We must help vulnerable people to make the best decisions
New legal measures will bolster rights of those with diminished decision capacity
A person whose decision-making capacity is in question should be as free as anyone else to make decisions. The Assisted Decision-Making Capacity Act will help. Photograph: Bryan O’Brien
“Do you know where you are?”
“Do you know what date it is?”
“Can you name the Taoiseach?”
“Can you spell ‘world’ backwards?”
These questions are from the traditional mental status examination. They are an example of how not to assess the decision-making capacity of someone with an intellectual disability, mental illness, dementia or acquired brain injury.
A person whose decision-making capacity is in question should be as free as anyone else to make decisions. The legal starting point is a presumption that every person has the capacity to make decisions about their resources and personal affairs free of intervention, until the contrary is shown.
This approach is set out in law in the Assisted Decision-Making Capacity Act that was passed by Oireachtas at the end of 2015. It will introduce far-reaching changes to the way that we support adults who have difficulties with their decision-making.
How then – under the new Act – will it be shown that a person has lost the capacity to make such decisions? It is not by the sort of traditional mental status examination outlined above.
Nor is it by the “outcome” approach, which supposes that if what I want to do is objectively unwise, then I must lack the capacity to decide to do it. The logic of this approach is for example that if you decide to leave hospital against medical advice and to throw your medication in the bin then, because this is such a bad idea, your decision-making capacity is by implication faulty.
Instead, the 2015 Act introduces a test of capacity to make a specific decision at a particular time. This functional test of capacity is new in law but it has been used before. For example it was adopted by Ms Justice Laffoy in the High Court in a 2008 case concerning a patient’s refusal of a blood transfusion on religious grounds.
This test simply asks: at the time that a specific decision is to be made, is a person able to understand the nature and consequences of that decision? In other words, in making the decision, is the person able to understand the options, to weigh them up and then to communicate his or her wishes?
On this assessment, you might lack capacity to make a particular decision today but not next week. You might be able to consent to have root canal treatment or to go on holiday with your sister, but you might not have capacity to sell the farm which you have inherited.
What then if you are found to lack capacity to make the decision in question? The 2015 Act provides for a graduated system of supports, or “interveners” to assist the relevant person.
At the upper end of need, this may lead to the appointment by the Circuit Court of a “decision-making representative”. All interveners must endeavour to ascertain and give effect to the person’s will and preferences. The guiding principles of the Act emphasise minimal intervention, and due regard to a person’s right to bodily integrity, privacy and autonomy.
These echo the key principles of the United Nations Convention on the Rights of Persons with Disabilities, which the Government plans shortly to ratify.
There are steps which any adult can take while they have full capacity to prepare for the possibility that at some future point they will not. The 2015 Act develops new procedural measures in relation to:
– Enduring powers of attorney: these allow an adult who has full capacity to appoint a trusted relative or friend to step in and make important decisions on their behalf if this becomes necessary in the future;
– Advance healthcare directives: introduced for the first time, these enable an adult with capacity to state their wishes with regard to future medical treatment, including life-sustaining measures, and to appoint a representative to ensure that these wishes are observed.
Responsibility for much of the implementation of this will rest with a new office within the Mental Health Commission called the Decision Support Service (DSS). Intensive work is under way to make the DSS fully operational. An inter-departmental steering group was established in 2016 and significant preparatory work has already been carried out, particularly with regard to writing draft codes of practice for professionals and interveners.
The changes brought about by the 2015 Act and the Decision Support Service will have significance for all those caring for and advising vulnerable people and their families. It will affect the work of healthcare and social care providers, lawyers and financial professionals.
We are an ageing population, with longevity and levels of age-related cognitive impairment increasing all the time, so these are changes which could reach into every home in Ireland.
Áine Flynn is the recently appointed first director of the Decision Support Service