The Assisted Decision-Making (Capacity) Act 2015 (the "2015 Act") took effect on 26 April 2023. The principal impact of the 2015 Act is that it gives legal effect to prior decisions by persons over 18 that subsequently go on to lose decision-making capacity.
Deciding whether or not a person lacks capacity
As a starting point, practitioners need to consider whether the patient before them may lack capacity to make decisions about their medical treatment. Under the 2015 Act, a person's capacity to make a decision is assessed based on their ability to understand, at a specific point in time, that (i) a decision is to be made, (ii) the nature and consequences of that decision, and (iii) the context in which they are making the decision, given the availability of alternative options.
The 2015 Act contains several "guiding principles" which must be complied with when treating a person without capacity, or a person whose capacity is in question. These principles include:
- A presumption that a person has capacity to decide something unless proven otherwise, even if that person has made a decision which may appear unwise to an outside observer.
- No intervention is to occur unless necessary, and practitioners should consider the urgency with which an intervention is needed. Any intervention must be limited in duration as far as practicable, and interfere as little as possible with the patient's personal rights and freedoms.
- Practitioners must assist patients and facilitate them making their own decisions before any conclusion is reached about their capacity. For example, by providing patients with all relevant information or making accommodations to help them to understand the information and meaningfully participate in the decision.
- Practitioners must act in good faith at all times. They must give effect to the past and present will and preferences of the patient or, if applicable, take into account the views of any "named person" or "intervenor" on the patient's behalf (see below).
As the 2015 Act provides for, among other things, assisted and formal prior decisions to be made regarding medical care.
Practitioners will need to be aware of the following key provisions:
Assistance with Present Day Healthcare Decisions
While the High Court retains inherent jurisdiction in the event of any legislative lacunas, the old Ward of Court system for adults lacking capacity has been abolished. Within the next 3 years, the Wardship Court is to review the capacity of all persons under its remit.
In its place, a new system has been set up under the remit of the Decision Support Service ("DSS"), to allow patients' personal preferences and beliefs on the provision of medical care to be reflected as far as is possible. Patients may do this by entering into a formal agreement when they consider their capacity may be in question now or in the near future. Through such an agreement, patients may appoint another person over 18 years of age to be a:
(i) Decision-Making Assistant – this person assists by obtaining relevant information for the patient, explaining it to them, ascertaining their will and preferences and communicating this to the relevant treating practitioner(s) to ensure the patient's decision is implemented. These agreements expire after 3 years and do not need to be registered with the DSS; or
(ii) Co-Decision Maker – this person jointly makes decisions with the patient on the provision of healthcare. The Co-Decision Maker will obtain and explain to the patient any relevant information and discuss the patient's will and preferences with them. Once a Co-Decision Making Agreement has been registered with the DSS, any decisions made within its scope on the patient's behalf without involvement of both the patient and the Co-Decision Maker will be invalid. Decisions taken within the remit of a registered Co-Decision Making Agreement cannot be challenged on the grounds that the patient did not have capacity. Practitioners should be sure to find out whether such an agreement exists by asking the patient for a copy, or searching the DSS register.
The 9th Edition of the Medical Council's Guide to Professional Conduct and Ethics for Medical Practitioners (the "Guide") contains useful guidance for dealing with patients lacking capacity. The Guide came into effect at the beginning of 2024. In addition to reiterating the 2015 Act principles listed above, the Guide says that when giving effect to a patient's past will and preferences, practitioners must take into account the patient's beliefs, values and any other factors the patient would be likely to consider. In addition to being required to take the views of Decision-Making Assistants into account, practitioners may consider views of other persons with a bona fide interest in the patient's welfare (eg family members, carers etc).
Decisions made under the above arrangements can still be characterised as a patient making their own decision, albeit with assistance. By contrast, when a person's capacity is in question (regardless of whether one of the formal agreements above is in place), any person with a bona fide interest in the welfare of that patient may apply to the Circuit Court (or the High Court in exceptional circumstances) for a declaration as to the patient's capacity and / or the lawfulness of the proposed medical intervention.
In deciding such applications, the Court will have regard to a number of factors. These include (a) the patient's will and preferences (if known), (b) any Advance Healthcare Directives (see below) and (c) whether the patient appointed a Decision-Making Assistant or Co-Decision Maker. If an Advance Healthcare Directive is in place, the Court will ensure its decision does not interfere with the scope of that Advance Healthcare Directive.
The Court may declare that a person would lack capacity unless a Co-Decision Maker is provided to them, or that the person simply lacks capacity (ie even if Co-Decision Maker were to be appointed). The Court will then make either a Decision-Making Order authorising the intervention, or an order placing a Decision-Making Representative in place for the patient – a third category of decision-maker:
(iii) "Decision-Making Representative" ("DMR") – a person to ascertain the will and preferences of the patient and communicate this to the relevant practitioner(s). If this cannot be done because the patient lacks capacity, the representative can make the decision on behalf of the patient. If this person is appointed on the basis that the patient would have capacity if a Co-Decision Maker was assisting, the decision must be made jointly with the patient.
In one of the first decisions under the 2015 Act, in the matter of Joan Doe, it was held that family members are not necessarily always best placed to be appointed as DMRs. In that case, the patient had no children but was assisting various other family members financially from her appreciable pool of assets. The HSE contended that decisions about her medical and financial affairs should be made by independent persons in such circumstances. The Circuit Court agreed that independent DMRs should be appointed from the DSS' panel where family tensions and conflicts of interest meant they were not best placed to promote the patient's preferences. It was stressed that the Court must respect a person's will and preferences, while being conscious of the need for effective safeguards to prevent abuse.
It is worth noting that Enduring Powers of Attorney ("EPA") made under the 2015 Act do not cover refusal or consent to medical treatment. EPAs allow people to appoint another person to act on their behalf in respect of their affairs. While practitioners are involved in the creation and execution of an EPA (by declaring the donor's capacity at the time the EPA is made, and that capacity is lost when the EPA is to be executed), the EPA itself does not authorise the attorney to make healthcare decisions.
Planning of Future Healthcare Decisions – Advance Healthcare Directives
While patients still have decision-making capacity, the 2015 Act allows them to put formal directives on their future treatment preferences in place. This directive becomes active and must be respected if the patient subsequently loses capacity. The Guide mentions that it is good practice for practitioners with an ongoing relationship with patients to hold discussions with them about their future treatment.
These statements are known as "Advance Healthcare Directives" ("AHD"). In order to be valid, AHDs must contain certain information specified in Part 8 of the 2015 Act, be made voluntarily and be "in writing" (includes video or voice recording). AHDs made outside of Ireland may still be enforceable once they comply with the requirements set out in the 2015 Act. Once it has been decided that a patient no longer has capacity, practitioners should take steps to ascertain whether a valid AHD is in place.
AHDs provide practitioners with information about the will, preferences and treatment choices of incapacitated patients. For example, an AHD may alert practitioners to the fact that a person wishes to refuse certain treatments based on their religion or personal beliefs. Valid AHDs must be respected when deciding upon a patient's treatment, even if the decision appears to be unwise or may result in the patient's death.
AHDs can be invalidated by actions taken since they were first made which are clearly inconsistent with the AHD, eg a Jehovah's witness changing religion after putting in place an AHD to refuse blood transfusions. They may also be rendered invalid if the actual circumstances in which a patient finds themselves are not covered by the AHD. For example, if an AHD directed refusal of chemotherapy, this may not apply to a novel cancer treatment option discovered in the future.
AHDs may extend to decisions to refuse life-sustaining treatment. However, this will only take effect if the circumstances of refusal are specifically and explicitly identified within the AHD.
As well as refusing treatment, AHDs allow a patient to request a specific treatment. While not legally binding on practitioners, this request must be taken into account assuming the requested treatment is relevant to the patient's illness.
To ensure their AHD is followed, the patient may appoint a Designated Healthcare Representative ("DHR") to act on their behalf to interpret the content of their AHD and ensure their wishes are carried out. The DHR may refuse or consent to treatment on the patient's behalf on the basis of the patient's known will and preferences. This includes deciding on life sustaining treatment, but only if the DHR is explicitly given the power to do so in the AHD. If deviating from an AHD, practitioners must record the reasons for doing so – for example, explaining their belief that the circumstances set out in the AHD do not apply. If a DHR is in place, these reasons must be provided to them within 7 days of being recorded.
Invalid AHDs and Practitioner Liability
If there is any ambiguity in an AHD, practitioners should first consult with the DHR, the patient's family and friends (if no DHR is appointed) or, failing these options, another practitioner. If the ambiguity cannot be resolved, practitioners should favour the interpretation which preserves the patient's life.
AHDs will not apply where (i) the patient has capacity, (ii) the proposed treatment is not clearly identified as being within the scope of the AHD, or (iii) the directions in the AHD are absent or significantly different to the circumstances a practitioner finds themselves in. AHDs also do not apply to the refusal of "basic care" such as shelter, warmth, hygiene, nutrition and hydration (note: artificial nutrition / hydration are not considered "basic care", meaning AHDs may apply).
In certain circumstances, Practitioners may be protected from liability under the 2015 Act. For example, if a practitioner complies in good faith with an AHD which they reasonably believed to be valid and applicable, or departs from an AHD which they reasonably believed to be inapplicable. Another protection is given by the 2015 Act in situations where a practitioner has no reason to believe an AHD existed or if they could not access it in time due to the urgency of a patient's condition.
Despite this protection, it is highly advisable for practitioners to seek legal advice before assuming the above protections will apply, and to contemporaneously record their decisions on the validity or otherwise of AHDs.
If appropriate, applications can be made to the Circuit Court under Section 89 of the 2015 Act for a declaration of the validity / applicability of an AHD, or of whether a DHR is acting within the scope of their powers. Applications involving life sustaining treatment are made to the High Court. While awaiting the Court's decision, the provision of life sustaining treatment is permitted. This includes taking action to prevent a serious deterioration of the patient.
Conclusion
Practitioners will need to be cognisant going forward of the potential for patients whose capacity is in question to (a) receive assistance to make a decision, or (b) have a previous Advance Healthcare Directive in place regarding their treatment. While there are currently no formal structures in place in terms of storing or registering AHDs, practitioners should take reasonable steps to ascertain whether an AHD exists and the formal requirements for an AHD to be valid.
The DSS have helpfully produced a Code of Practice for Healthcare Practitioners to consider when faced with issues falling under the 2015 Act. The Code of Conduct is available here, and should be read alongside the 2015 Act.
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