DYING WITH DIGNITY
Covid-19 pandemic reveals the urgent need for well-funded palliative care in Africa
Disease and epidemics can cause death, and to, at the very least, relieve suffering prior to death, African governments need to invest in infrastructure and systems and set up truly national and equitable palliative care access.
Before Covid-19 the world, and especially Africa, was already burdened by unmet palliative care needs due to communicable and non-communicable diseases.
Major epidemics such as TB, polio, measles and diphtheria (among others) have lingered on the African continent for decades, causing suffering and death. In the 1970s and 1980s, Africa struggled with inadequate immunisation coverage for common infectious diseases. As efforts to control those diseases were gaining momentum, Africa was hit by HIV and Aids to the point of carrying 80% of the global disease burden. This led to the re-emergence of tuberculosis and other opportunistic infections and cancers – against the backdrop of poorly funded health systems, wars in various regions and the underperformance of economies.
While the HIV and Aids epidemic lingered, East, Central and West Africa were hit by sporadic outbreaks of Ebola and other emerging infectious diseases against which many governments were not equipped to protect their populations.
As the Ebola epidemic was getting under control, the Covid-19 pandemic hit the world. In South Africa, it hit hard – not only in terms of medical infrastructure and staffing but also in terms of the provision of palliative care (holistic care for any individual affected by a life-threatening diagnosis).
At the outset of the pandemic, the Hospice Palliative Care Association’s (HPCA’s) Covid-19 advisory group sent an official letter to President Cyril Ramaphosa, the minister of health and the South African National Coronavirus Command Council, pledging its support and outlining its contribution. Interventions included health education, screening, testing, referrals, nutritional support, symptom management, use of HPCA member facilities for isolation and quarantine, psychosocial support, end-of-life support and spiritual and bereavement counselling.
During 2020 and 2021, HPCA and its members screened more than 38,000 clients for Covid-19 and provided care for more than 80,000 patients, family or household members and other clients.
Despite the relevance of hospices, the 2020/21 financial year has been challenging for the association and its members in terms of financial resources. The government provides scant funding for hospices and many funders in the private sector have diverted their support towards the Covid-19 Solidarity Fund. Most companies overspent their corporate social investment (CSI) funding during the last financial year and are consequently likely to decrease CSI spending during the existing and next financial year.
The Covid-19 pandemic has brought the reality of a life-threatening diagnosis into everyone’s homes, yet 14 member hospices of the HPCA had to close their doors in 2020 and 2021 due to lack of funding.
The pandemic meant that many of those infected and with symptoms added to the palliative care burden. Some Covid-19 survivors also continue to suffer from complications and sequelae (resultant conditions) due to being infected with the coronavirus.
It is evident now (as it was prior to Covid-19) that there is an urgent need for funding for palliative care systems that work for everyone – rich or poor, rural or urban, young or old. It is not uncommon for African governments to have defence and security budgets far outstripping the social services sectors such as health, education and social security combined. The biggest threat to the survival of Africans may now not come from war, but from health emergencies such as emerging infectious diseases like Covid-19, Ebola and others that are yet to be discovered.
The 2018 Africa Scorecard on Domestic Financing for Health demonstrated that in the majority of African countries the biggest source of spending, as a percentage of total health spending, was being contributed by households and not governments.
The rising number of cases of people with life-threatening and life-limiting illnesses demands that governments ensure that palliative and comprehensive chronic care is accessible. The commodification and commercialisation of healthcare through privatisation and for-profit public-private partnerships will not wholly deliver the healthcare needed in Africa.
In their article “Palliative Care in the time of Covid-19” published in Daily Maverick in October 2021, Colgan et al highlighted that, “If palliative care is not included in pandemic preparedness when the next pandemic rolls around, many more will die in unnecessary suffering, watched over by their helpless traumatised families, who will be scarred forever. Pandemics by their nature cause death, but we can at the very least relieve suffering prior to death.”
We are encouraged by the appointment in 2020 of Lawrence Mandikiana as the deputy director (palliative care) at the National Department of Health. His audit of existing palliative care services is valuable in highlighting the gaps that exist, as well as where services are functional and potentially duplicable elsewhere.
We are very aware, however, that his role is donor-funded and we therefore call on the South African government to begin dedicating concerted funding to palliative care. The current pandemic has highlighted that African governments in particular need to reprioritise health, invest in infrastructure and systems and set up truly national and equitable palliative care access. DM/MC
Dr Emmanuel Luyirika has been the executive director of the African Palliative Care Association (APCA) since August 2012. He has been actively involved in palliative care development in Uganda and across Africa. Dr Ewa Skowronska was executive director of the Topsy Foundation and technical adviser and senior operations manager for mothers2mothers, before becoming the CEO of HPCA in August 2019.
- The HPCA is a registered NPO in South Africa. Founded in 1987, the HPCA is a member organisation for South African hospices. As a national charity, the association champions and supports around 89 member organisations that provide hospice services to approximately 100,000 people per year. HPCA’s member hospices across South Africa care for patients with a variety of life-threatening diseases, predominantly in the comfort of their own homes.
- APCA is a pan-African organisation working to ensure that palliative care is widely understood, integrated into health systems at all levels and underpinned by evidence in order to reduce pain and suffering related to chronic and life-threatening illness in Africa. Its membership of more than 4,000 individuals and institutions comprises national palliative care associations, ministries of health, schools of nursing and other allied health sciences, patient organisations and advocates, multidisciplinary health workers, and academia from more than 27 African countries, to whom it provides technical assistance on issues related to policy, as well as tailored capacity-building interventions.
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