Palliative care is mentioned only once in the National Strategic Plan, within a sub-objective indicating a commitment to keeping people with HIV, STIs and TB within the healthcare system and adherent to treatment. There is, however, no recognition of the fact that that some people living with HIV will experience declining health that will lead to death, or that the mortality rate for people with HIV remains high, especially if they are co-infected with TB.

Although the plan recognises the importance of providing care and support, thus far it has not included specific indicators for such interventions. The Hospice Palliative Care Association (HPCA) believes that a comprehensive response to healthcare needs must include such indicators and is campaigning for their inclusion in the NSP. If the plan does not make reporting compulsory, there is a risk that such interventions will be regarded as less important. They may also be neglected within the competing demands of the health system.

The NSP refers frequently to the importance of providing comprehensive care and support, but we argue that it has failed to recognise how individuals experience living with HIV and TB. Many patients are faced with distressing symptoms as well as emotional and existential anxiety. It is therefore important that personal challenges are addressed in public health planning. The HPCA recommends that three specific care and support indicators be included in the NSP: 1) pain assessment and management, 2) referral to community-based care and support services, and 3) An annual audit on the quality of care support.

The first of these indicators – pain assessment and management – is vital because pain is one of the most debilitating and distressing symptoms encountered by many patients with chronic illnesses, including HIV. Studies of patients on highly active antiretroviral therapy (HAART), for example, have shown that between 31% and 74% experience pain, and this can interfere with normal functioning and daily life. A study of indicators to measure pain management in patients with HIV (conducted by the University of Cape Town and commissioned by UK Consortium on AIDS and International Development) has suggested that the prescription of analgesics could be a useful workable indicator of care.

The second key indicator we would like to see included in the NSP is the referral of patients to community-based care and support progammes. This too is a simple way to monitor and measure care and will help to ensure that HIV patients receive continuity of care. The monitoring of support will also be possible at a household level.

Recent research has shown that a worrying number of people are still lost to treatment, even when they receive good facility-based HIV care. Providing support at the household level, as studies have shown, can help to improve levels of retention in care. Recognising the importance of this, one of the objectives of a new HPCA project – the Care and Support for Improved Patient Outcomes (CaSIPO) – is to integrate comprehensive palliative care and support into government initiatives. Doing so will enable us to work together with government and civil society partners to create a more integrated referral and retention system. The project aims to ensure that patients are enrolled into care and treatment programmes following their HIV diagnosis and given access to a continuum of high quality Comprehensive Care and Support – Palliative Care (CCS-PC) services.

Maintaining optimal health and improving quality of life are important palliative care goals, even when patients are living with chronic illnesses. Palliative care is provided in conjunction with active treatment such as HAART, TB treatment. Palliative care also provides symptomatic treatment to address distressing symptoms and comfort care at the end of life, while working towards the goal of zero deaths. The NSP should clearly acknowledge the current reality of HIV mortality and make provision for end-of-life palliative care. While Intervention 3.2.1 of the NSP refers to the “appropriate referral for side effects or specific needs, including palliative care”, the commitment to such services needs to be more explicitly stated.

It is important that people experiencing progressive illnesses also receive good quality care and that they are not abandoned by South Africa’s healthcare system. An audit of quality of care using internationally-validated patient reported outcome measures is the third key valuable indicator that we believe should be included in the NSP. Doing so will help the government  to improve the quality of the healthcare support it provides.