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Accelerating access to palliative care is a fundamental human right

January 25, 2021 | Press Releases

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 1 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 R20 Billion 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 onto 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 & 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 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 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://youtu.be/DxVhk7tb45Q

 

Sent on behalf of: The Palliative Care Action Group via the Hospice Palliative Care Association (HPCA)

For media queries contact: Karina van der Heever on karina@mango-omc.com or call: 083 347 3358

Media spokespeople: Leigh Meinert, Advocacy Manager of the HPCA, Margie Venter, co-founder and current Chairman of PALPRAC, the Association of Palliative Care Practitioners of South Africa. Should you wish to speak to any of the speakers, please let us know and we will liaise on availability.

EDITORS NOTES:

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).