Opinion: rather than presuming someone can't make their own decisions because they have a diagnosis of a cognitive impairment, we have to support them
Being able to make our own decisions is a fundamental aspect of who we are. We celebrate becoming an adult because we are then in charge of our own decision-making. Some people may however never fully gain, or may subsequently lose, this ability because of having an intellectual disability, through acquiring dementia, or being in a mental health crisis.
The new Assisted Decision-Making (Capacity) Act 2015 is designed to help and support people in these positions to make their own decisions, such as whether to accept or refuse medical treatment or where and with whom to live, as well as financial decisions. The Act is expected to be made law in 2023 and is a really important and modernising piece of legislation as the law currently governing the area, the Lunacy Regulation (Ireland) Act 1871, pre-dates the creation of the State.
It may be familiar to you from the recent focus on Wards of Court, whereby somebody who is medically certified as being unable to make their own decisions comes under the protection of the court. Thereafter the court makes all decisions in respect of that person and, as such, it is highly restrictive.
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From RTÉ Radio 1's Drivetime. Claire Hendrick talks about her experience of being a ward of court, and Áine Flynn from Decision Support Service talks about why the Wards of Court system needs to change
Newer thinking on decision-making for people with cognitive impairment tells us that an all-or-nothing approach to a person’s ability to make decisions is not accurate; and that with the correct support people can often make some decisions some of the time, if not all decisions all of the time. This is called the 'functional' approach to capacity and as the name suggests it aims to determine what a person can actually ‘functionally’ do rather than what we assume they may or may not be able to do, as a result of a diagnosis of dementia or intellectual disability. This functional approach aims to ensure that a person is able to make as many of their own decisions as possible and thereby retain as much independence and personal autonomy as possible.
The Act aims to support a person to make their own decisions where possible. It does this both by creating a set of principles that govern decision-making and by providing for the creation of formal support agreements to use now. It also allows for advance plans for the future where, in the case of dementia for instance, decision-making ability may be fully lost.
The principles designed to support a person in making their own decisions are that a person is presumed to have the capacity to make a particular decision; that they shall not be treated as unable to make a decision unless steps have been taken to help them to do so; that they shall not be regarded as unable to make a decision merely by making an unwise decision.
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From RTÉ Radio 1's News At One, calls for Capacity Bill to include those with mental health difficulties
What they effectively mean is that rather than presuming someone can't make their own decisions because they have a diagnosis of a cognitive impairment, we presume they do have capacity unless it becomes clear that they cannot process the information needed to make the decision. The steps that might be taken to support a person to make a decision are; having their carer with them to help explain and communicate information; visual aids that may make understanding information easier; and in the case of fluctuating capacity, picking a time at which the person is most able to process information.
Crucially, and perhaps most difficult in practice, is the principle that a person may be permitted to make a decision that might be regarded as unwise, such as to decline medical treatment and care, and that the making of an unwise decision is not of itself evidence of incapacity. The rest of us are after all entitled to make decisions that harm us, like smoking or drinking too much, with nobody questioning us.
A person can also now formalise their decision-making supports. Assisted decision-making agreements can be used when a person still has capacity but requires support to exercise it, and would be useful for someone with intellectual disability or who was navigating the earlier stages of dementia.
🔠Terminology🔠
— Decision Support Service (@DSS_Ireland) January 17, 2023
Ahead of commencement of The Assisted Decision-Making (Capacity) (Amendment) Act 2022, the DSS team have developed a resource of key terms to help make terminology more accessible.
To avail of this resource👉https://t.co/WyaqKR6vRa #DecisionSupportMatters
Advance care planning is for a future time when capacity is lost and consists of enduring powers of attorney and advance healthcare directives. Enduring powers of attorney, whereby a person can give another person the authority to make decisions for them, have existed for some time. But until the new Act it has not been possible to do this for healthcare decisions. This is clearly an important change, in that very often people are worried about what will happen if they can’t speak for themselves.
In tandem with this, is the possibility to create an advance care directive and this again addresses a common fear that a person may be kept alive longer than they would want to be. An advance healthcare directive enables a person to indicate exactly the treatment that they would wish or not wish to receive towards the end-of-life. It should give a great degree of comfort for people who have strong views about this kind of care.
The Assisted Decision-Making (Capacity) Act 2015 is an important step forward for people with cognitive impairment and their ability to make their own decisions. Previously, a person was made a ward of court, or in healthcare, a doctor or other healthcare professional made the decision in practice. Now, people with diminished capacity can continue to make their own decisions with support from another person, or can plan for a future and formally appoint someone to act for them at a stage when they no longer have legal decision-making capacity.
The views expressed here are those of the author and do not represent or reflect the views of RTÉ
