End-of-Life Care
Review Article
Interventions Guiding Advance Care Planning Conversations: A Systematic Review

https://doi.org/10.1016/j.jamda.2018.09.014Get rights and content

Abstract

Background

Advance care planning (ACP) is a communicative process of defining preferences for future medical care. Conversation guides support professionals to conduct ACP conversations, yet insight into essential components is limited.

Objectives

To evaluate the content, rationale, and empirical evidence on the effect of ACP interventions based on conversation guides.

Methods

MEDLINE, Embase, PsycINFO, and CINAHL were searched from January 1, 1998, to February 23, 2018, to identify peer-reviewed articles describing or evaluating ACP interventions based on scripted conversation guides. A thematic analysis of the guides was performed. Data on intervention characteristics, underlying rationale, and empirical evidence were extracted by 2 authors independently using a predesigned form. Assessment of risk of bias and quality of reporting was performed using Cochrane tools and COREQ, respectively.

Results

Eighty-two articles reporting on 34 unique interventions met the inclusion criteria. Analysis of the conversation guides revealed a framework for ACP conversations consisting of 4 phases: preparation, initiation, exploration, and action. Exploration of patient's perspectives on illness, living well, end-of-life (EOL) issues, and decision making formed the core part of the guides. Their design was often expert-based, without an underlying theoretical background. Empirical evidence on the effect of the interventions was based on heterogeneous outcome measures. Dyad congruence and preference documentation rates increased among intervention subjects in most studies. The studies showed varying effects on knowledge of ACP, decisional conflict, quality of communication, and preferences-concordant care. Qualitative research showed that participants appreciate the importance and benefits of ACP conversations, yet perceive them as difficult and emotional.

Conclusion

ACP conversation guides address a diversity of themes regarding illness, EOL issues, and decision making. There is a focus on the exploration of patient's perspectives and preferences. Evidence on the translation of explorative information into specific treatment preferences and consequences for care as provided is limited.

Section snippets

Data Sources and Searches

The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist was used to structure the review process.9 A structured computerized literature search was performed in 4 databases: MEDLINE, Embase, PsycINFO, and CINAHL. The search strategy included terms describing the following domains: advance care planning, intervention, and communication (Table 1). Two reviewers (J.F., M.V.) independently screened all abstracts to select relevant papers. Disagreements were resolved

Results

The search yielded 15,745 unique hits. Eighty-two articles met the inclusion criteria (Figure 1) reporting on 34 unique ACP interventions. Sixty-one articles presented empirical data about 27 interventions.16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 53, 54, 55, 56, 57, 58, 59, 60, 61, 62, 63, 64, 65, 66, 67, 68, 69, 70, 71, 72, 73, 74, 75, 76 The remaining articles presented a description of

Findings

To our knowledge, this is the first systematic review evaluating the content, feasibility, and effectiveness of interventions based on a conversation guide to support health care professionals in ACP conversations. Thirty-four unique interventions were identified. Most interventions lacked a comprehensive theoretical underpinning. A thematic analysis of identified conversation guides revealed 4 subsequent phases of ACP conversations: preparation, initiation, exploration, and action. The

Conclusions

Scripted ACP conversation guides structure ACP discussions in 4 phases: preparation, initiation, exploration, and action. Exploration of patient's views on illness, living well, EOL issues, and decision making form the core part of ACP conversation guides. This exploration might support the professional to align medical care with patients' preferences. Research evaluating the relation between guided ACP conversations and preferences-concordant care is limited. Further research needs to reveal

Acknowledgments

We thank René Spijker for sharing his expertise in literature searches and for performing the electronic literature search. We thank Kyra Prinsze for her support in hand-searching the reference lists and double checking the quality of reporting assessment of qualitative studies.

References (105)

  • L.A. Briggs et al.

    Patient-centered advance care planning in special patient populations: A pilot study

    J Prof Nurs

    (2004)
  • M.K. Song et al.

    Effects of an intervention to improve communication about end-of-life care among African Americans with chronic kidney disease

    Appl Nurs Res

    (2010)
  • G.B. Rocque et al.

    Implementation and impact of patient lay navigator-led advance care planning conversations

    J Pain Symptom Manage

    (2017)
  • M. Metzger et al.

    A randomized controlled pilot trial to improve advance care planning for LVAD patients and their surrogates

    Heart Lung

    (2016)
  • M. Metzger et al.

    LVAD patients' and surrogates' perspectives on SPIRIT-HF: An advance care planning discussion

    Heart Lung

    (2016)
  • M.K. Song et al.

    Advance care planning and end-of-life decision making in dialysis: A randomized controlled trial targeting patients and their surrogates

    Am J Kidney Dis

    (2015)
  • M.J. Karel et al.

    Using a Values Discussion Guide to facilitate communication in advance care planning

    Patient Educ Couns

    (2004)
  • S.N. Davison et al.

    The creation of an advance care planning process for patients with ESRD

    Am J Kidney Dis

    (2007)
  • M.M. Mahon

    An advance directive in two questions

    J Pain Symptom Manage

    (2011)
  • R.H. Dallas et al.

    Longitudinal pediatric palliative care: Quality of life & Spiritual Struggle (FACE): Design and methods

    Contemp Clin Trials

    (2012)
  • A.L. Kimmel et al.

    FAmily CEntered (FACE) advance care planning: Study design and methods for a patient-centered communication and decision-making intervention for patients with HIV/AIDS and their surrogate decision-makers

    Contemp Clin Trials

    (2015)
  • K.B. Curtin et al.

    Pediatric advance care planning (pACP) for teens with cancer and their families: Design of a dyadic, longitudinal RCCT

    Contemp Clin Trials

    (2017)
  • M.K. Song et al.

    SPIRIT trial: A phase III pragmatic trial of an advance care planning intervention in ESRD

    Contemp Clin Trials

    (2018)
  • R.L. Sudore et al.

    Defining advance care planning for adults: A consensus definition from a multidisciplinary Delphi panel

    J Pain Symptom Manage

    (2017)
  • Committee on approaching death: Addressing key end-of-life issues

    Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life

    (2015)
  • A. Brinkman-Stoppelenburg et al.

    The effects of advance care planning on end-of-life care: A systematic review

    Palliat Med

    (2014)
  • K.M. Detering et al.

    The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial

    BMJ

    (2010)
  • R.E. Bernacki et al.

    Communication about serious illness care goals: A review and synthesis of best practices

    JAMA Intern Med

    (2014)
  • A. De Vleminck et al.

    Development of a complex intervention to support the initiation of advance care planning by general practitioners in patients at risk of deteriorating or dying: A phase 0-1 study

    BMC Palliat Care

    (2016)
  • D. Moher et al.

    Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement

    Ann Intern Med

    (2009)
  • R. Schulz et al.

    Intervention Taxonomy (ITAX): Describing essential features of interventions

    Am J Health Behav

    (2010)
  • A. Tong et al.

    Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups

    Int J Qual Health Care

    (2007)
  • M. Dixon-Woods et al.

    The problem of appraising qualitative research

    Qual Saf Health Care

    (2004)
  • J. Popay et al.

    Guidance on the Conduct of Narrative Synthesis in Systematic Reviews: A Product from the ESRC Methods Programme

    (2006)
  • J. Thomas et al.

    Methods for the thematic synthesis of qualitative research in systematic reviews

    BMC Med Res Methodol

    (2008)
  • L.A. Edwards et al.

    Improving outpatient advance care planning for adults with congenital or pediatric heart disease followed in a pediatric heart failure and transplant clinic

    Congenit Heart Dis

    (2018)
  • A.C. Simpson

    An opportunity to care? Preliminary insights from a qualitative study on advance care planning in advanced COPD

    Prog Palliat Care

    (2011)
  • C. Simpson

    Advance care planning in COPD: Care versus “code status.”

    Chron Respir Dis

    (2012)
  • M. Poppe et al.

    Qualitative evaluation of advanced care planning in Early dementia (ACP-ED)

    PLoS One

    (2013)
  • P. Friis et al.

    Advance care planning discussions with geriatric patients

    Tidsskr Nor Laegeforening

    (2015)
  • G. Horne et al.

    Advance care planning for patients with inoperable lung cancer

    Int J Palliat Nurs

    (2006)
  • H.D. Lum et al.

    Advance care planning meets group medical visits: The feasibility of promoting conversations

    Ann Fam Med

    (2016)
  • H.D. Lum et al.

    A group visit initiative improves advance care planning documentation among older adults in primary care

    J Am Board Fam Med

    (2017)
  • S. Jacobs et al.

    Adolescent end of life preferences and congruence with their parents' preferences: Results of a survey of adolescents with cancer

    Pediatr Blood Cancer

    (2015)
  • M.E. Lyon et al.

    Development, feasibility, and acceptability of the family/Adolescent-centered (FACE) advance care planning intervention for adolescents with HIV

    J Palliat Med

    (2009)
  • M.E. Lyon et al.

    Who will speak for me? Improving end-of-life decision-making for adolescents with HIV and their families

    Pediatrics

    (2009)
  • M.E. Lyon et al.

    Is it safe? Talking to teens with HIV/AIDS about death and dying: A 3-month evaluation of family centered advance care (FACE) planning—Anxiety, depression, quality of life

    HIV/AIDS Res Palliat Care

    (2010)
  • M.E. Lyon et al.

    Family-centered advance care planning for teens with cancer

    JAMA Pediatr

    (2013)
  • M.E. Lyon et al.

    A randomized clinical trial of adolescents with HIV/AIDS: Pediatric advance care planning

    AIDS Care

    (2017)
  • Cited by (0)

    The study was sponsored by the Netherlands Organisation for Health Research and Development (ZonMw; Grant no. 844001206). The funding source had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

    The authors declare no conflicts of interest.

    View full text