Important new book published
All across the world, women spend disproportionately more time doing care work with little to no remuneration. (Sabin Muzaffar, 2016)
Newly published Handbook on End of Life Care
David Clarke and Anne-Marie Samuels edited volume, Research Handbook on End of Life Care and Society, has just been published. This free open access book provides an accessible overview of research on palliative and end of life care in its social context. Over 35 chapters it examines key theories, methods and research findings, highlighting the role that social science and public health perspectives can play in reimagining how we support death and dying globally. Covering issues such as culture, inequalities and policy interventions to improve end of life care it’s definitely one to put on your reading list. The link between evidence, practice and policy will appeal to researchers, students, clinicians and policy makers working in this space.
We were fortunate to be invited to contribute two chapters to the book. One of these, led by Merryn, with support from Lisa Williams, Tessa Morgan and Julia Slark, explores the gendered nature of unpaid care work at end of life. The chapter begins by reflecting on the invisibility of gender in palliative care research, practice and policy, arguing that:
There is a certain irony in the lack of attention afforded to gender in palliative care given that care is a deeply gendered concept. Yet, like many social processes which shape our everyday experiences, patriarchal power relations which equate care with ‘women's work’ are so deeply embedded within the structures of contemporary societies as to be invisible. We rarely see the pervasive role gender plays in determining how we dress, eat, work, and play. It is therefore unsurprising that we do not see its influence on the way we care for our dying.
The care work undertaken by family – both of choice and of origin – is typically referred to as ‘caregiving’ or ‘caring’ and is performed by ‘carers’. However, in this chapter we argue for a shift to talking about ‘unpaid care work’. This is our attempt to move away from a situation where the fact that this is work is hidden by shared societal understandings of care as a moral obligation, undertaken through altruism and a natural, feminine quality.
Our discussion defines key terms used in this space, before exploring Indigenous understandings of gender and identifying who undertakes, and who benefits from, unpaid care work. We call out the heteronormative and gender blind bias within current palliative and end of life care literature, arguing that this continues to disadvantage anyone who does not identify as a cis-gender man. We also consider unpaid care work within Rainbow Communities, highlighting the urgent need to tackle the homophobia and transphobia that community members report at end of life.
In concluding, we call for members of the palliative care community to commit to challenging the ongoing gender blindness of research and policy. At the very least, we should all be advocating for gender-sensitive policy, gender-sensitive clinical training, equitable treatment for members of Rainbow Communities, and fair economic compensation for unpaid care workers.