SYSTEMATIC REVIEW PROTOCOL

Advance care planning experiences of patients with

heart failure and their families: a qualitative systematic
review protocol
Asahiko Higashitsuji  Motohiro Sano  Tomoko Majima
Graduate School of Nursing, Chiba University, Chiba, Japan

ABSTRACT

Objective: This review aims to synthesize advance care planning experiences of patients with heart failure at
stage C or D, and the experiences of their families.
Introduction: The high incidence rates worldwide and the health burdens associated with heart failure indicate a
need to implement end-of-life care for people with cardiovascular disease. Advance care planning is a core process
in effective end-of-life cardiovascular care. Since the trajectory of heart failure is unique, it is necessary to establish
patient-specific interventions focusing on their experiences, and develop effective advance care planning
interventions. However, no previously published systematic reviews have integrated knowledge of the patient’s
or the family’s experience. Therefore, more comprehensive analyses of the experiences of patients with heart failure
and their families are required to conduct better interventions.
Inclusion criteria: This review will consider qualitative studies on the experiences of adult patients with stage
C or D heart failure who participated in advance care planning, and the experiences of their families. Studies
conducted in all settings that accommodate patients with heart failure will be considered.
Methods: PubMed, CINAHL, Web of Science, Science Direct, Cochrane Central Register of Controlled Trials,
PsycINFO, ProQuest Dissertations and Theses Global, Google Scholar, and gray literature will be searched for
articles that meet the inclusion criteria. Studies published in English from the inception of the database to the
present will be considered. Eligible studies will be critically appraised using standardized JBI tools for qualitative
synthesis. The findings will be pooled using a meta-aggregation approach. The final synthesized findings will
be assessed according to the ConQual approach to establish confidence in qualitative research synthesis.
Systematic review registration number: PROSPERO CRD42021229096
Keywords: advance care planning; heart failure; palliative care; shared decision-making
JBI Evid Synth 2023; 21(2):441–448.

Introduction reducing medical costs associated with cardiovas-

cular disease is also an important goal.4
P resently, at least 26 million patients have ex-
perienced heart failure (HF) worldwide, and this
number is increasing.1 The 1-year mortality rate of
Stages of HF (A-D) were developed by the Amer-
ican College of Cardiology Foundation/American
patients with HF is as high as 45%,1,2 which means Heart Association. Functional classification (I-IV)
the need for end-of-life care for patients with HF is was developed by the New York Heart Association
increasing.3 In the United States, the most significant (NYHA). Four stages are included in the classifica-
tions, each gauging the severity of HF symptoms.
proportion of annual medical expenses (USD$316.6
Stage A describes an asymptomatic risk condition.
billion) is invested in cardiovascular disease; thus,
Stage B is a state in which 1 or more of the exam-
ination data points infers HF without symptoms.
Correspondence: Asahiko Higashitsuji, [email protected] Stage C represents a symptomatic state. Lastly,
The authors declare no conflict of interest. stage D refers to marked symptoms that interfere
DOI: 10.11124/JBIES-22-00107 with activities of daily life and require recurrent

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hospitalizations, despite attempts to optimize treat- stages of their condition.6 In addition, advances in
ment.3 NYHA II–IV classifications describe limita- therapeutic agents and treatments specific to HF,
tions in physical activity based on HF symptoms. such as implantable devices, promote patient opti-
Thus, stage C includes patients of all functional mism and delay their participation in end-of-life
classifications who have been symptomatic at least discussions.6 A barrier to the implementation of
once.3 Stage D includes patients who cannot com- ACP in patients with HF is the lack of awareness
plete any physical activity without exhibiting HF of hospice and palliative care by patients and their
symptoms (NYHA IV).3 Given that the experiences families.18
of patients with HF are characterized by recurring Despite the recognition of barriers to ACP
and severe physical symptoms,5,6 patients at stage C specific to patients with HF, the establishment of
or D are most appropriate for examining unique ACP interventions remains inadequate. In a random-
patient experiences. ized controlled clinical trial on palliative care for
Advance care planning (ACP) is a “process that patients with HF,19 nurse practitioners conducted
supports adults of any age or stage of health in under- ACP interventions, such as screening physical and
standing and sharing their values, life goals, and psychosocial symptoms, assessing spiritual concerns,
preferences regarding future medical care.”7(p.14) addressing end-of-life preparation, and communicat-
It is defined as the engagement for “future medical ing with patients about their goals of care.12 As a
decisions,”7(p.8) such as assessing readiness for, result, patients’ quality of life, depressive symptoms,
knowledge of, and communication about advance and anxiety improved. The applied intervention
treatment (eg, left ventricular assist device and trans- method was based on treatments for patients with
plant or medical care after losing decision-making cancer, and identified the need to develop a strategy
abilities). The process of ACP involves documenta- suitable for patients with HF. Moreover, patients
tion of advance treatment or directives, deciding on a with HF use palliative care significantly less than
surrogate decision-maker, and decision-making from patients with cancer.20,21 In addition, a systematic
the surrogate.7,8 ACP consists of a medical team of review of quantitative studies on ACP in patients
doctors, nurses, and medical social workers working with HF indicated that ACP intervention methods
with patients and their families to identify, under- are highly heterogeneous.22 Although the experience
stand, discuss, document, and review patient goals of patients with HF is reported to be unique,6,18 ACP
and preferences for their future care.9,10 The positive interventions specific to patients with HF remain
effects of ACP include improving quality of life and unclear.
patient satisfaction while reducing readmissions Health care professionals who understand pa-
among patients.10,11 ACP is associated with reduced tients’ and families’ intentions know the optimal
overall medical costs, despite the staffing costs re- time to apply ACP and are aware of the critical
quired for its success,11 and has historically formed aspects of its implementation.23 The recognition of
part of palliative, hospice, and end-of-life care.12-14 ACP may cause patients to lose hope, which is an
Furthermore, ACP has various intervention methods, additional barrier for health care professionals.23 It
such as one-on-one meetings, multidisciplinary ap- is essential for health care professionals to take ad-
proaches, telephone calls, and computer applica- vantage of facilitators and overcome barriers by
tions,10,15 and is based on shared decision-making.7 understanding patients’ unique experiences and
ACP is implemented in medical and non-medical set- identifying their needs. The optimal timing of ACP
tings (where non-medical settings often involve senior is determined by patients’ feelings towards it and the
centers, assisted living facilities, and the patient’s methods and interactions of people participating
home)16; however, only 2.8% of patients eligible for in it.24 Clarifying this experience allows health care
ACP are aware of it, and only 3.9% of these patients professionals to select the optimal time for ACP and
consult proxy decision-makers.17 develop specific strategies.
Patients with HF do not tend to consider their Although there are systematic reviews of quantita-
own mortality, as the characteristics of the disease tive studies on the outcomes of ACP in HF,10,22 they
follow an uncertain course. A previous study focused on the perceptions of health care profes-
showed that patients focus on their persistent physi- sionals rather than the patient experience.10,22,23
cal symptoms and do not consider the end-of-life A review published in 2011, included patient

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experiences; however, they were not separated from relatives and non-relatives, such as friends. Patients
health care professionals’ experiences and the review with HF have a close relationship with non-relatives
did not assess the reliability of the findings.25 Con- as families. Therefore, family will be defined as a
sidering these limitations, this review aims to address person or persons considered as a family by the
the experiences of patients with HF and their families, patient with HF or the term “family” identified in
since this information has not yet been synthesized. A the selected studies.
preliminary search of PubMed, CINAHL, Web of This review will exclude studies that focus on the
Science, PsycINFO, Science Direct, Cochrane Data- perspectives of health care professionals. It will also
base of Systematic Reviews, JBI Evidence Synthesis, exclude studies that focus on patients with cancer,
ProQuest Dissertations and Theses Global, and Goo- because they are more receptive to palliative care
gle Scholar databases was conducted in July 2022, interventions than patients with HF.20,21
and no existing or in-progress systematic reviews on
the topic were identified. In addition, a preliminary Phenomena of interest
search yielded 1969 potentially relevant studies on This review will consider studies that have explored
the topic (Appendix I). the experiences of adult patients with HF and their
The results of this review will reveal the families regarding ACP. Engagement with “future
experiences of patients with HF with ACP, and the care plans,” such as assessing readiness or knowledge
experiences of their families, and should serve as of ACP, communication about advance treatment,
the foundation for the effective practice of ACP documentation of advance treatment and directives,
interventions by health care professionals. This re- selecting a surrogate decision-maker, and decision-
view aims to synthesize the experiences of patients making from the surrogate decision-maker will be
with HF and their families with ACP conducted in considered ACP.7,8 Current medical decision-making
medical and non-medical settings. will be excluded because future medical decisions
are emphasized in ACP.7 The experience of patients
Review question with HF and their families will include their respec-
What are the experiences of adult patients with stage tive emotions and perceptions. There will be no
C or D heart failure and their families regarding ACP restrictions on when or where health professionals
conducted in medical and non-medical settings? should implement ACP or methodologies used to
deliver ACP, because ACP can be carried out by
various people and methods. It is, therefore, necessary
Inclusion criteria
to consider the differences in each methodology.10,15
Participants
Literature reporting past and present shared experi-
This review will consider studies of the experiences
ences will be included.
of adult patients with HF aged ≥ 18 years who
underwent ACP, as well as their families’ experi-
ences. Children will be excluded because decision- Context
making regarding their treatment generally requires This review will consider studies conducted in all
parental consent, which is different to adult deci- settings or institutions that accommodate the needs
sion-making.26 There will be no upper age limit of patients with HF. This includes, but is not limited
because ACP can be better targeted as patients to, cardiology, primary care, clinics, palliative care,
age,9 and ACP also has positive effects on people medical settings, non-medical settings, and country
aged over 80 years.27 Sex will not be a limiting settings.
factor, because ACP is not sex-specific. This review
will focus on stage C or D HF to cover the chron- Types of studies
ological period from the onset of symptomatic HF to This review will consider studies that focus on qual-
the end of life.3 The eligibility of HF stages will be itative data, including, but not limited to, designs
confirmed based on the stages shown in the litera- such as phenomenology, grounded theory, ethnogra-
ture. If the literature uses NYHA, participants who phy, action research, feminist research, and mixed
have been classified II–IV at least once will be methods. Only qualitative data will be extracted
eligible. As a broad definition, “family” includes from mixed methods studies.

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Methods against the inclusion criteria for this review. Poten-

The proposed systematic review will be conducted in tially relevant studies will be retrieved and their
accordance with JBI methodology for systematic citation details imported into the JBI System for
reviews of qualitative evidence.28 This review is the Unified Management, Assessment and Review
registered in PROSPERO (CRD42021229096). of Information (JBI SUMARI; JBI, Adelaide, Austra-
lia).29 Two independent reviewers will assess the full
text of the collected citations and report any reasons
Search strategy
for exclusion from the final review. Any disagree-
The search strategy will aim to collect both published
ments between the reviewers will be resolved
and unpublished articles. An initial limited search of
through discussion or by a third author. The study
PubMed was performed to identify articles on the
selection process will be presented using the Pre-
topic. The text words contained in the titles and
ferred Reporting Items for Systematic Reviews and
abstracts of relevant articles, and the index terms used
Meta-Analyses (PRISMA) flow diagram.30
to describe the articles, will be used to develop a full
search strategy for MEDLINE via PubMed (Appen-
dix I). The search strategy will include all identified
Assessment of methodological quality
Two independent reviewers will critically appraise
keywords and index terms, and will be adapted to
eligible studies using the standard JBI critical apprai-
each included information source. Key search words
sal checklist for qualitative research.28 The first re-
such as “palliative care,” “terminal care,” and “hos-
viewer will contact the corresponding authors to
pice care” will be used because ACP facilitates the
request missing or additional data for clarification,
performance of these care processes. These terms,
where required. Any disagreements between the re-
including ACP, will constitute the search terms for
viewers will be resolved through discussion or by a
the literature search. Key search terms, such as
third reviewer. All studies, regardless of method-
“shared decision-making,” “advance directives,”
ological quality, will undergo data extraction and
“living will,” and “conversation,” will be used be-
synthesis (where possible), because stricter recruit-
cause they are based on ACP. This review will also
ment criteria will significantly limit the number of
use key search terms, such as “end-of-life” and
studies eligible for inclusion in this review. The meth-
“death,” because these words are entry terms in
odological quality of the included studies will be
MeSH and are related to ACP. Finally, the reference
considered in the assessment of findings and discus-
lists of all the selected studies will be screened for
sion of the review. The results of the critical appraisal
additional studies.
will be reported in narrative format and in a table.
Databases, including MEDLINE (PubMed), Web
of Science, Science Direct (Elsevier), Cochrane Cen-
tral Register of Controlled Trials, CINAHL
Data extraction
Two independent reviewers will extract the data
(EBSCO), and PsycINFO (EBSCO), will be searched.
from the included studies using a standardized JBI
Studies published in English from the inception of
data extraction tool.28 The data extracted will in-
the database to the present day will be considered for
clude specific details about the populations, context,
inclusion. Sources of unpublished studies and gray
culture, participants (eg, sample size, HF stages,
literature will be screened for ProQuest Dissertations hospitalization), geographical location, study meth-
and Theses Global (ProQuest) and Google Scholar ods, and phenomena of interest relevant to the ob-
databases. This review will exclude studies published jectives of the reviews. In addition, a supplementary
in languages other than English because translation data extraction tool will be used to categorize ACP
will not accurately reflect the original text, and interventions (Appendix II). This will include ACP
biases will occur in synthesizing the findings. system (ie, documentation, training, facilitators, par-
ticipants, and palliative care) and ACP outcomes,
Study selection based on the Delphi panel consensus.8 Therefore,
Following the search, all identified citations will be the primary codes and illustrations will be selected
uploaded to EndNote v.20 (Clarivate Analytics, PA, from the results section of the included studies.
USA), and duplicate citations will be removed. Two Findings derived from illustrations will be extracted
independent reviewers will screen titles and abstracts and assigned a level of credibility (ie, unequivocal,

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credible, or unsupported).28 Any disagreements be- 2. Ponikowski P, Anker SD, Alhabib KF, Cowie MR, Force TL, Hu
tween the reviewers will be resolved through discus- S, et al. Heart failure: preventing disease and death world-
sion or by a third reviewer. The first reviewer will wide. ESC Heart Fail 2014;1(1):4–25.
contact the corresponding authors to request missing 3. Yancy CW, Jessup M, Bozkurt B, Butler J, Casey DE, Drazner
or additional data, where required. MH, et al. 2013 ACCF/AHA Guideline for the Management
of Heart Failure. Circulation 2013;128(16):e240–327.
4. Roger VL, Go AS, Lloyd-Jones DM, Adams RJ, Berry JD, Brown
Data synthesis TM, et al. Heart disease and stroke statistics. Circulation 2016;
The qualitative research findings will be pooled using 123(4):e18–209.
JBI SUMARI with a meta-aggregation approach, 5. Asahiko H, Madoka M, Tomoko M. Suffering and atti-
where applicable.28 This will involve synthesizing, tudes toward death of patients with heart failure in
assembling, and categorizing the findings based on Japan: a grounded theory approach. J Hosp Palliat Nurs
similarity of meaning to generate a set of statements 2021;23(5).
representing the aggregation. The findings will be 6. Hadler RA, Goldstein NE, Bekelman DB, Riegel B, Allen LA,
Arnold RM, et al. “Why would I choose death?”: a qualitative
defined as primary codes because meta-aggregation
study of patient understanding of the role and limitations
does not seek to reinterpret the findings of the in-
of cardiac devices. J Cardiovasc Nurs 2019;34(3):275–82.
cluded studies.28 The synthesis results will be shown 7. Sudore RL, Lum HD, You JJ, Hanson LC, Meier DE, Pantilat
as synthesized findings, categories, and findings of the SZ, et al. Defining advance care planning for adults: a
included studies. The first reviewer will classify the consensus definition from a multidisciplinary Delphi panel.
findings of the data extraction tool based on concep- J Pain Symptom Manage 2017;53(5):821–32. e1.
tual similarity to determine categories, which will be 8. Sudore RL, Heyland DK, Lum HD, Rietjens JAC, Korfage IJ,
classified based on conceptual similarity to derive the Ritchie CS, et al. Outcomes that define successful advance
synthesized findings. All reviewers will review the care planning: a Delphi panel consensus. J Pain Symptom
synthesis process and any disagreements will be re- Manage 2018;55(2):245–55.
solved through discussion. Only unequivocal and 9. Rietjens JAC, Sudore RL, Connolly M, van Delden JJ, Drick-
amer MA, Droger M, et al. Definition and recommendations
credible findings will be included in the synthesis.
for advance care planning: an international consensus
supported by the European Association for Palliative Care.
Assessing confidence in the findings Lancet Oncol 2017;18(9):e543–51.
The final synthesized findings will be graded accord- 10. Schichtel M, Wee B, Perera R, Onakpoya I. The effect of
ing to the ConQual approach to establish confidence advance care planning on heart failure: a systematic review
in the output of qualitative research synthesis.31 A and meta-analysis. J Gen Intern Med 2020;35(3):874–84.
Summary of Findings will include the major ele- 11. Kernick LA, Hogg KJ, Millerick Y, Murtagh FEM, Djahit A,
ments of the review and details on how the ConQual Johnson M. Does advance care planning in addition to
usual care reduce hospitalisation for patients with ad-
score was developed. Included in the Summary of
vanced heart failure: a systematic review and narrative
Findings will be the title, population, phenomena of
synthesis. Palliat Med 2018;32(10):1539–51.
interest, and context for the specific review. Each
12. Kavalieratos D, Gelfman LP, Tycon LE, Riegel B, Bekelman
synthesized finding from the review will then be DB, Ikejiani DZ, et al. Palliative care in heart failure: ratio-
presented along with the type of research informing nale, evidence, and future priorities. J Am Coll Cardiol 2017;
it, the scores for dependability and credibility, and 70(15):1919–30.
the overall ConQual score. 13. Chuzi S, Pak ES, Desai AS, Schaefer KG, Warraich HJ. Role of
palliative care in the outpatient management of the chronic
Author contributions heart failure patient. Curr Heart Fail Rep 2019;16(6):220–8.
14. Perkins HS. Time to move advance care planning beyond
AH and MS conducted the literature search, study advance directives. Chest 2000;117(5):1228–31.
selection, literature assessment, data extraction, data 15. Van Der Smissen D, Overbeek A, Van Dulmen S, Van Ge-
synthesis, and assessment of findings. TM discussed mert-Pijnen L, Van Der Heide A, Rietjens JA, et al. The
the entire strategy. feasibility and effectiveness of web-based advance care
planning programs: scoping review. J Med Internet Res
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Appendix I: Search strategy

MEDLINE (PubMed)
Search conducted: July 4, 2022.

Results
Ref Search terms retreived

#1 “heart failure”[MeSH Terms] OR (“heart”[All Fields] AND “failure”[All Fields]) OR “heart failure”[All Fields] OR “cardiac failure”[All 317,147
Fields] OR (“cardiac”[All Fields] AND “failure”[All Fields])

#2 “palliative care”[MeSH Terms] OR (“palliative”[All Fields] AND “care”[All Fields]) OR “palliative care”[All Fields] OR “end-of-life 162,331
care”[All Fields] OR (“end”[All Fields] AND “life”[All Fields] AND “care”[All Fields]) OR “hospice care”[MeSH Terms] OR (“hospice”[All
Fields] AND “care”[All Fields]) OR “hospice care”[All Fields] OR (“end”[All Fields] AND “life”[All Fields] AND “care”[All Fields]) OR
“terminal care”[MeSH Terms] OR (“terminal”[All Fields] AND “care”[All Fields]) OR “terminal care”[All Fields]

#3 “advance care planning”[MeSH Terms] OR (“advance”[All Fields] AND “care”[All Fields] AND “planning”[All Fields]) OR “advance care 1,879,516
planning”[All Fields] OR (“advance directives”[MeSH Terms] OR (“advance”[All Fields] AND “directives”[All Fields]) OR “advance
directives”[All Fields]) OR (“living wills”[MeSH Terms] OR (“living”[All Fields] AND “wills”[All Fields]) OR “living wills”[All Fields]) OR
(“decision-making, shared”[MeSH Terms] OR (“decision”[All Fields] AND “making”[All Fields] AND “shared”[All Fields]) OR “shared
decision-making”[All Fields] OR (“shared”[All Fields] AND “decision”[All Fields] AND “making”[All Fields])) OR (“discuss”[All Fields] OR
“discussant”[All Fields] OR “discussants”[All Fields] OR “discussed”[All Fields] OR “discusses”[All Fields] OR “discussing”[All Fields] OR
“discussion”[All Fields] OR “discussions”[All Fields]) OR (“conversant”[All Fields] OR “conversants”[All Fields] OR “conversation”[All
Fields] OR “conversational”[All Fields] OR “conversations”[All Fields] OR “conversed”[All Fields] OR “conversing”[All Fields])

#4 “experience”[All Fields] OR “experience’s”[All Fields] OR “experiences”[All Fields] OR “percept”[All Fields] OR “perceptibility”[All 1,586,030
Fields] OR “perceptible”[All Fields] OR “perception”[MeSH Terms] OR “perception”[All Fields] OR “perceptions”[All Fields] OR
“perceptional”[All Fields] OR “perceptive”[All Fields] OR “perceptiveness”[All Fields] OR “percepts”[All Fields]

#5 (#1 AND #2 AND #4) OR (#1 AND #3 AND #4) 1969

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Appendix II: Draft data extraction instrument

Record Number
ACP system

Item Study description Page, line

Documentation

Training

Facilitators and patricipants

Palliative care

ACP Intervention method

Domain Outcome construct Study description Page, line

Process Knowledge

Self-efficacy

Readiness

Barriers, facilitators

Attitudes

Prognostic awareness

Action Communication

Documentation

Quality of care Care consistent with goal

Satisfaction

Health care Health status

Mental health

Care utility

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