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.

Applying a Human Rights-Based Approach to Formal Care and Support Provided in the Home: A Narrative Review

“…Homecare workers using efective communication skills would result in an increased sense of security and well-being for service-users [61]. Te "Empowered Project" in Australia, which aimed to raise awareness about upholding human rights in aged care for people living with dementia used education and awareness-raising campaigns [62]. Tey targeted serviceusers such as families and individuals living with dementia.…”

“…Similar to aforementioned reports [57,58], Jessop and Peisah recommended that aged care and human rights were integrated and that policy-makers approach the Australian legislation pertaining to aged care using a human rights lens, with an emphasis on the concepts of dignity, respect, and preferences. Tey noted that areas most efected by a lack of a HRBA were failure to respect autonomy, failure to obtain consent in advance of administering chemical restraint, and lack of participation in decision-making [62].…”

Community-embedded follow-up management intervention for geriatric primary care: a mixed-methods study of an integrated health services model

“…However, this element often results in varying degrees of constraint when it is overly reinforced. Such over-constraints are mainly reflected in (1) the denial of autonomy to older adults, (2) the severance of social ties, and (3) dignity [ 31 ]. A large and growing body of research reports the value of older adult empowerment in achieving self-care and helping older adults manage their health and care.…”

Políticas públicas y derechos humanos de las personas mayores. Presentación

“…Este enfoque constituye un paradigma basado en el empoderamiento de las personas mayores como sujetos de derecho (Huenchuan y Piñero, 2010;Jessop y Peisah, 2021;Latorre, 2021) que disfrutan de garantías y tienen responsabilidades. Si con anterioridad, la concepción predominante en torno a las personas mayores había sido la construcción de la vejez como una etapa de carencias y vulnerabilidades, la perspectiva de persona mayor no ignora estas realidades, pero elimina la asociación forzosa entre vejez y carencias, así como entre vejez y vulnerabilidades.…”