End-of-life care

End-of-life planning is important and relevant for all people with HIV infection. Planning and advance care directives have been shown to improve care for patients and psychosocial outcomes in surviving relatives. [139, 140] HIV infection can complicate care at the end of life but past research in other contexts has indicated that people with HIV infection were less likely to discuss advanced care directives than others with serious illness. [141, 142] A focus on quality of life as a key component of HIV management at all ages should facilitate discussion and empower patients to be clear about their wishes. Formal advanced care directives would be a natural extension of an ongoing conversation with older people with HIV infection concerning their priorities. The continuity of HIV care in many Australian health settings will underpin this approach. In a multicultural context, advanced care planning has proved to be equally as acceptable in non-English speaking people in comparison with those with English speaking backgrounds. [143]

In the context of end-of-life care, decisions around cessation of ART require careful consideration. The clinical benefits of ART are undisputed – prevention of disease progression, both AIDS defining illness and non-AIDS events; suppression of HIV replication and associated immune activation and chronic inflammation; and prevention of HIV transmission. The cessation of ART may relieve ART-associated adverse effects and the  potential for drug-drug interactions but also represents a significant step for people with HIV infection and their partners/family. The viral rebound associated with cessation of ART may also lead to discrimination in the high intensity care setting. It is important to weigh up the benefits and disadvantages of ART cessation to the individual in this context.

Key recommendations

  1. End-of-life planning, including advanced care directives, is encouraged to be discussed by the HIV care physician with all older people with HIV infection, as it has been shown to improve care for patients and psychosocial outcomes in relatives.
  2. Ongoing discussion between patient and HIV care provider, which places strong emphasis on the maintenance of quality of life, is suggested.
  3. Those persons with a disease trajectory that may succumb to chronic disease and/or terminal illness should be identified early, in order to institute referral to palliative care services and other supports.