The Palliative Care Conference taking place from 26 – 29 April at the Vineyard Hotel in Cape Town is a collaborative venture between three leading palliative care organisations in the country – the Association of Palliative Care Practitioners of South Africa (PALPRAC), Hospice Palliative Care Association of South Africa (HPCA) and Palliative Care for Children South Africa (PatchSA). Its theme ‘Palliative Care Is Everyone’s Business’ raises awareness of the need for palliative care to be considered essential care and a basic human right for all persons diagnosed with a life-threatening or life-limiting illness and that palliative care encompasses far more than care given at the end of life.

The conference co-organisers state, “Palliative care is holistic care that uses a multi-faceted approach to improve the quality of life of patients and their families and should begin at the time of the diagnosis. The knowledge of what the palliative care sector can provide is critical information for anyone working within the medical profession, as the support that is available is beneficial to not only the patient and their loved ones, but also to the medical practitioner.”

The conference programme has been developed to encourage closer engagement with the wider medical fraternity to ultimately benefit their patients. “Palliative care is in support of the medical and healthcare professional and not instead of,” emphasise the co-organisers.

“Patients that are cared for by HPCA members are cared for by an interdisciplinary team including a Medical Doctor, Professional Nurse, Social Worker and Home Based Carers trained in palliative care,” says Dr Ewa Skowronska, CEO of the HPCA and moderator of the Wednesday, 26^th April workshop on Home-Based Palliative Care and Providing dignity and relief from suffering at the end of life: “In the 2021/2022 financial year, HPCA members conducted 340,345 home based care visits which included 2.9 million interventions; of which 65% were clinical, 18% psychological, 12% social and 2% spiritual.”

Dr Julia Ambler, Chair of PALPRAC and a palliative care doctor for 20 years, describes the relief that the primary treating team feels when they are able to confidently refer to palliative care: “The knowledge that we will continue care beyond the hospital walls, that we will ensure a patient’s comfort and that the patient and family will be included in difficult and serious care planning conversations, gives the health care provider enormous peace of mind. While all health care professionals should be able to apply the basic principles of palliative medicine, none of us can be all things to all people. There is great value in a collaborative team approach for the patient, family and the health care team. “

Associate Professor Shivani Ranchod (a health actuary and co-founder of Alignd, an organisation supporting cancer patients throughout their journey) and co-presenter of the plenary session Sustaining palliative care in public and private healthcare sectors’ says: “The Alignd ‘Next of Kin’ survey clearly illustrates the vital role palliative care plays. Conducted with family members after the death of a loved one, feedback yielded shows that deaths at home/hospice is a measure of what matters most to patients. We see that 79% of Alignd patients are supported in being at home at the end of their lives, in comparison to medical scheme patients that are not enrolled with Alignd; the majority of which end their lives in hospital.”

Skowronska concurs: “Approximately 97% of patients cared for by HPCA members are cared for at home with 3% being cared for by Hospice In-Patient Units (IPUs). Research undertaken by the S.A. Medical Research Council shows that palliative care at home[1], could save the Public and Private health care sectors millions of rand per annum.”

Ranchod notes that, “an overall positive rating of above 80% across all areas of palliative support received by the family during the journey with their loved one shows substantial improvements in experience. But these are more than numbers – they translate to lives lived as best as possible, with pain and symptoms managed optimally, and with family and loved ones nearby. Another important data item that we have collated is that when we look at unnecessary chemotherapy and surgery in the last month of life for patients on the Alignd intervention, we see a 53% reduction in patients suffering these procedures compared to their counterparts not on the Alignd programme.”

Mellissa Williams-Platt, an Executive Board Member of PatchSA and co-founder of the charity, Footprints 4 Sam, will tell her son’s story in the presentation, ‘More than ‘the cardiac in bed 5’: Preserving patient dignity’

Samuel John Frederick Platt (Sam) was born on 9 April 2015. He spent all 15.5 months of his short life in hospital and endured countless medical interventions without anyone suggesting a palliative care approach, which could have significantly reduced his suffering and theirs. For this reason, Williams-Platt is adamant that palliative care should be offered immediately when a patient is identified as having a chronic condition that will require multi-disciplinary support.  Sam’s diagnosis of central core disease, a rare muscle myopathy, was only diagnosed just before he died.  “Diagnosis can take many years, and in that gap patients fall between the cracks and their care is then often compromised”, says Williams-Platt.    As Sam’s parents, Melissa and Fred’s continuing commitment to their son is to ensure that his bravery and loving spirit lives on through others to improve the quality of life and care provided to underprivileged children in our country who suffer from a chronic or life limiting illness.

“Footprints 4 Sam advocates for children needing palliative care and for a human centred approach to healthcare.  The Samuel Generation of healthcare, one where both the humanness of the patient is recognised as well as the family and the health professional that serves them.  Our healthcare and advocacy projects include the goal of having medical students graduate having heard a talk from a bereaved parent and to ensure that all medical students and doctors at these presentations receive a ‘Sam bracelet’ to remind them of their patients, their own humanity and emotional well-being.  The key message being to remember that their patient is a child and not just defined by their disease, that parents have a voice and rights and that they too, as health professionals are first and foremost a human being and not just a doctor, nurse etc,” says Williams-Platt.

“When we take a look at total numbers, the vital support services that palliative care offers are very evident,” says Skowronksa. “In 2021/2022, whilst HPCA members provided palliative care for 15,793 patients, support was also provided for 22,699 family members”.

The palliative care sector in South Africa consists of a strong network of both non-government- and non-profit organisations that focus purely on palliative care services. Although government approved a National Policy Framework and Strategy for Palliative Care in 2017, implementation has not been prioritised and funds have not been availed for this.

There is still much work to be done. Conference organisers are confident that this event will help to continue spreading awareness of the benefits of palliative care and the essential role it plays in the lives of both patients and their family members, ensuring a far deeper understanding of palliative care and closer engagement with medical professionals.

About the Palliative Care Conference

This pioneering in-person conference will take place from 26 – 29 April 2023 at the world-class Vineyard Hotel in the beautiful mother city of Cape Town.

In the wake of a deadly pandemic which exposed the lack of preparedness of many healthcare providers to offer appropriate end-of-life care to patients and families and addressing the urgent need to raise awareness of the multiple benefits of early referral to palliative care, the compelling theme chosen for the conference is Palliative Care is Everyone’s Business.

The conference aims to reach out to and to welcome people from a broad diversity of vocations whose work brings them in contact with adults, adolescents, and/or children with life-threatening and life-limiting conditions and to encourage the exciting exchange of knowledge, new and innovative ideas, research and experiences.

The overriding focus of the workshops, plenary and parallel presentations at the conference will be on the imperative for palliative care of the future to be inclusive, relevant, and sustainable.

[1] https://www.samrc.ac.za/sites/default/files/attachments/2022-09/SavingLivesSavingCosts.pdf