When Nontobeko fell ill, her children watched their world unravel.
In 2021, Nontobeko’s two children watched helplessly as their mother’s health deteriorated. With no steady income, the family survived solely on two child support grants, often leaving them with little to no food.
The strain was immense. One child was preparing for matric, while the other was just 14. Both were forced to confront the harsh realities of illness, poverty and uncertainty far too early in life.
Relief only came when Knysna Sedgefield Hospice intervened.
The hospice stepped in with food parcels and deployed a clinical team to develop a care plan that helped Nontobeko manage her pain and symptoms. For the first time in months, the family had some form of stability.
Nontobeko, who lived in an RDP house in the Garden Route and could no longer work due to her illness, was among an estimated 40,000 South Africans who were fortunate to receive palliative care support.
Her story is now part of a broader national conversation unfolding in South Africa, one that sits at the intersection of dignity, care and choice at the end of life.
Earlier this month, non-profit organisation Dignity SA approached the North Gauteng High Court in a landmark legal bid to decriminalise and legalise medically assisted dying. The application seeks to have the current common law prohibition declared unconstitutional and invalid.
But as the country debates assisted dying, the Association of Palliative Care Centres (APCC), which represents 71 palliative care organisations nationwide, has raised serious concerns about the thousands of families still unable to access even basic palliative care.
The inconsistency in recognition and access to palliative care is not just a systems failure, it is an equity issue that demands urgent attention. We cannot accept a landscape where care from the point of a life-limiting diagnosis is fragmented and underfunded.
— Motlalentoa Motsoane, APCC CEO
According to the APCC, tens of thousands of South Africans are excluded from the physical, psychological, social and spiritual support that palliative care provides.
The organisation argues that the demand for comprehensive, early referral palliative care, along with proper funding and integration into the healthcare system, has grown so urgent that access to such care must be secured before the country tackles issues of end-of-life preference.
APCC CEO Motlalentoa Motsoane said palliative care should never be treated as a privilege.
“Palliative care is not reserved for a select few, nor should it depend on geography, diagnosis or the ability to pay,” he said.
“We are confronted with a stark reality: while some patients benefit from referrals and access to services, many more are left without the care they need at the most vulnerable time of their lives.
“The inconsistency in recognition and access to palliative care is not just a systems failure, it is an equity issue that demands urgent attention. We cannot accept a landscape where care from the point of a life-limiting diagnosis is fragmented and underfunded.”
Motsoane said the experience of patients like Nontobeko reflects the daily reality faced by lower-income families across the country.
After her death, the hospice continued to support her children, offering puberty education to her youngest daughter and working closely with her school to ensure her education remained on track.
Hanneke Lubbe, APCC chairperson in the Free State, said death does not discriminate between wealthy and poor families, but access to care often does.
Meanwhile, Helderberg Hospice Palliative Care social worker Heidi Hendricks emphasised the importance of patient-centred care.
“Every patient is unique. We encourage patients and families to live and make decisions as the experts of their own lives,” she said.
“This is where autonomy and participation in decision-making become crucial. Social workers often have to advocate for patients when they are no longer able to do so themselves.”
The APCC maintains that access to quality palliative care not only restores dignity but can also improve quality of life, allowing patients to live longer with pain managed, symptoms controlled, and families supported through the emotional journey.
“Palliative care must be funded, understood and prioritised as an essential healthcare service in South Africa,” Motsoane said.
“While we acknowledge that end-of-life choices such as medically assisted dying are an important conversation, we believe that equitable access to palliative care should come first.”
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