expert input continued:
Palliative care - an extension of medical care: myths and facts
By Tersia Burger – CEO of the APCC
The Association of Palliative Care Centres (APCC) is a national association for service providers that provide vital palliative care resources to both insured and uninsured South Africans, through self-funding activities and limited formal financial support.
The palliative care sector in South Africa 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.’
Through the decades, there have continued to be misconceptions about palliative care and this article lists a few of them.
Myth: Palliative care is end-of-life care
Fact: Palliative care is holistic and includes the physical, psychological, social and spiritual care provided by an inter-disciplinary team of specialists to both adults and children with a life-threatening diagnosis. Palliative care can and should be provided alongside curative treatments for life-threatening illnesses, ideally from diagnosis. Palliative care can help both the diagnosed person and their loved one’s cope with aggressive treatments through the management of pain and symptoms and providing psychosocial and spiritual support. In order to enhance well-being, it is highly recommended upon receiving a serious diagnosis that an engagement is made with a palliative care centre as soon as possible.
Adults and children with chronic conditions such as HIV/AIDS, drug-resistant TB, chronic respiratory diseases, cardiovascular and neuromuscular diseases, MND and more; all benefit from palliative care. While people can move in and out of a palliative care service, they may remain beneficiaries of the services for as long as they (or their loved ones) need or wish to. Patients may be discharged from the service if they are doing well and able to function independently. This is always negotiated between the patient, family and members of the care team.
Myth: I have to be admitted to a hospice
Fact: Palliative care is primarily provided at the patient’s home as well as in frail care, step-down and childcare facilities, hospitals and care homes for the elderly. Some APCC members have in-patient units (IPUs) where patients are provided with 24- hour care.
Myth: I should be at the end-of-life phase before registering for palliative care
Fact: Each organisation has an admission process where medical records are requested, and they assess what is required for both the patient and loved ones. Recommendations are then made, and the process for registration is undertaken. APCC members are comfortable working alongside the primary clinician or specialist. They can provide a supportive extension of care to the patient and their loved ones; in most cases, the APCC members and interdisciplinary teams collaborate and work alongside the referring doctors who are treating the patient. They also provide supportive care to the patient’s loved ones; this may include advanced healthcare planning, as well as psychosocial and spiritual support.
The inter-disciplinary palliative care teams typically consist of a medical doctor, nurse, social worker and home-based carers and services are offered via hospices/palliative care centres, who are recognised as ‘specialists’ in palliative care.
Myth: Palliative care is only for the patient
Fact: Support is provided for loved ones as soon as the palliative care team is engaged. When a patient dies, bereavement or grief support is provided, as it is considered to be an important aspect of the care in terms of ‘healing’ and promoting general emotional well-being.
Myth: Palliative care is not affordable
Fact: Some Medical Aids pay for the services provided to their members, some people pay for themselves, and some people are subsidised by the APCC member. This is discussed directly with the hospice/palliative care centre.
Myth: Hospices can’t provide high quality levels of care
Fact: APCC members are required to comply with the Standards for Palliative Healthcare Services, approved by the Council for Health Service Accreditation of South Africa (COHSASA) and the International Society for Quality in Health Care (ISQua). These Standards are internationally recognised and benchmark the quality of services that our members provide and APCC members are audited against the Palliative Healthcare Standards.
Palliative care is an international human right for all persons living with a life-threatening illness. We are honoured to work with our members to ensure that we provide quality palliative care to all in South Africa.
With Care beyond Service.