World AIDS Day 2013- the need for palliative care is as great as ever

The effect of antiretroviral therapy is clear- for those who can access treatment, at the right time, with continued supply, full adherence, and adequate care and support services to achieve these requirements, then a near-normal life expectancy might be achieved.

The care and treatment of people with HIV in high income countries has come a long way since the pre-1996 years (when ART became available). Funders, policy makers, and clinicians often struggle to understand the relevance of palliative care in the context of ART. However, the evidence of continued and evolving need is clear. From the point of diagnosis, HIV patients experience the physical, psychological social and spiritual problems that define palliative care(1). People often present late, when a higher burden of disease is experienced(2). For those initiating therapy, challenges such as immune constitution syndrome may require careful holistic management, to enable patients to begin a life-long regimen. Palliative care can effectively manage this, even in children who may present complex needs at this time(3).

For those on ART, the burden of pain and symptoms may actually be higher due to the side effects of treatment(4). The high prevalence of pain and symptoms among HIV outpatients has been widely reported in recent years(5, 6). The clinical and public health importance of good assessment and control of pain and symptoms is reflected in the associations between their burden and sexual risk taking(7), treatment switching(8), poor adherence(9), and viral rebound(10). Pain and symptoms strongly predict quality of life among people with HIV(11). An evidence-based understanding of need and appropriate care and support must take account of these studies using patient-reported outcome measures (PROMS)- as PROMS is the most accurate way to promote quality and equity in healthcare(12). Only those living with the condition can identify what matters most- even if that includes dimensions of wellbeing often not well recognised by health systems. For example, a study of HIV/AIDS patients in Uganda found that spiritual wellbeing was the most important component of quality of life(13).

In a context of limited health resources being placed under further strain across high, middle and low income settings, there is a huge danger that HIV management will be reduced to “test and treat” services, ignoring all the evidence. The potential benefits of ART will be at risk. The further risk is that we will have a growing population of people living with HIV (due to increased treatment access and decreased mortality) but suboptimal quality of life due to uncontrolled physical and psychological symptoms. Since the advent of ART, the clinical skills that used to be practised have arguably been lost, despite a continuing presence of need(14). This is true throughout the disease from diagnosis, but probably the greatest neglect is of the dying. Research into the needs and experiences of those who die with HIV is woefully inadequate. Reports of mortality are usually seen as a footnote to studies measuring treatment efficacy and loss to follow up, rarely is death seen as an outcome worthy of research in its own right(15). Yet, 1.6 million people died of HIV-related causes in 2012, around 1.2 million of these in sub-Saharan Africa.

The WHO definition of health has not changed since the 1940’s, and this includes physical, psychological and social wellbeing. Without the inclusion of the skills and practices of palliative care, it is less likely that optimal wellbeing will be achieved at any stage of HIV disease.

Prof Harding is an internationally renowned researcher, and was honoured for his contribution to palliative care research in Africa at the APCA/HPCA conference earlier this year. His extensive publications include groundbreaking work on palliative care and HIV.