Implementing advance care planning in routine nursing home care: The development of the theory-based ACP+ program

Summary

Background

While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice.

Objectives

We report on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. We aimed to 1) specify how intervention components can be delivered; 2) evaluate the feasibility and acceptability of the program; 3) describe the final program in a standardized manner.

Design

To develop and model the intervention, we applied multiple study methods including a literature review, expert discussions and individual and group interviews with nursing home staff and management. We recruited participants through convenience sampling.

Setting and participants

Management and staff (n = 17) from five nursing homes in Flanders (Belgium), a multidisciplinary expert group and a palliative care nurse-trainer.

Methods

The work was carried out by means of 1) operationalization of key intervention components–identified as part of a previously developed theory on how advance care planning is expected to lead to its desired outcomes in nursing homes–into specific activities and materials, through expert discussions and review of existing advance care planning programs; 2) evaluation of feasibility and acceptability of the program through interviews with nursing home management and staff and expert revisions; and 3) standardized description of the final program according to the TIDieR checklist. During step 2, we used thematic analysis.

Results

The original program with nine key components was expanded to include ten intervention components, 22 activities and 17 materials to support delivery into routine nursing home care. The final ACP+ program includes ongoing training and coaching, management engagement, different roles and responsibilities in organizing advance care planning, conversations, documentation and information transfer, integration of advance care planning into multidisciplinary meetings, auditing, and tailoring to the specific setting. These components are to be implemented stepwise throughout an intervention period. The program involves the entire nursing home workforce. The support of an external trainer decreases as nursing home staff become more autonomous in organizing advance care planning.

Conclusions

The multicomponent ACP+ program involves residents, family, and the different groups of people working in the nursing home. It is deemed feasible and acceptable by nursing home staff and management. The findings presented in this paper, alongside results of the subsequent randomized controlled cluster trial, can facilitate comparison, replicability and translation of the intervention into practice.

Keywords:

Physicians – Allied health care professionals – Nurses – Reflection – dementia – palliative care – Nursing homes – Verbal communication

Introduction

Advance care planning (ACP) is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care [1,2]. If a person chooses, the contents of such conversations can be set down in writing [3].

Advance care planning is particularly relevant for frail older adults residing in nursing homes, due to the high probability that they will develop cognitive impairment and loss of decision-making capacity towards the end of life [4,5]. However, despite widespread recognition of its importance, still only a minority engaged in advance care planning [6,7]. Findings suggest this is the case for over a quarter of older US Medicare beneficiaries and the majority of long-term care residents [8,9]. In Europe, recent numbers show 32.5% of deceased residents had had a written directive, the most common type being a ‘do not resuscitate (DNR) order’. Extensive differences were found between countries [10]. A survey carried out in Flanders (Belgium) showed that a minority of deceased nursing home residents (11.8%) had expressed their wishes regarding end-of-life care, and that only 13.8% had a patient-reported advance directive at time of death [11]. For the purpose of documenting advance care planning, a number of possibilities are available in Belgium: an advance directive to refuse treatment (e.g. Do-Not-Resuscitate), nomination of a surrogate decision-maker and an advance statement which sets out general wishes or personal values. Only advance directives refusing treatment are legally binding for healthcare staff. Belgium also recognizes a type of positive advance directive for euthanasia [12–14]. To date, healthcare professionals in Belgium are not legally obliged to initiate advance care planning conversations with their patients but are encouraged to by local governments.

Recent reviews show advance care planning interventions, especially those in nursing homes, are increasingly multicomponent programs involving different types of staff training, education for patients and family, and elements such as flagging advance care planning outcomes in charts and feedback on a resident’s advance care planning status to physicians [15–17]. Researchers have stated with regard to this that nursing homes must change at every level, from management to frontline staff, if they are to achieve meaningful change in advance care planning uptake, and that such change should become and remain part of daily practice, not an on-off activity [18,19]. However, this is still what current advance care planning interventions often fail to do. They are mainly delivered by a ‘specialized group’ of expert facilitators [20], and training sessions are predominantly provided to nursing staff [21], social workers [22], and in rare cases, to healthcare professionals outside the facility (family physicians or emergency staff) [21]. Specific focus on engaging nursing home management and involving the entire nursing home workforce, including those that perform non-care tasks (e.g. cleaning staff or volunteers), has not been incorporated explicitly, although it is considered to be a crucial factor [23].

In previous work, we used a Theory of Change approach to develop a theoretical model of advance care planning for nursing homes [24]. This model is a ‘program theory’ rather than a ‘grand theory’ such as the Theory of Planned Behavior [25,26]. It shows how or under what circumstances advance care planning is hypothesized to work and can best be implemented in nursing homes in Flanders, Belgium. It outlines nine possible intervention components necessary to achieve change in the desired outcomes. However, these components need to be operationalized further into specific activities and intervention materials, tested for feasibility and acceptability, and described in such a way that they allow for comparison with other programs, replication, and translation into practice.

This paper reports on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. The objectives of the study were threefold: 1) to specify how each intervention component can be delivered into routine nursing home care; 2) to evaluate feasibility and acceptability of the program; 3) to describe the final program in a standardized manner. The program is currently being evaluated in a cluster randomized controlled trial (ClinicalTrials.gov, no. NCT03521206, May 10, 2018).

Methods and materials

The three objectives are achieved through three consecutive steps, outlined below. To develop and model our complex intervention according to the Medical Research Council (MRC) framework [27,28], we applied multiple study methods, including a literature review, discussions with a multidisciplinary expert group, semi-structured individual and group interviews with nursing home management and staff, and feedback from a palliative care nurse-trainer.

Step 1. Translation of key intervention components into specific intervention activities and materials

The nine key intervention components, identified as part of a previously developed theoretical model on how advance care planning is expected to lead to its desired outcomes in nursing homes [24], are converted into specific activities with accompanying materials. To do so, we performed discussions within a multidisciplinary expert group and a review of existing advance care planning programs published in academic literature. The expert group consisted of an ethicist, three psychologists, a family physician, a sociologist, a social worker and a palliative care nurse who has a PhD in nursing and is specialized in providing training to healthcare professionals and implementing complex interventions in nursing homes. They convened once a month from April 2016 until March 2017. Available intervention materials from existing programs [21,22,29–39] were identified (e.g. training manuals, informational leaflets, conversation guide, documents), based on two existing systematic literature reviews and literature selection by the expert group [18,38,40]. The leading researchers in the two programs entailing a systematic, whole-setting approach and available in Dutch, were contacted to review the intervention materials they used for potential inclusion in our intervention [33,38]. For the intervention activities that we considered including in our intervention and for which no suitable materials could be identified in other existing programs, we used and adapted existing guidelines or informational materials, made available within the region (e.g. advance directives developed by the Belgian Federal Ministry of Health in 2017; www.leif.be) [29,41–43].

Step 2. Evaluation of the feasibility and acceptability of the implementation of the program

We conducted an evaluation of the perceived feasibility (‘the extent to which the intervention can be delivered as intended’ [27]) and acceptability (‘the extent to which people delivering or receiving the intervention consider it to be appropriate’ [44]) of the intervention activities, the materials and the program’s implementation via interviews with nursing home management and staff, and revision of all intervention materials by the palliative care nurse-trainer.

• Between April and November 2017, we carried out three semi-structured group interviews with 15 staff members and managers of three nursing homes, and two individual semi-structured interviews with healthcare professionals with extensive experience in advance care planning from two other nursing homes, because other team members in these nursing homes refused to participate due to busy work schedules. No additional interviews were carried out because we felt we had reached data saturation. The participants were paid nursing home employees and were recruited through convenience sampling via regional palliative care, dementia and nursing home networks and newsletters. Trainees and interns were excluded from participation. Each interview lasted on average 120 minutes (range: 90–190 min). All participants were asked to fill out a short survey of their individual characteristics (sex, age, job position, number of years active, training) and facility characteristics (type, number of beds, average number of deaths, guidelines available regarding palliative care, advance care planning documents, multidisciplinary meetings), and were asked to sign an informed consent form to audiotape the interview. All interviews were facilitated by JG and AWvD, according to a pre-specified topic list. Participants were asked to evaluate: (i) informational leaflets, guidance documents and manuals that we intend to use in the intervention, including those provided to participants or used in intervention delivery; (ii) enabling or supportive intervention activities; (iii) the modes of delivery of each intervention activity; (iv) any infrastructure and resources perceived necessary to deliver each intervention activity; (v) timing (including number of training sessions, advance care planning conversations, meetings), their schedule, and their duration; and (vi) which parts of the intervention should be adapted to better fit nursing home routine care. All audio records were transcribed.

• All intervention materials were additionally reviewed and revised by and discussed with the nurse-trainer. She previously worked with the research team and was contacted directly by the researchers.

We applied thematic analysis to structure the comments of all participants, according to the Template for Intervention Description and Replication (TIDieR) checklist. Suggested adaptations were discussed within multiple meetings with the expert group and nurse-trainer. Decisions about changes to the initial intervention were consensus-based. Suggested changes that were not included in the renewed intervention, mainly due to time and resource constraints, are reported in S2 Table.

Step 3. Standardized description of the final program according to TIDieR

To describe the final ACP+ program, we used the TIDieR checklist describing the why, who, how, where, when, how much and elements of tailoring of the intervention program [45].

Results

Translating ACP+ components into activities and materials (results of step 1)

Table 1 shows the original nine intervention components and the 16 intervention activities and materials underpinning them. The entire program and each of the activities should be implemented gradually, using a step-by-step approach. We distinguish a preparation phase and a follow-up phase. This phased implementation approach resulted from our previous work which built on theories highlighting that people and organizations progress through a series of stages or phases when modifying behavior or organizational structures with the help of interventions [24].

We also distinguish several roles. ACP Trainers will be available for nursing homes to support staff in implementing advance care planning. These trainers should be skilled and experienced in change management, have clinical practice experience in nursing homes and specifically in performing advance care planning conversations, and be able to train other professionals. The trainer’s support is intensive at the beginning but decreases throughout the process as the ACP Reference Persons become increasingly autonomous. The nomination of several ‘ACP Reference Persons’ is at the core of the program. These are professionals employed by the nursing home who have roles in daily resident care (e.g. head nurses, team coordinators, nurses, palliative care reference persons, reference persons for dementia, psychologists, members of the palliative care team). The ACP Reference Persons’ main responsibility is to implement and sustain advance care planning within the nursing home. They market the program, communicate that it has a high priority, provide training to other staff, conduct advance care planning conversations, and perform regular monitoring of advance care planning procedures and outcomes within the nursing home. ‘ACP Conversation Facilitators’ are healthcare staff, who are—along with ACP Reference Persons—responsible for planning and performing regular advance care planning conversations with residents and family. All other nursing home staff who do not necessarily provide resident care but do have daily contact with residents or family (e.g. care assistants, hairdressers, cleaning staff, administrative staff, volunteers), are called ‘ACP Antennas’. They recognize and signal triggers that are indicative of a person being ready or willing to engage in advance care planning.

All intervention materials, prepared to deliver the ACP+ program, their original source and adaptations made to the materials by the researchers, before testing in step 2, are provided in in the Supplementary Information Materials (S1 Table).

Revisions to enhance the feasibility and acceptability of the program (results of step 2)

The characteristics of the participants in step 2 can be found in S3 Table. The majority of participants were female, had more than 15 years’ work experience in their current position, and were trained in palliative care. Participants included nurses, care assistants, social workers, a coordinating advisory physician, a physical therapist, and management (i.e. quality coordinator and head of resident care). They were employed in public or private non-profit nursing homes, with numbers of beds ranging from 80 to 360.

Participants’ perceptions of the feasibility and acceptability of the program’s implementation did not vary extensively. All professional stakeholders and the nurse-trainer agreed with the suggested benefits of ACP+ for the nursing home and most thought the program was worthwhile. While maintaining the core principles of the program, their comments resulted in several adjustments to the components, activities and materials. Details of the identified issues and subsequent changes are provided in the Supporting Information Materials (S2 Table).

Important changes to intervention components and activities

Involving family physicians in an intensive information session was deemed not feasible. In addition, participants felt the provision of general information via leaflets and posters very helpful and that sessions should be adapted to fit the physician’s working schedules.

“Family physicians will come to your information session if it is organized late, after 5 p.m. and if you arrange accreditation” (quality coordinator)

“Make sure staff are trained to contact the physician to make sure he/she knows an ACP conversation is about to be organized but make sure staff does not wait before the physician takes the first step” (coordinating advisory physician)

In the final program, staff are asked to contact family physicians to inform them about the new advance care planning procedures and ask them how they would like to be involved in their patient’s advance care planning. Family physicians should be invited for an accredited information session, organized by a trainer and the nursing home’s coordinating advisory physician, after 5 p.m.

Staff felt the program would be too time-intensive if several intervention activities were not combined into one activity. It was also recommended always to take lack of time and low staffing levels into account while organizing intervention activities.

“Make sure you combine the information session with the training of recognizing signals; and do this during lunch or at a time when it does not take up too much time. Split one session of 4 hours into 2 of 2 hours; otherwise care is interrupted.” (nurse)

The activity aimed at informing staff, the nursing home’s coordinating and advisory physician, and management was removed and replaced by word of mouth, internal meetings, folders/posters and training sessions to communicate information about advance care planning to personnel who are additionally trained in recognizing triggers. Moreover, management and the coordinating physician should be informed earlier, at the newly added ‘management engagement meeting(s)’.

Participants voiced the need for activities that specifically encourage management engagement and support (called ‘buy-in’) and a clause in the written participation agreement stating that staff would be guaranteed enough time to carry out program-related tasks. For this reason, additional management meetings were added to the program. They will be specifically asked to give selected ACP Reference Persons the necessary time and mandate to carry out their tasks. Management was asked to select at least two reference persons in each ward who are guaranteed 0.10% FTE (full-time equivalent) to spend on activities of the ACP+ program. This excludes three full workdays of training (training and comeback seminar) and advance care planning conversations with residents and family.

All participants and the nurse-trainer felt the program could only be incorporated into usual care if it allowed for enough tailoring of details, in a way that is compatible with current practice. The same applies to multidisciplinary meetings which are ideally organized monthly, but there might be other forms and types of team meetings that may function as a platform to discuss advance care planning and changes in preferences of residents. In addition, it was recommended that nursing homes that are performing structural changes to their organization should not be included in the study. This was added to the exclusion criteria in the subsequent trial.

“Every nursing home has its own structure and it is important we have some freedom to for example arrange the information sessions according to the ways we know (e.g. family meetings, coffee gatherings, resident board…)” (nurse)

“If there are structural changes (e.g. renovations to the building) the implementation of such a new program is not compatible. In such times organizing advance care planning fades and primary attention of staff goes to daily nursing care.” (coordinating advisory physician)

We added ‘tailoring meetings’ as a separate intervention component. These meetings are carried out at the start of the implementation and are organized between facility manager, head nurses and staff responsible for implementing the program. The goal of these meetings is to determine which intervention aspects are to be tailored. As a result of this addition, the total number of intervention components changed from nine to ten.

Participants felt there was a lack of clear profile description of who these ACP Reference Persons ought to be. They were thought to be needing some maturity and experience to carry out the tasks related to the function, to have regular contact with residents and family and be able to handle any resistance from staff. They should have a particular interest in end-of-life care and/or advance care planning and be sufficiently trained. They should be willing to carry out this function and have the mandate from the management to do so. Some participants argued they additionally should have some medical knowledge. Others felt that others, such as social workers, could function as ACP Reference Persons too.

“And even if you have had sufficient training, this is not something you can learn in one year with a short training. You need to practice and have experience.” (physical therapist)

Within the multidisciplinary expert group, we agreed on selection criteria which can be used to select ACP Reference Persons within the first management meetings, always in dialogue with the person him/herself. ACP Reference Persons are professionals employed by the nursing homes, who have responsibilities in daily nursing home care. They are preferably a nurse or head nurse, a member of the palliative care support team within the nursing home or another healthcare professional who is experienced or has some interest in advance care planning and communication about end-of-life care, who is enthusiastic and motivated, has sufficient organizational skills and is good at stimulating colleagues. A list for selecting ACP Reference Persons was added in the ‘ACP Information guide for the nursing home management’.

All participants felt the trainer should be familiar with the specific context and working routines of the nursing home.

“Availability of a specialized trainer will motivate nursing homes to enroll in the subsequent study …” (head of resident’s care)

“But he/she should know how we work.” (nurse)

A site visit/rotation at the start of the intervention was deemed by the nurse expert to be an important addition to the training component in order for him/her to become familiar with the way of working in each nursing home. This was defined as a half-day site visit (called ‘shadowing’), preferably during a morning shift.

Ongoing support, especially a ‘comeback seminar’ halfway through the implementation period of the program, was perceived to be necessary for trained staff to reflect on and present successes, challenges and overall experiences of the program along with staff from the other nursing homes. Staff also stipulated they would need additional information regarding advance care planning with people living with dementia. Also ‘continuity’ was frequently called upon and not knowing how to communicate wishes of residents to others to make sure all involved professionals are informed. Participants said they were worried that reflection sessions would take up too much time, although they were perceived as useful by all. It was suggested such reflection could also be integrated into other types of team meetings that already exist.

“I would like some more information regarding how to estimate cognitive capacity” (reference person palliative care)

“It is important that the staff know how to communicate with other professionals to make sure these wishes that we discussed are eventually followed, also in crisis situations” (nurse)

As a result, reflection sessions were broadened to encompass one-to-one coaching, a specialized training session about dementia and a specialization session focused on communication with and information transfer to other professionals (such as emergency staff or family physicians). Reflection sessions were made optional and the trainer will be instructed to stimulate staff to integrate this in existing meetings.

Important changes to the intervention materials

Revisions to the intervention materials included: 1) simplified language and better explanations of unfamiliar words, activities and learning points; and 2) clear descriptions of the objectives of the ACP+ program and its specific activities within each manual, leaflet or guidance document. The font in the ACP leaflet for residents and family was deemed to be too small, and some text was removed to improve readability. A short 1-page version (‘The ACP Conversation Tool’), that can be used during advance care planning conversations (as communication guidance rather than a checklist), was added, as well as a list where names of residents can be noted who are eligible for advance care planning and with whom conversations have been planned. In addition, a checklist was developed to inform trainers and management/staff about which procedures and materials cannot be tailored and should be standardized. All new materials were developed and reviewed by the research team and the nurse-trainer. The summary sheet to be used in multidisciplinary meetings was found to be redundant and was excluded, and materials to support reflection sessions were changed to optional. The total number of intervention delivery materials changed from 16 to 17.

Standardized description according to TIDieR (results of step 3)

Table 2 describes each intervention component, its timing, any supporting or enabling activities, the mode of delivery (whether it is provided in a group, duo or individually), intervention providers and participants involved during each activity, and materials to support the implementation or organization. Elements eligible for tailoring are highlighted.

The entire program is carried out over eight months and consists of a preparatory training phase (months 1 to 4) and a follow-up phase (months 5 to 8). Fig 1 provides an overview of the timing of each activity and who is responsible. This timeline however is how we intend to implement the intervention in the subsequent trial and is therefore not strict and can be adapted in the future.

Discussion

We present here the development and description of the ACP+ program, which is a comprehensive multicomponent and theory-based intervention that aims to implement advance care planning in nursing homes. The final program, which is described using the TIDieR checklist, consists of ten components ranging from training, coaching and management meetings, to planning advance care planning conversations, integration of advance care planning into multidisciplinary meetings and audit, all operationalized into 22 activities and 17 accompanying materials. These components are to be implemented stepwise over the course of at least eight months, with the help of an experienced trainer. Professional stakeholders perceived the ACP+ program to be feasible and acceptable for implementation in nursing homes in Flanders, if information sessions for family physicians were adapted, if enough tailoring was allowed, an experienced trainer who knows the nursing home context was available for coaching, comeback seminars and specialization sessions were organized (about dementia and communication with other healthcare professionals), and an additional specific focus on nursing home management’s buy-in was added to the program. In addition, simplified language in all intervention materials was advised. The final program focuses on creating both the necessary knowledge and attitudes and the underlying care ‘culture’ for successful advance care planning in nursing homes.

While there are some comparisons with other existing advance care planning programs (such as the educational train-the-trainer approach [21,33], the assignment of facilitators [21,30], the use of conversation guidance [30,47], informational materials and a standardized ACP document [33]) important differences remain. This intervention targets different levels in the facility, thus ensuring that implementation is not dependent on one individual but is embedded at organizational level [23]. The program also differs from others because it explicitly follows a stepwise approach (separating ‘preparation’ from ‘implementation’), in which the intensity of the trainer’s support decreases. Volunteers and cleaning or administrative staff in other programs had no explicit or specific role, despite research showing their importance in signaling care wishes of residents [48,49], but function as ACP Antennas in ours. Additionally, while there has been much emphasis on tailoring the initiation of advance care planning to patient readiness and willingness [50,51], and as both a process measure of implementation [28,45,52,53], there has been no explicit focus on the opportunity to tailor elements of advance care planning programs to suit local circumstances as part of the intervention itself. This is an important component of the ACP+ program.

Strengths and limitations

The primary methodological strength of the reported research is the thorough process undergone to develop the intervention. Starting from a theoretical model [24,54], we operationalized and tested all components, activities and materials for their perceived feasibility and acceptability in the field. This work is in line with recent recommendations to start from theory and include testing feasibility and acceptability as part of the development phase of a complex intervention [27,55]. Step 2 (evaluating feasibility and acceptability) of our work provided the opportunity to identify implementation issues early on and to formulate strategies for these. This may minimize the need for modifications and the chance of implementation failure when testing the effectiveness of the intervention in a subsequent trial [56]. Second, by describing all details of this development work here, we comply with growing calls for more detailed and transparent reporting of complex healthcare interventions [45,55]. Our method has allowed us to provide a robust rationale for each foreseen intervention component, activity and material. As such, we believe this will enable researchers to compare our intervention with others more effectively, and practitioners to convert it more easily into clinical practice.

This study also has limitations. Firstly, we did not include the perspective of nursing home residents and their families when evaluating the feasibility and acceptability of the program. Hence, while the program is supported by a wide range of professional stakeholders, caution must be applied. Secondly, while we have put forward definitions of both feasibility and acceptability, it remains difficult to agree upon a cut-off point to decide when the intervention can be considered feasible or acceptable. Thirdly, because the intervention is adapted to the Flanders, some intervention components may not be directly transferable to other countries. Other countries may work with on-site physicians [57], or have better implemented electronic health records or different legal and financing systems [58,59]. Our advance care planning model involves intensive support of a specialized trainer at the start of the implementation; such resources might not be available everywhere. Finally, because project funding was time-limited, we did not carry out a pilot study e.g. a reduced version of the eight-month intervention program to determine whether the intervention components can all function well together [60]. However, we do aim to assess whether implementation of the program is worthwhile, whether it should be developed further or should be sent back to the drawing board [61], by using an in-depth process evaluation embedded in the subsequent trial.

Conclusion and implications

ACP+ is a theory-based intervention program that aims to implement advance care planning in routine nursing home care. It consists of multiple components, activities and materials that need to be implemented together in a stepwise manner over the course of eight months with the help of an external trainer. Its thorough development process and the standardized description in this paper aim to prevent implementation failure in real practice and increase transparency, comparison with other interventions and replication in the future. The program is currently under evaluation as part of a cluster randomized controlled trial.

Declarations

Ethics approval and consent to participate

This study was approved by the Ethical Committee of University Hospital Brussels (2017/31 B.U.N. 143201732133). Anonymity was assured by removing participant information that could lead to identification. All participants were asked verbally for their consent to the publication of anonymized data.

Supporting information

S1 Table [fp7]
ACP+ intervention materials per component (results of step 1, prior to evaluation of feasibility and acceptability).

S2 Table [cap]
Changes, additions and removals made to the original intervention components (n = 10), activities (n = 22) and materials (n = 17) of the ACP+ program (results of step 2).

S3 Table [docx]
Characteristics of participants in interviews regarding feasibility and acceptability of the program (step 2).

S1 File [pdf]
Interview guide (in Dutch).

S2 File [pdf]
Interview guide (in English).