Access to palliative care in HIV services in Cape Town

ABSTRACT

This paper examines access to palliative care (PC) for patients with HIV, part of a study investigating access to PC for patients with chronic diseases. Studies highlight gaps in symptom management and psychosocial care for People living with HIV (PLHIV) and thus the need to integrate PC into HIV services. The aim of the study was to describe the access of patients with advanced chronic illness to PC services. Methodology: this was a prospective cohort study conducted over six months. Participants were recruited from patients living with HIV with CD4 counts of <200 cells/mm³, patients with advanced cancer and patients diagnosed with motor neurone disease. All HIV patients were on anti-retroviral treatment. Participants responded to a questionnaire including the APCA African Palliative Outcome Scale (POS), a validated palliative outcome scale, as a measure of care at first visit and telephonically once a month for 6 months. Results: Seventy-nine HIV patients were recruited to the study. During the study 6 PLHIV died and no HIV patients were referred to PC services. A significant finding is that most patient outcomes improved for HIV patients. Pain reduced from 1.83 to 0.86; symptoms reduced from 2.41 to 0.49; worry reduced from 2.17 to 0.35. Spiritual well-being also improved – life worthwhile from 3.56 to 4.74 and at peace from 3.63 to 4.86; all measures out of 5. A small sub-set of this cohort (7.7%) experienced high pain levels not controlled during the study. Discussion: Few patients were referred to PC services despite 6 HIV deaths during the study. Patients attending HIV clinics received good PC in conjunction with HAART, suggesting that PC appears to be well integrated into routine HIV care. It is suggested that patients with severe problems including those who died would have benefitted from referral to PC.

KEYWORDS:

• Palliative care
• HIV
• patient outcomes
• Right to Health

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1 A General Comment is a non-legally binding, although authoritative, interpretation of a legal standard. It is based on state practice and input from experts and non-governmental organisations. General Comments assist state parties in fulfilling their reporting obligations and provide interpretative clarity as to the intent, meaning and normative content of the ICESCR (Haricharan, Heap, Coomans, & London, 2013).

2 The information we received while planning the study was that there were 12 MND patients being cared for by MND Society in Cape Town so we elected to approach all 12 patients to invite them to take part in the study. With only 12 patients in the study, the precision achievable is 17%.