End-of-life doulas offer physical, emotional, spiritual and pragmatic support to individuals and families before, during and after death. But what does that really mean? Unless you’ve experienced the support of a death doula yourself, it can be hard to articulate exactly what we do. Much of our work is intuitive, responding to the needs and unique attributes of the people we serve. Our services vary from guiding you to prepare your end-of-life plans, to family caregiver support, to creating personal comfort plans, to vigiling with you and your loved ones through your final months and moments, to many more offerings.
I know curiosity about this role runs deep, as evidenced by the incredible turn out I’ve had for my Fireside Chats for Emerging Death Doulas (more information below), and my Meet the Death Doula presentations I co-host with local doula colleagues (there’s another session coming in the new year – stay tuned for more information!). Even mainstream publications like Readers Digest Canada see the value of death doulas. Recently, I was honoured to be interviewed about death doula work for their feature “A Planner’s Guide to Dying,” in their December Holiday edition. I was thrilled to see they recommend hiring a death doula as one of their top tips for preparing for end-of-life! This article isn’t yet available online, but I encourage you to seek out this edition at your local grocery store or news agent. There is a wealth of other end-of-life tips and heartfelt stories shared within.
Death doulas strive for visibility so we can expand our reach and serve as many families as possible. We are driven by the belief that everyone deserves quality care and compassion when they are ill or approaching end-of-life and beyond. To further shine a light on what death doulas do, I’m opening up my field notes to share 3 stories from the frontlines of my practice. With humility and gratitude for the opportunity to serve, here they are:
*Names and identifying information have been changed
1. Making the Most of Limited Time
Margaret’s elderly husband was recently admitted to long term care facility after living at home independently. He has since developed delirium and is extremely agitated, begging to return home. Margaret contacted me when she learned she would be permitted a brief in-person visit with her husband. She understood this may be the only visit she is allowed due to Covid-19 safety protocols. Margaret felt overwhelmed, unable to sort through the many things she needs to address with her spouse and his care providers in this brief window of time. Where should she start?
I asked Margaret what was most important to her and together, we made a to-do list. The top of that list: connect with her husband. We explored ways she could decrease her husband’s distress. Things like matching her breathing with his and slowing it down, offering physical touch, playing his favorite music, reading the newspaper or a cherished book. Margaret agreed, if the only outcome of their time together is her husband feeling soothed and safe, that would be a successful visit.
Other items on the list included getting a clear picture of her husband’s health status and prognosis (what to expect in the coming days and months). Margaret thought the doctors would recommend some treatments, and she felt the burden of making “the right decision” for her spouse. I encouraged her to focus on getting a clear picture of the quality of life her husband could expect after the treatment. With that information, Margaret could compare what she knows of her husband’s wishes against the likelihood of him attaining that function or quality of life after the treatment.
We talked about her husband completing a MOST form (or Margaret completing it on his behalf) with his doctors. This would allow him to define the level of care he wants ranging from every available intervention to prolong life, to comfort care only to allow a natural death. With no other advance directive or written record of his wishes AND with family members barred from visiting, there are few options to help make his wishes clear. The completed MOST form would speak for him if he could not speak for himself.
Finally, we talked about what Margaret needed to sustain herself through this emotional time. We did some breath work and a brief grounding exercise and decided to connect again in a couple of days.
2. Finding Peace by Giving Thanks
Angela is the primary family caregiver for her dad who has advanced brain cancer. They have a beautiful relationship and Angela is doing everything she can to enable her dad’s vision of his fitting death, though her caregiver duties are seemingly endless. There are so many practical tasks to discuss like organizing home care visits and meal planning, coordinating doctor’s appointments and communicating with friends and family. Angela feels like this precious time with her dad is passing her by. There is so much she wants to say, but she doesn’t know where to start and fears upsetting him by being too emotional.
I invited Angela to imagine at time near her own end-of-life. What she might want her own daughter to say to her? Angela imagined this scene and let flow beautiful words of love that honoured her mothering and the role-model she wants to be for her daughter. She realized she could give this same gift of validation and gratitude to her dad by having the courage to speak her heart. She also realized any sadness or emotion this conversation might bring would likely tether them more tightly together. It was an opportunity she didn’t want to miss.
I offered Angela a series of questions to help gather her thoughts and prepare for this moment with her dad.
3. Holding Space for the Unexpected
Mika is a new death doula just starting their practice who asked me to guide them through creating a comfort care plan. Their goal is to prepare for their future and to also be in integrity with themselves by doing the work they will soon be asking their own clients to do.
On the afternoon of our third session, Mika told me they had learned only moments before that a cousin had died suddenly. Deep breaths. I held space and supportive silence for Mika to just be, to just experience, and to listen inwardly for what they needed in our time together. Mika told me about their cousin and their special bond, but they seemed unsure of what else to do. I offered to lead us in a visualization to honour their cousin’s gifts and imagine her as her whole self, transitioning to her next manifestation. Together we created sacred space for Mika to hold themselves gently as they started their grief journey.
What fascinates me about the doula role is how differently each doula may respond to the above experiences. How might their unique qualities and talents inform the questions they ask and guidance they offer?
My approach reflects who I am, my strengths and passions. The questions I ask and the guidance I offer are firmly grounded in my training as a death doula with Douglas College, my graduate degree in Education, my years of experience as a frontline youth worker and health policy analyst, and my growing understanding of person-centred, trauma-informed care. When I distill my practice in to three simple words, warm, dynamic, and professional are what I strive to be. Similarly, I strive for that moment of connection when my unique qualities fit with the unique needs of an individual or family.
Therein lies the magic and the deep privilege of being of service as a death doula.
If you’d like to explore the many ways I might support you and your loved ones, please send me a message at firstname.lastname@example.org