The series ran in parallel with the 21st International AIDS conference, highlighting the vital role that hospice and palliative care still has to play in the care, treatment and support of people living with HIV.
Dr Emmanuel Luyirika, CEO of the African Palliative Care Association, opened the series, explaining how palliative care in Africa has developed in response to the HIV epidemic. He noted that palliative care is important for better symptom control, pain management, and helping people living with HIV and their families to address psychosocial, spiritual and legal issues.
Zodwa Sitole, Director of Hospice Support for the Hospice Palliative Care Association of South Africa (HPCA) shared HPCA’s work in building partnerships with the national Department of Correctional Services to improve access to palliative care for prisoners with HIV, and with Traditional Health Practitioners to enhance their knowledge and skills in caring for people living with HIV.
The need for palliative care for children living with HIV was highlighted by Joan Marston, CEO of the International Children’s Palliative Care Network. Joan noted: “A child with HIV remains a child, with all the needs and rights of other children – to be identified, cared for, protected, stimulated through play and education, and to receive the best possible healthcare.”
Faith Mwangi Powell wrote about the inequity in the health response to HIV, noting that: “the focus on treatment – be it for communicable or NCDs – has in part side lined palliative care globally.” She argued that “much more strategic and institutional advocacy work needs to be done to ensure that palliative care is not only integral to the (International AIDS conference) programme, but also to the HIV and NCD global sustainable development agenda.”
Patrick Kangethe, Esther Kamede and Immaculate Owomugisha drew on case studies from Uganda to illustrate that quality of life includes access to justice for people living with HIV. Their article introduces the partnership between Uganda Network on Law, Ethics and HIV/AIDS (UGANET) and the Palliative Care Association of Uganda (PCAU), which is transforming palliative care and community justice across the country.
Dr Liz Gwyther, CEO of HPCA and senior lecturer in Palliative Care at the University of Cape Town, related her experience being invited to teach on: ‘Palliative care for HIV’ to highlight the need for palliative care for non-cancer diagnoses. She addressed issues of stigma towards PLHIV and their clinicians, and called for a focus on palliative care as “a compassionate response” to the suffering experienced by those living with HIV.
Dr Richard Harding, Reader in Palliative Care at the Cicely Saunders Institute, Kings College London, examined the current landscape of HIV treatment and care, arguing that, even though this landscape is evolving towards a focus on treatment, hospice and palliative care still have an important role to play in supporting these policies.
Aleena Baniya, ehospice journalist, explored the disproportionate burden that HIV and AIDS places upon women, as PLHIV, carers and breadwinners. She highlights the fact that women are at higher risk of contracting HIV due to an imbalance of gendered power relations, manifested in rape culture. However, she also notes the value that hospice and palliative care can have for women living with HIV.
Throughout this series, authors have emphasised the importance of palliative care for people living with HIV. Holistic palliative care addresses symptoms and pain control, supports treatment adherence, and facilitates social and psychological support, legal assistance and spiritual care – essential services for PLHIV and their families. It is vital that we continue to advocate for stronger links between HIV and palliative care, recognising the inherent and urgent relevance of each sector to the other.
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