News Item

People with impaired decision-making capacity need better legal protection to ensure their confinement in care arrangements is warranted, important new research has found.

Researcher Alison Douglass says urgent review is needed of New Zealand’s law protecting and promoting the rights of people with impaired ability to make their own life decisions.

“Many people with mental disabilities are unable to consent or refuse consent to medical treatment, and are restricted in making their own decisions. The law needs to be urgently updated to protect their interests,” she says.

The research identifies major gaps in New Zealand’s mental capacity law. “Liberty and freedom of movement are fundamentally important, yet currently there is no legal process governing loss of liberty for some people who lack capacity to make decisions about their health care and living arrangements. This includes people who are not subject to compulsory care under mental health law but live in secure dementia units, or are high-needs young adults with learning disabilities living in supported care in the community.

“Often there is no automatic process that reviews the lawfulness or appropriateness of their detention. Many comparable countries such as England have filled this gap in the law, but New Zealand has not.”

She says “liberty safeguards” are needed where people lack capacity to consent or are otherwise confined or detained and are not subject to mental health legislation. Further, legal rights protection needs to be extended to people taking part in research who are unable to consent to their participation.

Alison is a Dunedin barrister who specialises in health and disability law, and is appointed by the Family Court to represent people with impaired capacity. She has recently completed an 18 month review of New Zealand’s adult guardianship law concerning people with impaired mental capacity, for reasons such as dementia, learning disabilities, mental illness or acquired brain injury.

Her research, Mental Capacity – Updating New Zealand’s Law and Practice, has been published along with a practical clinical and legal “toolkit” for health practitioners on assessing capacity, co-authored with a psychiatrist and ethicist. Her study was made possible by winning the 2014 New Zealand Law Foundation International Research Fellowship, the country’s leading legal research award.

Alison’s research involved comparative analysis of the English Mental Capacity Act 2005 and its Code of Practice, and interviewing key people involved in mental capacity law in the UK, including the judiciary in the specialised Court of Protection.

She is calling for a comprehensive update of New Zealand’s adult guardianship law, the Protection of Personal and Property Rights Act 1988 (PPPR Act), to bring it in line with the UN Convention on the Rights of Persons with Disabilities. She says people should be supported to make decisions for themselves where possible, taking account of tikanga M?ori, under which values of individual autonomy and collective decision-making work alongside each other.

“Thirty years on, the range of people to whom the PPPR Act applies and the social environment are very different. The current legal framework in inadequate to respond to the explosion of elder care and the needs of older adults. Changes in the law are important now because of the aging population and prevalence of Alzheimer’s disease.”

Alison says the law is needlessly complex and unclear about two essential concepts. The first is capacity, the ‘bright legal line’ determining whether intervention is permitted in people’s lives. “There should be a single, clear test for incapacity – the PPPR Act currently includes several tests.”

The second concept is best interests, the standard for making decisions about a person who is unable to do so for themselves. “Best interests” is not a specified decision-making standard within New Zealand law, as it is in England – such a standard should be included in revised law and within our Code of Patient Rights, Alison says.

“Importantly, the PPPR Act lacks an adequate oversight mechanism. There has never been a public body that champions it and educates the public, and professionals working within the health and disability sector, about it. For the legal framework to have more integrity, a clear and precise law is needed that is accessible to all.

“A key reason for the success of the English mental capacity legislation is that it is accompanied by a Code of Practice that has greatly assisted public awareness and understanding of the law. A similar code of practice is recommended here, to accompany review of the PPPR Act.”

She says there is also a gap in the law for allowing participation in research by adults incapable of giving informed consent – the English law provide a useful model that would allow ethically sound research that also protects the interests of research participants.

Reforming the law will require a coordinated approach across the social, health and legal sectors, Alison says. “It is likely to get full support from those working within the health and disability sector who want to make positive changes that will benefit people with impaired capacity for decision-making.”

The clinical toolkit, released along with the report, is a practical guide to help GPs and other health practitioners assess an adult’s ability to make decisions. “The resource is a first step towards national guidance for clinicians who are responsible for assessing mental capacity. It will be especially helpful to those who do these assessments infrequently,” Alison says.

The toolkit was co-authored by consulting psychiatrist Dr Greg Young and Otago University bioethicist Professor John McMillan. It was informed survey of doctors in Wellington and the Hutt Valley and GPs nationally.

Link to mental capacity toolkit and the full report

Link to Nine to Noon Radio NZ National interview with Alison Douglass about her research and the toolkit

Law Foundation provided $125,000 towards this project – this was awarded to Alison Douglass as the 2014 New Zealand Law Foundation Research Fellow