Assisted Decision Making - Frequently Asked Questions

These FAQ’s should not be relied upon as legal advice or opinion and are subject to regular review.

The Act

What is the Assisted Decision-Making (Capacity) Act 2015?

The Assisted Decision-Making (Capacity) Act was signed into law in December 2015. However, it is not yet fully commenced. The current plan is for full commencement in June 2022. The Act recognises that, as far as possible, all adults have the right to play an active role in decisions that affect them. These decisions can be about their personal welfare, including health and social care, and their property and affairs.

The 2015 Act brings about important changes for people who require support to make decisions and for anyone interacting with them, including healthcare workers. 

The 2015 Act:

  • Introduces new guiding principles about interacting with a person who has difficulties with their decision-making capacity
  • Establishes a tiered system of decision support arrangements for people who need help with making decisions
  • Abolishes the current wardship system and requires all wards of court to be discharged from wardship within three years of commencement of the Act.
  • Establishes the Decision Support Service
  • Provides a human rights compliant legal framework for decision making where a person lacks capacity and for advance healthcare directives
  • Provides legal clarity as to who can make legally compliant decisions for a person who lacks capacity which is critical where matters of consent to treatment are at issue.
  • Provides for legally recognised decision-makers to support a person to maximise their decision-making powers
  • Provides for the individual’s right of autonomy and self-determination to be respected
  • Moves to a flexible functional approach to the assessment of capacity – moving away from “all or nothing” status approach
  • Puts the person at the centre of their healthcare treatment even where they lack capacity
  • Provides improved oversight of Enduring Powers of Attorney process

When does the Assisted Decision-Making (Capacity) Act 2015 mean when it refers to a ‘relevant person’?

When the 2015 Act refers to a ‘relevant person’, it means a person whose capacity to make one or more decisions is, or may shortly be, in question. Under the new law, a person’s capacity must be assessed based on their ability to make a specific decision at a specific time.

What does the Act mean for healthcare workers?

The guiding principles of the Act require healthcare workers to do the following:

  • Presume every person has the capacity to make decisions about their life
  • Support people as much as possible to make their own decisions
  • Don’t assume a person lacks capacity just because they are making, have made or are likely to make an unwise decision
  • Only take action where it is really necessary
  • Any action should be the least restriction on a person’s rights and freedoms
  • Give effect to the person’s will and preferences
  • Consider the views of other people
  • Consider how urgent the action is
  • Use information appropriately

Interaction with decision supporters

Healthcare workers will be required to engage with a person’s legally appointed decision supporter under the 2015 Act. Healthcare workers may also be required to check a national register to see if a person has a decision supporter and/or to check that the decision supporter is working within the scope of the agreement.

All practicable steps to support decision-making

If a person needs to make a decision in relation to their care or treatment, they must be supported to make that decision, e.g. through the provision of accessible information. This will mean that health and social care consultations may take more time.

Functional assessment of decision-making capacity

The functional assessment of capacity will now have a statutory basis and should be used in place of status based capacity assessments for the assessment of decision making capacity. Healthcare professionals and registered medical practitioners may be  required to undertake assessments of capacity under some sections of the Act e.g. to assess whether a person can make decisions with the support of a co-decision maker or has the capacity to make an Enduring Power of Attorney.

Advance Healthcare Directives

The purpose of an Advance Healthcare Directive is to provide healthcare professionals with important information about a person’s refusal of healthcare treatment and to enable a person to be treated according to his or her own ‘will and preferences’ even when he or she no longer has the capacity to make decisions. 

As a healthcare worker, how to I get ready for the Assisted Decision Making Act?

If you are a healthcare worker, the 2015 Act will bring about important changes in how you do certain parts of your work. The National Office for Human Rights and Equality Policy have developed the following resources to assist you with your legal and professional obligations under the 2015 Act, including:

 What is meant by will and preference?

If there is concern that someone lacks capacity to make a decision, it is essential that their past will and preferences are taken into consideration – therefore, what they would have wanted to happen before they lost capacity is of importance. The beliefs and values that that person held will have to influence any decision made.

Will incorporates a person’s values, personal beliefs, ultimate goals. ‘Will’ carries a stronger sense of determination or planning than ‘preference’

Preference: Means ‘a greater liking for one alternative over another’.

Does the Act apply to children?

The Act only applies to people over the age of 18.

 Support Arrangements under the Act

As a healthcare worker you should be familiar with the support arrangements under the Act and should be able to advise the people who use your services accordingly. You should be aware of your responsibility to engage appropriately with ‘supporters’ according to their role and responsibilities.

What are the support arrangements under the Act?

There will be five different decision support arrangements available. These arrangements are based on the different levels of support that a person requires to make a specific decision at a specific time.

There will be three tiers of decision support available for people who currently, or may shortly, face challenges when making certain decisions. These are:

  • Decision-making assistance agreement (the person makes their own decision with support from their decision-making assistant. Their decision-making assistant helps them to access and to understand information and to communicate their decision)
  • Co-decision-making agreement (the person makes specified decisions jointly with a co-decision-maker)
  • Decision-making representation order (the court appoints a decision-making representative to make certain decisions on the person’s behalf).

There are two types of decision support arrangements for people who wish to plan for a time in the future when they might lose capacity.

  • A person can appoint one or more attorneys to make decisions on their behalf about their personal welfare, or property or money matters. This is written down in and enduring power of attorney.
  • A person can record their wishes about healthcare and medical treatment decisions in Advance Healthcare directive. The person may appoint a designated healthcare representative to make sure their advance healthcare directive is complied with.

What is a ‘decision supporter’?

The Decision Support Service uses the term ‘decision-supporter’ to refer to a person who has been appointed as a decision-making assistant, co-decision-maker, decision-making representative, attorney or designated healthcare representative. The type of support they can provide depends on the decision support arrangement in place. Ideally, a decision supporter will be a family member or trusted friend.

Can a person register a decision support arrangement at the moment?

Not at this time. A person will not be able to register a decision support arrangement with the Decision Support Service until the new law is commenced. A person can however still make an enduring power of attorney or an advance healthcare directive.

As a healthcare worker what information will I be able to access in the register of decision support arrangements?

The Decision Support Service will keep a searchable register for the following types of arrangements:

  • Co-decision-making agreements
  • Decision-making representation orders
  • Enduring powers of attorney

As a healthcare worker, if you are an ‘approved professional’ with a ‘legitimate interest’ the Decision Support Service will approve your request to search the register. The Decision Support Service will decide whether you can see some or all of the details in the arrangement. The Decision Support Service will also decide whether you can get a copy of the arrangement. 

Approved professionals and organisations will be able to search the register to:

  • Confirm that an arrangement exists and is active
  • See the details of the arrangement
  • Get a copy of the arrangement

Codes of Practice

The Decision Support Service will publish codes of practice describing how decision supporters and healthcare workers should act in certain situations to meet their responsibilities under the Act. These Codes will be available at www.decisionsupportservice.ie.

What is the role of a decision-making assistant?

A person can appoint a decision making assistant to assist them to make decisions about personal welfare, finances and property. They will gather relevant information and explain it to the person, and support the person to communicate their decision. The decision-making assistant’s role is to help the person make decisions for themselves. They do not make decisions with or on behalf of the person.

What is the role of a co-decision-maker?

A co-decision-maker’s primary role is to make certain decisions together with the person. Co-decision-maker cannot make a decision on behalf of the person.

To be a co-decision-maker, you must be 18 years and over. You must be known and trusted by the person appointing you.

Can a person have more than one co-decision maker?

A person can only appoint one co-decision-maker in a co-decision-making agreement. However, if they wish to have different co-decision-makers for different types of decisions, they can appoint them under separate co-decision-making agreements.

What is the role of a decision-making representative?

A decision-making representative’s role is to make certain decisions on behalf of a person if they are unable to make those decisions for themselves. They will be appointed by the court in an order called a decision-making representation order. A decision-making representative must take the person’s wishes into account.

The court order will list all the decisions that the decision-making representative can make. This may include decisions about the person’s personal welfare including consent to health and social care interventions and property and affairs. A decision-making representative can only make decisions that are included in the order.

If possible the court will appoint someone the person knows and trusts in this role. If there is no one suitable who is able to do the role, the court will appoint a decision-making representative from a panel of experts maintained by the Decision Support Service.

A decision-making representative must send a written report to the Decision Support service every year, or may be required by the Court to send reports more often.

Can more than one person be appointed as a decision-making representative?

The court may decide to appoint more than one decision-making representative to make decisions on behalf of a person. If the court appoints more than one decision-making representative in a decision-making representation order, it will say whether they:

  • must make the decisions in the order together
  • can make the decisions together or separately
  • must make some decisions together but can make other decisions together or separately.

What is an advance healthcare directive?

If a person wishes to plan ahead in relation to their future healthcare, they can make an advance healthcare directive. This lets them set out their wishes regarding treatment decisions in case they are unable to make these decisions in the future. Importantly, it lets them write down any treatment they do not want.

Under the new law, a person will be able to appoint someone they know and trust as their designated healthcare representative to ensure their advance healthcare directive is followed.

If a person lacks capacity to make a treatment decision, and has a valid and applicable advance healthcare directive, healthcare workers must consult the advance healthcare directive.

A Code of Practice on Advance Healthcare Directives is currently under public consultation.

Will a person be able to cancel their advance healthcare directive?

A person can end an advance healthcare directive at any time if they have capacity to do so. They can also change their advance healthcare directive. The advance healthcare directive only starts to apply if a person loses capacity. It can be a good idea for a person to review and update their advance healthcare directive on a regular basis to ensure that it reflects their wishes. A person should also review and update it following any major medical treatment or diagnoses to ensure it reflects their medical situation. While it is not mandatory, it is good practice for a person to seek the advice of a healthcare worker involved in their care when making an advance healthcare directive.

As a healthcare worker, how do I respond to an advance healthcare directive and/or designated healthcare representative?

A person with decision-making capacity may ask you as a healthcare worker for your guidance or opinion when they are preparing an advance healthcare directive. 

If you are working with a person who lacks decision-making capacity in relation to their healthcare you should check if they have a valid and applicable advance healthcare directive. You can do this by asking the person and/or their supporters.

Refusal of treatment

If a person has a valid and applicable Advance Healthcare Directive, you must respect any specific refusal of treatment set out in the advance healthcare directive if

  • At the time in question the person lacks capacity to give consent to the treatment
  • The treatment to be refused is clearly identified in the advance healthcare directive
  • The circumstances in which the refusal of treatment is intended to apply are clearly identified in the directive

An advance healthcare directive does not cover the refusal of ‘basic care’ which includes warmth, shelter, oral nutrition and hydration and hygiene measures.

Request for treatment

A request for a specific treatment in an advance healthcare directive is not legally binding however it should be taken into consideration if it is relevant to the person’s medical condition.

Where a request for a specific treatment is set out in an advance healthcare directive and not complied with, the healthcare worker involved must:

  • Record the reasons for not complying with the request in the person’s healthcare record
  • Give a copy of those reasons to the person’s designated healthcare representative within 7 working days.

Designated healthcare representative

If a person has appointed a designated healthcare representative, you must respect the designated healthcare representative’s authority to consent to or refuse treatment on behalf of the person, up to and including life-sustaining treatment, based on the known will and preferences of the person.

 Can I provide treatment in a medical emergency?

In the absence of a decision supporter or an advance statement (for example an advance healthcare directive or an enduring power of attorney), if there is a medical emergency you may need to provide necessary treatment without consent in an emergency.

If a person has a decision supporter or an advance statement - and you have access to it, you must consult the person’s supporter or statement, unless the delay in doing so might cause serious harm.

It is important to ask any person accessing your service if they have an advance healthcare directive or an enduring power of attorney, which includes their wishes about healthcare and treatment.  In this way, you can help to make sure their medical wishes are respected even in an emergency.

Who cannot be a decision supporter under the Act?

The following people cannot act as Decision Making Assistants, Co Decision Makers, Decision Making Representatives, Attorneys under an Enduring Power of Attorney or Designated Healthcare Representatives:

  • A person convicted of an offence in relation to the person or the person’s property
  • A person convicted of an offence in relation to the person’s child or that child’s property
  • A person who has been the subject of a safety or barring order in respect of the person
  • A person who has undischarged bankrupts or the subject of a debt settlement agreement or similar
  • A restricted or disqualified company director
  • The owner or provider of a nursing home, a mental health facility or a residential facility for persons with a disability, unless that person is an immediate family member
  • People who have entered their own decision making arrangement or are without capacity themselves
  • People who have previously been in the role and the court has ruled that they should no longer continue in that role
  • People under the age of 18.

As a healthcare worker can I be on one of the panels?

The Act provides for four different panels. These are decision-making representatives, special visitors, general visitors and court friends.

How much will it cost to make a support arrangement under the Act?

A person may have to pay to register a co-decision-making agreement and an enduring power of attorney.

There will also be costs relating to an application to court to make a decision-making representation order. Some people may be able to get legal aid to, including legal representation.

Some people may not have to pay a fee, or will pay a lesser fee. This will depend on individual circumstances, including income or certain benefits.

Existing support arrangements

What will happen to a person’s current Enduring Power of Attorney?

If a person has already made an Enduring Power of Attorney (under the Powers of Attorney Act 1996) then they can keep that arrangement and it will continue to be valid. The only change is that the Decision Support Service will be able to investigate complaints about an attorney under the 1996 Act.

If a person wishes to make an enduring power of attorney following commencement of the 2015 Act, they will only be able do so under the new law.

What will the Act mean for Wards of Court?

The Assisted Decision Making (Capacity) Act 2015 repeals the Lunacy Regulation (Ireland) Act 1871, and therefore the Wards of Court system under that Act will be abolished.  When the Assisted Decision-Making (Capacity) Act 2015 comes into effect, a person can no longer be made a Ward of Court. There will be a move away from a ‘best interests’ principle and substituted decision-making. Instead, a ‘rights-based’ approach will respect the will and preference of the person and will maximise autonomy for people who require support to make decisions about their personal welfare, property and financial affairs.

All Wards of Court will be reviewed by the wardship court and discharged from wardship within three years after the new law comes into effect. The courts will decide whether or not a current Ward of Court should transition to one of the new supports available under the new Act. 

Any ward of court or someone on their behalf can apply to the wardship court to have their case reviewed.

Functional Assessments of Decision-Making Capacity

What is a capacity assessment?

A capacity assessment looks at a person’s ability to make a decision for themselves. The assessment used under the new law is called a ‘Functional Test’ for capacity. This means the assessment is about a specific decision that needs to be made at a specific time. You may not make a blanket assessment that a person has no capacity.

Applying the functional test, a person can be said to lack capacity to make a decision if they are unable to do one of the following:

  • Understand information relevant to the decision,
  • Retain that information long enough to make a voluntary choice,
  • Use or weigh up that information as part of the process of making the decision,
  • Communicate their decision in whatever way they communicate (not only verbally).

 Presumption of capacity

Under the new law, everyone is presumed to have decision-making capacity at all times. The first step is to support people to make their own decisions. In some circumstances there may be a reason to question a person’s capacity to make a certain decision.

Who can assess capacity?

The person who requires the decision to be made will often be the best person to do the capacity assessment. This could be, for example, a lawyer, doctor or other healthcare worker, or a person providing financial services.

Under the new law, there are also limited circumstances where the capacity assessment has to be undertaken by healthcare professionals which includes nurses and midwives, social workers, occupational therapists, speech and language therapist and psychologists. This is during the process of registering a co-decision-making agreement or enduring power of attorney. Formal statements from healthcare professionals are required to register these arrangements.

 The role of families in relation to the Act

What rights do family carers have when it comes to making decisions for a person who faces challenges with their decision making capacity?

At present, there is no legal basis for a family member or ‘next-of-kin’ to make a decision for anyone or to give or withhold consent on behalf of another adult. Every adult is presumed to have decision-making capacity and may choose whether or not a family member is involved when they are making decisions. They may also decide whether or not their information is shared with a family member.

When the 2015 Act commences, a person who faces challenges when making decisions may give someone they know and trust, such as a family member or carer, the legal authority to act as their decision supporter. 

If they are unable to do so, the Court may appoint a decision-making representative to the person which may be someone known and trusted by them where possible. The court must consider the wishes of the person when appointing a decision-making representative. 

The person’s need for a decision support arrangement will depend on their circumstances and the decisions that they need to make.

Can a family carer apply to be a decision supporter?

A family carer may be a decision supporter for the following arrangements if this is what the person wishes:

  • Decision-making assistance agreement
  • Co-decision-making agreement
  • Enduring power of attorney
  • Advance healthcare directive

The person chooses who they wish to appoint as their decision supporter for the above arrangements which may include a family carer.

If a person is unable to make certain decisions for themselves, a family member may ask the court to make a decision-making representation order. The court will decide whether to appoint a decision-making representative for the person and who will act in this role.

The Decision Support Service

What is the Decision Support Service?

The Decision Support Service is a new service for all adults who have difficulties with their decision-making capacity. 

The Decision Support Service is a public body established within the Mental Health Commission by the Assisted Decision-Making (Capacity) Act 2015. Their job is to register the new decision support arrangements and supervise the individuals who are providing a range of supports to people with capacity difficulties.

The role of the Decision Support Service is to promote public awareness of the 2015 Act and to provide information about their services. This includes providing information and guidance to people who may use this service and to their families.

For regular updates see: www.decisionsupportservice.ie

Who might access the supports of the Decision Support Service?

Any adult who needs support to exercise their decision-making capacity could need the Decision Support Service. This may include, but is not limited to people with an intellectual disability, mental illness, dementia or acquired brain injury, as well as people with age-related conditions. People may require the Decision Support Service when a third party such as a hospital, bank or lawyer questions a person’s capacity to make a decision or give consent. This is relevant to healthcare workers as they are required to obtain a valid consent for any healthcare intervention.

Any person who wants to plan ahead for a time in the future when they may lose capacity could also need the Decision Support Service.

Can the Decision Support Service make a decision for a person?

No, the Decision Support Service cannot make decisions for a person. If a person needs help with certain decisions, they may appoint a 'decision supporter' to help them. The type of help the decision supporter can provide will depend on the decision support arrangement that is in place.

In some cases, the court may ask the Decision Support Service to provide a decision-making representative from their panel of trained experts to act as a person’s decision supporter. A decision-making representative can only be assigned to a person by a court order.

When will the Decision Support Service open?

Under the current plan, the Decision Support Service will begin to operate in June 2022.

They are not fully operational at this time. They are waiting for commencement of the new law (the Assisted Decision-Making (Capacity) Act 2015). They are working closely with the Department of Children, Equality, Disability, Integration and Youth, the Department of Health and the HSE about the new law. 

As a Healthcare Worker, when should I engage with the Decision Support Service?

Once the Act is fully commenced:

  • You will be able to search the register of support arrangements with the Decision Support Service if you have a legitimate interest.
  • If you are a member of the ‘prescribed class of professionals’ under the Act, which includes nurses and midwives, social workers, occupational therapists, speech and language therapist and psychologists, you may be required to make a formal statement to the Decision Support Service to support a person’s application for a co-decision-making arrangement, or Enduring Power of Attorney.
  • You will be able to make a complaint about a decision-making arrangement or supporter. If you have a concern about an adult at risk you should contact the HSE Safeguarding Team.

 How will I access the Decision Support Service?

The Decision Support Service will provide a “digital-first” service. This means that you will be able to access their services through www.decisionsupportservice.ie

Will the Decision Support Service work with adult safeguarding if there is a complaint or allegation about a decision supporter?

If the Decision Support Service receive a complaint or allegation of abuse as part of their supervisory and complaints functions, they will escalate this appropriately.

It will also be important that organisations that become aware of a complaint of abuse involving a decision supporter contact the Decision Support Service so that appropriate action can be taken.

Any person who has a safeguarding concern about an adult at risk should contact the HSE Adult Safeguarding Team in their area. In an emergency, please contact the Garda Síochana or emergency services.

What do the DSS not do?

The DSS will not:

  • Advise on individual current cases pre-commencement
  • Make decisions for people
  • Directly manage people’s money and property
  • Directly appoint decision supporters
  • Operate as an advocacy service
  • Regulate and supervise arrangements, apart from the formal arrangements under the Act
  • Be responsible for the delivery of training to professionals and organisations

If you have a question on what the Act means for healthcare workers please email adm@hse.ie