Moving away from paternalistic decision making

The Assisted Decision Making (Capacity) Bill 2013 marks a move away from a paternalistic decision making approach for people seen to have impaired mental capacity to supporting their will and preferences, Dr. Piers Gooding told a meeting of the HMI West region.  Maureen Browne reports.

Dr. Piers Gooding
Dr. Piers Gooding

The Assisted Decision Making (Capacity) Bill 2013 marks a move away from a paternalistic decision making approach for people seen to have impaired mental capacity to supporting their will and preferences, Dr. Piers Gooding told a meeting of the HMI West region.

“It also applies a common standard of mental capacity to everybody. It moves away from specialised law for specialised groups and applies to all of us equally, which is good, as we could all potentially end up in situations where these powers would be necessary, as we are all vulnerable to sickness, age and injury.”

Dr. Gooding, a Postdoctoral Research Associate at the Centre for Disability, Law and Policy, National University of Ireland, Galway, was speaking on the implications for service providers of the new Bill which is scheduled to become law next year.

He said it was important to realise what the Bill did not cover for people who may need decision-making support. It did not cover those under the age of 18, voting, consent to sex, mental health treatment, or marriage.

“There is a real emphasis on abandoning the idea of working in the ‘best interests’ of adults, which is now seen as treating them like children and replacing it with a system which will support the will and preference of the people involved.”

Instead, it provided for a suite of different support categories for people who might need decision making support. It also establishes safeguards and a clear structure for assisting people who may need decision-making support.

“There is a real emphasis on abandoning the idea of working in the ‘best interests’ of adults, which is now seen as treating them like children and replacing it with a system which will support the will and preference of the people involved. This does not mean abandoning people to make catastrophic mistakes and suffer terrible consequences. It is about providing support and accessible information in ways that give people with disabilities, older persons and so on, the same rights as everyone else and that includes making unwise decisions.

The capacity test used under the current Bill stipulates that people understand their decision, that they understand the information, can remember the information, can use or weigh the information and communicate the information.

“The capacity assessment in the Bill differentiates between unwise decisions, which we are all free to make and decisions which might have catastrophic results. If an adult wishes to eat cake instead of vegetables the Bill affirms that they can do so. However, if they want to run out on to the road in front of a car without appreciation of the grave risk involved, there is scope for intervention.

The idea of the test of mental capacity is that it applies to everyone, whether they have impaired mental capacity or not. The previous legislation, (The 1896 Lunacy Act), was a very outdated response where people who were deemed “lunatics” could have decisions made on their behalf. The new Bill takes away the use of a category such as disabled and applies the mental capacity test which is seen to be non discriminatory.

Dr. Gooding said guidelines on any intervention were important. Interventions must be necessary, be the least restrictive option and respect the person’s rights and dignity.

“The Bill really emphasises that the person must participate in the intervention. If they are forbidden from running on to the road and to stay on a particular property, other aspects of their wishes and preference must be taken into account. There needs to be constant attempts to try and ensure that the person can understand the intervention and the provider and family should do continuously try to ensure that the person’s wishes are met and that includes talking to somebody who knows them well.

“If a person is concussed and in hospital and in a coma in a non emergency situation, health providers would be encouraged to speak to everybody who knew the person well about matter such as life support and blood transfusions. That applies to persons with intellectual disabilities and older persons. In the new Bill there is a single set of criteria for decision-making ability that does not formally discriminate on the grounds of intellectual disability, mental health issues, autism, acquired brain injury, Alzheimer’s and so on.

Dr. Gooding said that the Bill provided for a number of different types of intervention.

“The least restrictive is an informal decision maker who does not have any particular formal appointment. This is meant to refer to families who may be in a situation where they are making day to day decisions for persons who may require report. This category of informal decision makers are protected on the basis that they can say they believed the person for whom they are making decisions lacked capacity.

“The second category is very important for service providers. It is a decision making assistant, who will provide decision making support for the person, including helping them to understand a question, to see the range of available options and communicate his or her will and preference. A person with a disability or who may require support to make decisions can appoint a decision making assistant. This can be a service provider or family member.

“A decision making assistant will be very useful for expressing peoples’ preferences with regard to matters like banking, health decisions, shopping or financial decisions. They could represent a person in paying bills or signing up for a gym. They have a legal role in supporting the individual.

“The third category is slightly more restrictive. It involves a co-decision making agreement where the relevant person and someone they appoint make decisions together about particular matters such as financial decision making. For example, both people would need to sign-off on banking decisions.

The fourth category is the decision making representative. This is another and the most intensive form of intervention. It applies where somebody is seen to lack capacity and no less restrictive option is available. In these cases decisions would be made on behalf of the person but emphasising the wishes and preferences of the person and seeking to explore these at all times.”

“It is important to say that the earlier these kind of agreements are entered into, the more time it gives the people involved to plan and make their wishes and preferences known.”

Dr. Gooding said that powers of attorney were also provided under the Bill. ‘As with all law,’ he stated, ‘the devil will be in the detail’ and further information that will be very important for service providers will be contained in a code of practice which would accompany the Bill when it goes to its final stage.