What is Assisted Decision-Making?
What is the Assisted Decision-Making (Capacity) Act 2015?
The Assisted Decision Making (Capacity) Act 2015 provides the statutory framework that will support all adults to make their own decisions in relation to all aspects of their lives.
What is the Assisted Decision Making (Capacity) Act 2015 and why is it important?
The Assisted Decision Making (Capacity) Act 2015 (ADMA) provides the statutory framework that will support all adults to make their own decisions in relation to all aspects of their lives. Throughout our life, our capacity to make decisions about health, finance, and property may be compromised for a range of reasons. This Act places a legal requirement on service providers to enable a person to make a decision through the provision of a range of supports and information appropriate to their individual needs. All adults are presumed to have decision-making capacity under the Act. It takes a ‘rights-based approach’ to decision making, and a person cannot be regarded as being unable to make a decision unless all practicable steps to support them have been taken without success. This legislation represents a major shift away from a ‘paternalistic’ or ‘best interests’ approach where decisions are made on a person’s behalf if their capacity is called into question (e.g. decisions such as consent to treatment, financial decisions, property related decisions, etc.).
International Policy Context – international rights instruments
- The European Convention on Human Rights has enshrined the right to self-determination.
- The 2006 UN Convention on the Rights of Persons with Disabilities also calls for states to facilitate people with disabilities to exercise their right to make choices and express preferences in relation to their care.
- In December 2009, the Council of Europe issued a recommendation that noted that where legal systems provide for advance care directives, increasing numbers of people avail of them. The statement recommended that Member States promote self-determination for adults in the event of their future incapacity by means of powers of attorney and advance directives.
- In February 2014, a Council of Europe recommendation on the promotion of human rights of older people stated that older people are entitled to lead their lives in an autonomous manner, which encompasses the making of independent decisions with regard to all issues that concern them. This includes decisions regarding property, income, finances, place of residence, health, medical treatment or care, as well as funeral arrangements. The statement recommended that Member States should provide for legislation that allows older people to regulate their affairs in the event that they are unable to express their instructions at a later stage.
As well as Ireland, advance care directives enjoy legal status in countries such as the USA, England and Wales (in certain circumstances), Germany, the Netherlands, New Zealand, Canada and Australia.
IMPLICATIONS FOR HEALTHCARE & END-OF-LIFE DECISIONS
Relevance to healthcare and end-of-life decisions
- The Assisted Decision-Making (Capacity) Act 2015 applies to all health and social care settings and will have a significant impact on the delivery of good quality end-of-life care.
- The Act provides for the individual’s right to autonomy and self-determination to be respected when they may have an issue with decision-making capacity through provisions relating to an Enduring Power of Attorney and Advance Healthcare Directives. Both of these documents can be made by a person when they have capacity and state what they would like/not like to happen in relation to different aspects of their healthcare, should the need arise.
- The legislation supports advance care planning, a process of discussion and reflection about goals, values, and preferences for future and end-of-life care. This process usually takes place with a doctor or nurse.
- The legislation includes a provision for creating an Advance Healthcare Directive, a document where a person can write down what they would not like to happen in relation to certain medical care treatments. An advance healthcare directive only comes into force when that person loses decision-making capacity, becomes ill, and the circumstances in their advance healthcare directive arise. Within an advance healthcare directive, a person can refuse treatment up to and including life-sustaining treatments but cannot refuse “basic care”. See IHF Briefing Paper on advance healthcare directives, the Think Ahead programme and this guidance document for more information. When commenced, the legislation will enable healthcare professionals to be provided with important information about a person and their preferences in relation to treatment up to and including the end of life in order to ensure that the care they provide is in keeping with the person’s expressed wishes. It will offer clarity on the roles and responsibilities of healthcare professionals with regard to advance care planning and advance healthcare directives.
STATUS OF THE LEGISLATION
What is the current status with the legislation?
Although the legislation was enacted on December 17, 2015, and is registered in the Statute Book (the Laws of Ireland), it has not yet been commenced. This means that the Lunacy Regulations (Ireland) Act (1871) is still applicable and in use in Ireland. However, it is recommended that the guiding principles as set out in the legislation are used along with existing case law and other national guidelines/policies (such as the HSE National Consent Policy, 2013) to guide practice in the interim to ensure that people’s rights are upheld and their wishes are acted upon.
What needs to happen for the Act to be commenced and made into law?
- A Director of Decision Support Services needs to be appointed.
- A code of practice needs to be developed. This will outline how the Act will be implemented.
- The Minister for Justice has responsibility for commencing most of the Act. However, the Minister for Health is responsible for the commencement of the provision relating to advance healthcare directives.
- The HSE has established an Assisted Decision-Making Steering Group with four working groups (guidance and documentation, information and communication, training and education and advance healthcare directives). These working groups are tasked with addressing implementation of the Assisted Decision-Making (Capacity) Act 2015 for health and social care providers.