While more than 40,000 citizens access palliative care in the country each year, it is nowhere near enough given that tens of thousands of families remain excluded from receiving the physical, psychological, social, and spiritual support that palliative care offers.

South Africa is not excluded from the global debate around end-of-life choices and Medical Assistance in Dying, 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.

A national effort for equity

Hospice Week (from 4–10 May) is annually co-ordinated 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.”

The harsh reality of poverty

The reality faced by lower-income patients is encapsulated by the experience of the late Nonthobeka*. In November 2021, she 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 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.

Support beyond the patient

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.

While the younger teen’s sister did not pass matric, a Hospice Network Partner was assigned to help her with extra lessons so that she could rewrite her exams. She also found casual work at a local grocery store.

In a feedback note 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.”

*Surname withheld to protect the family’s privacy.

Addressing the funding gap

However, Nonthobeka’s family are among the lucky ones as an APCC member happened to hear about her situation. In many cases, patients may not know that palliative care is available or may believe 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 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 who 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.”

Dignity in the home environment

Ken* had the means to receive palliative care before his passing, and the difference it made to his wife was beyond measure. Ken* had not wanted to die in hospital, which resulted in the family reaching out to Hospice White River in Mpumalanga. His wife admits that without the assistance of staffer Elsa Swanepoel, she would not have been able to make it through.

Ken* required a hospital bed, walkers, bed pans, and a syringe driver to enable him to have morphine administered via drip. The Hospice White River staffers sourced it all. On one occasion, they even scoured all of Nelspruit in the early hours of the morning to find a new syringe driver when the original device stopped working.

“I did not expect the level of help and care. Sister Elsa and Debbie arrived at our house and went on over the next months to become an absolute pillar of strength for our family. They became family,” Ken’s wife says.

*Surname withheld to protect the family’s privacy.

Overcoming the anxiety of care

“They also came to our house – sometimes twice a day – to chat with Ken and I, help me change sheets and bathe Ken, turn him, and keep his pressure wounds clean. These are all monumental challenges that face a family looking after their loved one at home, especially when one is frozen with anxiety and sadness.”

It is this level of interdisciplinary care, empathy, and skill that makes palliative care so important for families. Helderberg Hospice palliative care social worker Heidi Hendriks says specialists in this field understand that each patient is unique. As social workers, they are duty-bound to ‘celebrate this uniqueness’.

‘[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,’ she says.

A call for systemic integration

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.

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. While 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.”

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