On 26 April, the Assisted Decision-Making (Capacity) Act 2015 (the 2015 Act) was finally ‘commenced’, thereby becoming operational law. This is important and long-awaited human-rights based legislation. The reforms that the 2015 Act introduces include:
Amending legislation, the Assisted Decision-Making (Capacity) (Amendment) Act 2022, was enacted last December but does not fundamentally change the original 2015 Act.
It is important to note that this has already been the applicable standard in common law and in policy for many years. The functional assessment was articulated by the High Court in 2008 in a case which concerned a woman’s refusal of a blood transfusion on religious grounds. It is also the approach adopted in the HSE National Consent Policy, which was revised and relaunched in 2022 and will shortly undergo further revision to reflect the 2015 Act.
Central to the 2015 Act is the ‘relevant person’, a person whose capacity is or may be called into question, or who has been found to lack capacity in respect of one, or more than one, matter. The Act sets out mandatory guiding principles to be followed in every ‘intervention’ with a relevant person. The starting point is the presumption of capacity. Irrespective of presentation, an adult (the Act applies only to those over 18) is presumed to have capacity unless the contrary is shown. As with the functional test, this is already the standard in common law and policy.
The guiding principles in the 2015 Act state that a person is not considered to lack capacity unless all reasonable steps have been taken without success to support the person’s decision-making.
Another of the guiding principles is sometimes expressed as the ‘right to be unwise’. More precisely, the Act states that a person is not to be considered unable to make a decision merely because his or her decision is objectively unwise. The language of the United Nations Convention on the Rights of Persons with Disabilities influences the guiding principles, with emphasis on minimal intervention, dignity, privacy and autonomy. The guiding principles also require an intervener ‘to give effect, in so far as is practicable, to the past and present will and preferences of the relevant person’. There is no reference anywhere in the 2015 Act to ‘best interests’.
The guiding principles require an intervener, where appropriate and practicable, to consider the views of any person engaged in caring for the relevant person, which may include family members or healthcare professionals. However, this should be with a view to understanding the relevant person’s wishes, beliefs and values and not because such persons can supply consent, where consent is in issue. The idea that the ‘next of kin’ has some status as a decision-maker by virtue of a close family relationship has never had any legal basis.
As pharmacists may know, consideration of ‘will and preferences’ arose in the context of the COVID-19 vaccination campaign. Regulations required the healthcare professional administering the vaccination to obtain the person’s consent or, where the person was unable to consent, to record that the will and preferences of the person were established, and that the vaccination was for the person’s benefit.
The sorts of decisions that are capable of being supported under the new three-tier framework fall into two categories. These are ‘property and affairs’ and ‘personal welfare’, both of which are broadly defined. Personal welfare includes healthcare decisions and the catch-all ‘other matters relating to the relevant person’s wellbeing’. Participation in healthcare research, not including clinical trials, was added under the definition of personal welfare decisions by the amending legislation last year.
The lowest and least formal tier of support is the decision-making-assistant, a person appointed by a person to help the relevant person to obtain and understand information and to communicate a decision. The decision remains that of the relevant person.
The middle tier of support is provided by a co-decision-maker, with whom a relevant person takes decisions jointly in relation to specified matters. The application to register a co-decision-making agreement with the Decision Support Service must include a supporting capacity statement from either a registered medical practitioner or another healthcare professional prescribed by regulations. The co-decision-maker is supervised by the DSS.
At the upper tier, following an application by any person with an interest in the welfare of the relevant person, the circuit court may make a declaration that a relevant person lacks capacity in specific matters and may appoint a decision-making representative to make decisions on behalf of the relevant person, within the limits of the court’s order and subject to the supervision of the DSS.
It will be possible for a third party to access the DSS register where necessary and to confirm that a decision supporter is legitimately appointed.
Available data indicates that over 200,000 adults in Ireland have an intellectual disability, acquired brain injury, mental illness or dementia. There is no suggestion that all or any one of this number will need to enter into a formal support arrangement under the 2015 Act. That will depend on their circumstances and the decisions that they need to make. It is a core message of the DSS that the new framework is not imposed on individuals or their families and should be approached as a problem-solving tool, and to be availed of as required.
Another core message is that everyone who has capacity to do so should plan ahead and for this reason the 2015 Act is an Act for everyone. Any of us could encounter future challenges with decision-making due to illness or trauma. The 2015 Act provides for a revised form of enduring power of attorney, which requires the attorney to submit reports to the DSS. An amendment introduced last year has removed treatment decisions from the scope of an enduring power of attorney. Treatment is defined as an intervention done for a therapeutic, preventative, diagnostic, palliative or other purpose related to the physical or mental health of the person, including life-sustaining treatment.
The guiding principles in the 2015 Act state that a person is not considered to lack capacity unless all reasonable steps have been taken without success to support the person’s decision-making.”
Treatment decisions may be planned for in an advance healthcare directive, which the 2015 Act puts on a statutory basis. The Act clarifies that an adult who has capacity to do so may refuse treatment for any reason, notwithstanding that the refusal appears unwise; is not based on sound medical principles; or may result in death. A refusal of treatment expressed in an advance healthcare directive is as effective as if made in the present moment by a patient with full capacity.
There are validity and applicability criteria in order for advance healthcare directives to be effective and an ultimate route to court where compliance with these criteria is in doubt. There is provision for the directive-maker to appoint a ‘designated healthcare representative’ to act as his or her agent to ensure that the directive is respected. The Act states that the Minister for Health may publish regulations to provide for an accessible register of advance healthcare directives to be maintained by the Decision Support Service. These regulations have not yet been produced. However, an advance healthcare directive does not need to be registered to be valid.
The Act establishes the office of Director of the Decision Support Service within the Mental Health Commission. In addition to the registration and supervision of decision support arrangements, the Director has a duty to promote public awareness, to provide information and guidance and, where appropriate, to make recommendations for changes in practice in organisations and bodies. The Director may receive and investigate complaints from any person about the operation of decision support arrangements.
Prior to commencement, the DSS published 13 codes of practice following a public consultation. These include an overarching code on supporting decision-making and assessing capacity, a code for healthcare professionals, and a specific code on advance healthcare directives. The codes are available on the DSS website together with supporting materials and illustrative vignettes.
From its extensive engagement with diverse healthcare professionals, the DSS is aware that the much talked-of ‘cultural shift’ that the 2015 Act introduces is well underway. It is to be expected, however, that detailed legislation that replaces a 150-year-old system and impacts across many sectors will bring with it challenges. The DSS has a duty to keep the operation of the 2015 Act under review and to report to Government with recommendations. The views of all those working on the front line of healthcare will be important and welcome.
References available on request.
Áine Flynn
Director, Decision Support Service
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