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Accelerating access to palliative care is a fundamental human right

A webinar, focused on highlighting the imperative for a concerted and collaborative effort to accelerate access to palliative care during Covid-19 and beyond, took place on Sunday, 24 January 2021.

The Department of Health has meanwhile invited the organisers – the Medical Research Council (MRC) and the Palliative Care Action Group (PCAG) – to meet with it to discuss the matter.

The webinar also looked at the measures that are being taken towards implementation of the 2017 National Policy Framework and Strategy on Palliative Care (NPFSPC). Approved by the National Health Council in 2017, implementation of the NPFSPC is still almost non-existent in the public healthcare system and in many cases, is accorded lip service in the private system.

“Palliative care traverses the contours of a discipline often at the margins of medical discourse and which has become front and centre in the age of pandemics, in the most starkly relevant way,” says Dr Aslam Dasoo, convenor of the Progressive Health Forum and founding member of the Palliative Care Action Group. 

“The science of palliative care is evolving, like the rest of the practice of medicine. The development of instruments that can attenuate the suffering occasioned by life-shortening and terminal illness is perhaps one of the most innovative areas of medical research today, at a time when the focus on healthcare has never been as acute in the modern era. But the innovation is not confined to the cold, hard and factual rigours of research. It is also the evolution of how helpless human beings are valued when in the care of the modern health system, in which the priorities in the hierarchy of care swiftly change.”

Says Mark Heywood, a South African human rights and social justice activist and co-founding editor of Maverick Citizen: “Palliative care is an integral and essential human right. It is linked to dignity and should be part of the continuum of healthcare and not an optional add on or a luxury for a health system. However, palliative care is still primarily an NGO function that reaches less than 20% of people who need it in South Africa.” 

“In the case of children, there are currently up to one million children in SA in need of palliative care services. When you bear this in mind, it’s even more abhorrent to understand that there were 201 hospices in 2010 and only 103 in 2020 - most of them having collapsed due to lack of funding.”

Nancy Mini, a professional nurse with 35 years’ experience and a postgraduate diploma in palliative care medicine, lost her husband Dr Clarence Mini, the board chair of the Council for Medical Schemes in May 2020. 

“There needs to be more of a recognition of the value and role of palliative care,” she told the webinar. 

“Whilst the policy framework exists and there are ongoing conversations, my husband still died in a state of trauma due to Covid-19 complications and we, as a family, underwent immense trauma. There was a massive lack of communication from the part of healthcare service providers, very limited empathy shown and a plethora of actions that took place during the course of my husband’s treatment where the consent process was questionable. If we went through this, with all the resources at our disposal, then what are other families going through? We have to make sure that as palliative care practitioners, we make a difference during this pandemic. And we have to ensure that actions are taken now.”

So why is palliative care still not part of healthcare budgets?

Shivani Ranchod, a health actuary and co-founder of Aligned, a company that offers end-to-end, value-based financing solutions for the optimal management of complex patients, undertook academic research a decade ago to calculate the cost of end-of-life scenarios. 

Says Ranchod: “The data at that point showed that 10% of total spend by medical aids was on fewer than half a percent of beneficiaries. For an indication of the sheer scale, more than R20bn was spent in 2020 for people in their last year of life.  This spend did not alleviate depth of suffering, but was primarily associated with aggressive and invasive medical interventions right to the end of life. In SA, we are demonstrating profoundly uncoordinated care and this is being highlighted by the pandemic.

“The economic cost of death can also not solely be calculated by the individual’s medical care and death. The economic loss has to be extrapolated to encompass losses to the economy due to caregiver responsibilities – which fall disproportionately on women as well as the serious impact on productivity of complicated grief. A shift away from hospital-based interventions to home-based care that is undertaken by palliatively trained teams would cost less and provide better care.”

In the Western Cape, where a palliative care task team has been driving and supporting the implementation of palliative care activities since 2017, the Covid-19 pandemic further highlighted the gaps that exist within the existing infrastructures. 

Says Juanita Arendse, chief director emergency and clinical services support for the Western Cape: “At the start of the pandemic, we prepared for the potential need of 795 palliative care and end of life beds across the Province for both Covid-19 positive and negative individuals. Palliative care is not yet business as usual in public care services and there are gaps in terms of spiritual and mental health care for both patients and staff that has not yet been fully explored. We need to build on systems that encompass stakeholders, partners, academia, policy training, specialist financing and how it can be collectively owned.”

This is a philosophy echoed by Tersia Burger, the CEO of Stepping Stone Hospice in Alberton and a board member of the Hospice Palliative Care Association of SA (HPCA). 

“Palliative care should start at the time of diagnosis, not just at the end of 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 you to spend time with your loved ones when they are at their most vulnerable. 

“It is also not second-rate care. As an example, the Hospice Palliative Care Association provides training at NQF Level for home-based carers. This includes 80 hours of lectures, 300 hours of practical simulation and 300 hours of workplace training. I hope that, combined, we will make a difference to this world that we work in.”

Dr Glenda Gray, CEO and president of the MRC, acknowledges the critical role that the council needs to play in the evolving and critical palliative care need: “In SA, in the last 307 days, we have a country that is experiencing national trauma and grief. We need to find ways of documenting that and dealing with it. As the MRC, we can support implementation of policy, operational research, monitoring and evaluation, paediatric palliation and improvement of outcome. There is lots of work to do and science needs to closely with the area of interventions and provide services to promote outcomes in this area.”

Says Ranchod: “In order for us to succeed in the critical task of integrating palliative care into healthcare services, we need political will and flexible mindsets. We need a change in our healthcare sector, in how we train, use community healthcare resources, resuscitate an ailing hospice sector and more. In New Zealand, palliative care is interwoven into the fabric of their healthcare system. We must strive for this.”

Heywood agrees that the case of palliative care cannot be ignored. “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.” 

Concludes Dr Emmanuel Luyirika, executive director of the African Palliative Care Association: “The Covid-19 pandemic on our continent can be responded to. With all the work that has been done to date, we can use existing and regional frameworks already in place to respond to emerging diseases. But we, as a continent, need to take action to put into place what we know is required to preserve human dignity during not only death, but with any life-threatening disease.”

Dr Sandile Buthelezi, the director-general (DG) in the Department of Health has written to the webinar organisers inviting them to meet with him on the subject of palliative care. “We remain committed to working with you to strengthen access to palliative care to all communities on an equitable basis.” 

Organisers say they will follow up with the DG to arrange this meeting.

A recording of the webinar can be viewed at https://bit.ly/webinar24012021

The Palliative Care Action Group (PCAG)

In mid-2020, a number of stakeholders joined together to establish an advocacy group to support the implementation of the National Policy Framework and Strategy on Palliative Care (NPFSPC). 

In the wake of the Covid-19 pandemic, diverse stakeholders revived the strong alliance created by the Minister of Health at the time to draft the NPFSPC and initiated a number of working groups to help to expedite implementation of the palliative care policy and the goals contained therein. 

The speakers

Juanita Arendse

Juanita Arendse has worked within the Western Cape Health Department since 1989 and she currently serves as the Chief Director Emergency & Clinical Services Support for the Province. She holds a Master’s in Public Health from the University of the Western Cape and she has deep experience in health systems management and monitoring, policy writing and review and public financial management. In 2016 she took it upon herself to champion the implementation of palliative care in the province and she is currently writing her doctorate thesis on this topic.

Emmanuel Luyirika

Dr Emmanuel Luyirika is the Executive Director of the African Palliative Care Association (APCA) since August 2012.  He spent 9 years as a Director at Mildmay International in Uganda where holistic care, training, prevention and research for HIV and related conditions were provided. He studied medicine at Makerere University in Uganda, Family Medicine at MEDUNSA and Public Administration at the University of Stellenbosch, both in South Africa. He has been actively involved in palliative care development both in Uganda and across Africa and he serves on numerous boards including the Worldwide Hospice and Palliative Care Alliance (WHPCA).

Nancy Mini

Nancy Mini is a professional nurse with 35 years’ experience in diverse fields in including midwifery and public health. She is passionate about HIV/AIDS and oncology and was involved in clinical trials in both.  After the tragic passing of her oldest son Vuyisile in 2018, she enrolled in and has recently completed the University of Cape Town’s Post Graduate Diploma in Palliative Medicine.

Mark Heywood

Mark Heywood is a South African human rights and social justice activist. He is to co-founding editor of Maverik Citizen, the civil society/ social justice segment of the Daily Maverick which is SA’s most widely read online news source. Mark studied English language and literature at Oxford University and African literature at Wits University. Between 1997 and 2010 he led the Aids Law Project and thereafter served as the Executive Director of SECTION 27. He is also the co-founder of the Treatment Action Campaign, the AIDS and Rights Alliance of Southern Africa, Corruption Watch and Save South Africa.

Tersia Burger

Tersia Burger is the CEO of Stepping Stones Hospice in Alberton and a board member of the Hospice Palliative Care Association of SA (HPCA). Prior to founding the hospice in 2013, Tersia lived a very different life working in the defence industry and for a time lived in Saudi Arabia, Yemen and Afghanistan. Today she shares her fascinating journey with us.

Shivani Ranchod

Shivani Ranchod is a healthcare actuary and academic with close to 20 years’ experience the health care sector. She is the co-founder and CEO of Percept - a trans-disciplinary consulting firm – and is also the co-founder of Aligned, a company that offers end-to-end, value-based financing solutions for the optimal management of complex patients. Shivani is works part-time as a Senior Lecture at the University of Cape Town, where she was previously the head of Actuarial Science. She is also long-term advisor to the Government Technical Advisory Centre, a component of National Treasury.

Glenda Gray

Prof Glenda Gray is a physician, scientist and activist who specialises in the care of children and in HIV medicine. In 2014, she became the first female president of the South African Medical Research Council, a post that she still holds. She has been awarded South Africa's highest honour, the Order of Mapungubwe (Silver) and in 2017 she was recognised by Time Magazine as one of the world’s "100 Most Influential People". Last year, Forbes Africa listed her as one of Africa's 50 Most Powerful Women.

3 Feb 2021 12:01

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