Ethnicity

Our results show that among patients within any other ethnic group (other than White, Black or Mixed race), there was a lower likelihood of completion of advance directive compared with White patients. Factors likely to have an impact are cultural beliefs, language barriers, concerns about stigma, lower mental health literacy and the resulting challenges to accessing services. ^{Reference Memon, Taylor, Mohebati, Sundin, Cooper and Scanlon31–Reference Torres Stone, Cardemil, Keefe, Bik, Dyer and Clark36} Given previous reports in the literature, our findings are as expected and highlight the need for improved efforts to engage ethnic minority groups in advance care planning.

In stark contrast, our findings show that there was a 30% higher likelihood of having an advance directive among patients of Black or Black British ethnicity compared with White patients. Black patients experience the same difficulties that hinder ethnic minorities engaging with mental health services. Moreover, Black patients are more likely to be admitted under compulsory detention, have higher rates of in-patient admission and tend to access mental health services through crisis care pathways. ^{Reference Weich, McBride, Twigg, Duncan, Keown and Crepaz-Keay37–Reference Babatunde, Ruck Keene, Simpson, Gilbert, Stephenson and Chua42} Additionally, Black Caribbean patients have reported feeling disempowered during the treatment process and had lesser experiences of shared decision-making than was reported by their White counterparts. ^{Reference Bhui, Stansfeld, Hull, Priebe, Mole and Feder39}

Research has suggested that there is a higher demand for psychiatric advance directives among groups that experience disempowerment. ^{Reference Swanson, Swartz, Ferron, Elbogen and Van Dorn3} A sense of loss of autonomy could mean that there is reduced completion of psychiatric advance directives despite the demand, but no meaningful correlation was found. Considering the challenging circumstances under which Black patients navigate the mental health system, it could be reasonably expected that they experience disenfranchisement and therefore lower engagement with advance care planning. However, it is possible that, paradoxically, these very circumstances are contributing to an increased uptake of psychiatric advance directives among this population as a means of gaining more control over their treatment.

Another factor to be considered here is that ELFT has a notably high representation of Black and minority ethnic staff, comprising 51.9% of the workforce, compared with only 25.7% in the NHS workforce. ^{43,Reference Carter44} Research suggests that patients are more likely to develop a better relationship with clinicians of the same ethnic background because of a shared cultural understanding, and are generally more satisfied with their care. ^{Reference Moore, Coates, Watson, de Heer, McLeod and Prudhomme45} Clinician facilitation has been consistently found to be important to the successful completion of psychiatric advance care plans. ^{Reference Philip, Chandran, Stezin, Viswanathaiah, Gowda and Moirangthem13,Reference Lenagh-Glue, Thom, O’Brien, Potiki, Casey and Dawson14,Reference Juliá-Sanchis, García-Sanjuan, Zaragoza-Martí and Cabañero-Martínez16,Reference Swanson, Swartz, Elbogen, Van Dorn, Ferron and Wagner46} A higher proportion of Black and minority ethnic staff likely contributes to a more conducive partnership between patients and staff, which can promote both clinician facilitation of and patient engagement with psychiatric advance directives.

Further research needs to be done in other regions, and we also need qualitative research within this population group to corroborate and understand these findings.

Directorate and localities

Our study found that within the directorates Newham, forensic and Bedfordshire and Luton, a higher number of patients had an advance directive, and further exploration could reveal useful information for directorate management teams for service improvement, aiming to improve take up of advance directives.

It is worth noting that our findings indicate that patients within forensic services were approximately 13 times more likely to have an advance directive. A greater emphasis on relational security necessitating higher staffing ratios, improved continuity of care and better rapport between patients and staff might be contributing factors. Staff attitudes and structural factors within forensic services create an environment that promotes a more collaborative approach, with greater patient involvement in decision-making. These might be factors that significantly enhance engagement with psychiatric advance directives within forensic services. ^{Reference Kennedy47–Reference Selvin, Almqvist, Kjellin and Schröder50}

Housing status

This study found that patients living in socio-therapeutic settings are more likely to have an advance directive compared with individuals settled in more independent living conditions. This finding indicates that staff support and engagement may be a crucial factor in the completion of advance care plans among patients.

The study found no significant association between homelessness and the completion of an advance care plan, despite the known difficulties that homeless individuals face in engaging with mental health services. ^{Reference Nordentoft, Knudsen, Jessen-Petersen, Krasnik, Saelan and Brodersen51–Reference O’Carroll and Wainwright53}

Number of hospital admissions

Patients with ten or more hospital admissions were three times more likely to have an advance directive. Patients with high number of admissions would have had experiences of higher levels of pressure to engage with treatment or take medication, which has been found to be associated with an increased motivation to complete an advance care plan. ^{Reference Swanson, Swartz, Ferron, Elbogen and Van Dorn3} Studies have found that patients see mental health advance care plans as a means to avoid detention, and can use these to make their wishes known in relation to in-patient admission. ^{Reference Gowda, Noorthoorn, Lepping, Kumar, Nanjegowda and Math24,Reference Swanson, Swartz, Hannon, Elbogen, Wagner and McCauley30} As such, psychiatric advance care plans can be utilised by patients as a means to exercise control and communicate their views on their care, and it would make sense that patients with repeated in-patient admissions would be more likely to engage with them. ^{Reference Gergel, Das, Owen, Stephenson, Rifkin and Hindley5,Reference Maître, Debien, Nicaise, Wyngaerden, Le Galudec and Genest18} Moreover, a subset of patients with high number of admissions are ‘frequent attenders’ in accident and emergency departments. For these, advance care planning may be initiated by frequent attender multidisciplinary teams. Patients may also use advance directives to request crisis admissions for early support. Qualitative research and further exploration of these varied and complex reasons behind the uptake of advance care plans among this group could provide useful insights.

ICD-10 diagnoses

Patients with a recorded diagnosis of personality disorder were more likely to have an advance care plan in this study. This finding corroborates previous research that found a higher demand for psychiatric advance care planning among patients with a history of self-harm and suicidal ideation. ^{Reference Swanson, Swartz, Ferron, Elbogen and Van Dorn3} However, there is limited evidence to consider reasons for this finding and more qualitative research would be needed within this group.

Patients with diagnosed personality disorders, particularly those with emotionally unstable personality disorder, often feel stigmatised and dismissed in psychiatric settings. ^{Reference Bradbury54–Reference Myers56} Advance directives are a tool that can help patients articulate their treatment preferences, giving them a sense of control over their mental healthcare. ^{Reference Olsen57} Evidence also suggests that advance directives can reduce compulsory treatment by encouraging collaborative planning. ^{Reference Thomas and Cahill58} As such, advance directives may be a way for patients with personality disorder to feel more empowered and less dismissed by mental health services, and more in control of their care.

Further research is furthermore needed to understand the implications of the negative association between not having a recorded ICD-10 code and having an advance directive. Possible explanations include the fact that these patients are in earlier stages of their illness, undergoing assessment, and advance care planning was yet to be considered.

DIALOG PROM and PREM scores

This study found that PROM and PREM scores were associated with the completion of advance directives. Considering the importance of clinician support and facilitation toward enabling completion of advance directives, it aligns with an expectation that that there is an association with patient experience of medication, practical support and meetings. ^{Reference Gergel, Das, Owen, Stephenson, Rifkin and Hindley5,Reference Lenagh-Glue, Thom, O’Brien, Potiki, Casey and Dawson14,Reference Swanson, Swartz, Elbogen, Van Dorn, Ferron and Wagner46} However, the differences between the mean scores of both groups for both measures are very small, and might not bear much significance in practice.

Patients who engaged with the DIALOG assessment tool were over 2.5 times more likely to have an advance directive in place, and this appears to be an important finding with clinical relevance. The DIALOG assessment and corresponding intervention (DIALOG +) is a tool that aims to facilitate structured communication between patients and clinicians to support dialogue about important aspects of life and healthcare experience. ^{Reference Priebe, McCabe, Bullenkamp, Hansson, Lauber and Martinez-Leal59} As part of the care planning process, care providers go through the DIALOG scale questionnaire with patients at regular intervals. ^{Reference Mosler, Priebe and Bird60} Research suggests that patients are more likely to complete psychiatric advance care plans if they receive support from someone during their treatment journey, ^{Reference Philip, Chandran, Stezin, Viswanathaiah, Gowda and Moirangthem13,Reference Lenagh-Glue, Thom, O’Brien, Potiki, Casey and Dawson14} and staff efforts to engage patients in completing DIALOG may instil a sense of feeling supported. Structured communication with the aim of understanding patient perspectives could support engagement in advance care planning with staff. However, further research is needed to understand this association, preferably with qualitative research of patients and staff.

For some patients, advance care planning may be a way to assert personal healthcare wishes and retain control within their care trajectory amid coercive practices and systemic barriers. Psychiatric advance directives are a valuable tool for healthcare professionals to support patients with shared decision-making about their care and, for patients with severe mental illness, they promote empowerment and shared decision-making for care planning. Regardless, staff support is an important facilitator to completion, and structured communication and stronger therapeutic relationships, as well as an established co-production service culture, are likely to encourage advance care planning.

To understand the utility and implications of psychiatric advance directives in practice, a national audit initiative to adequately record and monitor the uptake of psychiatric advance directives according to standardised definitions could inform further research in this area. Moving forward, qualitative research is required to involve patient, carer and professional perspectives to better understand individual and systemic factors influencing the completion of advance care plans; this should evaluate the content of psychiatric advance directives, the quality of co-production and the impact on recovery. In addition, focused research studies in ethnic minority groups and specialist services like forensic services are needed.