Palliative Care is Everyone’s Business

Categories: Community Engagement and Featured.

The first national collaborative Palliative Care Conference in South Africa was held in Cape Town from 26th – 29th April 2023. The theme “Palliative Care is Everyone’s Business” allowed for topics of varied appeal. The conference started with workshops on Wednesday 26th organised and moderated by PALPRAC, PatchSA, and the Hospice and Palliative Care Association of South Africa. It was the first time in South Africa that a national collaborative palliative care abstract-driven conference was held which attracted a much wider audience outside of the usual hospice and palliative care providers. Inputs from a broad range of professionals/disciplines and from public, private, academic, rural, and NGO sectors were showcased.

Presentations were made where information, research findings, and proposed solutions to various impediments regarding palliative care services including palliative care integration in healthcare systems were discussed. Several sessions were held every day such as the expansion of palliative care training to online platforms during the COVID-19 Pandemic. It is currently estimated that almost 7 million people died from the pandemic and palliative care was a crucial part of the response to the pandemic. Palliative care training is important for all healthcare workers especially those who work directly or interact with people diagnosed with a life-limiting or life-threatening condition. This helps them to be better equipped to handle people and cases they may encounter from a point of knowledge. Many people were used to face-to-face training and the pandemic caused people to be more creative and pivot their approach to sharing knowledge through different mediums.

Terminal illnesses diagnosed at an advanced stage such as cancer may result in someone requiring care because of the life-limiting condition. One of the sessions touched on this with a focus on South Africa. It is unfortunate that in many places around the globe palliative care is synonymous with death and only the dying. While this is one of the reasons why palliative exists, that is to add life to people’s days or in the words of Cicely Saunders, “You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” It is also important to note that palliative care is also about life and improving the quality of people’s lives. Some people are able to recover from an illness when it is diagnosed early and treated.

Palliative care mitigates pain and symptoms, makes life tolerable, and eases the emotional stress of dying for patients and their families. South Africa has experienced a dramatic increase in the number of people requiring care and support because of a rise in HIV, tuberculosis, and non-communicable diseases like cancer. The South African National Department of Health requires the support of all government and non-government organisations in their vision of a healthy life for all people of South Africa. Although we recognise that palliative care is an approach to care that can be provided in any care setting, most palliative care in South Africa is provided by NGOs. The care provided by hospices takes place mainly within the patient’s home. Professional nurses, trained caregivers, social workers, and social auxiliary workers visit the patient and the family and provide physical, psychosocial, and spiritual care. The South African Law Commission defines palliative care as “medical intervention not intended to cure but to alleviate suffering, including the emotional suffering, of the patient.”

Understanding and enhancing the dignity experience of South African patients with advanced disease is fundamental. The incidence of cancer is predicted to increase globally by 47% between 2020 and 2040, largely in low and middle-income countries. The World Health Organisation and World Health Assembly recognise palliative care as an essential component of cancer care. The evidence of palliative care needs among South African oncology patients is sparse. Research on the patient experience of receiving palliative care across a number of settings is increasing, but the majority of these investigations are situated within the context of developed countries. There is limited research from resource-limited countries, especially with regard to patients with cancer who receive hospice care.

Research findings presented at the conference by different speakers revealed that in South Africa the participants were initially reluctant to be linked to the hospice as a result of the stereotypic perceptions of hospice as being associated with death and dying. Secondly, they perceived positive impact on patient’s physical and psychosocial well-being which resulted from the highly valued interactions with staff and other patients as well as patients’ engagement with creative activities. Finally, the transformation of hospices into a second ‘family’ and ‘home’ and the restoration of an identity that expands beyond the ‘sick’ role.

The discussions at the conference revealed that the approach to palliative care needs to be remodeled for South Africa to better suit the current needs of people living with palliative care needs and to also consider the research-based projection of people who will need these essential services in the decades to come. Ethics need to be a top priority for clinicians and caregivers because they ground and give some sense of morality which results in a humane approach to providing care. Death is also part of the job and we need to be equipped on how to navigate through personal and professional losses. Palliative care is indeed for sure everyone’s business.

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