9 October is World Hospice and Palliative Care Day, a day that this sector is spotlighted across the globe. The Covid-19 pandemic has brought the reality of a life-threatening diagnosis into everyone’s homes; and yet, 14 members of the Hospice Palliative Care Association (HPCA) had to close their doors in 2020 and 2021 due to lack of funding.
Palliative care is comprehensive care that should be availed from the time that a person is diagnosed with a life-threatening illness, however it is estimated that only 18% of South Africans are able to access this. Although government approved a National Policy Framework and Strategy for Palliative Care in 2017, implementation has not been prioritised and funds have not been availed for this. For these reasons, this year’s global theme of ‘Leave No One Behind”, is particularly relevant.
“We are encouraged by the appointment of Mr Lawrence Mandikiana as Deputy Director Palliative Care Coordinator at the Department of Health,” says Ewa Skowronska, CEO of the HPCA. “His audit of existing Palliative Care services will be valuable in highlighting the gaps that exist as well as where services are functional and potentially duplicable elsewhere. We are aware however that his role is donor funded and his current contract is due to expire at the end of 2021.”
At a webinar that the Palliative Care Action Group convened on 26 January 2021 on ‘Accelerating Access to Palliative Care: Covid and Beyond’, Mark Heywood, the editor of the Maverick Citizen, observed that, “Our constitution is clear. Our law is supported by international law and SA has ratified international law, we are a member of the World Health Organisation (WHO) and a co-sponsor to the 2014 WHO resolution on palliative care. Why do we still just accept that state care is lacking? There is no question in my mind that it’s a human, legal, constitutional and justiciable right to have access to palliative care and this pandemic has only sharpened the conversation. This is a question of fundamental human rights.”
Data collated in 2020 through to August 2021 from 58 of the 98 HPCA members who submitted their monthly statistics to HPCA on the HPCA Hospice Data Management System (HDMS), show that care was provided for 70,931 clients.
Says Skowronska: “Palliative care is not only for people who are at the end of life, it starts with diagnosis of life-threatening illness. Out of the patient data, 20% were patients who were able to go to work and care for themselves but benefited from periodic palliative care consultations and support groups. 56% were patients who are unable to work but are able to care for themselves at home with the assistance of HPCA member organisations. 24% were patients that are bed-ridden and require extensive care from multi-disciplinary healthcare teams employed by HPCA members.”
Says Leigh Meinert, Advocacy Manager for the HPCA: “Palliative care trained health workers can and are offering specialist support in areas such as pain and symptom management, communication with families, spiritual support and bereavement counselling. Families and patients often don’t know that they can and should expect holistic support when they are facing life-threatening diseases of any kind.”
Dr Emmanuel Luyirika, Executive Director of the African Palliative Care Association says: “Before Covid-19 the world, and especially Africa, was already burdened with unmet palliative care needs due to communicable and noncommunicable diseases. The emergence of Covid-19 and attending lockdowns and physical distancing measures reduced the opportunities for patients to interact with their providers. In addition, many of those infected and with symptoms added to the palliative care burden. Some of the survivors have also continued to have emerging complications and sequelae. As we celebrate the WHPCD 2021, we need renewed focus on entrenching palliative care as part of health systems to support patients and their families better.”
This is a philosophy echoed by Tersia Burger, the CEO of Stepping Stone Hospice in Alberton and a board member of the HPCA. “Palliative care should start at the time of diagnosis, not just at the end of the life. Currently, there is hardly any palliative care in hospitals in SA, with the exception of Groote Schuur, Victoria and Chris Hani Baragwanath – which are driven by passionate individuals. Home based care is the most cost-effective mode of healthcare; it promotes healing in the comfort of the patient’s home and supplemental care by family and friends. And importantly – it allows the patient to spend quality time with their loved ones, when they are at their most vulnerable.
Concludes Skowronska: “South Africa has the opportunity to be a leader in palliative care, with decades of experience behind us and a proven track record for the importance of this speciality. We have seen an increased interest in healthcare professionals in understanding what palliative care encompasses during 2020 and 2021 and it’s time that measures are taken towards implementation of the 2017 National Policy Framework and Strategy on Palliative Care (NPFSPC).”