Human Rights and Empowerment in Aged Care: Restraint, Consent and Dying with Dignity

Abstract

The aged care system in Australia is in crisis and people living with dementia are especially vulnerable to breaches of human rights to autonomy, dignity, respect, and equitable access to the highest quality of health care including meeting needs on account of disability. To be powerful advocates for themselves and others, people with dementia and the wider community with vested interests in quality aged care must be informed about their rights and what should be expected from the system. Prior to the Australian Royal Commission into Aged Care Quality and Safety, the Empowered Project was established to empower and raise awareness amongst people with dementia and their families about changed behaviours, chemical restraint, consent, end of life care, and security of tenure. A primary care-embedded health media campaign and national seminar tour were undertaken to meet the project aims of awareness-raising and empowerment, based on 10 Essential Facts about changed behaviours and rights for people with dementia, established as part of the project. Knowledge translation was assessed to examine the need and potential benefit of such seminars. We demonstrated that this brief educational engagement improved community knowledge of these issues and provided attendees with the information and confidence to question the nature and quality of care provision. With the completion of the Royal Commission and corresponding recommendations with government, we believe the community is ready to be an active player in reframing Australia’s aged care system with a human rights approach.