Nurses can promote the rights of PLHIV by encouraging and supporting them to plan for their future care needs and treatment wishes, especially regarding end-of-life care and quality of life.
The meaning of ‘quality of life’ is personal and unique to everyone, encompassing physical, psychological, and social domains. It is now included as a goal in some national HIV targets (35, 36). HIV-related stigma and discrimination adversely affect quality of life (37, 38) along with other psychosocial determinants of quality of life (39).
Advance care planning addresses future healthcare needs and preferences. It records people’s preferences about treatment and care decisions about care if they are no longer able to communicate these, in a clear statement to guide health professionals. Documents can include:
- Advance Care Directive
- Enduring power of attorney (medical treatment) or substitute decision-maker. (Terms can vary depending on the state or territory) (40).
While the lifespan of people with HIV on treatment is now close to that of HIV-negative people, end-of-life issues arise that require careful ethical deliberation and professional judgment. Nurses may care for patients who:
- question whether and when to stop antiretroviral therapy.
- face ‘not for resuscitation’ decisions.
- request assisted suicide.
- request voluntary assisted dying (VAD), where a person has medical assistance to end their life due to intolerable suffering.
These issues have both legal and ethical ramifications. Assisted suicide is illegal in Australia, and VAD is legal in all Australian states (but not territories), with strict criteria and controls. A strong grounding in ethics and ethical decision-making can assist nurses in navigating such issues with clients. Specialist advice and referral should be sought for PLHIV who raise these issues. See End of Life Directions for Aged Care for more information.