The World Health Organisation (WHO) defines palliative care as “an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with a life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.”

As South Africa waits anxiously for the roll-out of life-saving vaccines a case is being made for the promotion of palliative care in public and private healthcare to alleviate suffering for patients and their loved ones.

During a webinar co-hosted by the South African Medical Research Council (SAMRC) and the Palliative Care Action Group, experts agreed that palliative care was sorely lacking.

Quoting statistics from the WHO, the executive director of the African Palliative Care Association, Dr Emmanuel Luyirika, said that annually an estimated 40 million people need palliative care, of whom 78% live in low and middle-income countries. Globally, only about 14% of people in need of palliative care receive it.

Luyirika says Africa is doing poorly on all fronts.

“In order to provide palliative care for Covid-19 and other emerging infectious diseases, Africa does not need to reinvent the wheel but to utilise existing regional and global frameworks and recommendations already in place to prevent unnecessary suffering.”

One of the frameworks in place is the 2014 World Health Assembly Palliative Care Resolution, which sees palliative care as an integral part of general healthcare. It gives nine objectives for member states, which include ensuring adequate access to essential medicines (such as pain medication), adequate funding, and the allocation of sufficient human resources. Africa is failing to meet these needs.

In South Africa, some progress has been made in the Western Cape to integrate palliative care into the public sector, although a sizeable gap still exists.

Juanita Arendse, chief director of emergency and clinical services support in the Western Cape government, said the province launched its palliative care policy in October 2018 after the National Policy Framework and Strategy on Palliative Care was finalised in 2017. Arendse said the province identified 795 beds for palliative and “end of life” care for Covid-19 patients.

Nancy Mini, whose husband, Council for Medical Schemes chair Clarence Mini, died from Covid-19 in May last year, read a letter she wrote to Health Minister Zweli Mkhize lamenting the poor treatment she, her husband and family received during his illness.

Mini complained she was not given regular updates about her husband’s condition, and after his death she was called by an ICU nurse in the early hours of the morning asking when the family would collect her husband’s body. 

“What is needed during this time is that families are kept updated about their loved ones’ conditions. They should be informed in a professional manner about the inevitable death, especially if clinically the condition shows there will not be an improvement,” said Mini.

She said patients should at least die with dignity and not alone. She also emphasised that the psychological effects of the pandemic need to be well-managed.

“It is not only about the illness we need to take care of, but we also need to look at treating the patient holistically. Burials and funerals at this time are abnormal for many of us and are going to leave us with major emotional scars.”

Mini, a registered nurse, is studying towards a Palliative Care diploma at the University of Cape Town.

Shivani Ranchod, a healthcare actuary and academic, said palliative care was not only more morally sound but also cost-effective.

“The economic case in the private sector is clear: when you pay attention to patient preferences and you provide support to them and their families, the trajectory of care inevitably switches away from expensive interventions in acute settings towards home and hospice-based care. This simultaneously costs less and results in a better experience for the patient and family.”

Ten years ago, Ranchod was involved in research looking at healthcare costs for terminally ill persons in medical schemes which found that schemes pay 12 times more on those in the last year of life than those who survive the year.

“This equates to 10% on fewer than 0.5% of their beneficiaries,” said Ranchod. This would be more than R20-billion in 2021, although the type of treatment people were receiving was less than desirable.

Maverick Citizen editor Mark Heywood said palliative care was still mainly an NGO function and despite the existence of legal and policy frameworks for palliative care in South Africa there was a gap in implementation.

“The gap between what is provided in the public [sector] and a contracting palliative care service in the NGO sector points to a shocking failure to protect rights,” said Heywood.

He said children, in particular, should have access to palliative care as part of the basic right to healthcare. 

The president and CEO of the SAMRC, Glenda Gray, said scientific research was required to fill the palliative care gap. This included finding innovative ways for loved ones and Covid-19 patients to interact when in isolation, dealing better with pain management, and addressing the mental health impact of the pandemic.

Gray said the SAMRC could support policy implementation, do operational research, monitoring and evaluation and address issues of palliative care for children.

She indicated contacting the panellists to initiate the research process and source funding. DM