Continuum of palliative care: lessons from caring for children infected with HIV-1

Abstract

This article presents the essence of continuum of palliative and hospice care for HIV-infected children. Based on the principles of palliative care and the provision of hospice services, the relief of suffering has not always been available to most children with life-limiting illnesses. The palliative care ensures child's comfort and maximum function through the course of their illness. The guiding ethical principle of palliative care includes autonomy, beneficence, non-malfeasance, and justice. Thus, the family and child are full partners with the health care team in management decisions. Its benefit did not just be reserved for end-of-life care. It starts from the time an HIV-1 infected woman becomes pregnant through the course of disease and eventual death of her child. However, there were barriers in providing palliative care. One of which was the lack of appreciation towards acute and chronic pain associated with disease and painful procedures. Another thing was the social and economic barriers to the provisions of appropriate palliative care and hospital services, which also exist. A collaborative multidiscipline program will therefore provide the best environment in providing palliative and hospice care. To sum up, a child with life-limiting illnesses should receive palliative care and hospice services that give them the best quality of life and ease the burden of dying.