How is palliative care part of the right to health? The South African evidence

Gwyther, Elizabeth

How is palliative care part of the right to health? The South African evidence

Doctoral Thesis

2019

Abstract

Palliative care is an appropriate and compassionate response to the needs of patients with life threatening illness. International human rights law establishes palliative care as part of the right to health. But what does this mean in practice? How is palliative care part of the right to health at the country level and in everyday patient experience? This thesis addresses this question with evidence from South Africa. South Africa is important for a number of reasons. The government, despite the country’s progressive Constitution (No 108, 1996) which entrenches the right of access to health care has yet to take responsibility for palliative care. Most recently, the South African government co-sponsored the World Health Assembly (2014) resolution on palliative care and thus has a commitment to implementing the resolution. The thesis employs General Comment 14 on the Right to Health to frame the four nested studies that were carried out to address the key research question. General Comment 14 (2000), adopted by the United Nations Committee on Economic, Social and Cultural Right, describes the normative content of the right to health (Article 12 International Covenant on Economic, Social and Cultural Rights) to include four overlapping elements – availability, accessibility acceptability and quality. Aim of the research: to evaluate current provision of palliative care in South Africa in terms of the Human Rights considerations of availability, accessibility and quality. Study One commences the thesis by estimating the need for palliative care in South Africa. Using mortality data for 2010 for conditions determined a priori to require palliative care, approximately 0.52% of the population were estimated to require palliative care, which translates into an average need of 698.5 persons per 100000 or 1 in 143 people every year. While this is a considerable burden, it is also likely to be a significant under-estimate, given limitations to the methods identified in the study. Study Two examines availability of services to meet the need for palliative care. A survey was completed by 131 palliative care organisations between March 2011 and October 2011. Only 3% of services were located within the public sector. The estimated number of patients who received care during the year was 46,347. This is approximately 18% of the need identified earlier in Study One. Availability of morphine, as a marker for palliative care, was found to be dependent on employment of and level of palliative care training of doctors and was especially poorly supplied in the rural areas. Thus, the availability of Palliative Care appears to be limited by health system factors. Study Three investigates access to palliative care in Cape Town, via two pathways 1) referral of patients requiring palliative care and 2) palliative care in their current care settings. A prospective cohort study over six months followed up 162 participants from three groups: 1) patients with metastatic cancer; 2) patients living with HIV with a CD4 count of < 200 cells/mm3 ; and3) patients diagnosed with motor neuron disease (MND). A questionnaire and a validated patient-reported outcome scale, the African Palliative Care Association (APCA) African Palliative Outcome Scale (POS), was administered at first visit. Thereafter participants were followed up telephonically once a month. Few patients (5%)were referred to palliative care services even though a significant number of patients died during the course of the study, indicating a failure to access palliative care when needed. Patient outcomes for people living with HIV improved significantly whereas the majority of patient outcomes in the cancer and MND groups did not improve. Thus, the accessibility of palliative care to patients already in the health system appears to be poor, except when palliative care is integrated into primary care, as is the case for patients with HIV on ARV treatment. Study Four evaluated the quality of care delivered to patients requiring palliative care in accredited hospice and non-hospice non-governmental services in five of the nine provinces of South Africa. A survey was conducted with 459 patient participants and 253 family members who were followed up over a 4-6 week period. Perceptions of quality care were explored through narrative questions and patient-reported outcomes were assessed using the APCA African POS. The results show significant improvement in patient reported outcome measures in both hospice and non-hospice groups, with pain and worry showing the most improvement. Content analysis of the narrative questions identified 5 themes: Quality of Care, Place of care, Staff values and attitudes, Information-sharing and Problems experienced by participants Conclusion: The thesis presents evidence that despite nominal commitment by the state, palliative care is not yet implemented as part of the right to health in South Africa. The need is great but availability of palliative care services is insufficient to meet the need. Access is poor even where palliative care is available but is facilitated by integration of palliative care into primary care services. However, when access is achieved, quality of care is generally good and patient outcomes improve over time with evidence that palliative care values patients as individuals. The study considers concepts relating to dignity and human rights in health as core to both human rights and palliative care. Implications: In South Africa, the planned National Health Insurance Policy lists palliative care as a service in the primary health care setting. In addition, a National Palliative Care Policy has been approved with strategies to integrate palliative care into public health facilities. As General Comment 14 has proved useful for the thesis, for the future, it may also provide a framework to monitor state accountability on the basis of Availability, Accessibility, Acceptability, and Quality of palliative care that can be transferred to other countries.

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