Putting mental capacity on the map
Alison Douglass, 2014 New Zealand Law Foundation International Research Fellow
Gaps in the law protecting people with impaired decision-making capacity have been brought out into the open in a ground-breaking Law Foundation-backed study.
Barrister Alison Douglass’ 2016 report has put the concept of “mental capacity” on the radar of our lawyers and clinicians.
Her work, and an accompanying practical clinical and legal “toolkit” for health practitioners on assessing capacity, has generated huge practitioner interest and made her the recognised New Zealand legal authority on the subject.
“Until now, mental capacity was not recognised as a field of legal practice in New Zealand, yet whether people can make decisions for themselves is the underlying premise of our adult guardianship law and the right to give or refuse consent under the Code of Patients’ Rights,” Alison says.
“The report drew attention to the rights and interests of people who are vulnerable for reasons such as dementia, learning disabilities, mental illness or acquired brain injury. It concerns whether a person retains decision-making ability and, if not, who should decide on their behalf and on what basis.”
She says her report highlights the need for a mental capacity code of practice in New Zealand, and for better education of doctors and lawyers, as well as social workers and others on mental capacity issues.
“Mental capacity law has roots in traditional medical law, but now has a much stronger human rights focus – this can be seen through legal developments in the equivalent English law, the Mental Capacity Act 2005, as well as the impact of the UN Convention on the Rights of Persons with Disabilities, ratified by the New Zealand Government in 2008.”
Alison’s expertise is in demand – her toolkit, co-authored with a psychiatrist and an ethicist, is now widely used by clinicians, and she is preparing a mental capacity e-learning resource for doctors. She advises clinicians on the subject at seminars and other forums here and overseas, and she has written a chapter on mental capacity in Cole’s Medical Practice, the “bible” for new medical graduates. She is on an expert reference group that will use the toolkit to guide clinicians on applying a new compulsory treatment law for substance addiction that begins in 2018.
The toolkit is of interest internationally because it puts the concept of supported decision-making under the UN Convention into practice, taking into account cultural influences such as tikanga Maori, and emphasising the need to engage people in the capacity assessment process.
She says there has been an “overwhelming response” to the study from social workers, nurses, doctors, rest home managers, families and others involved in health and disability care.
“They see how the adult guardianship law is no longer fit for purpose. I receive phone calls and emails most weeks from a wide range of people who throw up the problems and complexities of dealing with a clunky, out of date law.”
Alison says New Zealand’s adult guardianship law, the Protection of Personal and Property Rights Act 1988 (PPPR Act), needs to be urgently updated. “Thirty years on, the range of people to whom the PPPR Act applies and the social environment are very different. The current legal framework is 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 dementia.”
She says 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 not subject to mental health legislation. There would also be efficiency gains in having legal safeguards to help people with impaired capacity and their families navigate the health system.
She also identifies a gap in the law for allowing participation in research by adults incapable of giving informed consent, an issue that the Health and Disability Commissioner is now consulting on. The English law provides a useful model that would allow ethically sound research while also protecting the interests of research participants.
“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.
“The recent amendments to the PPPR Act, which change the Enduring Powers of Attorney forms, are an example where piecemeal changes have resulted in the law becoming too complex – doctors, and even lawyers, are struggling with the changes, let alone the public. Policy-makers need to think about a clear and precise law 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 a review of the PPPR Act.”
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.”
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.
Her research involved comparative analysis of the English Mental Capacity Act 2005 and its Code of Practice. She interviewed key people involved in UK mental capacity law, including the judiciary in the specialised Court of Protection.
The clinical toolkit was co-authored by consulting psychiatrist Dr Greg Young and Otago University bioethicist Professor John McMillan. It was informed by a survey of doctors in Wellington and the Hutt Valley and GPs nationally.
She says the toolkit is a first step towards national guidance for clinicians who are responsible for assessing mental capacity, and is especially helpful to those who do mental capacity assessments infrequently.
Alison’s study was made possible by winning the 2014 New Zealand Law Foundation International Research Fellowship, the country’s leading legal research award. “I am very grateful to the Foundation for this award, which enabled me to step outside my busy legal practice, meet and work with some incredibly interesting people, and look at the wider legal system on this issue. It has enriched my working knowledge of the law,” she says.