The unwavering dedication of palliative care providers

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Hospice Week takes place this year from 4 to 10 May. This annual global week acknowledges the vital role that palliative care plays in the world. This year, the Association of Palliative Care Centres (APCC) reflects on the extraordinary journey from the inception of hospices to the current palliative care landscape that provides vital resources to both insured and uninsured South Africans, through self-funding activities and limited formal financial support.

It all started post a visit in 1979 from Dame Cicely Saunders, pioneer of the hospice movement in the United Kingdom, HospiceWits was founded that year, followed by St Lukes Hospice in 1980, Highway Hospice and South Coast Hospice in 1982, Helderberg Hospice in 1986 and the formation of the Hospice Association of South Africa (HASA) in 1987.

The timeline climbs from there, with the association producing the Standards for Palliative Healthcare Services, building qualification and training courses, supporting hospices, and dialoguing with the Department of Health to integrate palliative care into healthcare systems. A rebrand took place in 2007 to the Hospice Palliative Care Association (HPCA) as the word ‘hospice’ was, and still is, often understood to be ‘end-of-life care’.

Another rebrand was launched in 2023 to the current APCC, defining palliative care as ‘the physical, psychological, social and spiritual care provided by an inter-disciplinary team of experts to anyone with a life-threatening illness and their loved ones. Care is offered from the point of diagnosis and extends to bereavement support if needed'.

During the Covid-19 pandemic for example, members of the APCC played a valuable and unseen role. “We recognised at the time that Covid-19 infections fitted within the life-threatening diagnosis category,” says Tersia Burger, interim CEO of the APCC and CEO of the Stepping Stone Hospice in Alberton.

“People were ‘broken’ by Covid-19,” says Burger, who had the virus herself, “and what we found is that many needed rehabilitative support. Their families were also under stress as everyone suddenly faced mortality and there was a long recovery process in front of those that have been infected. Patients who had been in hospital were extremely weak and often suffered from depression and ‘covid-brain fog’, their families were not able to see them, and they and their families required physical and emotional care that was often outside of the capacity of those that love them. APCC members stepped into the gaps.”

Another solid example of palliative care in action is the HIV/Aids pandemic. Members provided palliative care to individuals living with HIV/Aids, offering dignity and comfort during their final stages of life and supporting families affected by the pandemic, addressing their psychosocial needs and helping them cope with the stigma and emotional burden associated with the disease. In 2003, the Association received its first PEPFAR Grant. The grant was used to formalize existing HASA volunteer operational structures into full time appointments; to expand the geographic footprint of HASA; and to increase the number of HIV/Aids patients cared for by HASA member hospices.

Members became vital community outreach centres, educating people about HIV/Aids and promoting awareness to reduce stigma. Once ARTs arrived on the scene, the palliative care sector focused on providing patients with as much relief as possible from pain and other symptoms of a serious illness. It also focused on compliance and adherence when taking chronic medicine. “With the huge impact of the HIV/Aids pandemic, South Coast Hospice answered the call and established the first rural home-based care programme, in partnership with the KZN Department of Health,” says Di van Dyk, CEO of South Coast Hospice. “This model was adopted by the National Department of Health and called the ICHC (Integrated community Home Care) programme.”

From data recorded by 42 members, in 2023 and 2024, between 18,000 and 22,000 people with HIV/Aids and their loved ones were assisted by APCC members. They ranged in age from newborn to past 80 years of age, across all racial and cultural demographics and often people who come to members with challenges related to HIV/Aids, went on to live fulfilled lives.

Many APCC members are financially stretched to provide the service to uninsured people despite the National Policy Framework and Strategy on Palliative Care (NPFSP) recognising hospices as community-based service providers for palliative care referrals in 2017.

“Financial assistance from the DoH differs between provinces,” says Burger. “Eastern Cape members have received grants, whilst there is no funding for Limpopo, Mpumalanga, the Free State, Northern Cape and the North-West. In the Western Cape, several members receive funding for integrated health and wellness programmes (prevention and promotion services), four receive funding for transitional care facilities and three receive funding for palliative care specifically. In KwaZulu Natal, 14 members receive assistance for palliative care services. In Gauteng, 8 members receive limited funding for six beds in their in-patient units. This is very positive, but there is still a way to go towards ensuring that palliative care is accessible for everyone in South Africa.”

APCC members have achieved wonders despite the many challenges that have come their way. Not only do they provide palliative care services, but they also provide training and work-readiness programmes.

“One of our proudest achievements has been obtaining our QCTO accreditation” says Terran Gericke, manager of White River Hospice. “This was an intensive process that challenged us but ultimately strengthened our resolve. We are pleased to share that we now hold a five-year accreditation, marking a significant step forward in our ability to train caregivers with excellence. Another meaningful learning curve has been navigating how to provide our students with workplace experience. While we were unable to place them with our home-based patients due to limited resources, our commitment to their growth remains unwavering."

For more information on the extraordinary achievements of APCC members, visit https://apcc.org.za/palliative-care-milestones/.