A Good Death

“Death doula” is a new term for a long-standing custom. Death doulas are workers who provide non-medical support to the dying, caregivers, those diagnosed with a terminal illness, and those seeking information on death and dying, among others. Many death doulas subscribe to the Death Positive Movement, which encourages discussing death, honouring the wishes of the dying, and informing family and friends of end-of-life wishes.11“History of the Death Positive Movement.” The Order of a Good Death, https://www.orderofthegooddeath.com/history-of-death-positive-movement/. We invited death doulas working in the Greater Toronto Area and beyond to discuss their work, how it differentiates from the care already provided in hospitals and hospices, and what constitutes a good death. Respondents include Chrystal Toop, founder of Blackbird Medicines and the Indigenous Death Doula Mentorship Program; Rayne Foy-Vachon, founder of Winnipeg-based Dying to Help End of Life Services; independent death doula Sarah Bird; and Kayla Moryoussef, founder of Good Death Doula.

Rayne Foy-Vachon: I am a death doula. I am not a counsellor or a healthcare provider. I am a professional who offers support and companionship to people who are experiencing death and dying. I offer the dying the ability to bring choice, autonomy, and person-centred care into their dying process. My goal is to remove stigma and normalize death in our death-denying society. It is my role as a death doula to listen to those fears and give space for folks to discuss without judgment. I also help bring a focused and intuitive presence to the dying’s bedside, and I explain the signs and symptoms of the dying process.  

Supporting the dying looks like many different things; every person is unique in their needs and wishes. For example, I will assist in writing an advance care plan that will include health documents, ongoing discussions, values and beliefs, substitute decision makers, advanced directives, quality of life vs. quantity of life, medical and non-medical decisions. Pre-arranging and personalizing the celebration of life/funeral services and legacy projects (creating memorials with the dying person and loved ones). I will help create a document with contact information, passwords, and other pertinent information that loved ones would require at time of death and after.  

What if you were unable to dress, bathe, or toilet yourself—would you have concerns about your gender identity, expression, or physical appearance? For those who are part of the 2SLGBTQ+ community, there is a risk that you will not receive the care you want or deserve. I instruct my queer clients to be extremely specific with their instructions. Having an advance care plan will lessen the chance of dead-naming, use of wrong pronouns, and misgendering.  

Having loved ones continually surrounding a dying person can take an emotional toll on all of them. This is where a death doula comes in. I will give the dying person space to be with their thoughts and emotions. I have training in guided imagery, which is a relaxation technique that involves visualization. The dying focus on positive, peaceful, and relaxing images that, according to research, may help reduce pain and anxiety. I will provide bedside respite for the family/loved ones; anticipatory grief can be overwhelming and exhausting. 

RF-V: 2SLGBTQ+ community live with many barriers such as mistrust, stigmatizing and abusive language, misgendering, dead-naming, and transphobia within the healthcare system. My role as a queer death doula is to help reduce those barriers by assisting queer folks to navigate the healthcare system. I have 18+ years of working in healthcare and I follow the model of harm reduction and trauma-informed care. I will always respect my clients’ confidentiality regarding their sexual orientation and gender identity. I will help guide complex decisions and facilitate conversations with healthcare professionals in the care of the dying person. In death care the focus tends to be from the typical heteronormative family lens. I will educate service providers on behalf of the dying person by making sure any resources they recommend are 2SLGBTQ+ inclusive, train staff in diversity training, inclusive language, and working with non-traditional families. 

Kayla Moryoussef: I provide whole-self support—that means physical, psychological, social, and spiritual wellbeing. It’s understood that medical care teams tend directly to the physical, but our health care systems and expectations do not accommodate the remaining facets. This means you’re being treated as dying long before you’re dead. 

Whether my clients are dying or are young people coming to me for mortality coaching, what I do, firstly, is combat the common social understanding that death is traumatic. My philosophy is to focus on the fact that death is a natural, universal part of living, from which none of us are exempt. People need to know that death, in the Western world, need not be uniquely traumatic. 

KM: I am here to educate and empower clients and their loved ones, to give them some measure of control and choice in their end-of-life. I am a resource navigator; I put in place requests for last wishes, and help create their legacy. I also do what is called death planning: organize the details—from who is in the room to the smells, sights, tastes, and sounds that are present—around the active death, the last days and moments of a person’s life.  

My work entails active listening; sitting in silence; cultivating safe spaces; celebrating beauty; and insofar as is legal, “planning” this final great event of a person’s lifetime.

Chrystal Toop: Like many people with Boomer generation parents, I am looking at ways to prepare for my parents’ and loved ones’ deaths emotionally, mentally, and spiritually. Providing end-of-life support for me has looked different than most, I think, because it has not been about supporting individuals in their transition. For me, providing end-of-life support has been about bringing others into this death work realm, while illuminating options and resources. As an Anishinaabekwe, this work has included restorative justice; missing, murdered, Indigenous youth, women, 2Spirit people, men; LGBTQQIA+, safe spaces; trauma-informed care; and Indigenized harm reduction. 

My role as an Indigenous death worker is vastly different from the dominant ways end-of-life care is provided and discussed. I am a death worker when I am a birth doula. I am a death worker when I operate on the frontlines of social work. I am a death worker when I parent my children. Everything about First Nations, Inuit, and Métis end-of-life care is grounded in harm reduction to prevent the historic and ongoing systemic, genocidal destruction of my family, culture, stability, and security in the world. This work is more than a cool new business or outlook; it is the resistance against systemic oppression that continues each day that an Indigenous person dies trying to access health care or safety. 

We know Canada has committed genocide and continues to put Indigenous lives at risk for systemic, violent, premature, unnatural deaths. This is the reality for a First Nations woman like myself, and my children. I was at risk in the womb, walking this Earth walk, and the same is true for my kids, until the day each of us die.

CT: Dominant end-of-life care is focused on a transition from old age and a life lived, while my end-of-life care lens is focused on the fight for survival. The Indigenous Death Doula Mentorship Program was an idea formed to encourage others to take up this work. So many Indigenous community members are caregivers from a young age, fighting similar fights, and the pandemic created this overwhelming need for First Nations, Inuit, and Métis death workers. Generations of history has determined that more of our community members would die from diseases and afflictions like cancer, addictions, homelessness, displacement, neglect, and mental illness—manifesting from traumas endured. 

As a life circle doula, I have been cognizant of the importance of reclaiming traditional roles and ways of living and supporting community, which led me to reclaiming death rituals and teachings. The mentorship program was a way to serve those who were looking for opportunities to learn. This program became the first stepping stone to realize the Indigenous Death Doula Training, a course I designed as part of my social enterprise Blackbird Medicines.   

Blackbird Medicines has been my heart-work, born from an ambitious hope to embody the traditional roles I would have occupied, once upon a pre-colonization. A Storyteller and caregiver, I am grateful for the spaces and conversations I am invited to share and hold. 

Sarah Bird: My work focuses on caregiver support. When caregivers are well supported and empowered, they have access to a greater sense of purpose. My clients express that, not only are they better able to be present with their dying person, but they also feel more equipped to support their loved ones and themselves. 

What this looks like in practice is to first identify who the primary caregiver is for a dying person. I help them to assess their own needs, current supports that surround them, and to connect them with community resources. These conversations can take time and care, ensuring the client is leading and is given space to share what’s important to their loved one and themselves. This guides which resources/services will be appropriate for their unique needs. 

Having worked within the healthcare system for nearly two decades, I have witnessed how overwhelming it can be for caregivers to navigate. Working together to build the confidence needed to be able to advocate for the dying person at every stage is paramount. This might mean discussions on rights of the dying person, asking for support from their care team in interpreting medical information and what this means for their loved one, and knowing who to connect with to navigate complicated legal requirements (e.g., power of attorney). 

I often find myself facilitating difficult conversations. We base our conversations on the dying person’s autonomy and sovereignty and how we can ensure it be protected, that their wishes be known and respected, and that their caregiver be able to advocate on their behalf if and when it is needed. Impending death can be accompanied by many complex emotions, and because the focus is so often on the dying person, the caregiver's journey is often overlooked. By putting a special focus on the additional needs of the caregiver, I strive to ensure that they are heard and witnessed in their own journey, as they work through these complicated emotions alongside their dying loved one. 

Planning is a big part of the process. By walking the dying person and their caregivers through non-medical comfort plans, by supporting them in creating vigils, ceremonies, and legacy projects, the clients I walk alongside discuss feeling more prepared and less afraid of the end of life and what will come to pass.  

Support with the caregiver continues after their loved one has died, by offering tools and resources as they begin to process their grief and reconceptualize their lives without their beloved person. We sit together. We witness their grief move and change and explore what their unique journey feels like for them. I listen and hold space. I help them to find answers within themselves as they come to terms with the idea that grief never truly goes away, that it softens over time.

SB: Care teams, in their various forms, are exceptional; however, our healthcare system is strained, and our teams have extremely heavy caseloads, which may limit their capacities. Death doulas have the gift of time, and because of this, we get to know our clients, their needs, their hopes, and their limitations in depth. We work alongside (and never replace) medical care, social work, and family—creating a human-centric approach that is highly personalized and based on compassion and empathy. 

 SB: During and after the death of a loved one, there are many secondary losses—loss of income and assets, loss of childcare, loss of identity, loss of sexual partner, loss of shared memories/what you envisioned your future to be, loss of security and safety, loss of a witness to your life. When society does not take these various aspects of loss into account, we disenfranchise our grief, compound it, and make it an even more isolating experience. 

SB: I take a very direct (yet gentle) and honest (with empathy) approach to death, dying, and grief. Discussions of death and grief shouldn’t be avoided and/or postponed until it is happening in real time; important conversations don't need to hide behind euphemism. Only when we meet death head on, unafraid and unashamed to speak its name, can we do our best to be open to it, to prepare for it, to come to terms with it, and embrace it as a fully natural, fully human part of our experience.