Just 18% of people needing palliative care in South Africa have access to it – and over the past decade, the number of hospices has more than halved due to funding restrictions, revealed experts at the 2023 South African Palliative Care Conference held in Cape Town recently.
Additionally, says the Daily Maverick, an estimated 800 000 children required generalised palliative care in 2012, with 300 000 of these needing specialised care, but just 14 501 of them were reached by palliative services – a mere 1.8% of the total number needing generalised palliative care.
The conference, attended by more than 400 delegates, was co-hosted by three organisations – Palliative Care for Children South Africa (PatchSA), the Association of Palliative Care Practitioners of South Africa and the Hospice Palliative Care Association of South Africa.
Apart from the drastic shortage of available specialists and lack of access for paediatric patients, another key point emerging from the event was that clinicians providing palliative care within an African context should understand the values and mores of the people being treated.
Kwanele Asante, a bioethicist and former chairperson of the Ministerial Advisory Committee on Cancer Prevention and Control, speaking as part of a panel on the “Existential exploration of palliative care in a South African cultural context” and who has recovered from breast cancer, said her experience pushed her to study bioethics to better understand issues around end-of-life care.
“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 . . . it’s about time we bring (in) these belief systems that the majority of our people in this country have.
“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,” she said.
This sentiment was echoed by Professor Nokuzola Mndende of the Department of Sociology and Anthropology at Nelson Mandela University and founder of the iCamagu Heritage Institute.
Dying at home
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.
Mndende referred to the cultural significance of dying at home, especially in rural and semi-rural areas.
“In these areas, the family comes first… 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. . . when the healthcare comes here, you must interact with the people and understand and not undermine them.”
She said some palliative caregivers pushed religions other than the patient’s in a rural context.
“…we should be sensitive about the cultural and the spiritual aspects of it, and not impose yours,” she said.
Contextualised care
Clinicians often find themselves trying to balance Western principles with what the patient needs, observed Dr Mpho Ratshikana, sectional head and director of the Gauteng/Wits Centre for Palliative Care at Chris Hani Baragwanath Academic Hospital.
“The spirituality 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 address the situation for our patients. 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 our communities are doing – rituals and practices – we don’t have any scientific evidence (for),” she said.
Also under the spotlight was the very real issue of children’s palliative care services, which are unevenly distributed and largely NGO-funded, and with only one public health post for a paediatric palliative care doctor in the entire country.
Resources, research and education are key to sustainable change, with the vast implementation gap between child and adult services being a constant source of frustration for health practitioners committed to paediatric palliative care, according to Dr Michelle Meiring, palliative care paediatrician and chairperson of the non-profit PatchSA.
“In the whole of South Africa, there is only one state-funded doctor post for the provision of children’s palliative care: a 10-hour-per-week position in KZN, matched by one public post for a paediatric palliative care nurse at Red Cross Children’s Hospital in the Western Cape,” she pointed out.
“That’s what we have in terms of government-funded resources.”
She said having all dedicated paediatric patient care specialists in South Africa being NGO-funded was not a sustainable situation.
“But it is exciting that we do have a growing number of healthcare professionals who’ve done the (University of Cape Town’s postgraduate diploma in paediatric palliative care); who’ve done PatchSA courses; who can actually integrate palliative care into their settings.”
Meiring was speaking as part of a presentation on “Sustainable models of paediatric palliative care for South Africa” at the conference.
Need for enhanced children’s palliative care
The World Health Assembly resolution 67.19 was key in reinforcing the importance of palliative care for children, stating that the service was an “ethical responsibility of health systems”, said Professor Julia Downing, CEO of the International Children’s Palliative Care Network (ICPCN).
“The integration of palliative care into the public healthcare system is essential if we’re going to meet the (UN) Sustainable Development Goals; if we’re going to meet universal health coverage. So, this isn’t an option – we have to find sustainable ways of developing paediatric palliative care across the country,” she said.
Meiring said there was a dearth of research relating to the number of children needing palliative care services in the country, and data needed to be collected and updated more frequently.
“You can’t start managing a problem if you don’t know the scale of it,” she said.
A 2013 report by Unicef and the ICPCN on the need for palliative care for children in South Africa, Zimbabwe and Kenya found that an estimated 800 000 children in South Africa required generalised palliative care in 2012, with 300 000 of these needing specialised palliative care.
The report put the number of children reached by palliative services at 14 501 – only 1.8% of the total number needing generalised palliative care.
“If you actually analyse how they interpreted the (state of things), there were big groups of diseases left out of the census. So, we expect that the numbers (of children in need of palliative care) are actually even higher,” said Meiring.
Distribution of services in SA
The PatchSA website has a list of 26 children’s palliative service providers in South Africa, mostly NGOs. However, Meiring determined that about 12 of these organisations were more adult-focused, and seldom – if ever – cared for children.
“Quite a lot of stuff is happening in Western Cape, KZN and Gauteng. But some provinces have nothing at all,” she said.
This uneven distribution of children’s palliative care is also reflected in the pool of graduates from UCT’s postgraduate diploma in paediatric palliative care. Since the inception of the diploma in 2009, there have been 127 graduates, 103 of whom were South African.
The greatest number of graduates were from Gauteng (40), followed by the Western Cape (36) and KwaZulu-Natal (22).
“One (was) posted in the Eastern Cape. (There was) nobody in the Northern Cape, nobody in North-West, one person from Limpopo and one person from Mpumalanga. And so, you really need a much better distribution of graduates,” said Meiring.
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