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Decision-making support in primary care

18 July 2022

The Assisted Decision-Making (Capacity) Act 2015 has been long awaited and comes into force in June 2022. Dr Rachel Birch, Editor-in-chief and Medicolegal Consultant at Medical Protection, asks Anita Puri, Associate Solicitor in Hayes Solicitors’ healthcare team, how GPs can best prepare for the implementation of the Act.

What is the main focus of the Assisted Decision-Making (Capacity) Act 2015?
The Act reforms Ireland’s capacity legislation. Its focus is on supporting decision-making by adults who may otherwise have difficulty making decisions without assistance and maximising a person’s capacity to make decisions. The Act moves away from an approach where others decide what is in a person’s ‘best interest’ and moves to a rights-based approach that considers instead the will and preference of the person. 

Under the Act, a person is always presumed to have capacity. In a situation where a person’s capacity is questioned, capacity will be assessed based on their ability to make a specific decision at a specific time, meaning capacity is to be construed on a “functional” (time and issue specific) basis as opposed to a “status” (all or nothing) basis. This means that a patient may not have capacity to manage paying a house bill but may have capacity to make a decision on a proposed treatment in circumstances where they can understand and retain the information given to them, weigh it up and communicate it back to their doctor.

The Act introduces a Decision Support Service (DSS) to facilitate the new regime. The role of the DSS is to assist in protecting and upholding people’s rights to make their own decisions about their personal welfare, property and affairs. For example, patients can enter into written agreements setting out their will and preference in relation to treatment choices in conjunction with their decision supporter (a decision supporter is someone with legal authority specified in a decision-making support arrangement to support the patient to make their own decisions or to make the decisions on their behalf).

The DSS has published numerous draft Codes of Practice, which include a draft Code of Practice for Healthcare Professionals, dated 15 November 2021. The draft code describes how healthcare professionals should act in certain situations in order to ensure they meet their responsibilities under the Act. The draft Codes of Practice are expected to be finalised in late June 2022. 

What are the different types of decision support available to patients?
Under the Act, there will be five different decision support arrangements for people who may need support to make certain decisions. The arrangements are based on different levels of support. 

The Act introduces three types of support arrangements for people who currently, or may shortly, face challenges when making certain decisions. In order of increasing levels of support, these are:

• Decision-making assistance agreements
• Co-decision-making agreements
• Decision-making representation orders

The Act also provides for people who wish to plan ahead for a time in the future when they might lose the capacity to make decisions:

• Enduring Power of Attorney Agreements
• Advanced Healthcare Directives 

The reality is that the patient and their decision supporter are responsible for putting the above arrangements in place. However, doctors should ask their patients if an agreement exists and/or check if one is registered by the DSS and note the position in the patient's medical records.

Will the Decision Support Service notify GPs when the patient registers their decision supporter?
No, the DSS will not notify GPs when an agreement has been made. 

According to the draft Codes of Practice, the decision supporter will inform GPs of their appointment (although this is not mandatory in the case of a decision-making assistance agreement). The decision supporter will advise the GP of the scope and nature of their appointment. The decision supporter may also provide a copy of the agreement to the GP, which should be included in the patient's medical records. 

GPs may wish to consider adding a flag to the patient’s medical record, if the patient requires support with decision-making. This will serve as a reminder during consultations and when making referrals to ensure that the appropriate information is shared with secondary care.

How will this affect my patients who are Wards of Court?
From 22 April 2022 there will be no new adult Wards of Court, although applications will still be accepted where there is an urgency. From the date on which the Act comes into effect (expected to be 20 June 2022), all existing adult Wards of Court will be reviewed and discharged from wardship, following a capacity review, within three years. Wards, or a relative or friend of the ward, may make an application to the Wardship Court. 

The court will review each case and if the court declares that a person lacks capacity, this declaration will be kept under review by the Circuit Court. Otherwise, former wards may transition to one of the new decision support arrangements available under the Act. The Circuit Court is likely to assess the person’s capacity and decide what level of support they need, and if they do not know of anyone who can provide that support then an individual from the DSS Panel will step into that role. 

A decision supporter is likely to inform the healthcare professionals of the new arrangement and this should be noted in the patient's medical records. 

If a patient with dementia gradually loses capacity, does an assisted decision-making agreement automatically become a co-decision-making agreement? 
No, an agreement does not automatically change if a patient gradually loses capacity. 

Under the draft Codes of Practice for decision supporters, if a decision supporter believes that there has been a change in the patent’s capacity that is likely to be sustained and is not a one-off occurrence, the decision supporter should contact the DSS. The DSS may advise the decision supporter to obtain a formal capacity assessment from a medical practitioner (at which point it is likely that the GP will become aware of the possible change to the patient’s capacity). The DSS may also send a “special visitor” to the patient to assess the patient’s capacity. A special visitor is a person (generally a medical practitioner) appointed by the DSS to assist the director in carrying out their functions and may be directed to visit a patient or decision supporter to carry out capacity assessments and prepare a report. 

Where can GPs find out more information?
Firstly, it’s important to note the new decision support arrangements, the DSS and the law moving from a person’s best interest to their specific will and preference assessed on a time and issue specific basis, is planned to come into effect on 20 June 2022 and the DSS website is the primary source of information for healthcare professionals. This website will include all draft Codes of Practice (soon to be finalised) and training support.

The HSE National Office for Human Rights and Equality Policy have established some helpful guidance for healthcare professionals. The website includes a webinar series on supported decision making, and undertaking the functional assessment of capacity to assist healthcare professionals: 

The National Office for Human Rights and Equality Policy also recently published a revised National Consent Policy to reflect important legislative and policy changes that have occurred since its initial publication in 2013. The policy has been amended to ensure that it aligns with the Act and emphasises the will and preferences of a person who may lack capacity, as opposed to what is in a person’s “best interest”.

Further resources 

Decision Support Service
Draft Code of Practice for Healthcare Professionals
HSeLanD, the Irish Health Service’s national online learning and development portal