The first collaborative national Palliative Care Conference that took place in Cape Town from 26 to 29 April 2023 was a resounding success. Held at the spectacularly situated Vineyard Hotel in Newlands, the event was the result of a collaboration between three palliative care organisations, being Palliative Care for Children South Africa (PatchSA), the Association of Palliative Care Practitioners of South Africa (PALPRAC) and the Hospice Palliative Care Association (HPCA). The conference was oversubscribed with more than 415 delegates and presenters participating in the 3-day event, some coming from as far afield as the USA and with several delegates from other African countries. Due to high interest levels and, building on its initial success, the conference is likely to become a regular event on the South African palliative care calendar.
Palliative care is everyone’s business
It was a first of its kind collaboration and the largest and most diverse gathering of people interested and working in palliative care from the NGO, public and private sectors ever seen in this country. The theme of the conference was “palliative care is everyone’s business” chosen to convey the important message that palliative care is not just the domain of specialist or dedicated NGOs, but something that can and should be implemented at all levels across all healthcare settings.
The sub-themes for the conference were relevance (contextually and culturally), inclusivity (all diseases, all ages) and sustainability. Every minute of the rich programme was packed with pre-conference strategic planning meetings, pre-conference workshops, plenary sessions, panel discussions, parallel sessions, in-conference AGMs, research hubs, and meetings to discuss how to navigate medical aids during lunch breaks and more.
We appreciated having Dr Justin Baker provide his wisdom and guidance on providing holistic care and treatment for pain for the morning workshop
PatchSA organised two paediatric focused workshops which were held on Wed 26 April. The morning workshop, Managing children’s total pain and distressing symptoms through whole-person care, focused on the value of addressing the whole patient when treating pain and symptoms by using both pharmacological and non-pharmacological therapies and treatments. The workshop began with presentations by PatchSA Chair, Dr Michelle Meiring, and Dr Justin Baker from St Jude Children’s Research Hospital, Memphis, Tennessee (USA) on the holistic treatment of pain. A case study was presented to participants which described the complex pain of a 12-year-old boy experiencing phantom limb pain following an amputation for Osteosarcoma. Participants then broke into groups and explored all aspects of his total pain including physical, psychological, social, spiritual and cultural. Both pharmacological and non-pharmacological treatments were addressed by a multi-disciplinary team.
The afternoon workshop The law, ethics and shared decision making in children’s palliative care, was chaired by Dr Prof Julia Downing (ICPCN) and facilitated by Dr Michelle Meiring, Dr Lyndal Gibbs and Lucy Jamieson from the Children’s Institute. The workshop gave guidance on South African law as it pertains to the care of children with palliative care needs as well as how to ensure ethical and shared decision making where the patient and carers are included in the process.
Following a discussion of some of the principles of the legal and ethical issues and shared decision-making, participants were split into two groups and asked to prepare for a debate taking opposing sides with regards to the decisions that needed to be made. A lively debate and discussion followed which explored key issues and highlighted the complexities in the provision of care, family dynamics, legal constraints and the part that our emotions play in decision making. A more detailed description of these two workshops can be found on the International Children’s edition of ehospice
The opening plenary on Thursday morning included a welcome by Dr Ewa Skowronska, CEO of HPCA, and the two Scientific Chairs, Drs Raksha Balbadhur and Michelle Meiring, followed by an address by Dr Aslam Dasoo, Director of Meditech International Holdings SA and chairperson of HPCA, and a virtual presentation on the history of palliative care in South Africa entitled ‘Our Story so Far‘ from Prof Liz Gwyther, former CEO of HPCA and Emeritus Associate Professor of Palliative Medicine at UCT.
All the plenary sessions were well attended, necessitating the presentations to be live-streamed in an overflow room within the venue.
This preceded an entertaining and contemplative poetry performance by Ms Malika Ndlovu, South African poet, playwright, performer and arts project manager and an illuminating panel discussion, ‘Existential exploration of palliative care in a South African cultural context‘, expertly moderated by Dr Julia Ambler. The fascinating discussion that ensued highlighted the necessity and importance of providing palliative care that was relevant and culturally appropriate for Africans living on the African continent.
Opening plenary panelists from L to R: Mr Lawrence Mandikiana, Dr Pelisa Ford, Ms Kwanele Asante, Dr Mpho Ratshikana, Dr Zukiswa Zingela, Prof Nokuzola Mndende, Dr Julia Ambler (Moderator) and Ms Malika Ndlovu
Paediatric focused sessions
This dynamic opening plenary set the stage for the remainder of the conference which included 6 additional plenary and 15 parallel sessions throughout the 3 days. One of the parallel tracks just focused on issues related to paediatric palliative care, and these sessions were often so well attended that additional seating had to be arranged. Paediatric palliative care presentations in the plenary sessions included a talk by Prof Jan du Plessis looking at Specialist vs Generalist Palliative care and a very moving panel discussion, chaired by Dr Michelle Meiring, where parents, Mr Rod Bloom, Bonni Suckling and Melissa Williams Platt spoke of their experiences of having a child die in a hospital setting. The panel discussion was entitled “More than ‘the cardiac in Bed 5’: preserving patient dignity”.
Bonni Suckling, mother of Jed and founder of Rainbows & Smiles and Rod Bloom, father of Rohan and founder of the Rohan Bloom Foundation spoke of the need for hospital staff to know how to provide compassionate palliative care that recognises the humanity and dignity of their young patients and extends to the family members. Melissa Williams Platt, mom to Samuel and co-founder of Footprints 4 Sam, joined the panel discussion via Zoom. This discussion was chaired by Dr Michelle Meiring.
Welcoming event, Gala Dinner and wonderful entertainment
The conference was definitely not a case of ‘all work and no play’! At the official opening event, wine tasting and cocktail party on the evening of Wednesday 26 April, delegates were melodiously entertained by the senior marimba band from Forres Preparatory School on arrival. Then, after a warm welcome from conference co-chairs, Dr Margie Venter and Dr Julia Ambler, Mrs Tracy Winde, First Lady of the Western Cape and wife of Western Cape Premier, Alan Winde, gave a pertinent and motivational welcoming address.
There were many lighter moments throughout the conference and the entertainment provided at the opening event and the Gala dinner was of a very high standard
In a very short space of time, on the evening of Friday 28 April, The Vineyard hotel staff managed to transform the conference plenary hall into a magical banqueting venue with large round tables bedecked with bottles of wine, flowers and candelabra. The Gala Dinner was another fabulous event where delegates were encouraged to dress up in semi-formal or traditional gear and let their hair down a little. Guests were entertained on arrival by wonderful music provided by an accomplished quartet from the UCT Health Sciences Orchestra.
With MC, Andrew Francis, at the helm and expertly delivering an amusing address and commentary, he used the opportunity to thank the Conference Chairs, and members of the Scientific Committees and Organising Committe for their hard work putting the conference together. The evening was enormously enhanced with a set of songs from the beautiful and talented South African entertainer, Haylea Heyns. The evening ended with tables being pushed aside to create a dance floor and it was heartening to see many people, most of whom work in one of the most emotionally challenging fields of healthcare, let their ‘inner divas’ out on the dance floor!
Opportunities to network and practice self-care
Examples of the memorial bunting created by delegates
The conference venue, set in the beautiful gardens of the historic Vineyard Hotel, with the spectacular eastern slopes of Table Mountain as its backdrop, accommodated the delegates comfortably and encouraged wonderful networking opportunities to take place in the exhibition hall and outdoor spaces. Looking to ‘change things up’ the conference also included an early morning yoga class on Saturday to teach professionals how to release their grief and a table, set up by Angela Rackstraw, an art therapist from Paedspal, where delegates were encouraged to sew the name of a deceased patient, friend or family member onto bunting, which was then strung up around the venue.
Much media interest was garnered by the conference and included this TV interview on the Expresso Show with PatchSA Board member and co-founder of Footprints 4 Sam, Mrs Melissa Williams Platt, and Tracey Brand, Director of Umduduzi, Hospice Care for Children.
Additional media reports related to the conference include the following:
Palliative care as a human right: COVID ICU Project unveils groundbreaking approach BizNews 18 May 2023
SA palliative care practitioners fight for the dying by urging immediate action from the Presidential Health Summit BizNews, 09 May 2023
The cost of ignoring SA’s dying people City Press, 07 May 2023
Milestone conference puts inclusive and sustainable care in the spotlight Daily Maverick, 27 April 2023
Palliative care conference calls for closer collaboration with medical fraternity Med Chronical, 18 April 2023
Mark Heywood gave the closing address of the conference
The final plenary on Saturday morning began with a presentation on Ethics in Perinatal Palliative Care by Dr Julia Ambler, followed by one on Ethics in Geriatrics by Dr Susan Coetzer and a third entitled, Death is part of the job: navigating personal and professional losses by Dr Nelia Drenth.
Mark Heywood was the keynote speaker for the final conference plenary session. Mark is a social justice activist and former Executive Director and co-founder of SECTION27 as well as a co-founder of the Treatment Action Campaign (TAC). He sits on the Boards of several health and human rights NGOs in South Africa, including the PatchSA Advocacy Committee, and is currently editor of Maverick Citizen, a section of the Daily Maverick.
In his closing speech he told delegates that the Covid-19 pandemic had been a “massive wake-up call” to improve access to palliative care with 340 000 excess deaths being officially recorded in South Africa. He went on to say that palliative care was a basic human right and that the law and the Constitution could be used effectively to advocate for more resources to be allocated to palliative care provision.
Citing his experience with the HIV Treatment Action Campaign which started with just 8 people in 1988, he urged all those working in the sector to continue to work collaboratively to advocate for government support and to create an implementation plan. “Don’t wait for somebody to do things. You must continue doing what you do so that when the political will arrives, you can say: ‘Here it is – get on with it,'” he said.
When he opened the conference, Dr Aslam Dasoo reminded delegates that in its simplest form, palliative care is about how well we get to live before we die. And that when someone ‘dies well’ it is the greatest gift to those who witness it and for the loved ones left behind. As a hospice nurse once said, “We are all just walking each other home. Let me hold your hand. Someday, someone will be holding mine.”
Those fortunate enough to have attended this very first collaborative palliative care conference would have returned home with a great deal of food for thought, motivation and renewed enthusiasm for their work and hope for the future of palliative care in South Africa. If you weren’t able to be there, be sure not to miss the next one.
CLICK HERE to watch a short video with snapshots of the conference on our Facebook page.
This report was written by Sue Boucher, Programme and Communications Manager, PatchSA