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), Palliative Care for Children South Africa (PatchSA) and the Hospice Palliative Care Association (HPCA).
The co-organisers state: “Palliative care is the physical, psychological, social and spiritual care provided by a multi-disciplinary team of experts to anyone with a life-threatening illness and their families. Palliative care is often misunderstood to be end-of-life care, this care should be provided from the point of diagnosis and often extends to bereavement support if needed. The Conference programme highlights the multi-disciplinary nature of the palliative care sector and its applicability to all; hence the Conference theme of “Palliative care is everyone’s business”.
One of the many interesting topics that will be presented and discussed is that of how cultural beliefs and heritage can, and do, shape our view of death. “The one thing we all know is that, at some point, we will all die,” says Dr Pelisa Ford, a radiation oncologist and a panellist for the ‘Existential exploration of palliative care in a South African cultural context’ panel discussion on Thursday, 27 April. “However how we process this reality against the backdrop of our cultural influences or heritage-based belief system does impact our reaction to it. And, consequently, the palliative care team’s ability to support and assist the patient and family at this critically sensitive time. For example, how a patient chooses to undergo treatment, or how they ultimately choose to die, is often decided within the context of their spiritual or cultural beliefs. The palliative care team and the treatment plan must take cognisance of the patient and family’s wishes within the context of their value and belief systems.”
A paper presented at the 2021 Palliative Care, Culture and Clinic Symposium entitled ‘Decolonising end-of-life care: lessons and opportunities’[1], asked the question: “Do health and illness, suffering and death, life and after-life, have the same meaning everywhere?”. The answer was: “These questions are rhetorical, as the clear answer to all is ‘no’. For some, wakefulness in the final moments is crucial even if pain must be endured, while others wish to be pain-free even at the cost of alertness. Some want nothing more than to be at home surrounded by family at the end, others want to fight for a longer life in the ICU.”
The World Health Organisation[2] (WHO) itself asserts that while palliative care should be universally accessible, it does recognise that specific types, severity, and meanings of suffering vary by geopolitical situation, socioeconomic conditions and culture.
“There is a need to take traditional values and practices into account and to integrate them with palliative care therapies,” says Dr Ford. “If we ignore the patient and loved one’s belief and value systems, barriers to optimal care are created through misunderstandings and conflict.”
This is confirmed by Tracey Brand, Director & Palliative Care Social Worker at Umduduzi – Hospice Care for Children in Kwazulu-Natal, who is presenting a talk entitled ‘Impact of cultural beliefs in relation to osteosarcomas’ on the 27thApril: “Culture is an integral part of everyone’s lives. Although, at times, it may seem nonsensical to people outside of a particular culture, it is crucial to the people involved. Recognising this and practicing socially conscious medicine can result in care that is contextually relevant to meet the needs of each patient. For example, in the case of Osteosarcomas, which we’re seeing quite often recently, the cancer starts in the bones. There can be conflict between families and treating teams when it comes to an amputation that is required. Families often reject an amputation due to cultural reasons and this can lead to a devastating prognosis and a very uncomfortable death”
Brand, who has had over 15 years’ experience providing palliative care services to children diagnosed with this (and other life-threatening and life-limiting conditions) and their families continues: “The province of KwaZulu-Natal is steeped in tradition and many people celebrate both their cultural and traditional beliefs as well as their religious ones. Many of these families believed that amputation would prevent their child from being recognised by the ancestors and therefore is not an option, while others needed to consult with traditional healers as they believed the tumour was more likely bewitchment. When rituals are conducted at the same time as chemotherapy, the family is often likely to ascribe the tumour shrinkage to the rituals, rather than the chemo. Whilst many families agree up front to amputation, once they see the reduction in the tumour size due to pre-operative chemo, they often retract their consent for amputation or are lost to follow-up. Children then return to the system months later with an even larger tumour which has inevitably spread.
“From experience, allowing a family the leeway to consult alternative healers and conduct those rituals prior to treatment has often led to more favourable outcomes. Often, the paternalistic nature of medicine ‘chases’ families away as they don’t feel there is space for them and their needs. However, there is a flip side. Without early treatment many of these children will end up with spread and this is difficult to treat. Also, without amputation the tumour can often end up fungating (ulcerous tumours), growing exponentially and seriously affecting quality of life. As far as possible we try to incorporate the family and at times the child’s cultural needs and look at where we can accommodate them in a safe way.”
“Our heritage and belief systems often define who we are as human beings. Our culture is important and cannot be ignored”, stresses Dr Ford. “Palliative care is a broad multidisciplinary approach. It includes active and total care of the patient’s body, mind, and spirit. We need to continue both working with and listening to each other as we navigate the, at times, complex reality of life and death.”
“The balance between respect, duty and emotion is a difficult one to maintain,” agrees Brand.
The Palliative Care Conference will take place from 26 – 29 April at the Vineyard Hotel in Cape Town. For more information, please visit: https://pcconference.co.za
