The next few months we’ll be highlighting authors who are in the December 2022 issue of Culture, Medicine, and Psychiatry.
Dr. Ronita Mahilall is a PhD at Stellenbosch University, the CEO of St Luke’s Combined Hospices and a Research Fellow at NIH, Clinical Centre, Bethesda, Maryland, USA.
Professor Leslie Swartz is a Distinguished Professor of Psychology at Stellenbosch University and Editor-in-Chief at both the Scandinavian Journal of Disability Research and the South African Journal of Science.
What is your article “‘I am Dying a Slow Death of White Guilt’: Spiritual Carers in a South African Hospice Navigate Issues of Race and Cultural Diversity” about?
This article focuses on the complex and painful question of whiteness in relation to spiritual care in a diverse country. We show that volunteer spiritual counsellors working at a hospice in Cape Town, South Africa are acutely aware of and sensitive to issues of diversity and privilege when engaging with clients from a range of backgrounds. Though South Africa has been a nonracial democracy since 1994, the long shadow of apartheid and continuing inequality profoundly affect contemporary palliative care. Our participants discussed the ways in which they work to create common ground and inclusion, but also how they acknowledge and continue to struggle with challenges related to difference and privilege. In health care work, cultural competence is commonly trumpeted as the solution to working with difference and inequality; our participants show that the issues are not just questions of competence or knowledge but include deeply felt emotional responses to inequality.
Tell us a little bit about yourself and your research interests.
Ronita Mahilall: I am a social worker by training and my career trajectory focused on health and disability. I am the Chief Exec Office of St Luke’s Combined Hospices (SLCH) and came to this work with an established and personal interest in spirituality. Reviewing the palliative care programmes and interventions that are offered by the Inter-Disciplinary Team (IDT) at SLCH, I have noted a significant absence of formal guidelines that shape spiritual care interventions. For a long time in my organization there was a felt need to develop a national spiritual care curriculum which I learned from many discussions with members of the IDT, and with hospice management. This led me to ask the questions: what are the current spiritual care practices within hospice palliative care settings in SA? What are the spiritual care training needs of hospices in SA? Is there a need to develop a national curriculum for spiritual care intervention? To ask those questions, I needed to establish if there is in fact an appetite, wider than expressed at SLCH, for such a curriculum.
Leslie Swartz: I have spent much of my career thinking about the politics of culture and mental health, and about access to services and participation by people who are marginalized. One of the first articles I ever published, in 1985, was on race, politics, and mental health care in apartheid South Africa – this was my first publication in Culture, Medicine and Psychiatry. There is for me a direct line from that publication of 37 years ago to this article, in which we show that the concerns I raised in the apartheid context have not magically disappeared with the end of apartheid. For me, one thing which tends to distinguish South African mental health researchers from those from countries in the global north, is how embedded we are in thinking about racial and class privilege and how this affects every aspect of our work, including work we do to change things for the better
What drew you to this project?
Ronita Mahilall: My fascination with spirituality was heightened after the loss of my beloved husband and son in 2007; five months apart from each other. While they did not suffer from any longstanding terminal illness, having experienced such deep losses left me questioning life, and death, and the after-death phenomenon. Being a devout Hindu, I am also a believer in reincarnation; yet I found that religion alone did not provide me with the broader existential answers I was seeking. With that as a backdrop and having joined St Luke’s Combined Hospices (SLCH) as CEO, I was introduced more meaningfully to palliative care work, and more in-depth to the spiritual care services offered. I was struck by the scale and scope of the spiritual care services on offer. I was somewhat saddened that, as I and others saw it, spiritual care was not recognised and prioritised as it deserved to be. I was impressed by the work of the spiritual care team at SLCH, and by the spiritual care services provided by other hospices in the Western Cape, and hospices throughout SA. I became interested in questions of why spiritual care services were not given the prominence and recognition that spiritual carers and others in my organization believed they deserved, as part of the overall palliative care service package. Through this research project, I set out to understand how spiritual care is practiced in hospices in SA and crucially if there is a need for a national spiritual care training curriculum. This was accomplished through a three-tiered study.
I was grateful to have in Leslie Swartz a supervisor who is not only an accomplished academic but someone who has an intimate knowledge and firsthand experience with and of death, dying and issues of palliative care and spirituality. Under his mentorship and guidance not only did I grow as an academic, but I also grew emotionally.
Leslie Swartz: This paper comes out of the PhD work of Ronita Mahilall, the first author. Ronita is CEO of the largest hospice organization in Cape Town. I became interested in palliative care through my experiences caring for my mother while she was dying. I have described these experiences in my memoir How I lost my mother (Wits University Press, 2021) – the hospice which Ronita heads was central in helping my family through this process, and after my mother died, I started doing bits of work for the hospice as a way of trying to pay back. Part of this was agreeing to supervise Ronita’s PhD. I honestly did not realise when I started working with Ronita that our work together would lead me back to considering the same issues of privilege and exclusion in health and social care which have preoccupied me throughout my career. I was very lucky to work with Ronita on this.
What was one of the most interesting findings?
Ronita Mahilall: Complex issues of privilege and power, and the emotional effects of these, do not disappear – they are with us always. We need to continually shine a light on these issues and unpack them as they present themselves.
What are you reading, listening to, and/or watching right now?
Ronita Mahilall: Alice in Wonderland by Lewis Carroll. It’s my 8th read. I love how I take away something different each time I read it. Reading it now with the hindsight of my PhD work is almost like a spiritual journey to a form of wisdom and understanding and more critically I realize that my work on this subject is not over yet. I have accepted an offer to undertake a 2-year post-doctoral fellowship at National Institutes of Health, Clinical Center (NIH), Bethesda, USA where I seek to advance my work on this subject. This takes place in December 2022.
Leslie Swartz: I have just started following a wonderful podcast called The Academic Citizen, curated by two South African academics, Nosipho Mngomezulu and Mehita Iqani (available on Apple Podcasts and elsewhere) – a fabulous example of science communication and centered academic citizenship – well worth checking out!
If there was one takeaway or action point you hope people will get from your work, what would it be?
Ronita Mahilall: Never think that difficult social problems are ‘solved’- everything is a complex and challenging work in progress!
Thank you for your time!
Other places to connect:
St. Luke’s Combined Hospice