Submission to Stage 1 Public Consultation: Foundations of a new Aged Care Act

Human Rights Watch welcomes the opportunity to make a submission to the Public Consultation: Foundations of a new Aged Care Act. Our submission focuses on the Statement of Rights and Supported Decision-Making Principles.

Consultation Question 7: Are there any rights that you think we missed that should be included?

The right to free and informed consent

The right to free and informed consent should be included in the Statement of Rights.

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.

Human Rights Watch has documented the widespread use of chemical restraint in aged care facilities.[1] “Chemical restraint” is the use of medications to control the behavior of aged care residents without a therapeutic purpose. 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.

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.[2] 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,[3] 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.[4]

The Department of Health and Aged Care should 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.

Recommendation:

The new Aged Care Act should guarantee the right to free and informed consent for all examinations, diagnoses, treatment and interventions.

Consultation Question 8: Are there any rights that you think should be worded differently?

Freedom from inappropriate use of restrictive practices

We welcome the inclusion of a right to freedom from restrictive practices. However, it is unclear in the current wording on what basis and which practices are considered “inappropriate.” All use of chemical restraints should be prohibited. Aged care facilities should instead develop individualized support for older people experiencing emotional distress or pain that do not involve restraints.

Human Rights Watch has documented the widespread use of chemical restraint in aged care facilities.[5] Chemical restraint is the use of medications to control the behavior of aged care residents without a therapeutic purpose. In addition to the physical, social, and emotional harm for older people restrained with these drugs, the use of these drugs in older people with dementia is also associated with an increased risk of death.[6]

Policies that fall short of an outright ban on the use of restraints to modify behavior fail to protect older people’s rights. Despite regulations first introduced in 2019 to minimize the use of restrictive practices,[7] Human Rights Watch’s review of non-compliance reports for aged care facilities across Australia from July 1, 2020, to June 30, 2021, found use of chemical restraints in more than 150 aged care facilities.[8] Some aged care facilities which did not meet compliance standards failed to regularly monitor the use of drugs that are administered for chemical restraint, failed to provide individual care plans with ways to manage behavior without the use of chemical restraints, and did not provide alternative strategies to ensure that chemical restraint is a last resort.

Alternative strategies to chemical restraint that could be used include individualized support for older people experiencing emotional distress or pain that does not involve restraints. The use of chemical restraints in aged care homes is closely related to inadequate staffing and training. A key recommendation of the Royal Commission into Aged Care Quality and Safety was to set out minimum staffing times for qualified staff in aged care facilities.[9] The Covid-19 pandemic exacerbated the existing strain on age care staffing.[10]

Recommendations:

1. The new Aged Care Act should prohibit all use of chemical restraints.
2. The new Aged Care Act should include adequate minimum staffing levels to provide support to older people.
3. The new Aged Care Act should include mandatory training for all aged care facility staff in dementia and alternative methods and skills to de-escalate unwanted behavior and support the needs of people with dementia.

Supported Decision-Making Principles

There is a note at the end of the third bullet point under the [supported] decision-making principles on page 43 of the consultation report: “Note: a representative nominee may override the person’s will and preferences only where necessary to prevent harm.”

It is unclear whether this note applies only to the third bullet point, that is where it is not possible to determine what the older person would likely want or also to where the older person’s views, wishes and preferences are known.

Even where it is not practicable to determine someone’s views, wishes and preferences, the CRPD Committee has stated that, “the ‘best interpretation of will and preferences’ must replace the ‘best interests’ determinations. …The ‘will and preferences’ paradigm must replace the ‘best interests’ paradigm to ensure that persons with disabilities enjoy the right to legal capacity on an equal basis with others.”[11] Protection from harm should never substitute an older person’s will and preferences or the best interpretation of them, unless the same action would be taken for any person, regardless of age, cognitive ability or other status. 

Recommendation:

The new Aged Care Act should ensure that protection from harm should never substitute an older person’s will and preferences or the best interpretation of them, unless the same action would be taken for any person, regardless of age, cognitive ability or other characteristic.