Assisted Decision Making - Frequently Asked Questions

The Assisted Decision-Making (Capacity) Act 2015  fully commenced on 26th April 2023. 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 may require support to make decisions and for anyone interacting with them, including healthcare workers. 

The 2015 Act:

• Means that every adult will be presumed to have capacity to make decisions, unless determined otherwise
• Provides for the individual’s right of autonomy and self-determination to be respected
• Introduced new guiding principles about interacting with a person who has difficulties with their decision-making capacity
• Established a tiered system of decision support arrangements for people who need help with making decisions
• Abolished the current wardship system and requires all wards of court to be discharged from wardship within three years of the 26th April 2023.
• Established 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 decision-making capacity
• Provides improved oversight of Enduring Powers of Attorney process

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.

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 what a healthcare worker, or another person, might perceive to be 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 the Decision Support Service’s decision arrangement 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 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.

Questioning a person’s capacity should be a last resort and only after all efforts have been made to support the person in their decision-making. Just because a person requires a capacity assessment regarding one decision does not mean that all other decisions also need capacity assessments. Each person has a right to be supported in decision-making for each individual decision at different times.

Advance Healthcare Directives

The purpose of an advance healthcare directive is to provide healthcare workers 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. 

If you are a healthcare worker, the 2015 Act will bring about important changes in how you do certain parts of your work. The HSE 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:

• An e-learning programme "Assisted Decision-Making (Capacity) Act 2015 - Guidance for Healthcare Workers" available on HSeLanD which provides essential information about implementing the 2015 Act in practice and will help staff to familarise themselves with their new responsibilities under the Act.
  
  • Module 1: Guiding Principles
  • Module 2: Working with Decision Supporters appointed under the 2015 Act
  • Module 3: Advance Healthcare Directives
• An e-learning programme “Supporting Decision Making in Health and Social Care” available on HSeLanD which focuses on the principles of supported decision-making and models key communication skills, strategies and tools.
  • Module 1: Supporting a person to make decisions
  • Module 2: Supporting a person to plan for the future
  • Module 3: An Introduction to the Functional Assessment of Capacity
• An e-learning programme on “HSE National Consent Programme” available on HSeLanD which prepares staff to ensure that valid consent is sought for every intervention in line with the HSE National Consent policy.
  • Module 1: General Principles
  • Module 2: Working with Children and young People
• A website www.assisteddecisionmaking.ie where most of our resources can be accessed.
• A pre-recorded presentation on the essential elements of the Assisted Decision-Making (Capacity) Act 2015 and what this means for healthcare workers.
• A series of webinars help staff prepare for commencement of the Assisted Decision-Making (Capacity) Act 2015.
• A regular newsletter to keep staff informed of developments in relation to the Act. If you would like to join the mailing list for this newsletter please email your request to adm@hse.ie This is the best way to keep up to date with new resources as they are released.
• A book “Assisted Decision-Making (Capacity) Act 2015: Personal and Professional Reflections” written by subject matter experts, experts by experience, health and social care professionals and others offering their perspectives on what we can expect from the Assisted Decision-Making (Capacity) Act 2015

It is essential to encourage and facilitate the person to participate as fully as possible in decision-making. Even if a person, despite support, lacks capacity to provide or refuse consent, his or her past and present will and preferences remain important, and healthcare workers should, in general, act to give effect to those will and preferences when it comes to deciding whether to proceed or not with a proposed intervention. The views of anyone the person asks to be consulted and of people who have a close, ongoing personal relationship with the person such as family or friends should be considered and may be invaluable in eliciting the persons past and present will and preference.

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’.

One of the guiding principles of the Act states that: 

“a relevant person… shall not be considered as unable to make a decision in respect of the matter concerned merely by reason of making, having made, or being likely to make, an unwise decision.”

This guiding principle clarifies that making, being likely to make, or having made a decision which others (such as healthcare workers or family) perceive to be ‘unwise’ is not sufficient grounds to consider the person unable to make that decision.

Often choices which appear unwise can be understood by reference to the person’s circumstances and the goals and beliefs of the person. Everybody has their own values and beliefs and what you, as a healthcare worker, consider to be an unwise decision may reflect differences in values and beliefs between you and the person. Where a person makes, has made, or wishes to make a decision that you consider to be unwise, this:

• is not evidence that the person lacks capacity to make that decision
• is not an adequate reason to challenge their capacity to make that decision, and
• does not automatically trigger an assessment of their capacity.

In protecting and supporting the human rights of all people using health and social care services, a central principle is autonomy – ensuring each person who uses health and social care services has a say over their lives and is facilitated to participate as much as possible in decisions about their own life.

Some practical guidance for healthcare workers:

Person has capacity to make the decision: Seek consent following the HSE National Consent Policy. If the person refuses consent, respect their decision, even if you perceive this decision to be unwise or against medical advice.

If capacity is in question, but the person has an advance healthcare directive refusing the intervention: If the advance healthcare directive is valid and applicable, respect the refusal of the intervention.

If capacity is in question, and the person does not have an advance healthcare directive: In accordance with the guiding principles of the Act, give effect to the will and preferences of the person.

The Act only applies to people aged 18 years and older.

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.

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.

Yes, a person can  register a decision support arrangement with the Decision Support Service via the MyDSSportal. You can access this portal using this link; https://portal.decisionsupportservice.ie/SignIn or in the top right corner of the Decision Support Service website www.decisionsupportservice.ie

A person does not need a lawyer to make a decision support arrangement. Detailed information on how to make a decision support arrangement will be available on the Decision Support Service website for the public to follow. However, if a person wishes to make an Enduring Power of Attorney under the new law the person will need a statement from a lawyer that they understand the arrangement.

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

The contents of the register depend on the registration of arrangements therefore it will be a number of months before anything will be available to view on the register. The register will be accessible through the MyDSS portal in the coming months however if you need to access the register beforehand please contact the registration team on 01 211 9750 or email registration@decisionsupportservice.ie

The Decision Support Service have published thirteen codes of practice for decision supporters, intervenors and relevant professionals including healthcare workers. These codes provide guidance describing how decision supporters and healthcare workers should act in certain situations to meet their responsibilities under the Act. These Codes are available at https://decisionsupportservice.ie/resources/codes-practice

The Decision Support Service has also published a plain English guide to the codes of practice.

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.

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.

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.

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.

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.

If there is a concern that a person is unable to make certain decisions which need to be made, even with the support of a decision-making assistant, or a co-decision-maker, and that person has not previously made an enduring power of attorney or an advance healthcare directive for those particular decisions, then a decision-making representative may need to be appointed by the court to make those decisions on behalf of the person concerned. This application to the court is called a capacity application.

Information on decision-making representation orders and how to apply to the circuit court to make a capacity application can be found at:

https://www.courts.ie/capacity-applications-and-decision-making-representation-orders-dmro%E2%80%99s.

If a person does not currently need support, but would like to plan ahead, they can make an enduring power of attorney. This arrangement lets the person appoint someone they know and trust as their attorney. The attorney’s role is to act on the person’s behalf to make certain decisions if the person is unable to in the future.

If a person wishes to plan ahead in relation to their future healthcare, they can make an advance healthcare directive. This arrangement 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.

The Decision Support Service has published a Code of Practice on Advance Healthcare Directives for Healthcare Professionals which is available on www.decisionsupportservice.ie

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.

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

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.

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 seven working days.

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.

If there is a medical emergency and the person does not have a decision supporter or an advance statement for example an advance healthcare directive, you may need to provide the person with the necessary treatment without their consent.

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 to the person.

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 the person's medical wishes are respected even in an emergency.

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
• A person who have entered their own decision making arrangement or are without capacity themselves
• A person who have previously been in the role and the court has ruled that they should no longer continue in that role
• A person under the age of 18.

In March 2022, the Decision Support Service conducted an extensive recruitment campaign for the decision-making representative, general visitor and special visitor panels. Future recruitment campaigns will be advertised on the Decision Support Service website www.decisionsupportservice.ie

A person may have to pay to register a co-decision-making agreement and an enduring power of attorney. The full list of fees is available on the Decision Support Service website https://decisionsupportservice.ie/resources/fees.

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. For more information about this, contact the legal aid board.

Some people may not have to pay a fee. This will depend on the person’s household income and any dependents they have. There is information on the criteria for obtaining a fee waiver as well as the process for applying on the Decision Support Service website.

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 under the 2015 Act, there is information on the Decision Support Service website https://decisionsupportservice.ie/services/decision-support-arrangements/enduring-power-attorney/making-enduring-power-attorney

The Assisted Decision-Making (Capacity) Act 2015 repealed the Lunacy Regulation (Ireland) Act 1871, and therefore the Wards of Court system under that Act is  abolished.  Under the new law, 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. The Wards of Court Office stopped accepting wardship applications on 25th April 2023 in advance of the Assisted Decision-Making (Capacity) Act 2015 being commenced.

All adult Wards of Court will be reviewed by the wardship court and discharged from wardship within three years after 26 April 2023. The courts will decide whether or not a current Ward of Court needs formal support under the new Act. 

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

If you were previously appointed as a care Representive, you will not be affected by this change. You can still act on the person’s behalf. You do not need to do anything.

For more information about the fair deal scheme visit https://www2.hse.ie/services/schemes-allowances/fair-deal-scheme/application-process/.

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).

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.

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, and speech and language therapists. 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.

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.

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 person requires a higher level of decision-making support, 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.

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.

A family carer cannot make a decision support arrangement for the person, or on their behalf. The Decision Support Service will provide information for family members and carers who wish to help a person to make a decision support arrangement.

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 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

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 every healthcare intervention.

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

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.

The Decision Support Service became fully operational on the 26th April 2023.  

Under the new law:

• You will be able to search the register of decision support arrangements with the Decision Support Service if you have a legitimate interest.
• If you are a registered medical practitioner or a  ‘prescribed class of professional’ under the Act, which includes nurses and midwives, social workers, occupational therapists, and speech and language therapists, 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 and decision supporters. If you have a concern about an adult at risk you should contact the HSE Safeguarding Team.

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

The Decision Support service have published information and guidance to help people when they are using their online services. The Decision Support Service also have an information services team who can provide help on the phone or through email or post if a person has difficulties or questions.

The Decision Support Service understand that using online services may not be possible for everyone. They have paper options available for people who need them.

The Decision Support Service have the authority to investigate complaints about decision-making arrangements and decision supporters. You can find their complaints form on their website at https://decisionsupportservice.ie/services/complaints/our-complaints-procedures.

You can also contact the Decision Support Service complaints team on 01 211 9750 or email compliants@decisionsupportservice.ie 

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.

The Decision Support Service 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