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  • Sue Phillips

The Work of Critical Illness/End of Life Doulas

Updated: Jun 12, 2022

What is an end of life doula? It’s a question I’ve been asked many, many times, and one that I’m sure I’ll continue to hear for as long as I continue with this line of work.

It’s understandable given that the rise in the prevalence of death doulas in Canada is a relatively new phenomenon, and one that a lot of people are still very unfamiliar with.

That initial question inevitably leads to others—What is it that you do, exactly? Why is hiring a death doula something I should think about and when should I start thinking about it? How is what you do different from hospice care?—the list goes on from there. But, despite receiving the same questions as often as I do, it’s never something that I will get tired of talking about.

First and foremost, I love my work, but, more importantly, education is a huge component of what we do. Because of that simple fact, sharing the knowledge that I have by continually providing answers to those who are unfamiliar with what it is that we do will always feel like a privilege, rather than a burden.

With that in mind, I’d like to use this post as an opportunity to speak about my role, provide answers to the questions I’m asked regularly, and provide some resources for those who wish to continue learning. So, that being said…

What is an End of Life Doula?

Put simply, a critical illness / end of life doula is here to empower and advocate for people during their life transitions and to educate those preparing for their final passage, all the way from diagnosis to death. We are here to guide you and your family on what you can expect each step of the way, and to create a safe, judgement free space where you can voice your thoughts, concerns, and questions. I am strongly of the opinion that every person deserves to be able to pass on their own terms, as is every member of my industry, and it is my honor to ensure that every individual I care for has their final wishes respected.

An end of life doula recognizes that every person has an entirely unique set of needs, beliefs, traditions, and rituals, and we will do everything within our power to ensure that these are taken into consideration and honored by everyone within their support networks. Our approach to compassionate care is holistic, individual, and person-centric in order to make sure that these unique needs are consistently met. As illness, death and dying are often difficult topics to speak openly and honestly about, both for the individual who is facing their transition and their loved ones, it is also our responsibility to act as a beacon of courage by facilitating conversations before the need to have them has already passed.

As I mentioned, education is an incredibly significant component of the work that we do— death literacy is not a familiar term for most people, but it’s something we pride ourselves on spreading through the services we provide. Olga Nikolajev, a mentor and founder of the Death Doula Ontario Network, has succinctly defined death literacy as “having the experience, skills, and knowledge that enable all of us to plan for and gain access to end of life care support and services”, and, as educators, it is our responsibility to share that literacy with the individuals we care for as well as their support networks. In spreading the knowledge we have come to possess (through required training), our aim is to empower those we care for to be able to make informed, confident decisions surrounding their own transitions.

The range of services offered by an end of life doula may change from person to person, and may also change from doula to doula, but a few of the most common ones include:

  • Advance Care Planning (ACP) Facilitation — a doula would guide an individual through a process of reflection and communication that prompts the consideration of personal values, learning about individual treatment options, making decisions surrounding who will speak for them should they no longer be able to speak for themselves, speaking openly about their final wishes with their support network and appointed decision maker, and finally documenting those wishes.

  • Advocacy Support— we would help an individual navigate the healthcare system, gain a clear understanding of their options, ensure that they have a say in any decisions that will affect them, create opportunities for discussion with loved ones, and assist with post-death support

  • Caregiver Respite—we can provide an opportunity for a primary caregiver to take a much needed break by taking on their non-medical responsibilities for a time

  • Companioning and Vigil Attendance—being present at the bedside of the dying, and being there to accompany that person from life to death

  • The officiation of funeral or celebration of life proceedings

  • Legacy Project Facilitation— we aid in the consideration of what an individual would like to leave behind after their passing

  • The facilitation of community groups

Why is This Work Important?

Well, we recognize a need for a different type of conversation surrounding death and dying. At some point in recent history, death became a taboo subject. Where home deaths and community support were once commonplace, we’ve now become more hands-off— death has taken on a kind of mystery and we’ve come to fear it as a direct result. We’ve introduced so many terms to refer to death that speaking about it directly has become something that we tend to avoid.

Our vision is to help people recognize that birth, dying, death, and bereavement are a fundamental aspect of the human experience⁠— and we can learn to be less fearful. We can learn to live our lives fully by accepting the inevitability of death. It doesn’t need to be something scary and we can help to do away with that fear through education and open communication.

One of my favourite ways to start an open dialogue about death is to facilitate or participate in a Death Cafe. These events, most hosted virtually over the last few pandemic years, are not meant to be support groups, nor are they meant to be grief or bereavement groups, they are meant to act as an open forum in which participants can talk openly and ask questions about death. The conversations are not structured, they are allowed to flow freely in order to provide the opportunity for people to share stories, learn from, and empower each other in a judgement free space. Since their inception, these Death Cafes have spread to, and been hosted in, over 65 countries.

In addition to shifting people’s mindset surrounding death, end of life doulas can actually help to fill certain gaps in the healthcare system around caring for patients who may need a greater level of emotional support than they would be receiving otherwise. Providing emotional support is not necessarily the responsibility of a healthcare practitioner, but it is absolutely the responsibility of a doula. Because our approach to end of life care is so individual, it allows us to provide a different type of dedication to a single family, supporting both patients and their support network simultaneously.

There has also been a noted rise in the prevalence of end of life doulas in Canada’s indigenous communities. Some indigenous doula networks have even gone so far as to develop youth mentorship programs in order to equip their communities’ young people with the skills to help others deal with grief and loss. Many individuals within these communities have a different relationship with death that is rooted in their own traditions— some may wish to return to their own communities at the end of their lives, but, this is not always possible, especially given our current situation. Indigenous doulas are highly specialized and are able to respect and adhere to different communities’ specific traditional practices in a way that traditional healthcare workers simply are not able to.

Because the nature of our work is complex, multi-faceted, and often difficult, it’s not easy to encapsulate what it is that we “do” in a few sentences, which is why I am honored to be able to continue to educate people about the type of care we can provide. Illness and death does not need to be a taboo for any longer than it already has been, and it is my mission, as well as the mission of every end of life doula, to reframe the way we think of death and dying, and to provide the best possible individualized care to those who need it.

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