Introduction
The aging population is becoming an increasing concern in many countries.1 Most societies now consider the provision of quality care until the end of life as a high priority, because more people are living longer and are having more complex healthcare needs than ever before. Advance care planning (ACP) is a process involving communication between individuals, families, and healthcare providers with the aim of understanding, discussing, and planning future healthcare decisions in the event that an older person becomes incapable of participating in such decisions.2-4 Undoubtedly, starting this conversation when the older person is believed to be near death is considered too late, as this individual's frailty and decline in cognitive functions may affect his/her decision-making abilities.5,6 Therefore, it is crucial that older people have open discussions with family members, friends, and healthcare professionals, as early as possible for them to be able to indicate their preferences for their own end-of-life care.
The effectiveness of ACP has been widely reported, mostly in terms of quantitative outcomes such as cost-effectiveness; number of hospital admissions, including intensive care unit stays and in-hospital deaths; occurrence of pressure ulcers and tube feeding; and patients’ quality of life.7-11 Consequently, a variety of ACP educational programs and support tools, such as printed documents, videos, text messaging programs, and online support systems, have been developed worldwide7,12 that positively affect patient outcomes by offering more and better information, matched-care preferences, and supported decision-making, ultimately decreasing patients’ anxiety.7
The importance of healthcare professionals initiating ACP with their patients and clients has been reported. The willingness of patients to talk about death is influenced by the communication skills of the people they are communicating with.13 In addition, determining the right time to initiate ACP for older patients with chronic conditions is difficult for healthcare professionals, because this involves careful consideration of and caution regarding anticipating how long the patient will live.14 Although some healthcare professionals remain hesitant to initiate ACP conversations and believe that ACP may destroy the hopes of patients,15,16 some patients and their families prefer that healthcare professionals be the ones to open the conversation.15,17 Timely facilitation of ACP by healthcare professionals may lead to enhanced hope among patients and families.15 It has also been reported that families who underwent ACP with trained facilitators before losing their loved ones had reduced stress, anxiety, and depression compared with a non-ACP group.2 Healthcare professionals in the community accompany patients with chronic illness throughout their disease trajectory (from diagnosis through treatment and management of the disease, to end of life). Therefore, healthcare professionals play essential roles in ACP.
On the other hand, despite reports on the importance and effectiveness of ACP, negative perceptions regarding ACP still remain. ACP has undergone development in cultures that value autonomy and personal choice, some cultures with different values still do not recognize the need for ACP.14 One of the barriers to initiating ACP is that older people have negative perceptions of talking about death.18,19 Qualitative studies have reported that many older people are still resistant to this conversation or prefer to have one when their limited prognosis becomes clear.3,15,20 Therefore, careful consideration of timing, and strong relationships between healthcare professionals and the patient and his/her family are vital when initiating ACP.
Qualitative reviews on ACP experiences have mostly focused on the perspectives of institutionalized people and their family and healthcare professionals.21,22 Ke et al.23 carried out a meta-synthesis on the experiences and perspectives of older adults regarding ACP; however, older adults from a variety of settings, including hospitals and the community, were included. These authors highlighted that older people's experiences and perspectives of ACP were varied and often conflicted owing to their varying cultural, religious, and ethnic backgrounds, as well as family relationships, which influenced their preferences.23 Therefore, giving importance to older people's views on life and death is vital when conducting ACP, regardless of the care setting.
Compared with older individuals residing in institutional settings, community-dwelling older people have fewer interactions with healthcare professionals, leading to fewer opportunities to discuss their future preferences.24-27 Regarding primary studies on the ACP experiences of community-dwelling older people, there have been several qualitative studies reporting the interview findings on older people's views, attitudes, and actual experience of ACP in the community setting. These studies emphasize the lack of ACP knowledge among older people and the tendency among this population to postpone or not find a need for ACP because of their self-recognized independence and because they are not at the stage of planning or documenting their end of life.28-30 Furthermore, issues remain as to who should initiate the discussion, when to initiate a discussion, and with whom to start discussing ACP. Some older people regard end-of-life discussions as very private and are not willing to talk about this topic with someone outside of their close family, including healthcare professionals;28 other older people live alone and do not have anyone to discuss ACP with.29 Timely initiation of ACP and sustainable discussion among older people, families, and community healthcare professionals is expected, which may lead to improved palliative and end-of-life care in the community.
The objective of this qualitative systematic review is to evaluate and synthesize the recent literature on ACP experiences of community-dwelling older people in interaction with community healthcare professionals. As the location of care in most industrial countries shifts from institutions to the community, providing ACP in community settings is likely to occur more often. Therefore, uncovering the evidence on how community-dwelling older people perceive their experience of ACP, the process of ACP and their attitudes toward it, and which ACP tools or approaches are more acceptable to them may facilitate better end-of-life discussions between healthcare professionals and older people, as well as the provision of person-centered ACP in communities. Furthermore, the findings of this review can contribute to the development of policies on end-of-life-care strategies for older people and on the roles and function of community healthcare professionals in promoting ACP, as well as to inform better public education strategy in the community.
A preliminary search of PROSPERO, MEDLINE, the Cochrane Database of Systematic Reviews, and the JBI Database of Systematic Reviews and Implementation Reports was conducted, and no current or ongoing systematic reviews on the topic were identified.
Review question
What are the experiences of advance care planning for community-dwelling older people in interaction with community healthcare professionals?
Inclusion criteria
Participants
The review will consider studies that include individuals older than 60 years who are living in the community. The frequency and type of contacts with community healthcare professionals will not be specified. Community-dwelling older people are those who are living in their homes in the community, not in institutional or residential care settings with 24-hour care staffing such as hospitals, hospices, and long-term care facilities. The review will include community-dwelling older people with or without existing morbidity. Community healthcare professionals (e.g. physicians, nurses, physiotherapists, and occupational therapists) are those who work outside of institutional settings such as hospitals and long-term care facilities and work for those who reside in their own homes.
Phenomena of interest
This review will include studies that investigated the ACP experiences of community-dwelling older people in interaction with community healthcare professionals.
Context
This review will include studies on community-dwelling older people with access to healthcare professionals such as those who visit general practice and health centers and receive healthcare professionals’ visits and/or care at home.
Types of studies
This review will include studies using qualitative approaches, including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research, feminist research, and mixed-methods studies. Studies published in English and Japanese will be included.
Methods
The proposed systematic review will be conducted in accordance with the JBI methodology for systematic reviews of qualitative evidence.31
Search strategy
The search strategy will aim to locate both published and unpublished studies. An initial limited search of MEDLINE and CINAHL was undertaken to identify articles on the topic. The words contained in the titles and abstracts of relevant articles, and the index terms used to describe the articles were used to develop a full search strategy for MEDLINE (see Appendix I). The search strategy, including all identified keywords and index terms, will be adapted for each included information source. The reference list of all studies selected for critical appraisal will be screened for additional studies.
Information sources
MEDLINE, CINAHL, Embase, PsycINFO, JSTORE, Scopus, Japan Medical Abstract Society, and CiNii will be searched to identify published papers on the topic. Google Scholar, ProQuest Dissertations & Theses Global, and MedNar will be searched for unpublished studies and gray literature. Japanese databases will be included to look at the broader international literature. A date limit of studies conducted from 1999 to the present will be set, as the concept of ACP has been increasingly recognized since the 1990s.3,9,32
Study selection
Following the search, all identified citations will be collated and uploaded into EndNote X9 (Clarivate Analytics, PA, USA) and duplicates will be removed. Then, titles and abstracts will be screened by two independent reviewers for assessment against the inclusion criteria for the review. Potentially relevant studies will be retrieved in full and their citation details will be imported into the JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI; JBI, Adelaide, Australia). Two independent reviewers will again assess in detail the full text of the selected works to determine compliance with the inclusion criteria. For studies that do not meet the inclusion criteria, the reasons for exclusion of full text will be recorded and reported in the systematic review. Any disagreements that arise between the reviewers at each stage of the study selection process will be resolved through discussion, or with a third reviewer. The results of the search will be reported in full in the final systematic review and presented in a Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) flow diagram.33
Assessment of methodological quality
Using the standard JBI critical appraisal checklist for qualitative research,32 two independent reviewers will critically evaluate the eligible studies for methodological quality. In the case of missing or additional data required for clarification, authors of papers will be contacted to request these. Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer. The results of the critical appraisal will be reported in narrative form and in a table. Regardless of the results of methodological quality, all studies will undergo data extraction and synthesis. The results of this appraisal can then be used to synthesize and interpret the results of the study.
Data extraction
Using the standardized JBI data extraction tool,31 two independent reviewers will extract data from the studies included in the review. Data on specific details about the populations, context, culture, geographical location, study methods, and the phenomena of interest relevant to the review objective will be extracted. Findings and their illustrations will be extracted and assigned a level of credibility. Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer. In the case of missing or additional data, where required, authors of papers will be contacted to request these.
Data synthesis
Qualitative research findings will, where possible, be pooled using JBI SUMARI with the meta-aggregation approach.34 This will involve the aggregation or synthesis of findings to generate a set of statements representing that aggregation, through assembling the findings and categorizing these findings on the basis of similarity in meaning. These categories will then be subjected to a synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form.
Assessing confidence in the findings
The final synthesized findings will be graded according to the ConQual approach for establishing confidence in the output of qualitative research synthesis and presented in a Summary of Findings.35 The Summary of Findings includes the major elements of the review and details how the ConQual score is developed. Included in the Summary of Findings will be the title, population, phenomena of interest, and context for the specific review. Each synthesized finding from the review will then be presented along with the type of research informing it, score for dependability and credibility, and the overall ConQual score.
Acknowledgments
Dr Rie Konno, Professor of the Hyogo University of Health Sciences, and Dr Patraporn Tugpunkom, Associate Professor and Director of the Thailand Centre for Evidence Based Health Care: a JBI Affiliated Group, Chiang Mai University Faculty of Nursing, for their assistance and guidance. They also acknowledge the support of the Chiba University Leading Research Promotion Program.
Appendix I: Search strategy
Search of MEDLINE (OVID) conducted on September 6, 2019
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