Blog written by Sarah Farr
As a practicing end-of-life doula in Toronto, Canada, I have spent the past 9 years working alongside individuals and families as they navigate the end of life. Over that time, I have witnessed the difference this kind of support can make—not only for the person who is dying, but for the people who love and care for them.
It was this experience that led me to base my dissertation, undertaken as part of the End of Life Studies MSc at the University of Glasgow, on a question I felt needed much more attention: What is the experience of families who engage with an End-of-Life Doula?
End-of-life doulas are part of an emerging field of care that provides individualized and flexible support to people approaching the end of life, as well as to their families and friends. Their work can complement existing health and social care services, particularly when formal services are limited or when families need a different kind of support.
Yet, despite growing interest in end-of-life doulas, there remains relatively little empirical research examining what this support means to the people who receive it.
I wanted to listen to those experiences.
Humanizing the experience of dying
The idea of humanizing the experience of end-of-life care became an important thread throughout my master’s research. It also became the foundation for an article I recently published with Dr. Marian Krawczyk, whom I had the privilege to work with during my studies at the University of Glasgow. Our paper, “It’s humanized the experience for me”: Understanding the role of end-of-life doulas from the perspective of those they support, builds on this research and examines more closely what end-of-life doulas contribute to the experiences of those they support. Thirty-two participants completed my anonymous online survey and 8 took part in follow-up semi-structured interviews.
One finding that stood out was that end-of-life doulas support does not necessarily begin when someone is actively dying. Participants described engaging with doulas around ageing, dementia, caregiving, advance care planning and preparation for death. There was also significant involvement around Medical Assistance in Dying (MAiD), with participants describing both practical and emotional support.
But beyond the tasks and activities, another dimension of end-of-life doula care emerged: the humanizing of the experience.
End-of-life care can easily become dominated by appointments, diagnoses, medications, procedures and healthcare systems. These things are essential, but they do not capture everything that a person or family is experiencing.
Dying is also profoundly human.
It involves fear and uncertainty, love and exhaustion, grief and hope. It involves relationships, memories, difficult decisions and the need to make sense of what is happening.
This is where I believe end-of-life doulas can make an important contribution.
The significance of small things
The interviews in my research perhaps offered the clearest insight into what humanizing care can look like.
An end-of-life doula may sit and listen. They may make a cup of tea, help a family member understand what is happening, create space for a difficult conversation, or simply remain present when there are no easy answers.
These actions can appear small. They may never be documented in a care plan or captured by a conventional measure of healthcare.
Yet they can profoundly affect how a family experiences the end of life.
One participant described their experience this way:
“It humanized the experience for me. And I think it is an honour to be present, and I do think that the doula really helped me be present, not just physically […] but also emotionally to stay grounded. To have somebody who was looking after me so I could look after him.”
They went on to describe the doula reminding them to have a cup of tea, to go to bed early, and to attend to their own needs.
Those small acts mattered.
They helped the participant remain present—not only physically, but emotionally. They were a reminder that while someone was dying, the people around them were still living, feeling, worrying and needing care themselves.
Perhaps this is one of the most important ways end-of-life doulas humanize end-of-life care: by seeing the person and the family beyond the illness, diagnosis or dying process.
Why this matters
As the field of end-of-life doulas continues to grow, we need research that asks not only what doulas believe they provide, but what families experience and need.
My research is one small contribution to that growing evidence base. It suggests that end-of-life doula support can begin well before the final days of life and can provide care to the wider family as they navigate the emotional, practical and relational realities of dying.
But perhaps the most important lesson for me has been a simple one.
Humanizing end-of-life care does not always require a large intervention.
Sometimes it means listening.
Sometimes it means sitting beside someone.
Sometimes it means answering a question they were afraid to ask, creating space for a difficult conversation, or reminding an exhausted caregiver to eat, rest or have a cup of tea.
And sometimes, it simply means being there.
These moments may seem small, but they can change how people experience one of the most difficult times in their lives.
For me, that is at the heart of end-of-life doula care: not only helping people navigate dying but helping them remain human within it.
And perhaps those are the moments families remember most.
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Biography
Sarah Farr is a practicing end-of-life doula and co-founder of Wishstone, a private practice based in Toronto, Canada. She graduated in 2023 with a MSc in End-of-Life Studies. Sarah is a founding member of the End-of-Life Doula International Research Group and a member of the Global End of Life Doula Alliance Network. She also serves on the board of the End-of-Life Doula Association of Canada