Quality of life, advance care planning and end-of-life decision-making

The meaning of ‘quality of life’ is personal and unique to each individual. HIV-related stigma and discrimination has been shown in international studies to affect quality of life negatively.[40] [41]  These findings highlight the critical importance of addressing stigma within health-care settings, where people have the right to feel and to be safe.

Nurses can be instrumental in promoting the rights of clients by encouraging and supporting them to plan for their future care needs and treatment wishes, especially around end-of-life care and quality of life.  An advance care plan can be made to prepare and record clients’ decisions about health care that they may want if they are no longer able to communicate their wishes; it is a clear statement that can guide health professionals.[42]Documents required can include an Advance Care Directive and Statement of Choices, and an enduring power of attorney (medical treatment) if the person wishes to appoint a substitute decision-maker, and a Refusal of Treatment Certificate (if there are specific treatments or care that a person wishes not to have).

While the lifespan of people with HIV on treatment is now similar to that of people who are HIV negative, challenging end-of-life issues still arise that require careful ethical deliberation and professional judgment by nurses in the course of their work. Nurses may be caring for patients who are questioning whether and when to stop antiretroviral therapy, who are facing ‘not for resuscitation’ decisions, or who may request assisted suicide.  Some of these issues have both legal and ethical ramifications, for example, assisted suicide is illegal in Australia.  A strong grounding in ethics and ethical decision-making can assist nurses to navigate such issues with clients.