Palliative care, or end-of-life care as it is commonly known, should also include spiritual care, argue Ronita Mahilall (doctoral student in the Faculty of Arts and Social Sciences) & Prof Leslie Swartz (Department of Psychology) in an opinion piece published by the Mail & Guardian (5 July).
Ronita Mahilall & Leslie Swartz*
Palliative care, or end-of-life care as it is commonly known, is gaining momentum in South Africa. Spiritual care is slowly being recognised as an important component of palliative care and hospice work. Spirituality is particularly important in Africa, but, ironically, it is the most neglected and non-prioritised pillar of palliative care on our continent. Priority is given to the medical component of palliative care, as it rightfully should be, as a central aim of palliative care is to provide pain relief and symptoms control. The other two pillars of palliative care – psychosocial and bereavement care – are prioritised next.
Spiritual care, largely for resource reasons, tends to be neglected. Where spiritual care is offered it is commonly through the use of community resources such as volunteers and Non-Governmental Organizations. Most African countries cannot afford a fully professionalised palliative care service as is offered in the Global North, nor is it clear in the African context that a fully professionalised service would necessarily provide the best and most appropriate care.
Resource constraints are significant stumbling blocks to holistic palliative care. Our research has found that in South Africa most spiritual care services are provided by volunteers who come from varied academic, cultural, and socio-economic backgrounds. There appears to be no clear entry requirement to becoming a spiritual care worker and most of the work is learnt through experience, through passed-down family traditions, and on-the-job training and mentoring by professionals such as nurses and social workers, and by faith-based organisations.
The picture in the Global North contrasts sharply with South Africa, as most of the spiritual care workers there have some health care background or advanced formal training in religion or chaplaincy before becoming a spiritual care worker. In many countries in the Global North, there is a credentialed curriculum in spiritual care. South Africa's cultural, linguistic, and racial diversities, coupled with the enduring consequence of centuries of colonisation and apartheid, and the current context of vast inequality, violence, and governance challenges, call into question the wisdom of importing foreign or 'one-size-fits-all' models of spiritual care.
The COVID-19 pandemic has shone another spotlight on the need for spiritual care services and palliative care. Evidence is emerging that death rates from the pandemic may tend to mirror and reproduce other inequalities in our society, as is the case with other causes of death. Families are left traumatised and may feel emotionally and spiritually at sea. In some cases, the timespan from diagnosis to death is so rapid that there is no time left to offer palliative care and support to the patients and their families.
The time and need for contextually appropriate spiritual care interventions could not be more acutely felt than now. Many people have begun looking within for answers and healing and strength. Ironically in a time of enforced social distancing, there are signs that family bonds may be rekindled, and neighbourliness reignited in the face of a common enemy. Just as the virus kills and drives people apart, there may be an opportunity here for a focus on care, community, and spirituality to be renewed.
Ubuntu (denoting humanity towards others in the context of reciprocity in care relationships), while not the same as spirituality as conventionally understood, arguably may have overlapping implications within health care contexts. Health care which takes Ubuntu and spirituality seriously provides care not only to reduce physical pain and discomfort in patients, but to also care for them holistically. Hospices in South Africa, which largely lead palliative care work, see the value of spiritual care services in the treatment care plans and outcomes for their terminally ill patients and their families. One example is the St Luke's Combined Hospices, a well-established hospice in the Western Cape, which has been offering palliative care in Cape Town for over 40 years.
Our research shows that throughout South Africa, hospice personnel argued for the importance of spirituality as part of holistic palliative care, rooted in the beliefs and traditions of the wide range of patients assisted by hospices. They also highlighted a need for formal training in spiritual care. A key component of this training should be a flexibility and openness to the challenges and opportunities of diversity, with due regard to the demands and pressures of the broader social context. Part of the wish for formal training, we suggest, is based on the fact that spiritual care can so often be overlooked or ignored in the face of other demands (such as the need for good pain management).
Financial constraints and the dearth of skilled spiritual care workers to provide training, unsurprisingly, were mentioned as key barriers, and cannot be ignored nor underestimated. Without funding, the greatest of plans and the best intentions of improved patient care outcomes become largely unfulfilled dreams. Alongside this is the imperative to recognise and indeed celebrate the importance of spirituality to life, health, and illness in South Africa, and, indeed, to processes of dying and mourning.
Spiritual care in palliative care is not just for the dying, though their needs are, and should be, central, but also for those who survive, and part of the work towards a more caring society in general. The fact that spirituality is hard to define and is experienced and enacted in so many different ways in our society, should not be a barrier to studying it and evaluating its importance.
- Photo by truthseeker08 at Pixabay.
*Ronita Mahilall is a PhD candidate at Stellenbosch University (SU) and also the CEO of St Luke's Combined Hospices in Cape Town. Prof Leslie Swartz is a clinical psychologist and professor of psychology at SU. This article is based, in part, on their research paper published recently in the Journal for the Study of Spirituality.
