Article Text

Advance care planning in nursing homes: new conversation and documentation tools
  1. Annelien Wendrich-van Dael1,2,
  2. Joni Gilissen1,2,3,
  3. Liesbeth Van Humbeeck4,
  4. Luc Deliens1,5,
  5. Robert Vander Stichele6,
  6. Chris Gastmans7,
  7. Lara Pivodic1,2 and
  8. Lieve Van den Block1,2
  1. 1 End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium
  2. 2 Family Medicine and Chronic Care, Vrije Universiteit Brussel, Brussels, Belgium
  3. 3 Neurology, UCSF, San Francisco, California, USA
  4. 4 Department of Geriatric Medicine, University Hospital Ghent, Gent, Oost-Vlaanderen, Belgium
  5. 5 Medical Oncology, Ghent University Hospital, Ghent, Belgium
  6. 6 Department of Pharmacology, University of Ghent, Ghent, Belgium
  7. 7 Interfacultair Centrum voor Biomedische Ethiek en Recht, KULeuven, Leuven, Belgium
  1. Correspondence to Dr Annelien Wendrich-van Dael, End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium; Annelien.van.Dael{at}vub.be

Abstract

Although advance care planning (ACP) is highly relevant for nursing home residents, its uptake in nursing homes is low. To meet the need for context-specific ACP tools to support nursing home staff in conducting ACP conversations, we developed the ACP+intervention. At its core, we designed three ACP tools to aid care staff in discussing and documenting nursing home resident’s wishes and preferences for future treatment and care: (1) an extensive ACP conversation guide, (2) a one-page conversation tool and (3) an ACP document to record outcomes of conversations. These nursing home-specific ACP tools aim to avoid a purely document-driven or ‘tick-box’ approach to the ACP process and to involve residents, including those living with dementia according to their capacity, their families and healthcare professionals.

  • communication
  • education and training
  • nursing Home care
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Key messages

What was already known?

  • Uptake of advance care planning (ACP) is low in nursing homes; important barriers are insufficient knowledge and skills of care staff.

What are the new findings?

  • Newly developed ACP tools.

What is their significance?

  • Clinical: involve residents, their families and professionals in the ACP process while avoiding a ‘tick-box’ approach.

  • Research: fill the gap of detailed descriptions of ACP tools for nursing homes.

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 It usually involves several conversations with a person, family and healthcare professionals and can include appointing a legal representative.2 Moreover, specific preferences can be formalised by completing legal documents such as advance directives (ADs).

Nursing home residents are among the most frail populations3–7 and in the light of anticipated deterioration, discussing future care wishes and preferences is highly relevant. Nevertheless, the uptake of ACP in nursing homes seems low,8 9 with insufficient knowledge and skills of the care staff being one of the main reported barriers.10 11 Especially for nursing homes, where different care staff (ie, nurses, care assistants, allied health staff) can be involved in ACP,12 a clear need for context-specific ACP tools guiding ACP conversations has been reported.

To support the care staff in nursing homes to engage in ACP, we developed specific tools as part of a multicomponent ACP intervention, called the ACP+intervention.13 The goal of this intervention was to support the implementation of ACP as part of the routine nursing home practice in Flanders, the Dutch-speaking part of Belgium, using an 8-month stepwise educational intervention.14 We developed three ACP+tools to aid the care staff in eliciting, discussing and documenting the residents’ wishes and preferences for future treatment and care: (1) an ACP conversation guide, (2) a conversation tool and (3) an ACP document.

Given that recent reviews have found great variance in the content of different ACP tools and highlighted that detailed descriptions of intervention tools are often lacking,15 16 this report outlines the development and structure of the nursing-home specific ACP+tools. The ACP+tools aim to avoid a purely document-driven or ‘tick-box’ approach and, to involve residents, including those with dementia according to their capacity, their families and healthcare professionals in the ACP process.

Development of the ACP+tools

In the first stage, we conducted a targeted, systematic literature review of international research17 18 to explore existing ACP tools (eg, training manuals, information leaflets, conversation guide, documents) used in older populations and nursing homes.13 The following tools were examined further for common themes: ACP tools from a European ACP trial,19 the ACP document of University Hospital Leuven,20 the ‘Looking and thinking ahead document’ of a European palliative care trial (PACE EUFP7,21 the Advance Care Plan of Respecting Patient Choices,22 the ACP guideline no. 12 of the Royal College of Physicians of London, UK (2009)23 and existing practice guidelines for ACP in Belgium (published by pallialine.be, the organisation producing palliative care evidence-based guidelines under the Flemish Federation of Palliative Care).24 25

Together with a multidisciplinary expert group (consisting of an ethicist, three psychologists, a general practitioner, a sociologist and a social worker: CG, AW-vD, LP, LVdB, RVS, LD, JG, respectively), core themes for ACP conversations in nursing homes were selected, resulting in—among others—the ACP+conversation guide and the ACP+document. The preliminary tools were further reviewed by a legal expert and a palliative care nurse-trainer (LVH). All tools were tested in a feasibility study, involving two individual and three group-interviews with 17 management and staff members from five nursing homes.13 Participants expressed the need for a user-friendly and practical summary of the ACP conversation guide to use during ACP conversations.13 We therefore developed an additional one-page ACP+conversation tool with prompts that could be used throughout the ACP conversation.

Structure and content of the ACP+tools

Tool 1: the ACP+conversation guide

The ACP+conversation guide is a booklet including four chapters: (1) general information about ACP; (2) ACP conversations; (3) documentation of ACP outcomes, including how to draft an AD within the legal context of Belgium and (4) ACP with people with dementia and their families. An English translation of this guide can be found in the online supplemental appendix 1e.

Supplemental material

In the first chapter, general information about ACP is given: with whom, when, how often and which preparatory tasks are needed (figure 1). For example, an estimation of the decision-making capacity of the resident is advised. This chapter also highlights the importance of recognising that ACP is a process rather than a one-time event, that multiple conversations with the resident/family might be necessary and that preferences can be revisited regularly. It stresses that spontaneous conversations can occur but that planning conversations with all residents is important too.

Figure 1

ACP process as outlined in the ACP+conversation guide. ACP, advance care planning.

The second chapter includes a template and communication tips to facilitate ACP conversations, comprising nine different sections, starting from broadly discussing what a good life entails for the resident and moving to more specific subjects about their preferences for future care, end-of-life care, death and dying. The order of the sections can be tailored to the residents’/families’ preferences and readiness to engage in ACP. Not all sections need to be addressed in one conversation. Moreover, the care staff is encouraged to actively listen to residents (eg, leave ample time for the residents/families to express themselves), and avoid having overly structured ‘Q&A’ conversations.

The third chapter provides information about how to document the outcomes of an ACP conversation using the ACP+document (described below). Additionally, this chapter explains how to use the official (legal) documents to appoint a legal representative and to create ADs,26 if the resident wishes to do so.

In the fourth chapter, the care staff is offered advice on conducting ACP conversations with residents with dementia. In summary, we recommended to (1) prepare well and provide relevant information on dementia to the resident/family; (2) customise the conversation to the level of the resident with dementia; (3) draw the attention of the resident with dementia regularly by saying his/her name or with a gentle touch; (4) use supporting materials such as pictures to back up verbal communication; (5) involve all important parties (eg, family) as early and as often as possible and (6) observe the interaction between the resident with dementia and his/her family, as well as the interaction between the different family members.

Tool 2: the ACP+conversation tool

The ACP+conversation tool (table 1) is an easy-to-use one-page document that is structured according to the nine sections of the second chapter of the ACP+conversation guide. It includes prompts which the staff can use to conduct an ACP conversation, to summarise it and to plan a follow-up ACP conversation (if applicable). Last, it summarises how and where the outcomes of the ACP conversation can be documented. This conversation tool helps the staff to guide conversations in a natural way and prevents forcing conversations into ‘tick box exercises’.

Table 1

Approach of ACP conversation as outlined in the ACP+conversation guide

Tool 3: the ACP+document and summary

The ACP+document (online supplemental appendix 2e) is meant to be filled in after an ACP conversation. It is structured according to the nine sections of the ACP+conversation guide and conversation tool. For each section, the care staff can write down what was discussed and which decisions, if any, were taken. Space is reserved to note who was present during the conversation, and to write down the observations of the care staff on the decision-making capacity of the resident.

Attached to the ACP+document is the ACP+summary, in which the care staff can highlight the most important decisions, that is, who is appointed as the legal representative and which ADs were composed by the resident. It is advised to keep the official (legal) ADs forms together with this summary in case of an emergency or a transfer to another care setting.

Discussion

There is a worldwide call to create opportunities for ACP conversations among nursing home residents, discussing ACP over several sessions and revising decisions made.27 In this paper, we discuss three tools that can be used to aid the nursing home care staff in discussing and documenting the resident’s wishes and preferences for future treatment and care. These tools are part of the ACP+intervention which aimed to support nursing homes with the implementation of ACP as part of the routine nursing home practice in Flanders, Belgium.28 The ACP+intervention is a training programme, set up to be implemented stepwise over a period of 8 months. It follows a train-the-trainer model, with the trainer’s support being intensive in the beginning, but decreasing throughout the process as nursing home staff become more autonomous in organising ACP (conversations) and consolidating the ACP+intervention.13 In the training sessions, care staff is trained in initiating and conduction ACP conversations, as well as in general communication skills, in addition to using the ACP+conversation tools. Training sessions that are specifically focused on performing ACP conversations entailed at least two sessions of 4 hours each and included among others, example cases and role play techniques. Moreover, on-the-job learning opportunities and management buy-in to support staff and create a safe learning climate are essential aspects of the intervention.13 17 29 Other key elements are described elsewhere.13

This paper serves as an important first step to provide practice with detailed tools to conduct both planned and spontaneous ACP conversations with the vulnerable nursing home population and their families. Our tools are consistent with best practices for discussing care goals, as was outlined by Bernacki et al 30 identifying a structured format to guide discussions and record information to hold promise in optimising ACP conversations.30 It should be noted that the ACP process is an ongoing process of communication rather than an on-off event31 and can therefore be time consuming,32 and that general practitioners (GPs) are not always available or willing to be engaged in this process.33 34 However, during the development phase of the ACP+intervention and the ACP+tools, the importance of considering ACP as a process and involving the GP, was stressed by healthcare professionals and experts.13 17 35

The absence of detailed intervention descriptions is a generally acknowledged phenomenon.15 When developing the ACP+tools, we therefore might have missed details of existing interventions or conversation guides, or tools described in the grey literature that might not have been covered by our search, but play an important role in daily nursing home care. However, two systematic literature reviews on ACP tools have been included in our search.17 18 Another limitation is that no nursing home residents or family were involved in the development of the ACP+tools; hence, their perspective is underexposed. However, in the developmental work of the ACP+intervention, two representatives of the council for older people in Flanders, Belgium were involved in the stakeholder panels. This process has been described elsewhere.35 Future work should further evaluate the use of the tools from a resident and family perspective.

While the local legal context influences which advance end-of-life decisions people can make (eg, euthanasia is a legal option in Belgium, but not in several other countries), the contextual barriers experienced by the nursing home staff to conduct ACP conversations are very similar across countries36 (eg, nursing home staff’s lack of confidence to engage in ACP,37 making the ACP+tools widely applicable). However, integrating the residents’ views and preferences in clinical practice, and ultimately aligning the residents’ preferences and care, requires active and systematic integration of ACP conversations into the clinical care structures and processes, next to time and labour.

Ethics statements

Acknowledgments

The research team would like to thank the nursing homes in which we tested all ACP+related tools and procedures and Professor Herman Nys (KU Leuven) for the advice concerning Belgian medical law.

References

Supplementary materials

  • Supplementary Data

    This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

Footnotes

  • LP and LVdB are joint senior authors.

  • Twitter @JoniGilissen

  • Contributors Study conception: LVdB, LP, JG, AW-vD, LD, RVS, CG. Development of the tools: all authors. Drafting of manuscript: AW-vD, JG, LP, LVdB. Revising manuscript critically for important intellectual content: all authors. Final approval of the version to be published: all authors. All authors agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. LP and LVdB share last authorship.

  • Funding The study was funded by the Research Foundation-Flanders (FWO) and the Interdisciplinary Network for Dementia Using Current Technology (INDUCT, EU Horizon 2020). LP was a Postdoctoral Fellow of the Research Foundation-Flanders (FWO, 2017–2020). JG is a postdoctoral fellow of the Belgian-American Educational Foundation (BAEF).

  • Disclaimer The funders have no role in the design of the study and collection, analysis and interpretation of data, in writing the manuscript or in the decision to submit the manuscript for publication.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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