This blog post was previously published by Equity in Palliative Care Research Program on February 1, 2022.
By Charlotte Futcher
How I got here, as a social work student doing a practicum with the Equity in Palliative Approaches to Care (ePAC) research team, was deeply motivated by this question.
Previously, I believed a good death was what my Grandfather, aka Gramps, had when I was one of his primary caregivers at 17 years old. After observing his neglect in a palliative ward, such as untouched meals pushed aside and dehydration, my parents and I decided to move him into our home. When we took him out of the hospital, we were told his life expectancy was approximately 2 weeks. Instead, he continually surprised us with and throughout 16 beautifully vibrant months. I saw what a person-centered and individualized approach to care at the end of someone’s life could do.
I still believe care that upholds a person’s dignity and provides them with the comfort they request is a right at the end-of-life; however, I have come to realize how privileged, narrow, and judgemental my ideas of what constitutes a ‘good’ death were.
Back in 2015, when we took Gramps in, I witnessed a dying experience, relating to both the dying person and their surrounding caregivers, that is accessible for an elite few. From my Mum taking a leave from work and receiving Canada’s Compassionate Care Benefit to my Gramps having the savings to afford a hospital bed and mobile medical care, his situation at the end of his life was one of immense privilege. There were no barriers that led to added distress for Gramps or the people who loved him: nothing in the way of ensuring he was as comfortable and happy as possible, from custard for breakfast to nurses in and out of the house on his ‘bad’ days.
After he died in 2017, I went about studying something unrelated to end-of-life care, but my mind would wander to memories of caring for Gramps. Four years later, after numerous prompts to do so, I enrolled in and completed a death doula course. What first began as an interest in the many spiritual dimensions of dying and a privileged idea of the type of dying experience everyone wants turned into a curiosity around the systemic and societal dimensions of dying.
In the course, we spoke about how the demand for new end-of-life care services was predicted to increase due to the aging ‘baby boomer’ population. We were told by approximately 2030, 25% of the Canadian population will be at least 65 years of age. This statistic’s correlation to the growth in demand for death doulas is attributed to how many members of this population are predicted to have the desire and monetary means to make their dying experiences as comfortable and unique as they wish. In other words, it was explained that many ‘baby boomers’ will be able to buy idyllic and dignified deaths. Having entered the course with an interest in learning how to bring dignity and curated care to people at end–of–life, this explanation for resources becoming more novel and sought-after opened my eyes to social injustices around this form of care.
A ‘good’ death may look like being in the home of (chosen or biological) family members. It may look like having access to adequate pain killers for pain management, which many people cannot obtain due to stigmatization and discrimination. It may look like being able to stay in secure housing without facing obstacles such as who can visit and when. It may look like being able to practice cultural and spiritual rituals without barriers. It may look like not having to take down and pack up your tent in the morning, not to mention access to food and clean water.
A ‘good’ death is different for every single person and should be available and accessible for every single person. Speaking only to the situation in Canada, caused by systemic inequities and oppression, opportunity for everyone to die in this dignified and supported way is certainly not a reality.
There are still many populations facing systemic inequities due to matters (some intersecting) of racism, ableism, mental health stigma, sexual/gender discrimination and more that contribute to worse health outcomes and care from the existing institutional resources. Due to a variety of reasons, this discrimination has and does cause premature deaths for traditionally marginalized people which emphasizes that palliative care is not just for the end-of-life stage.
Working toward death with dignity for everyone does not begin with just looking at the end of someone’s life, it looks like imagining how to improve dignity, self-determination, care, and comfort throughout people’s whole life-course. A palliative approach aims to care for the whole person: their emotional, physical, and spiritual needs.
A ‘good’ life, with proper care and equal opportunities, is a part of a palliative approach to care… is a part of a ‘good’ death.
I am new to this field and have much to learn, both inside and outside of it. All I know now is I strive to see a future where death and community are linked back together: where everyone sees how important it is to ensure we can ALL live well in order to die better.
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