What is palliative care, and why does it matter now?

The advent of antiretroviral therapy has brought greatly reduced morbidity and mortality among people living with HIV disease. Unfortunately, it has also meant that we often focus on the clinical aspects of therapy and viral suppression to the exclusion of the enduring principles of palliative care: attention to the physical, emotional and spiritual distress of those patients and families affected by life threatening disease.

The WHO definition of palliative care is as relevant now as it was in the early days of the epidemic (see box 1). For people with advanced HIV in the 1980’s and early 1990’s, good terminal care was the best that could be hoped for when advanced stages of the disease were reached. During this time, a number of day centres, community services and specialist HIV hospices were developed. As the benefits of antiretroviral therapy were identified, the focus of care shifted to an emphasis on viral suppression. However, there are five important reasons why palliative care should be available from the point of diagnosis within the modern multiprofessional HIV care team.

Firstly, a significant proportion of HIV-infected individuals are unaware of their diagnosis, and present only with advanced disease. For these patients, palliative approaches to advanced disease management need to be incorporated with antiretroviral treatment options. For patients with advanced disease and severely compromised immune function, the challenges of immune reconstitution syndrome may further necessitate a joint approach between HIV medicine and palliative care teams. For these patients, antiretroviral therapy may be followed by a period of severe ill health as the immune system begins to increase its capacity to respond to infections within the body, infections that to date have been allowed to flourish unchecked.

Second, globally people with HIV continue to die at a higher rate than the uninfected (Sabin), and the virological failure rate with first- and second-line therapy remains a risk (Tamalet; Dragsted). Treatment failure or non-adherence can lead to progressive immunological failure and the development of life-threatening consequences. Therefore, the availability of antiretroviral therapy has not taken away the need for the historically defining feature of palliative care, i.e. high quality end-of-life care for those who need it, with the aim of providing a “good death”. However, terminal care is less often required in resource-rich countries with universal access to antiretroviral therapy compared to resource poor countries.

Third, pain and other distressing symptoms may be experienced from relatively early in the disease trajectory, and antiretroviral drugs are associated with a significant rate of toxicities and side-effects (Heath) such as peripheral neuropathy and gastrointestinal problems. The availability of therapy has increased the need for specialist palliative care staff who can assess and treat the distressing symptoms associated with new therapies. The experience of symptom burden may compromise the ability to adhere to drug regimens as well as have a negative impact on the patient’s quality of life. Such pain and symptom problems may be present from relatively early stages of infection, and involvement of palliative care is therefore appropriate for symptom control at any stage from the point of diagnosis.

Fourth, some HIV-related malignancies such as non-Hodgkin’s Lymphoma, cervical carcinoma and colorectal and lung malignancies have not declined in incidence with HAART (Matheny; Yeguez; Powles). For patients whose cancers are not responsive to curative approaches, then the traditional terminal cancer care aspects of palliative care will be necessary. It is also required to support individuals through potentially curative cancer treatment, for cancers such as Non-Hodgkin’s Lymphoma, anal squamous cell cancers, and Kaposi’s Sarcoma.

Fifth, as a result of survival prolongation, new co-morbidities have become apparent such as end-stage liver disease secondary to Hepatitis C co-infection, myocardial infarction (Mary-Krause), and cerebrovascular disease (Rabinstein). Since its inception in the UK in the 1960’s, the modern palliative care movement and the medical discipline of palliative medicine, have made significant contributions to patient care beyond malignant (i.e. cancer) care into other life-limiting diseases that are likely to be presented by patients. Patients may also require the spiritual and psycho-social support services of palliative care to help in coming to terms with their changing morbidity and mortality with respect to an uncertain prognosis.

For these reasons, the WHO has declared palliative care to be an essential component of the package of care for people living with HIV/AIDS in both resource-rich and resource-poor settings (SEE BOX2). However, the proportion of care that is symptom control, care for co-morbidities and terminal care will vary according to the country and availability of health care resources (e.g. diagnostic and curative cancer therapies, and antiretroviral therapy).

The World Health Organisation (WHO) definition of palliative care (2005a):

“an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

The WHO statement on palliative care in HIV (2005b):

“Palliative care is an essential component of the package of care for people living with HIV/AIDSbecause of the variety of symptoms they can experience- such as pain, diarrhoea, cough, shortness of breath, nausea, weakness, fatigue, fever and confusion. At the community level, lack of palliative care places an unnecessary burden on hospital or clinic resources”.

The World Health Organisation (WHO) definition of palliative care (2005a):

“an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

The WHO statement on palliative care in HIV (2005b):