Page 4205 - Week 13 - Thursday, 19 November 2015
The amendments to the Powers of Attorney Act allow enduring attorneys, like guardians, to make decisions about medical research. The bill does this by allowing a person to authorise their enduring attorney to make decisions about medical research matters. If the power of attorney is made prior to these amendments, and the enduring attorney is authorised to make decisions about healthcare matters, the bill allows the enduring attorney to also make medical research decisions. This is aimed at providing recognition and equality before the law to all people with impaired decision-making capacity regardless of whether they appoint an enduring attorney to make medical research decisions on their behalf.
In order to protect the rights of people with impaired capacity to consent, the bill introduces safeguards into the Powers of Attorney Act and the Guardianship and Management of Property Act. These safeguards must be followed by guardians and enduring attorneys when making decisions about medical research. They require, for example, the medical research to be approved by a human research ethics committee and the potential benefit to outweigh the risk or inconvenience to the patient or the patient’s quality of life. In addition, the decision-maker must not consent if the patient is likely to regain capacity before the latest time at which the patient may meaningfully participate in the research. This is intended to provide the maximum opportunity for the patient to regain capacity if possible, while taking into account any critical timing for the research.
To assist the substitute decision-maker with this process, the bill includes a mechanism for the enduring attorney or guardian to seek the assistance of the ACT Civil and Administrative Tribunal. An interested person, such as a relative or close friend of the patient, may also apply to the tribunal for a review of a decision about medical research.
To clarify the position in relation to medical research decisions made by a third class of substitute decision-maker—that is, health attorneys—I am proposing further amendments to the Guardianship and Management of Property Act in this bill. Health attorneys are close relatives or friends of a patient appointed by a doctor to make relatively urgent medical decisions in the absence of a formally appointed decision-maker. The bill clarifies that health attorneys are not able to make decisions about medical research unless the research is low risk.
Low risk research poses no foreseeable risk of harm to the patient and does not change the treatment appropriate for the patient’s condition. As is the case for medical research decisions made by guardians and enduring attorneys, the bill introduces safeguards to protect the patient’s rights in the context of low risk research decisions made by health attorneys. The research must be approved by a human research ethics committee and the decision must be compatible with the patient’s wishes.
The bill requires all substitute decision-makers to give effect to the patient’s wishes when considering whether to consent to the patient’s participation in medical research. This may involve considering a health direction stating the patient’s wishes to withdraw from or refuse a particular type of medical treatment, or medical treatment generally.