Submission to the Independent Expert on the Enjoyment of All Human Rights by Older Persons on Legal Capacity and Informed Consent

Introduction

This submission on informed consent is based on Human Rights Watch’s research on the use of chemical restraints in aged care facilities carried out between 2018 and 2021 in Australia.[1] Chemical restraint is the use of medications to control the behavior of aged care facility residents without a therapeutic purpose.

This submission responds to questions 1, 4 and 9 of the Independent Expert’s questionnaire.

Right to free and informed consent

Individuals should only be examined, diagnosed or receive medication after they have given their free and informed consent in accordance with international human rights standards. Informed consent requires a decision based on a discussion of the purpose, risks, benefits, and alternatives to a medical intervention, as well as the absence of pressure or coercion in making the decision.

Question 1: Is there national legislation or a policy framework that addresses issues of decision-making autonomy, legal capacity and informed consent for older persons?

Australia’s Quality of Care Amendment (Restraints Principles) were introduced in mid-2019 to minimize the use of restrictive practices, with updated regulations introduced to replace them on June 30, 2021.[2] The regulations fall short of an outright ban on the practice but require informed consent for the use of a “restrictive practice.”[3] Human Rights Watch’s review of non-compliance reports for aged care facilities across Australia from July 1, 2020 to June 30, 2021 found the misuse of chemical restraints in more than 150 aged care facilities, despite these regulations.[4] 

Laws on informed consent are complex in Australia and governed by state and territory legislation.[5] Australia is currently drafting a new Aged Care Act and released the Exposure Draft - Aged Care Bill 2023 for public consultation in December 2023.[6] The government’s “aim is to create a simplified, rights-based legislative framework, comprised of a single piece of primary legislation and a single set of rules (subordinate legislation), that focuses on the needs of older people.”[7] While the Exposure Draft includes the right to “[i]ndependence, autonomy, empowerment and freedom of choice” in Chapter 1, Part 3, Division 1, Section 20, it fails to include the right to free and informed consent for all examinations, diagnoses, treatment and interventions. The draft also fails to prohibit all use of chemical restraint.[8]

The United Nations Convention on the Rights of Persons With Disabilities (CRPD), which Australia ratified in 2008, requires informed consent for examination, diagnosis, medical treatment and interventions.[9] The CRPD Committee has determined that treating an adult with medications without consent is a violation of the right to equal recognition before the law,[10] the right to personal integrity, and the right to freedom from violent exploitation and abuse, as well as the right to freedom from torture and inhuman and degrading treatment.[11]

Question 4: What (formal and informal) challenges do older persons face in the exercise of their legal capacity and in which contexts?

Human Rights Watch has documented the widespread use of chemical restraint in aged care facilities and how aged care facilities in Australia fail to obtain informed consent when giving older people antipsychotic drugs as chemical restraints.[12] As best as Human Rights Watch could determine, staff in the aged care facilities where we conducted research did not seek or secure informed consent prior to giving these medications.  

In addition, family members who had powers of attorney (legal authority to act on another’s behalf) to make decisions on behalf of their relatives in aged care facilities told Human Rights Watch that facility staff did not seek their informed consent for the medications used as chemical restraints. Many relatives said they only learned that their relatives had been given medications after they received pharmacy bills listing the medications.

Question 9: What channels exist for older persons to seek redress for the denial of their right to exercise their legal capacity or informed consent?

Human Rights Watch found that the existing model of complaints did not appear to be uniformly addressing the complaints of older people in aged care facilities in Australia to a unified, high standard.[13]

People can make complaints about treatment, conditions, or other issues in aged care facilities to the Aged Care Quality and Safety Commission (ACQSC), the primary government agency responsible for monitoring aged care in Australia.[14] It receives complaints and accredits according to the Aged Care Quality Standards for Australian government-funded aged care services by accrediting, assessing, monitoring, and resolving complaints received regarding subsidized aged care services.

“Marie’s” 99-year-old mother had been given risperidone without her knowledge or informed consent in a facility on the Gold Coast. She had additional complaints about the facility using a physical restraint and inadequate numbers of staff to support residents to eat at mealtimes. Marie told Human Rights Watch about her experience when she called to file a complaint in 2016:

I rang up the Queensland Aged Care Ombudsman [now the Aged Care Quality and Safety Commission]. They were so rude I was in tears. They said, “You’ve got three [complaints], and you can only have one,” and she was angry. She said, “Make up your mind! You can have just the [complaint about] risperidone, the restraint on your mother’s stomach, or not feeding her.” It was cruel. I just left it.[15]

Recommendations

Governments, including Australia, should:

1. Ban all use of chemical restraints
2. Require a standardized protocol for obtaining free and informed consent from the individual whose care is concerned, including with support as needed in the decision, or the appointed representative of the older person, as long as this representative is chosen freely and tasked with reflecting the individual’s will and preferences before, during, and for the continuation of medical treatment
3. Ensure meaningful penalties for failure to obtain informed consent
4. Develop and implement models of supported decision-making to enable people using care and support services to make their own decisions about treatment and care.