This year’s Hospice Week (4–10 May) aims to intensify efforts to champion universal palliative care for South Africans facing life-limiting illnesses.
Understanding palliative care
Palliative care plays a crucial role in South Africa by improving the quality of life for people facing serious, life-limiting illnesses such as cancer, HIV/AIDS and advanced chronic diseases. With a healthcare system that often faces resource constraints and unequal access, palliative care helps bridge gaps by focusing on pain relief, symptom management, and emotional and psychosocial support for both patients and their families. It is especially important in underserved and rural communities, where curative treatment may be limited or delayed. By emphasising dignity, comfort and holistic care, palliative services not only reduce unnecessary hospitalisations but also support patients in making informed choices about their care, aligning treatment with their values and needs.
The current situation
While nationally more than 40 000 citizens access this essential service each year, it is nowhere near enough given that tens of thousands of families remain excluded from receiving the physical, psychological, social and spiritual care and support palliative care offers. This is as much a healthcare gap as it is a matter of equity and human dignity.
South Africa is not excluded from the global debate around end-of-life choices and Medical Assistance in Dying (MAiD), but the demand for all-inclusive, early-referral palliative care, funding support and healthcare service integration has become so great that access to the service needs to be secured before tackling issues of preference.
The aim of Hospice Week
As national conversations around end-of-life decisions continue, Hospice Week brings attention to the critical but often overlooked urgent need for universal access to quality palliative care for South Africans facing life-limiting illnesses.
Hospice Week is co-ordinated annually by the Worldwide Hospice and Palliative Care Alliance (WHPCA), with the Association of Palliative Care Centres (APCC), the member organisation for 71 palliative care centres around South Africa, facilitating relevant activities in the country.
APCC CEO Motlalentoa Motsoane says palliative care is not a privilege reserved for a few, nor should it depend on geography, diagnosis, or the ability to pay. ‘We are confronted with a stark reality: while some patients benefit from referrals or access to services, many more are left without the care they need at the most vulnerable time of their lives,’ he says. ‘The inconsistency in recognition and access to palliative care is not just a systems failure but an equity issue that demands urgent attention. We cannot accept a landscape where care from receipt of a life-limiting diagnosis is fragmented and underfunded.’
Real life: Nonthobeka’s story
Too many families are denied meaningful choice at the end of life due to fragmented, underfunded palliative care. We share Nonthobeka’s story to show the difference hospice care can make, but unfortunately, this story is the exception rather than the norm.
In November 2021, Nonthobeka was discharged from hospital to her RDP house on the Garden Route where she lived with two of her daughters. At the time, her middle child was writing her matric exams while her 14-year-old stayed home to look after her mother. No longer able to work due to her illness, Nonthobeka and her children had to get by on two child-support grants. Often there was little to no food in the home.
After learning of the woman’s condition, Knysna Sedgefield Hospice – a member of the APCC – stepped in to provide food parcels for the family and deployed a clinical team to create a care plan for Nonthobeka to manage her pain and symptoms.
Though Nonthobeka sadly passed on, the hospice continued to support the children by offering the youngest daughter puberty training and engaging with her school to ensure her education was properly managed following the loss of her mother. In a feedback note she had written prior to her death, Nonthobeka made it clear what the palliative care centre’s intervention had meant to her: ‘I thought I was just going to die and then Knysna Sedgefield Hospice came and I lived to see my children’s happiness.’
However, Nonthobeka’s family are among the lucky ones as the APCC member happened to hear about her situation. In many cases, patients may not know that palliative care is available, and/or believe that they need to cover the costs themselves. They therefore do not contact a palliative care centre or hospice to access the critical support required.
The role of the APCC
‘The reality is that no price can or should be put on the value of this service,’ says Hanneke Lubbe, APCC Chairperson of the Free State, ‘since death does not distinguish between resourced and non-resourced families. APCC members provide care to all, despite limited public funding. Many members rely on their own fundraising campaigns, community support and the sponsoring of services to non-paying patients by those that can pay or have medical aid benefits for palliative care. This is obviously not the ideal situation as the provision of palliative care should be a recognised component of the healthcare system. A necessity given that a dignified death should be afforded to all.’
Helderberg Hospice Palliative Care social worker Heidi Hendriks says specialists in this field understand that each patient is unique. And, as social workers, they are duty-bound to ‘celebrate this uniqueness’. She adds: ‘[We] encourage patients and families to live and make decisions as the experts of their own lives. This is where autonomy and participation in decision-making are key. This sometimes means that social workers are there to advocate for patients when they are perhaps no longer able to do so for themselves, for whatever reason.’
To ensure that patients receive the care they deserve, the APCC urges families to make sure the hospice or palliative care centre they engage with is appropriately accredited and complies with the relevant regulated norms and standards for palliative care in South Africa. APCC members can be asked for a Letter of Good Standing.
The way forward
Motlalentoa says it is imperative for the government, healthcare systems, medical aids and communities to work collectively to ensure that the service is integrated, accessible and adequately resourced for all. He adds that access to palliative care should be prioritised in South Africa.
‘When people have access to quality palliative care, they are not only given self-respect, but can live longer with pain managed, symptoms controlled and families strengthened through the journey of care. Palliative care should be funded, understood and prioritised as a healthcare service in South Africa. Whilst we understand that end-of-life choices such as medically assisted dying are important conversations, we believe that access to palliative care should be prioritised.’
Words: The APCC
Additional Words: Roshaan Patel
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Featured Image: Magnific
