As we enter the end stages of life, palliative and end-of-life care become more essential to achieve an approximation of what one might deem a ‘good’ death. Sociologist Allan Kellehear identifies the need to shift palliative care from its current practices wherein psychosocial care only begins at the onset of a dying person’s challenges towards a communal public health approach wherein everyone within a community is engaged and supports palliative care through the formation of a compassionate city.
In practice, there have been several case studies that show compassionate communities have been successful in changing how a society handles death (see Supplementary Note for details), often through embedding volunteer engagement within broader public education and community development efforts. Yet reading through these, one question lingers:
Who is being relied upon to do the bulk of the unpaid volunteer labour needed to ensure a thriving compassionate community?
While the success of these compassionate community programmes demonstrate their potential in supporting community palliative care services, few scholars explicitly acknowledge who is volunteering for these programmes and initiatives (even as Kellehear supports regular evaluation). Studies have shown that a majority of volunteers in the palliative care sector are women, and even professional palliative care clinicians tend to be women.
Might such oversight be explained by implicit traditional gender norms? In contrast, a feminist perspective on care work more broadly has consistently drawn attention to and examined women’s disproportionate involvement in unpaid care work within the family and community, advocating for gender equality in both paid and unpaid labour.
While it seems Kellehear intends that everyone in a community ought to participate in compassionate community programs that utilize volunteer labour, the gender division of labour in this regard seems to be a topic worth broaching.
This is especially so in light of the potential for ‘compulsory altruism’ that can develop when gendered identities and norms intersect with the erosion or lack of public supports. Inequitable divisions of care might even conflict with the ideals of a compassionate community, when the work needed to develop and maintain their success may come at the expense of women’s well-being or agency.
If compassionate community scholars and advocates inadvertently gloss over the gendered role expectations associated with traditional ideologies, this may result in a disservice (and potential harm) towards women. To avoid this, scholars and advocates alike benefit from openly contending with these gendered role expectations and acknowledge them both in conceptualizing and implementing compassionate community initiatives.
Thomas Klie, a German scholar, characterizes compassionate community programs as having a worrisome potential to revitalize the traditional gender role of women as caretakers. And these concerns do not appear to be unfounded. An overreliance on women in developing and maintaining compassionate community programs characterized by volunteer caregiving can appear to align with traditionalist gendered ideology around care, even when this labour is appreciated by dying persons and their families or when the volunteering is motivated by deeply internalized gendered identities.
How can compassionate communities resist capitalizing on traditional gendered care roles, even as those in the movement are not actively espousing patriarchal sentiments? How might we go about forging successful compassionate communities without relying disproportionately on women or reinforcing the traditional gendered norms and divisions of unpaid care work?
These are some conversations we need to start having. Doing so might require us to wholly reconceptualize paid labour and our daily lives. One way might be to prompt broader public conversations of shifting from “life-around-work” (where one’s daily life centres around their paid labour) to a “work-around-life” (where one de-centres their paid labour and instead performs paid labour around daily life). The latter conceptualization might open space for broader participation in volunteerism and unpaid/non-paid labour.
Such conversations could help shift traditional gender norms, ideally prompting greater gender equality in the palliative care sector of which these compassionate communities are a part. Alternatively, universal basic income (UBI) initiatives could open space for conversations regarding gender and care work, spurring a reconceptualization of the care work labour sector in the wake of successful UBIs that pivots towards greater volunteerism among the general public.
Whereas compassionate communities have been successful in supporting existing community institutions and networks, reflection is needed as to exactly how the success of these models comes about. Taking a critical lens in this regard allows us to consider the possibility that this concept relies on a subtle, implicit appeal to traditional gender norms that may go otherwise unnoticed.
A critical lens also allows us to consider that even use of the term ‘compassion’ might obscure subtle appeals to traditional gender norms, morphing the conventional understanding of the word into an appeal to volunteering that relies on traditional gender roles around care. In advocating for and conceptualizing compassionate communities, engaging with a critical lens helps us pay greater attention to those who are available or willing to take on these unpaid care work roles (and why). Otherwise, in championing this and other innovative care initiatives, we risk perpetuating the asymmetrical reliance on women.
About the Author
William Pribula (he/him) is an undergraduate student at the University of Manitoba pursuing a BA (Honours) in Philosophy and Sociology. His areas of interest include qualitative methodologies of research, social institutions and how individuals utilize them, and social psychological perspectives to examine non-traditional paid labour. His recent interest in death and dying and end-of-life care was spurred by his involvement in an investigation led by Dr. Laura Funk examining policies discussing dying at home in Canada. Recently, he was awarded the University of Manitoba Philosophy Department’s Outstanding Undergraduate Award. For further inquiries, he can be contacted at email@example.com, or alternatively at firstname.lastname@example.org.
There are a number of successful case studies that have proven compassionate communities to be a fruitful initiative for communities to undertake. One prominent example is in Kerala, India, which supports local community volunteers through specialized training from a neighbourhood network to identify and address nonmedical issues associated with dying. Other examples include a volunteer befriending and companionship network in in Shropshire, England to reduce social isolation among dying persons; a volunteer training course in ‘last aid’ care in Landeck, Austria ; and a ‘good neighbour’ program in Limerick, Ireland, in which volunteers activate community members to provide both social and practical help for dying persons and their families.
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