The following opinion piece by Ronita Mahilall and Lesley Swartz was featured in the Mail&Guardian newspaper earlier this month.
Palliative care – end-of-life care — 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 it is the most neglected pillar of palliative care.
Priority is given to the medical component of palliative care, as it should be, because a central aim of palliative care is to provide pain relief and symptom 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 nongovernmental organisations. Most African countries cannot afford a professional 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 constraint is a significant stumbling block 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 socioeconomic backgrounds. There appears to be no clear entry requirement and most of the work is learnt through experience, through passed-down family traditions, 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, because most of the spiritual care workers there have some health care background or advanced formal training in religion or chaplaincy. In many countries there is a recognised 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 problems 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 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 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, may have overlapping implications in health care contexts. Health care that takes ubuntu and spirituality seriously provides care not only to reduce physical pain and discomfort in patients but to also care for people 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 in the Western Cape, which has been offering palliative care in Cape Town for more than 40 years.
Our research shows that throughout South Africa, hospice personnel stress 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 flexibility and openness to the problems 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 were mentioned as key barriers. Without funding, the greatest of plans and the best intentions of improved patient care become largely unfulfilled dreams. Alongside this is the need to recognise and celebrate the importance of spirituality to life, health, and illness and to processes of dying and mourning.
Spiritual care in palliative care is not just for the dying, though their needs are 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.