The importance of support and what it looks like

Dr Matthé Scholten, Ruhr University, Bochum, presented his systematic review findings that service users strongly endorse advance directives and want support in creating them (Braun et al., Reference Braun, Gaillard, Vollmann, Gather and Scholten2023). Dr Maria Redahan, TCD, presented findings from a Tallaght University Hospital survey showing that inpatient service users value input from several sources (including hospital doctors, GPs, family and friends, and support groups) when writing an AHD. Whilst awareness of Designated Healthcare Representatives was low, 74.5% participants thought it was a good idea (Redahan et al., Reference Redahan, Rock, Grudzien and Kelly2025).

The different avenues for support were debated and it was acknowledged that a supporter’s own knowledge, whether clinical, personal, or relational, could carry benefits and risks. Dr Aster Harrison, Aix-Marseille University, cited evidence that AHDs facilitated by peer workers, as opposed to healthcare professionals, are of equal or superior quality, contain more detail about preferred treatments, and are no more likely to include refusals of care (Belden et al., Reference Belden, Gilbert, Easter, Swartz and Swanson2022). Dr Nuala Kane, UCD/ HSE, argued that psychiatrists should take an active role in facilitating service users to create AHDs and that they could provide information, assess capacity, ensure the AHD was practicable, and make use of a valuable opportunity to improve the therapeutic relationship. While family members were identified as a supporting mechanism, Dr Jennifer Allen’s (UCD/HSE) study highlighted the challenges where individuals are socially isolated and have no identified trusted person within their natural network.

Time and resource limitations in busy mental health services were acknowledged by the audience and one commenter identified the need to ensure that supporting AHDs was an easy option for busy clinicians. Dr Allen identified the need to embed triggers for ACP in clinical practice, inter-professional training to enhance clinician’s confidence and skills in facilitation, and the development of a pathway to ensure consistency in approach.

The value of lived experience

Keynote speaker Dr Tania Gergel, University College London and Bipolar UK, made the case for ‘past as prologue’, arguing that service users’ lived experience of previous episodes of illness should be harnessed in planning future care. Michael John Norton, RCSI and Maynooth University, outlined how Wellness Recovery Action Plans (WRAP) can achieve this. He discussed key elements of crisis planning, including treatment preferences and key signs when supports need to step in and take over. Michael further emphasised the importance of directive makers being explicit in telling their supporters what support they need from them during a time of crisis. Professor Gavin Davidson, Queens University, Belfast, also highlighted WRAP as the most common form of ACP tool in mental health services in NI.

The experience of trauma from coercion was acknowledged, initially by Dr Scholten speaking of a friend’s parent with bipolar whose frequent hospital admissions were distressing and separated her from her young family. Dr Harrison presented forthcoming qualitative research from France suggesting that peer workers, in their role as ‘boundary actors’ (between service users and healthcare staff), may be well-placed to transform traumatic experiences into tools for recovery.

Some speakers disclosed their own experience of mental health difficulties, and the strong role of lived experience in inspiring and guiding research in this area was evident.

Trust and the therapeutic relationship

ACP was identified by several of the presenters as a relational activity, with the fostering of a therapeutic relationship and person-centred approach recognised as key elements. Dr Redahan’s study found that most participants trusted that healthcare staff would make the right decisions for them and would respect and access their AHDs when needed (Redahan et al., Reference Redahan, Rock, Grudzien and Kelly2025). The importance of trust in the therapeutic relationship was acknowledged by the audience: one commenter suggested that an AHD can either be a tool to protect yourself against staff you don’t trust or a tool to collaborate with staff you do trust in order to optimise your care.

Legal stipulations including capacity assessment

Professor Mary Donnelly, UCC, set out the legal and policy context of AHDs in Ireland, outlining intersections between AHDs and the Mental Health Act (2001) as amended by the Mental Health Amendment Act (2018), including when a person requires an involuntary admission under Part 3, which will apply regardless of AHDs. She raised complexities in applicability and in ascertaining the validity of AHDs. Professor Alex Ruck Keene SC (Hon), King’s College London and 39 Essex Chambers, discussed several such complexities including around the conditions for activating an AHD (whether these can be or should be determined by the individual, whether loss of capacity is a prerequisite), the conditions for overruling an AHD, and around scope of AHDs (e.g. what about an advance request for something unobtainable?). He emphasised that AHDs should be treated as living documents and regularly reviewed.

Capacity assessment at time of writing the AHD was subject to debate. It was raised that fear of being judged incapacitous might dissuade service users from expressing their true preferences in the AHD. However, Dr Kane argued that a capacity assessment could protect an AHD from retrospective challenge and increase the chance that the person’s wishes be upheld in future. Concern was expressed that AHDs with capacity assessments might become the gold standard and other AHDs considered less valid. One commenter argued for a focus on subjective wellbeing and recovery, rather than capacity as determined by an external party.

Complexity in mental health

Audience members raised concerns about how ACP can accommodate complex mental health conditions. Eating disorders and older adult mental health (where organic and functional disorders may co-exist and interact) were cited as particularly complex conditions. One commenter emphasised how a particular pattern of illness in the past did not preclude new or atypical presentations in future and that this might place limits on the degree to which directives can be prescriptive. The importance of a facilitated discussion to manage expectations in this regard was raised. Dr Allen’s research also highlighted the need to establish a sense of safety or degree of well-being prior to commencing ACP in mental health, and the need to be respectful of a person’s premorbid pattern of decision-making. Dr Gergel cautioned that we should not allow the ‘complex to be the enemy of the simple’, emphasising that for many people AHDs can be simple and effective in practice.

Outcomes and conclusion

The development of ACP in Northern Ireland as outlined by Professor Davidson, including the ‘Encompass’ digital healthcare record and ‘My Care app’, provides potential learning as to how ACP policy and tools could be developed in the Irish context. Following the conference, many delegates and others joined a ‘Community of Practice’ which aims to collaborate and share learning to support integration of advance care plans into mental health practice. The network is open to all and interested parties can sign up by emailing nuala.kane@ucd.ie.

Yours sincerely,

Dr Nuala Kane, MRC Psych, MD(Res), and Dr Jennifer Allen, PhD