Promoting assisted decision-making in acute care settings for care planning purposes: Study protocol

Background and justifications

The Assisted Decision-Making (Capacity) Act 2015 was enacted by Dáil Éireann in December 2015. The Act gives effect to two international Conventions: the UN Convention of the Rights of Persons with Disabilities (2006) and the Hague Convention on the International Protection of Adults (2000). It is a major piece of legislation providing reform of the law regarding adults (18+) who require, or who may require assistance in exercising their decision-making capacity. The fundamental principles of the Act state that it shall be presumed that a person has capacity in respect of a decision unless the contrary is shown in accordance with the provisions of the Act for evaluating decision-making capacity (Assisted Decision-Making (Capacity) Act, 2015). These provisions set out an understanding of capacity, which is functional and time-bound. According to the Act, a person’s capacity is to be assessed on the basis of the individual’s ability to understand, at the time that a decision is to be made, the nature and consequences of the decision to be made by him or her, in the context of the available choices at that time. This Act applies to everyone and has relevance for all health and social care services. The purpose of the Act as it applies to healthcare, is to promote the autonomy of persons in relation to their treatment choices, to enable them to be treated according to their will and preferences and to provide healthcare professionals with important information about persons and their choices in relation to treatment.

While the enactment of the Assisted Decision-Making Bill in 2015 is to be celebrated as facilitating Ireland in ratifying the UN Convention on the Rights of Persons with Disabilities, the commencement and implementation of the Act poses challenges to the health sector, and in particular the acute health sector. Codes of practice have yet to be implemented which will facilitate the adoption of the Act within healthcare practice. The Irish Hospice Foundation (2016) notes that there is professional uncertainty as to how to support and integrate assisted decision-making (ADM) into the care of all adults. It is anticipated that those patients with cognitive impairment, particularly dementia, and those with complex needs requiring composite decisions present the greatest challenge to healthcare professionals practicing in accordance with this legislation. Patients with complex needs requiring multifaceted decisions are most likely to present in acute hospitals; approximately 40% of all people aged over 70 years admitted to acute hospitals have dementia and/or delirium (Timmons et al., 2015). Education and training in relation to ADM along with codes of practice which will guide the responses of healthcare staff are necessary to ensure successful implementation of the Act within the acute care setting.

Internationally, the evidence points to a gap of best practice in supporting ADM within health and social care delivery (Dyrstad et al., 2015; Smebye et al., 2012; Taghizadeh Larsson & Österholm, 2014). Research evidence has highlighted a disparity between physician support for the principles of ADM and the lack of impact this support has on actual clinical decision-making in practice (Bond & Lowton, 2011; Regnard & Louw, 2011). For example, in a study of geriatrician views of advance care decisions (an aspect of ADM), Bond & Lowton (2011) noted a disparity between doctors’ beneficence and patients’ autonomy, particularly where a patient’s decision conflicts with a physician’s understanding of best interests. Research has found that in Ireland assisted patient/client decision-making and the implementation of patient preferences into care plans are hindered by contextual barriers including limited resources, lack of training and education, interpersonal and family dynamics, as well as cultural assumptions and values regarding capacity (Donnelly et al., In Press; O’Donnell et al., 2015).

Older people and their family carers, including those who are living with dementia, are a key demographic relevant to the implementation of the ADM legislation in Irish health and social care services. As in other jurisdictions Ireland’s population is ageing, with the number of people aged 65 and older standing at 19.1% of the overall population (CSO, 2017). Alongside this, the number of people living with dementia is expected to increase exponentially. Based on current population trends, it is predicted that the number of people living with dementia will rise from 55,000, to 94,042 people by 2031 and 152,157 by 2046 (Pierce et al., 2014). People with dementia are also high users of health and social care. For example, one in four acute hospital beds (Timmons et al., 2015) and 37% of all long-stay beds are occupied by someone with dementia (Smyth et al., 2017). Therefore, acute care planning with and for older people provides the focus of this protocol, however the project outputs will have applicability across the spectrum of the health and social care system.

Implementing any intervention in healthcare is complex and challenging. Complex interventions, such as assisted decision-making, operate across diverse health and social settings, professional boundaries and levels of care delivery. Multiple sources of contingency and a wide variety of confounding factors influence implementation such as organisational structures, culture, policy, economics, and individual and organisational behaviours (Damschroder et al., 2009; May, 2013). The realities are that even the strongest evidence can be mitigated by the conditions of the healthcare context (Rycroft-Malone et al., 2012). Research indicates that better implementation efforts are achieved when behavioural and contextual challenges are identified and supported using effective mechanisms of behaviour change (Grimshaw et al., 2012; Michie et al., 2011). Professional behavioural barriers to implementing new clinical guideline practices have been attributed to lack of knowledge and self-efficacy manifesting in behavioural resistance in performing new practices. The value of education and training interventions is emphasised as a key strategy to address these challenges (Fischer et al., 2016).

A review by Ricciardi & De Paolis (2014) concluded that healthcare staff who participated in serious games had better skill retention in comparison to staff who engaged in traditional learning processes. PlayDecide is a versatile open access serious game that has been proven to have good application to potentially provocative, sensitive or controversial issues (Ward et al., 2017). The game initiates dialogue between healthcare professionals and patients in an informal safe environment. It is within this context that we designed the ‘Promoting Assisted Decision-Making within Acute Care Settings’ (PADMACs) project. This project is funded by the Irish Health Research Board Applied Partnership Awards (APA). The APA scheme supports applied research projects bringing academic researchers and knowledge users together to ensure that research findings have a direct impact on practice. The PADMACs project team brings together researchers and knowledge users from UCD School of Nursing, Midwifery and Health Systems, The Royal College of Physicians Ireland (RCPI), St Vincent’s University Hospital (SVUH) and The Mater Misericordiae Hospital (MMUH), as well as public and patient representative organisations Family Carers Ireland and the Alzheimer’s Society of Ireland. The engagement of RCPI as the knowledge lead, as well as hospital staff and clinical leaders as further knowledge users, will enable the development of highly relevant PlayDecide game which will have an immediate impact on knowledge user organisations.

Study design

The study design for this project is mapped out over four consecutive work packages combining a multimethod approach including rapid realist review, qualitative exploration, participatory learning and action sets, and intervention trialling and revision. Developmentally, the project can be located in the exploratory or modelling stages of complex intervention development and evaluation (Craig et al., 2008). Arguably, the design of a behaviour change intervention aimed at promoting ADM within acute care settings can be viewed as a context bound ‘complex intervention’.

Theory-based interventions are critical to the effective design of behaviour change programmes (Craig et al., 2008; Grimshaw et al., 2012; Michie et al., 2014). The Behaviour Change Wheel (BCW) is a synthesis model of several behavioural change theories, and has made significant contribution to the field of Implementation Science and behaviour change intervention design. The inner core of the BCW maps a concept of Behaviour (B) into three interdependent component elements: Capability (C), Opportunity (O) and Motivation (M). This COM-B model acknowledges that to instigate behaviour change requires individuals or groups to have sufficient capability (physical and psychological) alongside opportunity (social and physical) and motivation (reflective and automatic). The COM-B behavioural analysis guides the choice of intervention functions to those most likely to achieve desired behavioural change. The taxonomy of Behavioural Change Techniques (BCTTv1) provides for a more granular detailed intervention design on the underlying mechanisms and ‘active ingredients’ which can support behaviour change. The framework strengths include: its multidisciplinary origin lending itself to a broad frame to evaluate behavioural change that is particularly valuable for interventions related to implementing evidence into practice (Michie et al., 2005). The COM-B, BCW and BCTTv1 will provide an evidence informed design framework for the PlayDecide intervention resulting from this project.

The PADMACS study will identify mechanisms which enable healthcare professionals to adopt ADM behaviour and engage their patients in treatment decision-making during acute care planning through a rapid realist review of international literature (WP1). Current practice with regard to care planning for older people will be captured through exploratory qualitative analysis, with multi-disciplinary healthcare professionals from two acute hospitals, as well as family carers and older people with recent experience of acute care (WP2). The nuanced data collected from both the rapid realist review as well as the qualitative exploratory stages of this research will inform the next phase of the project design; participatory learning and action workshops (WP 3) and the development of a prototype PlayDecide game. The final phase (WP 4) of the game will involve a series of iterative trials in order to adapt the prototype emerging from the workshops and refine it to develop an implementation process model for transferability to the knowledge user organization (RCPI). Figure 1 illustrates the key elements of each work package and demonstrates the work flow in the study design.

Figure 1. Overview of research design.

Status of study

The study commenced in December 2017 and the first work package is currently underway including preparation of submissions to the hospital research ethics committees in SVUH and MMUH and UCD. The rationale for the rapid realist review has been agreed by the project team and the expert and reference panels have been appointed. The first meeting of the expert panel is scheduled for early March 2018 in order to agree the programme theory which will decide the initial search strategy for the review of literature.

Public involvement in research

In line with the guidance from Involve UK the involvement of public and patients has been incorporated into this project from the point of funding application and proposal development through to the dissemination of research outputs. Meaningful public and patient involvement in this project will not only ensure the research quality and relevance, but also will ensure the research is informed by broader democratic principles and the values of accountability and transparency which are fundamental to the principles of the Assisted Decision-Making Act (2015). A panel of PPI representatives called the Older People’s Empowerment Network were consulted throughout the period of project proposal development. Furthermore, two public/patient representative organisations; Family Carers Ireland and Alzheimer’s Society Ireland have nominated a staff member to represent their membership as collaborators on this project. Consultation with these collaborators was undertaken in preparation for this grant proposal in order to obtain their input in shaping the research design and strategy; this PPI collaboration will continue throughout the lifetime of the project.

The project team members have experience of facilitating the active involvement of patient/public representatives alongside representatives of health and social care professionals in participatory research projects and in the co-design of healthcare interventions. The recruitment of PPI representatives to the project steering group, to the qualitative data collection (WP2) as well as to the PLA workshops (WP3) will be facilitated by the project PPI collaborators. These third sector advocates will act as gatekeepers and as a link person for PPI members to the study. Each PLA workshop will be co-facilitated by an academic team member with experience of facilitating inter-disciplinary workshops as well as by a third sector advocate. This will ensure that each workshop is being chaired by a public/patient advocate who is familiar to the PPI participant. Furthermore, a critical mass of PPI members (N>2) will be recruited for each workshop. Finally, the team propose to offer a capacity development session before the commencement of the PLA workshops in which public/patient representatives will be given the opportunity to meet with each other as well as with the project team in a relaxed, informal setting and to obtain some information about the project.

Dissemination of results

The serious game which results from this project will be embedded into the pedagogic strategies of the RCPI in its physician postgraduate education curricula as well as the continuous professional development scheme. The project will result in multi-disciplinary local champions within the hospital settings who have knowledge and understanding of the legislation and who are prepared to steer its successful implementation into acute care practice. Under a creative commons licence, the project team will facilitate access to the PlayDecide open source materials through a range of websites including UCD research repository and the PlayDecide dissemination platform. The findings from this study will also be disseminated to the research community through publications in international peer-reviewed open access journals and presentations at national and international conferences. Patient advocacy groups and our PPI collaborator organisations, will also disseminate the findings to patients, their families and the public through their websites, patient newsletters and information evenings.

Conclusion

The targeted beneficiaries of this project are healthcare professionals working within acute care settings as well as older people and their family carers who are interacting with the acute care system. The potential impact is improved communication between healthcare professionals and their patients in relation to assisted decision-making (ADM) and care planning. We expect that through involvement in the programme of research that there will be an impact upon the behaviours of the participating healthcare staff in both partner hospital settings (MMUH and SVUH). In particular, local ADM champions will be identified in each of the hospital sites. Through their engagement in the Participatory Learning and Action (PLA) workshops (WP 3) these champions will develop knowledge of the legislation and ensuing guidelines as well as the complexities and nuances associated with implementing ADM in clinical practice. Following their participation in the project they will be poised facilitate the successful implementation of the provisions of the 2015 Act within their settings and through their influence on their peers will be integral to instilling a meaningful and sustained shift in the culture and values which inform acute care practice in relation to ADM.

We expect that the outputs from this project will impact the behaviour of healthcare professionals in relation to engaging patients in treatment decision-making and healthcare planning. This intervention addresses the cultural and social contexts in which behaviour occurs as well as the individual motivational factors, therefore it is expected it will promote ADM within acute care settings. This is integral to the successful adoption of the provisions of the 2015 Act into healthcare settings. The ultimate beneficiary of this project therefore are the patients and family carers who are communicating their care preferences and decisions to healthcare professionals. They will benefit from interacting with professionals who understand the issues involved, are prepared to have these conversations and are doing so in a supportive and open environment. The study also has implications for the training of physicians and it is intended that this educational intervention will be embedded into the pedagogic strategies of the RCPI in their postgraduate education curricula as well as the continuous professional development scheme. This translation of the research output into practice will be facilitated by the game methodology employed in the project; it does not require a trained facilitator but can be facilitated by any member of the team and it is an open source tool available under a creative commons licence.

Data availability

All data underlying the results are available as part of the article and no additional source data are required