of two books, Cultivating the Doula Heart: Essentials of Compassionate Care and Map of Memory Lane.

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