When worlds collide — the path to respecting and reflecting cultural diversity in palliative care
Severe illness and the end of life is a journey of great spiritual and cultural significance for many. Within the South African context, palliative care systems and practitioners need to respect a wide diversity of patient values and traditions.
For Kwanele Asante, a bioethicist and former chairperson of the Ministerial Advisory Committee on Cancer Prevention and Control, knowledge of palliative care is augmented by a personal experience of severe illness. After being diagnosed with breast cancer in 2006, chemotherapy damaged her heart. With support from her medical team, Asante worked through the process of preparing herself to die.
Asante ultimately recovered, and her experience pushed her to study bioethics to better understand issues around end-of-life care. A pivotal moment she identified in her own care was when her oncologist assumed her belief system during a consult, saying, “Don’t do what you people do… you come here, we consult with you, we give you a treatment plan, and then you people go and do your things.”
“I had just come back from the US at that time and I was, like, excuse me? ‘You people’?… Why are you making assumptions about what my belief system is? And if I am… somebody who [has] a dual belief system, why don’t you work with me as my clinician to make sure that you honour the African in me, and honour things that matter to me?” said Asante.
“Being trained as a Western bioethicist, you always see the struggle – our narratives don’t allow for respect for multi-cultures. I’m very excited now that we are talking more about decolonising medicine. A lot of people get panicked, but it’s about time that we bring [in] these belief systems that the majority of our people in this country have, and stop othering them.”
Asante was speaking as part of a panel on the “Existential exploration of palliative care in a South African cultural context” at the 2023 South African Palliative Care Conference.
The conference was co-hosted by three organisations – Palliative Care for Children South Africa, the Association of Palliative Care Practitioners of South Africa and the Hospice Palliative Care Association of South Africa – at the Vineyard Hotel in Cape Town between 26 and 29 April. More than 400 delegates attended.
Read more in Daily Maverick: Milestone conference puts inclusive and sustainable care in the spotlight
Palliative care is an interdisciplinary medical caregiving approach aimed at improving quality of life and preventing suffering for patients facing serious and often terminal illnesses, through treatment of pain and other problems – physical, psychosocial or spiritual.
Clinicians providing palliative care within an African context should understand the values and mores of the people they are treating, according to Asante.
“I’d be very disconcerted if I have treated people for 20 years and I don’t speak their language; I don’t understand their cultural belief systems; I don’t understand what truly matters to them,” she said.
This sentiment was echoed by Prof Nokuzola Mndende of the Department of Sociology and Anthropology at Nelson Mandela University and founder of the iCamagu Heritage Institute. Mndende has published extensively on issues relating to African Traditional Religion, and spoke of herself as “living in two worlds”.
“[I was] born and bred in the rural areas of Eastern Cape from Willowvale… Academically, I’m a doctor… but I’m also a diviner. So, another indigenous doctor,” she explained.
“I would love these two worlds to come together horizontally. Because the problem now [is that] we come as scientific and non-scientific.”
Dying at home
Mndende referred to the cultural significance of dying at home, especially in rural and semi-rural areas where there are few opportunities, and family comes first.
“In the rural areas, and from my tradition, the family comes first… because it is understood that it is within the family where there is love and where you will be surrounded. For a terminally ill person in his or her home, there are always people around. The only thing that we need from the West – I’m talking from my experience – is that medicine to alleviate pain,” she said.
“We feel that you must die in your sacred space and also with love because of that ubuntu. Because the outside will not be having ubuntu as we understand it, so what you want is that when the healthcare comes here, you must interact with the people and understand and not undermine them.”
There are those palliative caregivers who push religions other than the patient’s in a rural context, according to Mndende.
“Once you come and tell me about another spirituality, which is better than what I am, then I lose hope with you… I think when we talk about this, we should be sensitive about the cultural and the spiritual aspects of it, and not impose yours,” she said.
Clinicians are often trained in a particular way, and find themselves trying to balance Western principles with what the patient needs, according to Dr Mpho Ratshikana, sectional head and director of the Gauteng/Wits Centre for Palliative Care at Chris Hani Baragwanath Academic Hospital.
“The spirituality that we are taught in palliative care is a Western spirituality. It doesn’t address my patient’s needs… so I have [tools] that are contextualised, that are addressing the situation for our patients, and I believe that’s what palliative care is all about,” she said.
Ratshikana described palliative care clinicians as “innovators” with a responsibility to hear and contextualise patients’ voices and needs.
“For you and me, we need scientific evidence… on the spiritual component. But a lot of things that our communities are doing – rituals and practices that are benefiting the communities – we don’t have any scientific evidence [for],” she said.
“The opportunity for us to make palliative care unique for our communities is huge, and talking about that is [good] and it is acceptable.” DM/MC
Five key takeaways from the 2023 South African Palliative Care Conference:
- It is estimated that only 18% of those needing palliative care in South Africa have access to it;
- Over the past 10 years, the number of hospices under the Hospice Palliative Care Association Of South Africa (HPCA) has more than halved, largely due to funding restrictions;
- There are only two state posts for paediatric palliative care in South Africa – one doctor post in KwaZulu-Natal and one nurse post in the Western Cape;
- The referral pathways in the National Policy Framework and Strategy on Palliative Care include hospices and home-based care, and 93% to 97% of HPCA hospice patients are cared for at home;
- Palliative care is everyone’s business.