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A Systematic Review and Gap Analysis of Advance Care Planning Intervention Components and Outcomes Among Cancer Patients Using the Transtheoretical Model of Health Behavior Change

Open ArchivePublished:October 25, 2018DOI:https://doi.org/10.1016/j.jpainsymman.2018.10.502

      Abstract

      Context

      Despite the benefits of advance care planning (ACP), cancer patients rarely engage in ACP. ACP is a process that parallels health behavior change. This makes the Transtheoretical Model of Health Behavior Change (TTM) an important framework for understanding how to increase ACP among cancer patients.

      Objectives

      This study aimed to systematically review ACP interventions for cancer patients by 1) categorizing ACP intervention components according to the stages and processes of behavior change in the TTM, 2) conducting a gap analysis among the categorized components, and 3) identifying patterns between the categorized intervention components and the intervention outcomes.

      Methods

      PubMed, CINAHL Plus, MEDLINE, Cochrane Library, and Web of Science databases were searched for articles related to ACP and cancer. ACP intervention components were abstracted, assessed for theoretical relevance, organized according to the stages and process of change in the TTM, and then synthesized.

      Results

      The search produced 4604 articles, with 25 meeting criteria for review. Most intervention components targeted the precontemplation and contemplation stages of change, with fewer targeting preparation, action, or maintenance. Multiple processes of change were not addressed. Interventions that resulted in ACP engagement tended to take an interdisciplinary approach to implementation and consisted of multiple consultations staged over time.

      Conclusion

      ACP likely requires “high touch” interventions to induce behavior change. ACP interventions that are stage-matched, use diverse mechanisms to engage ACP (i.e., processes of change), address ACP as a process, and monitor engagement across the illness trajectory are needed for cancers patients and their caregivers.

      Key Words

      Introduction

      Advance care planning (ACP) is as an essential aspect of providing patient-centered care to those with an advanced serious illness, such as cancer.
      Committee on Approaching Death
      Dying in America: Improving quality and honoring individual preferences near the end of life.
      ACP has three main components: completing a living will, designating a health care surrogate, and participating in end-of-life (EOL) discussions.
      United States Department of Health and Human Services
      Assistant Secretary for Planning and Evaluation, Office of Disability Aging and Long-Term Care Policy. Advance directives and advance care planning: Report to congress.
      Living wills and health care surrogate designations are collectively referred to as advance directives (ADs). As with all care planning, ACP is not a one-time event, but rather a process that evolves over the patient's illness trajectory to match care to the patient's goals and values.
      • Detering K.
      • Silveira M.J.
      Advance care planning and advance directives.
      Ideally, ACP should be initiated early in the illness trajectory and routinely reviewed when changes in the patient's condition or transitions of care occur.
      National Comprehensive Cancer Network
      NCCN clinical practice guidelines in oncology: palliative care.
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      The often protracted illness trajectory of cancer provides a context in which ACP can occur in its ideal state. Yet, ACP, if initiated at all in oncology practice, tends to occur in the late stages of the cancer illness trajectory and is rarely reviewed afterward.
      • Bires J.L.
      • Franklin E.F.
      • Nichols H.M.
      • Cagle J.G.
      Advance care planning communication: oncology patients and providers voice their perspectives.
      • Brinkman-Stoppelenburg A.
      • Rietjens J.A.C.
      • van der Heide A.
      The effects of advance care planning on end-of-life care: a systematic review.
      As a patient-centered planning process, ACP confers many benefits for patients and informal caregivers. ACP has been associated with preference-matched care at the EOL, patient and caregiver satisfaction with care, caregiver satisfaction with the quality of the death, increased out-of-hospital care (i.e., care focused on quality of life), greater hospice referrals, and reductions in aggressive (e.g., mechanical ventilation) and potentially futile treatment interventions at the EOL.
      • Brinkman-Stoppelenburg A.
      • Rietjens J.A.C.
      • van der Heide A.
      The effects of advance care planning on end-of-life care: a systematic review.
      • Eckhert E.E.
      • Schoenbeck K.L.
      • Galligan D.
      • et al.
      Advance care planning and end-of-life care for patients with hematologic malignancies who die after hematopoietic cell transplant.
      • Narang A.
      • Wright A.A.
      • Nicholas L.H.
      Trends in advance care planning in patients with cancer results from a national longitudinal survey.
      Despite these benefits, cancer patients' engagement in ACP is relatively modest. Completion of AD forms among cancer patients ranges from 35% to 62%
      • Bires J.L.
      • Franklin E.F.
      • Nichols H.M.
      • Cagle J.G.
      Advance care planning communication: oncology patients and providers voice their perspectives.
      • Narang A.
      • Wright A.A.
      • Nicholas L.H.
      Trends in advance care planning in patients with cancer results from a national longitudinal survey.
      • Ganti A.
      • Lee S.J.
      • Vose J.M.
      • et al.
      Outcomes after hematopoietic stem cell transplantation for hematologic malignancies in patients with or without advanced care planning.
      and engagement in EOL discussions ranges from 37% to 62%.
      • Narang A.
      • Wright A.A.
      • Nicholas L.H.
      Trends in advance care planning in patients with cancer results from a national longitudinal survey.
      • Wright A.A.
      • Zhang B.
      • Ray A.
      • et al.
      Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment.
      Recent trends show that although cancer patients are increasingly designating health care surrogates, there have been minimal changes in completing living wills or participating in EOL discussions over a 12-year period.
      • Narang A.
      • Wright A.A.
      • Nicholas L.H.
      Trends in advance care planning in patients with cancer results from a national longitudinal survey.
      Addressing this modest and uneven engagement in ACP among cancer patients may benefit from a theoretical examination of interventions designed to improve engagement.
      EOL research, particularly intervention studies, is not typically guided by behavioral theory.
      • Scherrens A.
      • Beernaert K.
      • Robijn L.
      • et al.
      The use of behavioural theories in end-of-life care research: a systematic review.
      Using behavioral theories in EOL research provides a framework for understanding how to engage patients in the behaviors that improve the quality of EOL care, like ACP.
      • Scherrens A.
      • Beernaert K.
      • Robijn L.
      • et al.
      The use of behavioural theories in end-of-life care research: a systematic review.
      This allows for patient-centered predictors of behavior change to be more readily identified and incorporated into personalized approaches to EOL care.
      • Scherrens A.
      • Beernaert K.
      • Robijn L.
      • et al.
      The use of behavioural theories in end-of-life care research: a systematic review.
      Thus, behavioral theory has the potential to increase the effectiveness of EOL interventions by focusing the intervention on patient-centered mechanisms of behavior change, rather than practice-centered mechanisms.
      • Scherrens A.
      • Beernaert K.
      • Robijn L.
      • et al.
      The use of behavioural theories in end-of-life care research: a systematic review.
      The transtheoretical model of health behavior change (TTM) is one such theory that provides a framework for understanding behavior change. The TTM includes the core constructs of stages of change and embedded in these stages are processes of change.
      • Prochaska J.O.
      • Velicer W.F.
      The transtheoretical model of health behavior change.
      The six stages of change in the TTM are as follows: 1) precontemplation, 2) contemplation, 3) preparation, 4) action, 5) maintenance, and 6) termination. Each of the stages has a unique set of processes of change that enable a patient to move from stage to stage toward behavior change.
      • Prochaska J.O.
      • Velicer W.F.
      The transtheoretical model of health behavior change.
      The model also includes the constructs of decisional balance (i.e., weighing the pros and cons of the change) and self-efficacy (i.e., confidence in ability to cope with the change without relapse), which contribute to a patient's progression along the continuum of change.
      • Prochaska J.O.
      • Velicer W.F.
      The transtheoretical model of health behavior change.
      But, the processes of change, in particular, have been identified as important guides for health promotion intervention design because these processes function as the driving factors that actually result in the health behavior change.
      • Prochaska J.O.
      • Velicer W.F.
      The transtheoretical model of health behavior change.
      ACP has been conceptualized as an activity that parallels the process of health behavior change, making the TTM an important theoretical foundation for understanding ACP behaviors and designing interventions that address ACP engagement.
      • Pearlman R.A.
      • Cole W.G.
      • Patrick D.L.
      • Starks H.E.
      • Cain K.C.
      Advance care planning: eliciting patient preferences for life-sustaining treatment.
      • Sudore R.L.
      • Schickedanz A.D.
      • Landefeld C.S.
      • et al.
      Engagement in multiple steps of the advance care planning process: a descriptive study of diverse older adults.
      • Westley C.
      • Briggs L.A.
      Using the Stages of Change Model to improve communication about advance care planning.
      • Fried T.R.
      • Bullock K.
      • Iannone L.
      • O'Leary J.R.
      Understanding advance care planning as a process of health behavior change.
      • Fried T.R.
      • Redding C.A.
      • Robbins M.L.
      • et al.
      Stages of change for the component behaviors of advance care planning.
      Patients demonstrate a wide range of behaviors when thinking about or actually engaging in ACP.
      • Fried T.R.
      • Bullock K.
      • Iannone L.
      • O'Leary J.R.
      Understanding advance care planning as a process of health behavior change.
      • Fried T.R.
      • Redding C.A.
      • Robbins M.L.
      • et al.
      Stages of change for the component behaviors of advance care planning.
      These behaviors are emblematic of the TTM constructs and include the following: 1) a range of readiness to participate in ACP, which is consistent with the stages of change, 2) a range of strategies to overcome challenges in ACP, which is consistent with the processes of change and self-efficacy, and 3) a range of perceived barriers and benefits of ACP, which is consistent with decisional balance.
      • Fried T.R.
      • Bullock K.
      • Iannone L.
      • O'Leary J.R.
      Understanding advance care planning as a process of health behavior change.
      • Fried T.R.
      • Redding C.A.
      • Robbins M.L.
      • et al.
      Stages of change for the component behaviors of advance care planning.
      In the context of ACP, the processes of change (e.g., consciousness raising, self-reevaluation, helping relationships) have been identified as the explanatory mechanisms for how patients progress across the stages of change, from not even thinking about ACP to actually engaging in ACP.
      • Ernecoff N.C.
      • Keane C.R.
      • Albert S.M.
      Health behavior change in advance care planning: an agent-based model.
      Furthermore, psychometric testing supports the notion that stage-specific processes of change are essential in advancing patients from one stage of change to the next.
      • Fried T.R.
      • Redding C.A.
      • Robbins M.L.
      • et al.
      Promoting advance care planning as health behavior change: development of scales to assess decisional balance, medical and religious beliefs, and processes of change.
      Thus, by applying the TTM framework to ACP interventions, the design of ACP interventions can be critically analyzed and ways to increase engagement or address uneven engagement in ACP can be potentially identified.
      No systematic review, to our knowledge, has analyzed ACP intervention components and outcomes using a behavior change theory, although others have systematically reviewed perceptions and experiences of ACP
      • Johnson S.
      • Butow P.
      • Kerridge I.
      • Tattersall M.
      Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers.
      • Zwakman M.
      • Jabbarian L.
      • van Delden J.
      • et al.
      Advance care planning: a systematic review about experiences of patients with a life-threatening or life-limiting illness.
      ; preferences for content, style, timing of EOL discussions
      • Parker S.M.
      • Clayton J.M.
      • Hancock K.
      • et al.
      A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information.
      ; efficacy of interventions to increase AD completion
      • Jezewski M.A.
      • Meeker M.A.
      • Sessanna L.
      • Finnell D.S.
      The effectiveness of interventions to increase advance directive completion rates.
      ; interventions targeting EOL communication
      • Walczak A.
      • Butow P.N.
      • Bu S.
      • Clayton J.M.
      A systematic review of evidence for end-of-life communication interventions: who do they target, how are they structured and do they work?.
      ; and clinical tools and practices that address ACP.
      • Myers J.
      • Cosby R.
      • Gzik D.
      • et al.
      Provider tools for advance care planning and goals of care discussions: a systematic review.
      Identifying and then reviewing evidence for effective models for implementing and monitoring ACP interventions is needed.
      • Aziz N.M.
      • Miller J.L.
      • Curtis J.R.
      Palliative and end-of-life care research: embracing new opportunities.
      • Houben C.H.M.
      • Spruit M.A.
      • Groenen M.T.J.
      • Wouters E.F.M.
      • Janssen D.J.A.
      Efficacy of advance care planning: a systematic review and meta-analysis.
      To move the ACP intervention science forward, this study systematically reviewed ACP interventions for cancer patients, with aims to 1) categorize ACP intervention components according to the stages and processes of behavior change in the TTM, 2) conduct a gap analysis among the behavior change categorized intervention components, and 3) identify patterns between the behavior change categorized intervention components and successful behavior change (i.e., ACP engagement).

      Methods

      Eligibility Criteria

      Inclusion criteria were studies that 1) conducted a patient-centered intervention that addressed engagement in ACP (inclusive of any of its three components) or complex interventions (e.g., palliative care) with embedded ACP components, 2) were published in English, 3) included an adult sample of exclusively cancer patients, and 4) had an experimental, a quasi-experimental, or a quality improvement/program evaluation design. Exclusion criteria consisted of 1) studies without an intervention, 2) studies with a non-adult population (i.e., pediatric or adolescent), 3) studies with a non-patient population (i.e., health care providers), and 4) studies including non-cancer disease groups in the sample (e.g., end-stage renal disease).

      Information Sources

      The PubMed, CINAHL Plus, MEDLINE (EBSCO), Cochrane Library, and Web of Science databases were used to conduct the search. The original search was conducted in February 2017. That search was updated in both June 2017 and September 2018 to identify any additional articles published since the original search.

      Search

      ACP-related terms were combined with cancer-related terms in each database. The time limitation of 1990 to present was applied to each search as the Patient Self Determination Act of 1990 formalized the role of ACP in the delivery of quality health care services. Intervention-specific terms were not used in the search strategy to ensure the search captured the full breadth of ACP studies in the cancer patient population. Rather, intervention-specific terminology was used as a means of screening after the completed search. The search strategy according to each database is detailed in Appendix A. The search results were compiled and managed using EndNote Reference Manager (https://endnote.com/).

      Study Selection

      The combined searches produced 4604 articles with 2548 unique articles for title and abstract review after removing duplicates (Fig. 1). The focus of the initial title and abstract review was to be as inclusive as possible. For example, if abstracts were not available, the article was kept for full-text review or if there was any ambiguity in applying the inclusion and exclusion criteria, the article was kept for full-text review. Primary reasons for exclusion of articles during both title/abstract and full-text review included study design (i.e., nonexperimental designs including case studies, literature reviews, qualitative studies) or population (i.e., non-cancer patients) mismatches.
      Figure thumbnail gr1
      Fig. 1PRISMA flow diagram.
      Adapted from Moher, Liberati, Tetzlaff, and Altman (2009).

      Data Collection and Items

      Data abstraction was guided by the aims of this study. Data relevant to the study designs, countries conducted, type of ACP engaged by the intervention, intervention components, intervention contexts, participant characteristics, and ACP-specific outcomes were abstracted. Intervention component abstraction and categorization comprised the majority of the data collection process. Two abstractors (the first and second authors) conducted the initial abstraction and categorization of the intervention components with the third abstractor (the third author) retained for a confirmatory step. The first and second authors independently abstracted and categorized ACP intervention components into a stage of change and process of change in the TTM. A categorization guide with the standard definitions of the TTM constructs and ACP-specific examples cited in the literature guided this process
      • Prochaska J.O.
      • Velicer W.F.
      The transtheoretical model of health behavior change.
      • Fried T.R.
      • Bullock K.
      • Iannone L.
      • O'Leary J.R.
      Understanding advance care planning as a process of health behavior change.
      • Fried T.R.
      • Redding C.A.
      • Robbins M.L.
      • et al.
      Stages of change for the component behaviors of advance care planning.
      • Fried T.R.
      • Redding C.A.
      • Robbins M.L.
      • et al.
      Promoting advance care planning as health behavior change: development of scales to assess decisional balance, medical and religious beliefs, and processes of change.
      (Supplemental Table 1). In this first step, a total of 103 intervention components were initially identified. Comparison of the two independent intervention component categorizations revealed some discrepancies. These discrepancies largely occurred owing to the multifaceted nature of the abstracted components, requiring the components to be teased apart, treated as individual components, and recategorized. All discrepancies were discussed until consensus was achieved resulting in: 1) a final list of 125 intervention components across the ACP intervention studies and 2) a preliminary component categorization according to a stage of change and process of change in the TTM.
      In the confirmatory step, the third abstractor was then provided with a list of the 125 intervention components across the studies in the review. This abstractor identified one redundant intervention component in the list. This was collapsed into existing categories resulting in a final list of 124 intervention components. Using the same categorization guide, the third abstractor independently categorized the 125 intervention components and this was compared with the previous categorization schema completed by the first two abstractors. Once again, discrepancies were discussed until consensus achieved by using the categorization guide and a set of decision rules. This stepped process culminated in the final categorization of the ACP intervention components according to the stages and processes of change in the TTM.

      Risk of Bias

      A risk of bias tool that has been previously described in other systematic reviews was used to assess risk of bias in each study.
      • Arditi C.
      • Burnand B.
      • Peytremann-Bridevaux I.
      Adding non-randomised studies to a Cochrane review brings complementary information for healthcare stakeholders: an augmented systematic review and meta-analysis.
      The studies were adjudicated as low quality (4 or less “low risk of bias” indicators), moderate quality (5–8 indicators), or high quality (9 or more indicators) based on 12 indicators. These indicators included such things as evidence of random sequence generation, baseline characteristic similarity between groups, and evidence that the intervention was independent of other changes. Finally, studies were examined to identify patterns between these quality assessments and the outcome of the intervention.

      Synthesis of Results

      The data abstracted from the individual studies were synthesized using a realist approach.
      • Pawson R.
      • Greenhalgh T.
      • Gill H.
      • Walshe K.
      Realist review - a new method of systematic review designed for complex policy interventions.
      First, the theoretically guided intervention component categorization was totaled across each stage of change and each process of change (Aim 1). If interventions contained multiple components for a single stage of change, they were only counted once toward that particular stage of change total. Similarly, when the processes of change were summed, interventions that contained multiple components for a single process of change were only counted once. Second, the distribution of the intervention components across stages of change and processes of change was then examined for gaps and redundancies (Aim 2). Third, outcome data were synthesized by using a three-tiered coding system (change, neutral, no change) to indicate the overall study results with respect to ACP behavior change (i.e., whether the intervention resulted in ACP engagement) (Box 1). For post-test-only designs, reference ranges were derived from the literature: AD completion rates between 35% and 62%
      • Bires J.L.
      • Franklin E.F.
      • Nichols H.M.
      • Cagle J.G.
      Advance care planning communication: oncology patients and providers voice their perspectives.
      • Narang A.
      • Wright A.A.
      • Nicholas L.H.
      Trends in advance care planning in patients with cancer results from a national longitudinal survey.
      • Ganti A.
      • Lee S.J.
      • Vose J.M.
      • et al.
      Outcomes after hematopoietic stem cell transplantation for hematologic malignancies in patients with or without advanced care planning.
      and engagement in EOL discussions between 37% and 62%.
      • Narang A.
      • Wright A.A.
      • Nicholas L.H.
      Trends in advance care planning in patients with cancer results from a national longitudinal survey.
      • Wright A.A.
      • Zhang B.
      • Ray A.
      • et al.
      Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment.
      When outcomes were reported according to the different components of ACP, the coding system was applied to each component individually. As long as at least one of the components met the coding criteria for “change,” the overall intervention was considered to induce change. The overall ACP behavior change outcome of each intervention was then appraised in relation to the pattern of the intervention components across the stages and processes of behavior change (Aim 3).
      Box 1Three-Tiered Behavior Change Coding System
      • If significance reported in study
        • Coded as “change” if the ACP outcome was statistically significant
        • Coded as “no change” if nonsignificant
      • If significance not reported in study
        • Pretest/post-test design
          • Coded as “change” if post-test results exceed pretest results
          • Coded as “no change” if results similar
        • Post-test-only design
          • Coded as “change” if results exceed reported range of ACP among cancer patients
          • Coded as “neutral” if results within reported range
          • Coded as “no change” if results below reported range

      Results

      ACP Intervention Study Characteristics

      The search yielded a total of 4604 articles with 2548 unique articles after duplicates were removed. After title and abstract review, 449 articles were eligible for full-text review. Of these, 25 articles met criteria for this systematic review (Fig. 1). See Table 1, for the characteristics of each of these ACP intervention studies. In general, interventions were conducted in the U.S. (n = 18; 72%), in an outpatient setting (n = 20; 80%), and addressed “whole ACP” (n = 14; 56%), that is, all three components of ACP (completing a living will, designating a health care surrogate, and participating in EOL discussions). Intervention approaches to increase ACP engagement included consultation-based interactions (n = 14, 56%), technology-based interactions (n = 5, 20%), and other interactions (e.g., interventions centered on exploring values and preferences for care or providing ACP education) (n = 6, 24%). None of the intervention approaches were informed by the TTM and eight (32%) explicitly reported theoretical underpinnings or were adaptations of theoretically grounded interventions.
      • Green M.J.
      • Schubart J.R.
      • Whitehead M.M.
      • et al.
      Advance care planning does not adversely affect hope or anxiety among patients with advanced cancer.
      • Schenker Y.
      • White D.
      • Rosenzweig M.
      • et al.
      Care management by oncology nurses to address palliative care needs: a pilot trial to assess feasibility, acceptability, and perceived effectiveness of the CONNECT intervention.
      • Vogel R.I.
      • Petzel S.V.
      • Cragg J.
      • et al.
      Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial.
      • Walczak A.
      • Butow P.N.
      • Tattersall M.H.N.
      • et al.
      Encouraging early discussion of life expectancy and end-of-life care: a randomised controlled trial of a nurse-led communication support program for patients and caregivers.
      • Brohard C.
      Initial efficacy testing of an autobiographical memory intervention on advance care planning for patients with terminal cancer.
      • Bekelman D.B.
      • Johnson-Koenke R.
      • Bowles D.W.
      • Fischer S.M.
      Improving early palliative care with a scalable, stepped peer navigator and social work intervention: a single-arm clinical trial.
      • Epstein A.S.
      • O'Reilly E.M.
      • Shuk E.
      • et al.
      A randomized trial of acceptability and effects of values-based advance care planning in outpatient oncology: person-centered oncologic care and choices.
      • Rodenbach R.A.
      • Brandes K.
      • Fiscella K.
      • et al.
      Promoting end-of-life discussions in advanced cancer: effects of patient coaching and question prompt lists.
      After conducting the risk of bias analysis, all studies in this review were rated with either a low quality (i.e., high risk of bias) (n = 13, 52%) or moderate quality (n = 12, 48%) assessment (Supplemental Table 2).
      Table 1ACP Intervention Study Characteristics
      Authors/Publication YearStudyInterventionParticipants
      Clayton et al. (2007)Experimental

      Australia

      Sample size: 174 patients

      92 intervention

      82 control

      123 caregivers
      Approach: Other—question prompt list

      ACP type: End-of-life discussion

      Delivery: Outpatient palliative care clinic

      Timing: Within three consultations of the initial contact with the palliative care physician
      Mean age: 66 intervention

      65 control
      % Male: 61 intervention

      60 control
      Cancer types: Breast, GI, prostate, respiratory system, skin
      Cancer severity: 73% with >12 weeks physician estimated survival in intervention

      77% with >12 weeks physician estimated survival in control
      Pautex et al. (2008)Quasi-experimental

      Switzerland

      Sample size: 53 patients

      53 caregivers
      Approach: Other—education based

      ACP type: Advance directive

      Delivery: Inpatient palliative care unit

      Timing: During hospitalization
      Mean age: 72 overall
      % Male: 42 overall
      Cancer types: Breast, hematologic, GI, GU, respiratory system
      Cancer severity: Estimated life expectancy of less than six months
      El-Jawahri et al. (2010)Experimental

      U.S.

      Sample size: 59 patients

      23 intervention

      27 control
      Approach: Technology—video based

      ACP type: End-of-life discussion

      Delivery: Outpatient oncology clinic

      Timing: During clinic visit
      Mean age: 54 overall

      56 intervention

      51 control
      % Male: 56 overall

      61 intervention

      52 control
      Cancer types: Brain
      Cancer severity: Poor prognosis
      Jones et al. (2011)Experimental

      United Kingdom

      Sample size: 77 patients

      36 preference-matched

      arm

      41 randomized arm

      NR caregivers
      Approach: Consultation—staged

      ACP type: End-of-life discussion and living will

      Delivery: Outpatient oncology clinic and a hospice center

      Timing: Baseline measures collected at clinic visit with up to three subsequent appointments to receive intervention
      Mean age: 62 overall
      % Male: 51 overall
      Cancer types: Brain, breast, GI, GYN, hematologic, multiple sites, neuroendocrine, prostate, renal, respiratory system, skin
      Cancer severity: Participants had completed primary course of treatment for cancer and had evidence of active, progressive disease
      Dyar et al. (2012)Experimental

      U.S.

      Sample size:

      26 participants

      12 intervention

      14 control

      26 caregivers
      Approach: Consultation—staged

      ACP type: Whole ACP

      Delivery: Outpatient oncology clinic

      Timing: Intervention at the baseline clinic visit and one month later
      Mean age: 66 overall

      67 intervention

      65 control
      % Male: 31 overall

      25 intervention

      36 control
      Cancer types: Breast, prostate, respiratory system
      Cancer severity: Physician estimated hospice referral likely within 12 months of enrollment
      Volandes et al. (2012)Quasi-experimental

      U.S.

      Sample size: 80 participants

      NR caregivers
      Approach: Technology—video based

      ACP type: End-of-life discussion

      Delivery: Outpatient oncology clinic

      Timing: During the clinic visit
      Mean age: 65 overall
      % Male: 73 overall
      Cancer types: Breast, hematologic, leiomyosarcoma, pancreatic, prostate, skin
      Cancer severity: Physician judgment that the patient had terminal, progressive cancer with a palliative treatment intent
      Epstein et al. (2013)Experimental

      U.S.

      Sample size: 57 participants

      30 intervention

      26 control

      NR caregivers
      Approach: Technology—video based

      ACP type: Whole ACP

      Delivery: Outpatient oncology clinic

      Timing: During clinic visit
      Mean age: 65 intervention

      66 control
      % Male: 50 intervention

      54 control
      Cancer types: GI
      Cancer severity: Physician estimated life expectancy of less than one year
      Vogel et al. (2013)Experimental

      U.S.

      Sample size: 35 participants

      20 intervention

      15 control

      6 caregivers
      Approach: Technology—computer based

      ACP type: Whole ACP

      Delivery: Online

      Timing: 60-day trial of ACP web site with expectation of accessing the web site two to three times weekly
      Mean age: 58 overall

      60 intervention

      56 control
      % Male: None
      Cancer types: GYN
      Cancer severity: Participants with a new diagnosis, in remission, or experiencing a first or multiple recurrence
      Kuntz et al. (2014)Program evaluation

      U.S.

      Sample size: 85 patients
      Approach: Other—embedded ACP in oncology medical home project

      ACP type: Whole ACP

      Delivery: Outpatient oncology clinic

      Timing: Within 60 days of initiating cancer treatment
      Mean age: NR
      % Male: NR
      Cancer types: Breast, colon, respiratory system
      Cancer severity: Participants undergoing a new chemotherapy start
      Obel et al. (2014)Quality improvement

      U.S.

      Sample size: 48 patients
      Approach: Consultation—staged

      ACP type: Whole ACP

      Delivery: Outpatient oncology practice

      Timing: Starting at initial patient consultation and continuing through the third visit
      Mean age: NR
      % Male: NR
      Cancer types: GI, respiratory system
      Cancer severity: New diagnosis Stage IV cancer
      Trarieux-Signol et al. (2014)Program evaluation

      France

      Sample size: 197 patients
      Approach: Other—updated ACP procedure

      ACP type: Whole ACP

      Delivery: Inpatient hospital

      Timing: During admission
      Mean age: 64 overall
      % Male: 56 overall
      Cancer types: Hematologic
      Cancer severity: 78% of the sample had a two-year survival rate
      Yeh et al. (2014)Quasi-experimental

      U.S.

      Sample size: 30 patients
      Approach: Other—question prompt list

      ACP type: End-of-life discussion

      Delivery: Outpatient oncology clinic

      Timing: Before a new patient consultation
      Mean age: 57 overall
      % Male: 67 overall
      Cancer types: Head and neck
      Cancer severity: Advanced or metastatic Stage III or IV cancer
      Ferrell et al. (2015)Quasi-experimental

      U.S.

      Sample size: 491 patients

      272 intervention

      219 control
      Approach: Consultation—embedded ACP in staged palliative care consultations

      ACP type: Whole ACP

      Delivery: Outpatient oncology clinic and over the phone

      Timing: Baseline assessment and interdisciplinary palliative care meeting followed by four educational sessions
      Mean age: 65 yrs and older overall, mean not reported
      % Male: 36 intervention

      41 control
      Cancer types: Respiratory system
      Cancer severity: Stage I–IV cancer
      Green et al. (2015)Experimental

      U.S.

      Sample size: 200 patients

      99 intervention

      101 control
      Approach: Technology—computer based

      ACP type: Advance directive

      Delivery: Outpatient oncology clinic, research center, and online

      Timing: During one study visit
      Mean age: 61 intervention

      60 control
      % Male: 59 intervention

      60 control
      Cancer types: Brain, GI, hematologic, respiratory system
      Cancer severity: Anticipated life expectancy of two or less years
      Michael et al. (2015)Quasi-experimental

      Australia

      Sample size: 30 patients

      26 caregivers
      Approach: Consultation—single consultation with clinical case vignettes

      ACP type: Whole ACP

      Delivery: Outpatient oncology clinic or participant home

      Timing: During study visit
      Mean age: 62 patients

      58 caregivers
      % Male: 63 patients

      31 caregivers
      Cancer types: GI, GU, head and neck, respiratory system, sarcoma
      Cancer severity: Stage III or IV cancer

      Prognosis of more than six weeks
      Schenker et al. (2015)Quasi-experimental

      U.S.

      Sample size: 23 patients

      19 caregivers
      Approach: Consultation—embedded ACP in staged palliative care consultations

      ACP type: Whole ACP

      Delivery: Outpatient oncology clinic

      Timing: Before or after regularly scheduled clinic visits occurring at least once monthly for three months
      Mean age: 67 patients

      57 caregivers
      % Male: 48 patients

      11 caregivers
      Cancer types: Breast, cervical, GI, neuroendocrine, ovarian, pancreatic, prostate, respiratory system
      Cancer severity: Physician judgment that patient likely to be admitted to the ICU or die in the next year
      Ma et al. (2016)Quasi-experimental

      U.S.

      Sample size: 34 patients

      34 caregivers
      Approach: Consultation—single

      ACP type: Whole ACP

      Delivery: Outpatient oncology clinic

      Timing: During clinic visit
      Mean age: NR
      % Male: NR
      Cancer types: NR
      Cancer severity: Prognosis of less than one year
      Brohard (2017)Quasi-experimental

      U.S.

      Sample size: 50 patients

      25 intervention

      25 control
      Approach: Consultation—single

      ACP type: End-of-life discussion

      Delivery: Participant's home

      Timing: During a study visit
      Mean age: 71 intervention

      69 control
      % Male: 60 intervention

      52 control
      Cancer types: Breast, GI, GYN, prostate, respiratory system
      Cancer severity: Terminal cancer with recent hospice enrollment
      Peltier et al. (2017)Program evaluation

      U.S.

      Sample size: 69 patients

      24 intervention

      45 historical control
      Approach: Consultation—staged

      ACP type: Whole ACP

      Delivery: Outpatient oncology clinic

      Timing: During clinic visit with subsequent intervention visits as desired by patient over a four-month period
      Mean age: NR
      % Male: NR
      Cancer types: NR
      Cancer severity: NR
      Rodenbach et al. (2017)Experimental

      U.S.

      Sample size: 170 patients

      84 intervention

      86 control

      122 caregivers

      63 intervention

      59 control
      Approach: Other—question prompt list

      ACP type: End-of-life discussion

      Delivery: Outpatient oncology clinic

      Timing: During clinic visit or up to three days before clinic visit
      Mean age: NR
      % Male: 40 intervention

      41 control
      Cancer types: Stage III or IV nonhematologic cancer
      Cancer severity: Physician judgment that patient likely to die in the next year
      Walczak et al. (2017)Experimental

      Australia

      Sample size: 110 patients

      61 intervention

      49 control

      NR caregivers
      Approach: Consultation—staged

      ACP type: Whole ACP

      Delivery: Outpatient oncology clinic

      Timing: During study visit occurring one week before clinic visit with follow-up phone call one to two weeks after the clinic visit
      Mean age: 64 overall

      64 intervention

      66 control
      % Male: 66 overall

      62 intervention

      69 control
      Cancer types: Bladder, bone, breast, GI, GU, GYN, head and neck, hematologic, prostate, respiratory system, soft tissue, testicular
      Cancer severity: Physician estimated two- to 12-month life expectancy
      Xing et al. (2017)Quasi-experimental

      China

      Sample size: 412 patients

      NR caregivers
      Approach: Other—education based

      ACP type: Advance directive

      Delivery: Inpatient hospital

      Timing: While undergoing cancer treatment
      Mean age: 57 in the group that was accepting of an advance directive

      55 in the group that was not accepting of an advance directive
      % Male: 60 in the group that was accepting of an advance directive

      57 in the group that was not accepting of an advance directive
      Cancer types: NR
      Cancer severity: NR
      Bekelman et al. (2018)Quasi-experimental

      U.S.

      Sample size: 17 patients
      Approach: Consultation—embedded ACP in staged palliative care peer navigation visits

      ACP type: Whole ACP

      Delivery: Outpatient oncology clinic

      Timing: Five planned visits occurring during a clinic visit or over the phone spanning approximately three months
      Mean age: 67.4
      % Male: 94%
      Cancer types: Central nervous system, GI, GU, hematologic, respiratory system
      Cancer severity: Physician judgment that patient likely to die in the next year
      Epstein et al. (2018)Experimental

      U.S.

      Sample size: 91 patients

      33 intervention arm 1

      43 intervention arm 2

      23 control
      Approach: Consultation—staged, utilized technology

      ACP type: End-of-life discussion

      Delivery: Outpatient oncology clinic

      Timing: During clinic visit with a one-month follow-up visit
      Mean age: 61 in intervention arm 1 (video + values interview)

      63 in intervention arm 2 (video only)

      59 in usual care
      % Male: 61 in intervention arm 1

      64 in intervention arm 2

      66 in usual care
      Cancer types: GI
      Cancer severity: Physician estimated one- to –12-month life expectancy
      Rabow et al. (2018)Quasi-experimental

      U.S.

      Sample size:

      35 patients

      NR caregivers
      Approach: Consultation—staged, group workshop format

      ACP type: Whole ACP

      Delivery: Outpatient oncology clinic

      Timing: During two study visits occurring two weeks apart
      Median age: 58
      % Male: NR
      Cancer types: Brain, GI, GU, GYN, hematologic, prostate
      Cancer severity: NR
      ACP = advance care planning; GI = gastrointestinal; GU = genitourinary; NR = not reported; GYN = gynecologic.
      A total of 2653 patients (sample sizes ranged from 17 to 491; mean ages ranged from 54–72 years) and 409 caregivers were included across the studies. Six interventions had some level of caregiver involvement yet actual numbers of caregivers were not reported.
      • Walczak A.
      • Butow P.N.
      • Tattersall M.H.N.
      • et al.
      Encouraging early discussion of life expectancy and end-of-life care: a randomised controlled trial of a nurse-led communication support program for patients and caregivers.
      • Epstein A.S.
      • Volandes A.E.
      • Chen L.Y.
      • et al.
      A randomized controlled trial of a cardiopulmonary resuscitation video in advance care planning for progressive pancreas and hepatobiliary cancer patients.
      • Jones L.
      • Harrington J.
      • Barlow C.A.
      • et al.
      Advance care planning in advanced cancer: can it be achieved? An exploratory randomized patient preference trial of a care planning discussion.
      • Volandes A.E.
      • Levin T.
      • Slovin S.
      • et al.
      Augmenting advance care planning in poor prognosis cancer with a video decision aid a preintervention-postintervention study.
      • Xing Y.F.
      • Lin J.X.
      • Li X.
      • et al.
      Advance directives: cancer patients' preferences and family-based decision making.
      • Rabow M.W.
      • McGowan M.
      • Small R.
      • Keyssar R.
      • Rugo H.S.
      Advance care planning in community: an evaluation of a pilot 2-Session, nurse-led workshop.
      Interventions targeted cancer patients from the new diagnosis of cancer
      • Vogel R.I.
      • Petzel S.V.
      • Cragg J.
      • et al.
      Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial.
      • Obel J.
      • Brockstein B.
      • Marschke M.
      • et al.
      Outpatient advance care planning for patients with metastatic cancer: a pilot quality improvement initiative.
      to the EOL.
      • Schenker Y.
      • White D.
      • Rosenzweig M.
      • et al.
      Care management by oncology nurses to address palliative care needs: a pilot trial to assess feasibility, acceptability, and perceived effectiveness of the CONNECT intervention.
      • Walczak A.
      • Butow P.N.
      • Tattersall M.H.N.
      • et al.
      Encouraging early discussion of life expectancy and end-of-life care: a randomised controlled trial of a nurse-led communication support program for patients and caregivers.
      • Brohard C.
      Initial efficacy testing of an autobiographical memory intervention on advance care planning for patients with terminal cancer.
      • Bekelman D.B.
      • Johnson-Koenke R.
      • Bowles D.W.
      • Fischer S.M.
      Improving early palliative care with a scalable, stepped peer navigator and social work intervention: a single-arm clinical trial.
      • Epstein A.S.
      • O'Reilly E.M.
      • Shuk E.
      • et al.
      A randomized trial of acceptability and effects of values-based advance care planning in outpatient oncology: person-centered oncologic care and choices.
      • Rodenbach R.A.
      • Brandes K.
      • Fiscella K.
      • et al.
      Promoting end-of-life discussions in advanced cancer: effects of patient coaching and question prompt lists.
      • Epstein A.S.
      • Volandes A.E.
      • Chen L.Y.
      • et al.
      A randomized controlled trial of a cardiopulmonary resuscitation video in advance care planning for progressive pancreas and hepatobiliary cancer patients.
      • Volandes A.E.
      • Levin T.
      • Slovin S.
      • et al.
      Augmenting advance care planning in poor prognosis cancer with a video decision aid a preintervention-postintervention study.
      • El-Jawahri A.
      • Podgurski L.M.
      • Eichler A.F.
      • et al.
      Use of video to facilitate end-of- life discussions with patients with cancer: a randomized controlled trial.
      • Ma J.D.
      • Benn M.
      • Nelson S.H.
      • et al.
      Exploring the definition of an informed health care proxy.
      • Pautex S.
      • Herrmann F.R.
      • Zulian G.B.
      Role of advance directives in palliative care units: a prospective study.
      The majority of interventions (n = 16; 64%) included patients with advanced stage cancer (Stage III or IV), progressive cancer, or patients with an estimated survival of less than one year.

      ACP Intervention Component Categorization and Gap Analysis

      Stages of Change

      Categorization of intervention components according to the stages of change in the TTM revealed most interventions targeted the precontemplation (n = 23; 92%) and contemplation (n = 22; 88%) stages of change (Fig. 2). Percentages sum to greater than 100% because interventions could address multiple stages of change. When the gap analysis was conducted, we found that fewer studies used intervention components that targeted the preparation (n = 12; 48%), action (n = 14; 56%), or maintenance (n = 1; 4%) stages of change (Fig. 2).
      Figure thumbnail gr2
      Fig. 2ACP intervention component gap analysis. Processes of change numbers represent within stage proportions, rather than across study proportions. ACP = advance care planning; TTM = transtheoretical model of health behavior change.

      Processes of Change

      Categorization of intervention components according to the processes of change in the TTM found that consciousness raising (n = 24; 96%), self-reevaluation (n = 19; 76%), and helping relationships (n = 13; 52%) were common mechanisms used across interventions to move patients to engage in ACP (Table 2). When the gap analysis was conducted, there were fewer studies that used intervention components that targeted the dramatic relief (n = 5; 20%), environmental reevaluation (n = 6; 24%), self-liberation (n = 12; 48%), stimulus control (n = 4; 16%), and contingency management (n = 2; 8%) processes of change (Table 2). None of the categorized intervention components were consistent with the counterconditioning process of change.
      Table 2Categorization of ACP Intervention Components According to the TTM
      Authors/Intervention ObjectiveStages of ChangeACP Type: Outcome
      PrecontemplationContemplationPreparationActionMaintenance
      ACP-Centered Interventions
       Pautex et al. (2008)

      Role of physician-facilitated advance directive information in advance directive completion and satisfaction with end-of-life care
      Consciousness-raising: Senior physician–led information on AD

      Consciousness raising: Senior physician encouragement to complete AD
      Consciousness raising: Unit staff–led oral information for patient's expressing interestHelping relationships: HCP-led writing assistance after commitmentAD: change
       El-Jawahri et al. (2010)

      Role of a levels-of-care video in patient preferences for end-of-life care and uncertainty in decision-making versus verbal narrative alone control
      Consciousness-raising: Physician-led introduction to ADs, end-of-life planning, and goals-of-care during screening

      Consciousness-raising: Baseline knowledge assessment of levels of medical care

      Consciousness-raising: Verbal narrative of three levels of medical care
      Self-reevaluation: Baseline assessment of patient preferences for CPR in advanced cancerSelf-liberation: Six-minute video with images of three levels of medical care: life prolonging, basic, and comfort careHelping relationships: Post-assessment of patient preferences for CPR in advanced cancer

      Helping relationships: Post-assessment of patient preferred level of care in advanced cancer
      NR
       Jones et al. (2011)

      Role of an ACP discussion session with an independent facilitator in subsequent end-of-life discussions versus usual care control
      Consciousness- raising: Patient chose to receive the ACP discussion in addition to usual care, continue with usual care only, or be randomizedSelf-reevaluation: Up to three ACP facilitator-led discussions using a checklist of topic domains that explored the patient's perceptions of the cancer, future concerns/decisions, and HCP and family communicationSelf-liberation: Option to complete a living willEOLD: no change
      Change determination made based on significance testing with a P < 0.05.
       Volandes et al. (2012)

      Role of a goals-of-care video in preferences for and knowledge of end-of-life care
      Consciousness-raising: Baseline and post knowledge assessment of levels of medical care

      Consciousness-raising: Verbal narrative of three levels of medical care in advance cancer
      Self-reevaluation: Baseline assessment of patient preferences for CPR or mechanical ventilationSelf-liberation: Six-minute video with images of three levels of medical care: life prolonging, basic, and comfort careHelping relationships: Post-assessment of patient preferred level of care after verbal narrative

      Helping relationships: Post-assessment of patient preferred level of care after video

      Helping relationships: Post-assessment of patient preferences for CPR or mechanical ventilation
      NR
       Epstein et al. (2013)

      Role of a CPR video in ACP documentation, ACP knowledge, and preference for cardiopulmonary resuscitation/ventilation versus a CPR control
      Consciousness-raising: Physician-led introduction to ACP

      Consciousness-raising: Baseline and post knowledge assessment of ACP

      Consciousness-raising: Video- or narrative- based education on CPR and mechanical ventilation

      Dramatic relief: Video images of CPR and mechanical ventilation
      Self-reevaluation: Baseline assessment of patient preferences for CPR or mechanical ventilationHelping relationships: Post-assessment of patient preferences for CPR or mechanical ventilationAD: No change
      Change determination made based on significance testing with a P < 0.05.
       Vogel et al. (2013)

      Role of website in AD completion and participation in a palliative care consultation versus control website with usual care information documents
      Consciousness-raising/environmental reevaluation: Separate patient and caregiver websites

      Consciousness-raising: Educational materials on decision-making

      Consciousness-raising: Suggested reading based on cancer stage

      Consciousness-raising: three levels of education available

      Environmental reevaluation: Discussions with caregivers/HCPs encouraged
      Dramatic relief: Social media features (i.e., shared journal, discussion forum)

      Self-reevaluation: Feature to record questions to ask HCPs

      Self-reevaluation: Interactive medical decision guide
      Self-liberation: AD form on websiteAD: no change
      Change determination made based on significance testing with a P < 0.05.
       Obel et al. (2014)

      Role of a pilot ACP intervention in ACP completion versus historical controls
      Consciousness-raising: At first visit, physician review of nurse assessed ACP information and physician encouraged ACP

      Consciousness-raising: At first visit, ACP guidebook provided

      Consciousness-raising: At second visit, nurse-led ACP education if indicated by physician

      Environmental reevaluation: Social work consultation if difficulty with ACP
      Self-reevaluation: Nurse-led ACP assessment at first visit using four standardized questions

      Self-reevaluation: At second visit, nurse-led ACP guidebook review to explore patient goals, beliefs, and end-of-life views
      Helping relationships: At third visit, physician discussed goals of care with the patientContingency management/stimulus control: If disease progression, an algorithm directed the HCP to revisit goals of care and discuss treatment options with a corresponding AD note documented if changesAD: change
       Trarieux-Signol et al. (2014)

      Role of a program to inform patient's about ADs and encourage discussion of end-of-life preferences in the documentation of health care surrogates and living wills
      Consciousness-raising: Two educational posters for patient's and caregivers

      Consciousness-raising: Welcome handout with patient information form and description of the “Patients Rights and End-of-Life Care” Act in France

      Consciousness-raising: Trained HCPs presented concepts of HCS and living will to patient
      Self-liberation: Welcome procedure provided option to designate a health care surrogate, complete a living will, and/or meet with a religious representative

      Self-liberation: AD form with few instructions to encourage patient expression of desires
      Living will: no change

      HCS: change
       Yeh et al. (2014)

      Role of a question prompt list in use of question prompt list, patient anxiety, and patient satisfaction
      Consciousness-raising: One-page question prompt list provided before physician consultation and encouragement to use itNR
       Green et al. (2015)

      Role of “Making Your Wishes Known” online decision aid in hope and anxiety versus control with online AD and educational materials
      Consciousness-raising: Education components about conditions that lead to loss of decision-making capacity and medical treatments at the end of lifeSelf-reevaluation: Prompts to articulate values, goals, and preferences for medical careStimulus control: Advance directive generated using the patient's responses to decision aidAD: change
       Michael et al. (2015)

      Role of a nurse-led ACP intervention using vignette technique in ACP knowledge, satisfaction, and decision conflict
      Consciousness-raising: Baseline and post knowledge assessment of ACP

      Consciousness-raising: Nurse-led ACP education

      Dramatic relief: Nurse-led presentation of case vignettes regarding role of ACP in decision-making
      Self-reevaluation: Nurse tailored intervention discussion to patient-caregiver decision-making needs

      Self-reevaluation: Assessment of need for support from social workers, psychologists, or pastoral care
      Self-liberation: Nurse encouraged patient and caregiver to discuss values related to end of life and complete ACP documentsHelping relationships: Nurse offered opportunity to complete ACP documents or have further conversations with caregivers/HCPsAD: change
       Ma et al. (2016)

      Role of a social worker-led ACP intervention in generating an informed health care surrogate and AD completion
      Consciousness-raising: Social worker encouragement to complete an ADHelping relationships: Social worker–led conversation with the patient and health care surrogate exploring end-of-life preferences

      Helping relationships: Confirmation that health care surrogate understood the stated preferences
      AD: change
      Change determination made based on significance testing with a P < 0.05.
       Brohard (2017)

      Role of a nurse-led autobiographic memory intervention and ACP survey in patient perceived likelihood of ACP decision-making and communication versus ACP survey–only control
      Consciousness-raising: Completion of ACP survey before interviewDramatic relief: Patient recollection of a loved one who died of cancer and the person's ACP/end-of-life decisions

      Self-reevaluation: Patients compare memories to their current situation

      Consciousness- raising: Completion of ACP survey after interview

      Consciousness- raising: Nurse-led summary of interview
      NR
       Peltier et al. (2017)

      Role of an ACP facilitator–led ACP intervention in ACP completion and health care utilization versus usual care control
      Consciousness-raising: Mailed letter outlining pilot program and benefits of ACP before appointmentSelf-reevaluation: At appointment, ACP questions regarding past conversations, documents, and desire to meet to revisit and/or explore future decision-makingHelping relationships: If desire to meet regarding ACP, discussions scheduled and carried outACP: no change
      Change determination made based on significance testing with a P < 0.05.
       Rodenbach et al. (2017)

      Role of a one-hour social worker–led coaching session in the number and nature of topics discussed with the physician versus usual care control
      Consciousness- raising: Coaching on how to ask the physician questions or express concerns

      Self-reevaluation: Review of a question prompt list booklet with the patient/caregiver

      Self-reevaluation/environmental reevaluation: Patient/caregiver identification and prioritization of two to three topics of interest from question prompt list
      EOLD: change
      Change determination made based on significance testing with a P < 0.05.
       Walczak et al. (2017)

      Role of a nurse-led communication support program in end-of-life discussions versus usual care control
      Consciousness-raising: DVD with ACP education provided to patientSelf-reevaluation: Nurse-led 45-minute consultation reviewing a question prompt list one week before the physician appointment

      Self-reevaluation: Patient prompted to choose one to three questions to ask at the physician appointment
      Self-liberation: Nurse-led 15-minute booster telephone call one to two weeks after the consultation to reinforce content and prepare for discussions in future consultationsEOLD: change
      Change determination made based on significance testing with a P < 0.05.
       Xing et al. (2017)

      Role of an AD intervention in the acceptance of an AD and AD completion
      Consciousness-raising: Physician informally introduced AD to patient's main decision maker while patient was receiving treatmentConsciousness- raising: Physician officially recommended AD when treatment was terminated or if a high risk of sudden deathSelf-liberation: Physician systematically reviewed AD choices if desire to complete expressedLiving will: neutral
       Epstein et al. (2018)

      Role of a research assistant–led values-based advance care planning on decisional conflict and well-being versus a goals-of-care video control and a usual care control
      Self-reevaluation: At first follow-up after values interview, one-page summary of values interview reviewed and corrected by patient

      Environmental reevaluation: Corrected one-page summary of values interview given to patient to keep and patient encouraged to share with loved ones
      Self-liberation: Six-minute video with images and accompanying narration of three levels of medical care: life prolonging, limited care, and comfort careHelping relationships: Research assistant–led patient values interview with 11 questions related to goals, care goals video, concerns, and sources of support

      Helping relationships: Post-assessment of changes in ACP values at one-month follow-up
      NR
       Rabow et al. (2018)

      Role of a nurse-led ACP workshop in ACP readiness and AD completion
      Dramatic relief: Poem reading when workshop began

      Dramatic relief: Introductions with personal reasons for attending workshop and sharing of diagnosis

      Consciousness-raising: ACP information packets

      Consciousness-raising: Patients heard about care in hospital and hospice as well as choosing a health care surrogate
      Self-reevaluation: At the end of first session, patients were prompted to either write or talk about the meaning of quality of life and the meaning of and personal criteria for starting/stopping life support

      Environmental reevaluation: At the end of first session, patients asked to play “Go Wish” with their family
      Self-liberation: At the end of first session, patients were asked to name a health care surrogate, discuss their wishes with that person, and document their wishes using the “Five Wishes” form over the next two weeksHelping relationships: Patients shared stories with the group about their ACP process over the last two weeks

      Stimulus control: Patients and caregivers reviewed the “Five Wishes” form and asked questions

      Helping relationships: At the second session, notary public present to notarize forms
      AD: change
      Interventions with Embedded ACP
       Clayton et al. (2007)

      Role of a question prompt list in questions and discussion of end-of-life topics in a palliative care consultation versus routine palliative care consultation control
      Consciousness-raising: Physician endorsed and referred to question prompt list during consultationSelf-reevaluation: Question prompt list provided to patient and caregiver 20–30 minutes before the consultation to explore questions they desired to ask the physicianEOLD: change
      Change determination made based on significance testing with a P < 0.05.
       Dyar et al. (2012)

      Role of a discussion-based palliative care intervention with a nurse practitioner in quality of life, hospice knowledge, and hospice use
      Consciousness-raising: Nurse-led education on hospiceConsciousness- raising: Nurse assessed physical, psychological, cognitive, social, and spiritual needsHelping relationships: Nurse-led assistance filling out “Five Wishes” documents and living will formsAD: change
       Kuntz et al. (2014)

      Role of an oncology medical home model in standardization of treatment/symptom management and early ACP versus historical control
      Consciousness-raising: Patient portal with educational materialsSelf-reevaluation: Program features to help patient's define their preferences for the end of life within 60 days of initiating treatmentACP: no change
       Ferrell et al. (2015)

      Role of an interdisciplinary palliative care intervention in quality of life, symptom management, and psychological distress versus usual care control
      Consciousness-raising: Four nurse-led educational sessions according to four quality of life domains (∼36 minutes/each)

      Consciousness-raising: Weekly interdisciplinary palliative care team meetings to discuss nurse assessment (∼20 minutes/each); recommendations shared with patient
      Consciousness raising: Comprehensive baseline nurse assessment of quality of life, symptoms, and psychological distress

      Self-reevaluation: Patient-driven discussion during educational sessions based on quality of life topics of interest
      AD: change
      Change determination made based on significance testing with a P < 0.05.
       Schenker et al. (2015)

      Role of a nurse-led care management approach to a primary palliative care intervention in symptom assessment, emotional support, ACP, and care coordination
      Consciousness-raising: Information sheet given during recruitment

      Consciousness-raising: Nurse-led assessment of patient views of illness and coping

      Environmental reevaluation: Patients identified a primary caregiver

      Environmental reevaluation: Patient/caregiver involvement in ACP using shared care plan
      Self-reevaluation: Nurse-led discussions on treatment preferences and future goals during the second and third visit

      Self-reevaluation: Nurse-led follow-up phone call to assess for additional needs within one week of visits
      Self-liberation: Copy of “Five Wishes” Document provided at first visit

      Self-liberation: The first of the three nurse-led encounters focused on choosing a health care surrogate
      Helping relationships: Completion of “Five Wishes” document at third visitEOLD: neutral

      AD: change
       Bekelman et al. (2018)

      Role of a peer navigator and social worker–led palliative care intervention in quality of life and AD documentation
      Consciousness-raising: Peer navigator–led education on three palliative care domains (ACP, pain and symptom management, hospice) across all visitsSelf-reevaluation: Peer navigator-led assistance in completing a goals/values history

      Self-reevaluation: If high distress rating at visit assessment, social worker–led psychosocial assessment with psychotherapy modules (e.g., social supports, ACP, living with a life-threatening illness) and handouts
      Self-liberation: Blank copy of AD providedHelping relationships: Peer navigator–led assistance completing AD

      Helping relationships: Peer navigator–led discussion of goals/values history

      Contingency management: Reinforcement of benefits and limitations of ACP

      Stimulus control: Review of AD documents
      AD: change
      ACP = advance care planning; TTM = transtheoretical model of health behavior change; TMBC = transtheoretical model of behavior change; AD = advance directive; HCP = health care provider; CPR = cardiopulmonary resuscitation; NR = not reported; EOLD = end-of-life discussion; DVD = digital versatile disk.
      a Change determination made based on significance testing with a P < 0.05.

      ACP Intervention Outcome Pattern Identification

      How ACP-specific outcomes (e.g., completion of an AD) were measured and reported was inconsistent across the studies (Table 2). Despite having included components of ACP, five (20%) intervention studies lacked any ACP-specific outcomes.
      • Brohard C.
      Initial efficacy testing of an autobiographical memory intervention on advance care planning for patients with terminal cancer.
      • Epstein A.S.
      • O'Reilly E.M.
      • Shuk E.
      • et al.
      A randomized trial of acceptability and effects of values-based advance care planning in outpatient oncology: person-centered oncologic care and choices.
      • Volandes A.E.
      • Levin T.
      • Slovin S.
      • et al.
      Augmenting advance care planning in poor prognosis cancer with a video decision aid a preintervention-postintervention study.
      • El-Jawahri A.
      • Podgurski L.M.
      • Eichler A.F.
      • et al.
      Use of video to facilitate end-of- life discussions with patients with cancer: a randomized controlled trial.
      • Yeh J.C.
      • Cheng M.J.
      • Chung C.H.
      • Smith T.J.
      Using a question prompt list as a communication aid in advanced cancer care.
      Instead, these studies reported outcomes such as ACP knowledge,
      • Volandes A.E.
      • Levin T.
      • Slovin S.
      • et al.
      Augmenting advance care planning in poor prognosis cancer with a video decision aid a preintervention-postintervention study.
      • El-Jawahri A.
      • Podgurski L.M.
      • Eichler A.F.
      • et al.
      Use of video to facilitate end-of- life discussions with patients with cancer: a randomized controlled trial.
      preferences for EOL care,
      • Volandes A.E.
      • Levin T.
      • Slovin S.
      • et al.
      Augmenting advance care planning in poor prognosis cancer with a video decision aid a preintervention-postintervention study.
      • El-Jawahri A.
      • Podgurski L.M.
      • Eichler A.F.
      • et al.
      Use of video to facilitate end-of- life discussions with patients with cancer: a randomized controlled trial.
      patients' perceived likelihood of ACP engagement,
      • Brohard C.
      Initial efficacy testing of an autobiographical memory intervention on advance care planning for patients with terminal cancer.
      decisional conflict,
      • Epstein A.S.
      • O'Reilly E.M.
      • Shuk E.
      • et al.
      A randomized trial of acceptability and effects of values-based advance care planning in outpatient oncology: person-centered oncologic care and choices.
      uncertainty,
      • El-Jawahri A.
      • Podgurski L.M.
      • Eichler A.F.
      • et al.
      Use of video to facilitate end-of- life discussions with patients with cancer: a randomized controlled trial.
      anxiety,
      • Epstein A.S.
      • O'Reilly E.M.
      • Shuk E.
      • et al.
      A randomized trial of acceptability and effects of values-based advance care planning in outpatient oncology: person-centered oncologic care and choices.
      • Yeh J.C.
      • Cheng M.J.
      • Chung C.H.
      • Smith T.J.
      Using a question prompt list as a communication aid in advanced cancer care.
      depression,
      • Epstein A.S.
      • O'Reilly E.M.
      • Shuk E.
      • et al.
      A randomized trial of acceptability and effects of values-based advance care planning in outpatient oncology: person-centered oncologic care and choices.
      distress,
      • Epstein A.S.
      • O'Reilly E.M.
      • Shuk E.
      • et al.
      A randomized trial of acceptability and effects of values-based advance care planning in outpatient oncology: person-centered oncologic care and choices.
      and satisfaction.
      • Yeh J.C.
      • Cheng M.J.
      • Chung C.H.
      • Smith T.J.
      Using a question prompt list as a communication aid in advanced cancer care.
      In addition, ACP-specific outcome monitoring was incomplete across studies. For example, among the 14 interventions that fully engaged the three components of ACP (i.e., “Whole ACP”), 10 did not report EOL discussion frequency,
      • Vogel R.I.
      • Petzel S.V.
      • Cragg J.
      • et al.
      Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial.
      • Bekelman D.B.
      • Johnson-Koenke R.
      • Bowles D.W.
      • Fischer S.M.
      Improving early palliative care with a scalable, stepped peer navigator and social work intervention: a single-arm clinical trial.
      • Epstein A.S.
      • Volandes A.E.
      • Chen L.Y.
      • et al.
      A randomized controlled trial of a cardiopulmonary resuscitation video in advance care planning for progressive pancreas and hepatobiliary cancer patients.
      • Rabow M.W.
      • McGowan M.
      • Small R.
      • Keyssar R.
      • Rugo H.S.
      Advance care planning in community: an evaluation of a pilot 2-Session, nurse-led workshop.
      • Obel J.
      • Brockstein B.
      • Marschke M.
      • et al.
      Outpatient advance care planning for patients with metastatic cancer: a pilot quality improvement initiative.
      • Ma J.D.
      • Benn M.
      • Nelson S.H.
      • et al.
      Exploring the definition of an informed health care proxy.
      • Trarieux-Signol S.
      • Moreau S.
      • Gourin M.
      • et al.
      Factors associated with the designation of a health care proxy and writing advance directives for patients suffering from haematological malignancies.
      • Michael N.
      • O'Callaghan C.
      • Baird A.
      • et al.
      A mixed method feasibility study of a patient-and family-centered advance care planning intervention for cancer patients.
      • Ferrell B.
      • Sun V.
      • Hurria A.
      • et al.
      Interdisciplinary palliative care for patients with lung cancer.
      • Dyar S.
      • Lesperance M.
      • Shannon R.
      • Sloan J.
      • Colon-Otero G.
      A nurse practitioner directed intervention improves the quality of life of patients with metastatic cancer: results of a randomized pilot study.
      one did not report living will completion nor health care surrogate designation status,
      • Walczak A.
      • Butow P.N.
      • Tattersall M.H.N.
      • et al.
      Encouraging early discussion of life expectancy and end-of-life care: a randomised controlled trial of a nurse-led communication support program for patients and caregivers.
      and two generally reported an “advance care planning” outcome without a clear definition of how ACP was operationalized in the intervention.
      • Peltier W.L.
      • Gani F.
      • Blissitt J.
      • et al.
      Initial experience with “Honoring Choices Wisconsin”: implementation of an advance care planning pilot in a tertiary care setting.
      • Kuntz G.
      • Tozer J.M.
      • Snegosky J.
      • Fox J.
      • Neumann K.
      Michigan oncology medical home demonstration project: first-year results.
      A minority of studies in this review conducted power analyses (n = 8; 32%).
      • Vogel R.I.
      • Petzel S.V.
      • Cragg J.
      • et al.
      Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial.
      • Walczak A.
      • Butow P.N.
      • Tattersall M.H.N.
      • et al.
      Encouraging early discussion of life expectancy and end-of-life care: a randomised controlled trial of a nurse-led communication support program for patients and caregivers.
      • Brohard C.
      Initial efficacy testing of an autobiographical memory intervention on advance care planning for patients with terminal cancer.
      • Epstein A.S.
      • O'Reilly E.M.
      • Shuk E.
      • et al.
      A randomized trial of acceptability and effects of values-based advance care planning in outpatient oncology: person-centered oncologic care and choices.
      • Epstein A.S.
      • Volandes A.E.
      • Chen L.Y.
      • et al.
      A randomized controlled trial of a cardiopulmonary resuscitation video in advance care planning for progressive pancreas and hepatobiliary cancer patients.
      • El-Jawahri A.
      • Podgurski L.M.
      • Eichler A.F.
      • et al.
      Use of video to facilitate end-of- life discussions with patients with cancer: a randomized controlled trial.
      • Ferrell B.
      • Sun V.
      • Hurria A.
      • et al.
      Interdisciplinary palliative care for patients with lung cancer.
      • Clayton J.M.
      • Butow P.N.
      • Tattersall M.H.
      • et al.
      Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care.
      Among these power analyses, only four were actually conducted with respect to the ACP behavior change outcome. Of these four, three were underpowered to detect ACP behavior change
      • Vogel R.I.
      • Petzel S.V.
      • Cragg J.
      • et al.
      Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial.
      • Walczak A.
      • Butow P.N.
      • Tattersall M.H.N.
      • et al.
      Encouraging early discussion of life expectancy and end-of-life care: a randomised controlled trial of a nurse-led communication support program for patients and caregivers.
      • Epstein A.S.
      • Volandes A.E.
      • Chen L.Y.
      • et al.
      A randomized controlled trial of a cardiopulmonary resuscitation video in advance care planning for progressive pancreas and hepatobiliary cancer patients.
      and one was powered to detect ACP behavior change.
      • Clayton J.M.
      • Butow P.N.
      • Tattersall M.H.
      • et al.
      Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care.
      When outcomes were coded (change, neutral, no change) among the 20 interventions that did report ACP-specific outcomes, 14 (70%) resulted in at least some behavior change among the ACP components (i.e., ACP engagement), one (5%) was neutral in behavior change, and five (25%) did not result in behavior change. No distinct pattern between the number of stages or processes of change engaged by each intervention and the outcome of the intervention was identified (Table 2). In addition, no distinct pattern between the quality assessment of each study (i.e., risk of bias) and the outcome of the intervention was identified.
      However, several trends in the nature of the intervention were identified among the interventions that successfully engaged in ACP. Among the 14 interventions that resulted in behavior change, 12 (86%) used either an interdisciplinary approach (n = 7) or a nonphysician ACP facilitator (n = 5). Seven of these also included multiple, interactive face-to-face or phone-based consultations staged over time and five included active involvement of the patient's caregiver in the intervention.

      Discussion

      This is the first systematic review of ACP interventions that used the TTM to categorize intervention components, conduct a gap analysis, and identify outcome patterns. Categorization of the intervention components using the TTM revealed potentially important gaps in ACP intervention design that may explain the mixed outcomes in the studies analyzed, but more importantly the less than robust ACP engagement among cancer patients.

      ACP Intervention Study Characteristics

      Despite evidence to support the personalization of ACP interventions using the TTM framework,
      • Pearlman R.A.
      • Cole W.G.
      • Patrick D.L.
      • Starks H.E.
      • Cain K.C.
      Advance care planning: eliciting patient preferences for life-sustaining treatment.
      • Sudore R.L.
      • Schickedanz A.D.
      • Landefeld C.S.
      • et al.
      Engagement in multiple steps of the advance care planning process: a descriptive study of diverse older adults.
      • Westley C.
      • Briggs L.A.
      Using the Stages of Change Model to improve communication about advance care planning.
      • Fried T.R.
      • Bullock K.
      • Iannone L.
      • O'Leary J.R.
      Understanding advance care planning as a process of health behavior change.
      • Fried T.R.
      • Redding C.A.
      • Robbins M.L.
      • et al.
      Stages of change for the component behaviors of advance care planning.
      none of the ACP interventions in this systematic review were informed by the TTM. In one instance, participant reported stages of change were collected as an outcome of the intervention, rather than being used to personalize the intervention.
      • Vogel R.I.
      • Petzel S.V.
      • Cragg J.
      • et al.
      Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial.
      More meaningful clinical interactions may occur by stage-matching interventions. Stage-matched interventions using the TTM have theoretically and empirically been shown to improve the acceptability of interventions and increase behavior change.
      • Prochaska J.O.
      • Velicer W.F.
      The transtheoretical model of health behavior change.
      TTM-specific tools to assess stages of change are available and warrant incorporation in future ACP intervention designs for cancer patients.
      • Fried T.R.
      • Redding C.A.
      • Robbins M.L.
      • et al.
      Promoting advance care planning as health behavior change: development of scales to assess decisional balance, medical and religious beliefs, and processes of change.
      • Jezewski M.A.
      • Finnell D.S.
      • Wu Y.B.
      • et al.
      Psychometric testing of four transtheoretical model questionnaires for the behavior, completing health care proxies.
      Stage-matched ACP interventions have recently been studied among individuals in the general public, including a sample of diverse, older adults residing in the community
      • Sudore R.L.
      • Knight S.J.
      • Mcmahan R.D.
      • et al.
      A novel website to prepare diverse older adults for decision making and advance care planning: a pilot study.
      and a sample of adults from faith-based organizations in the community.
      • Medvene L.J.
      • Base M.
      • Patrick R.
      • Wescott J.
      Advance directives: assessing stage of change and decisional balance in a community-based educational program.
      These stage-matched interventions in non-cancer populations helped to promote engagement in the ACP behaviors (i.e., processes) that progress participants along the stages of change
      • Sudore R.L.
      • Knight S.J.
      • Mcmahan R.D.
      • et al.
      A novel website to prepare diverse older adults for decision making and advance care planning: a pilot study.
      and in the actual completion and revision of ADs.
      • Medvene L.J.
      • Base M.
      • Patrick R.
      • Wescott J.
      Advance directives: assessing stage of change and decisional balance in a community-based educational program.
      By stage-matching interventions, a more nuanced picture of ACP is elucidated, in that, ACP engagement can be captured beyond just the overt completion of an AD to being able to capture the more subtle, incremental improvements in ACP, like engagement in the processes that incite a transition to a higher stage of change.
      • Sudore R.L.
      • Knight S.J.
      • Mcmahan R.D.
      • et al.
      A novel website to prepare diverse older adults for decision making and advance care planning: a pilot study.
      Moreover, when compared to other intervention strategies, stage-matched interventions have the potential for more robust outcomes, particularly when the outcomes are examined longitudinally.
      • Prochaska J.O.
      • Velicer W.F.
      The transtheoretical model of health behavior change.
      This presents a pressing need for stage-matched ACP interventions for cancer patients, particularly when considering the length of the cancer illness trajectory.

      ACP Intervention Component Categorization and Gap Analysis

      Stages of Change

      Nearly all the ACP interventions reviewed addressed the precontemplation and contemplation stages of change; fewer addressed preparation and action; and only one addressed maintenance. This distribution highlighted gaps relevant to the maintenance stage of change, which focuses on maintaining the health behavior over time. It is in the maintenance stage of change, where treating ACP as a process comes into play. In this stage, both partial engagers in ACP can be encouraged to fully engage in the process and full engagers prompted to revisit ACP and update documents given new context. Cancer patients recognize their preferences for care may change throughout the illness trajectory,
      • Johnson S.
      • Butow P.
      • Kerridge I.
      • Tattersall M.
      Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers.
      but the studies in this review largely implemented ACP as a one-time event rather than a process evolving throughout the patient's illness. Preserving ACP as a process in the context of ACP interventions is particularly important for cancer patients given the often-protracted illness trajectory. In this way, the maintenance phase may be the most important stage of change relative to ACP in cancer as it motivates continued behavior over time. Fluctuations, such as relapsed or progressive disease, may cause cancer patients to reevaluate their desires for medical treatment at the EOL. These fluctuations could trigger ongoing discussions, where ACP documents could be updated to reflect any changed desires for care given the new disease context. In addition, illness fluctuations could serve as a means to motivate patients who have not yet completed ACP to do so. Little is known about the maintenance phase of ACP, and further research in this area could offer ways to understand the optimal time points for ACP throughout the illness trajectory, how to address uneven ACP engagement, and the nature in which preferences might change over time.
      The distribution of the stages of change addressed by the ACP interventions in this systematic review also highlights persistent one-size-fits-all approaches to ACP intervention design. In particular, the heavy emphasis on precontemplation and contemplation stages of change among the reviewed interventions may not match the needs of cancer patients. These stages of change focus on raising awareness and educating about ACP, but a high percentage of cancer patients already possess ACP knowledge (70%–97%).
      • Bires J.L.
      • Franklin E.F.
      • Nichols H.M.
      • Cagle J.G.
      Advance care planning communication: oncology patients and providers voice their perspectives.
      • Barakat A.
      • Barnes S.A.
      • Casanova M.A.
      • et al.
      Although the precontemplation and contemplation stages of change should not be abandoned in ACP intervention design for cancer patients,
      • Ugalde A.
      • O’Callaghan C.
      • Byard C.
      • et al.
      Does implementation matter if comprehension is lacking? A qualitative investigation into perceptions of advance care planning in people with cancer.
      these findings suggest that ACP interventions for cancer patients should also use processes that engage patients at stages further along the continuum of change, like that of the action and maintenance stages.

      Processes of Change

      Intervention components were largely consistent with the processes of change involving consciousness raising, self-reevaluation, and helping relationships, but dramatic relief, environmental reevaluation, self-liberation, stimulus control, contingency management, and counterconditioning were infrequently used. For example, the dramatic relief process of change, which is intended to evoke an emotional response that incites change (e.g., story-telling), was only used in three of the interventions
      • Vogel R.I.
      • Petzel S.V.
      • Cragg J.
      • et al.
      Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial.
      • Epstein A.S.
      • Volandes A.E.
      • Chen L.Y.
      • et al.
      A randomized controlled trial of a cardiopulmonary resuscitation video in advance care planning for progressive pancreas and hepatobiliary cancer patients.
      • Michael N.
      • O'Callaghan C.
      • Baird A.
      • et al.
      A mixed method feasibility study of a patient-and family-centered advance care planning intervention for cancer patients.
      and was commonly implemented using web-, video-, or vignette-based techniques. This process of change seems particularly useful in exploring preferences for care but should be paired with other processes of change in ACP interventions to promote more action-oriented ACP behaviors.
      Environmental reevaluation was not used in 19 of the studies. This process of change is particularly relevant to ACP because it challenges patients to consider the effect of a behavior on their loved ones.
      • Prochaska J.O.
      • Velicer W.F.
      The transtheoretical model of health behavior change.
      Inclusion of informal caregivers in ACP interventions allows patients to consider how ACP impacts their loved one and increases open communication about prognosis and desires for care at the EOL among not only the patient-caregiver dyad but also the patient–caregiver–health care provider triad.
      • Cottingham A.H.
      • Beck-Coon K.
      • Bernat J.K.
      • et al.
      Addressing personal barriers to advance care planning: qualitative investigation of a mindfulness-based intervention for adults with cancer and their family caregivers.
      Informal caregivers were involved in the ACP intervention using environmental reevaluation in three studies,
      • Schenker Y.
      • White D.
      • Rosenzweig M.
      • et al.
      Care management by oncology nurses to address palliative care needs: a pilot trial to assess feasibility, acceptability, and perceived effectiveness of the CONNECT intervention.
      • Vogel R.I.
      • Petzel S.V.
      • Cragg J.
      • et al.
      Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial.
      • Obel J.
      • Brockstein B.
      • Marschke M.
      • et al.
      Outpatient advance care planning for patients with metastatic cancer: a pilot quality improvement initiative.
      which took the form of the involving caregivers in education and dialogue about ACP. Caregivers' desires for early inclusion in the ACP process have been documented,
      • Conner N.E.
      • Chase S.K.
      Decisions and caregiving: end of life among blacks from the perspective of informal caregivers and decision makers.
      • Phi K.
      • Jarden M.
      Bereaved caregivers to patients with high-grade glioma: a qualitative explorative study.
      and early caregiver involvement has been shown to result in an informed caregiver.
      • Ma J.D.
      • Benn M.
      • Nelson S.H.
      • et al.
      Exploring the definition of an informed health care proxy.
      Informed caregivers are particularly needed given the majority of patients lack decision-making capacity at the EOL,
      • Silveira M.
      • Kim S.
      • Langa K.
      Advance directives and outcomes of surrogate decision making before death.
      with cancer patients having demonstrated deficits in their understanding of the information needed to inform decisions at the EOL and their ability to weigh the pros and cons of those decisions.
      • Kolva E.
      • Rosenfeld B.
      • Brescia R.
      • Comfort C.
      Assessing decision-making capacity at end of life.
      ACP interventions should formally engage both patients and their caregivers in ACP by using environmental reevaluation. Doing so may engender stronger commitment to behavior change as well as engage caregivers in the processes needed to inform later decision-making that is matched with the patient's preferences.
      Less than half of the studies contained intervention components that engaged the self-liberation process of change. Self-liberation involves presenting patients with three action choices.
      • Prochaska J.O.
      • Velicer W.F.
      The transtheoretical model of health behavior change.
      ACP consists of three distinct components; therefore, ACP interventions lend themselves to this process of change. Yet conceptualizations of ACP were inconsistent across studies and not representative of its three distinct components. For example, one study reported participants “received ACP” as a part of an oncology medical home program, but a clear definition of what constituted “received ACP” was not offered.
      • Kuntz G.
      • Tozer J.M.
      • Snegosky J.
      • Fox J.
      • Neumann K.
      Michigan oncology medical home demonstration project: first-year results.
      Furthermore, some interventions solely focused on the documentation components of ACP (living will or health care surrogate), whereas others focused on the communication component (EOL discussions). Disparate approaches like these may further engender uneven ACP engagement. The studies in this review also took more passive approaches to providing choices, such as website–based ACP documents
      • Myers J.
      • Cosby R.
      • Gzik D.
      • et al.
      Provider tools for advance care planning and goals of care discussions: a systematic review.
      and invitations to complete AD documentation.
      • Jones L.
      • Harrington J.
      • Barlow C.A.
      • et al.
      Advance care planning in advanced cancer: can it be achieved? An exploratory randomized patient preference trial of a care planning discussion.
      • Trarieux-Signol S.
      • Moreau S.
      • Gourin M.
      • et al.
      Factors associated with the designation of a health care proxy and writing advance directives for patients suffering from haematological malignancies.
      • Michael N.
      • O'Callaghan C.
      • Baird A.
      • et al.
      A mixed method feasibility study of a patient-and family-centered advance care planning intervention for cancer patients.
      Clearly stated, specific choices to engage in ACP are more likely to result in actual action, especially when offered during an in-person clinical interaction.

      ACP Intervention Outcome Pattern Identification

      Although most intervention outcomes were coded as an ACP behavior change, the majority of the interventions were of low to moderate quality, that is, the studies possessed a high to moderate risk of bias. This suggests that further research is needed to understand the actual impact interventions have on ACP behavior change among cancer patients, particularly when the interventions are informed by the TTM. In addition, the majority of studies were not sufficiently powered to detect change. This is a serious impediment to building an evidence base for ACP intervention design. When studies do not have sufficient power to detect real change in ACP behaviors, questions remain about whether the intervention was actually unsuccessful or whether more subjects were needed. Well-designed, TTM-informed ACP intervention studies that are fully powered are needed among cancer patients.
      Overall, no obvious patterns emerged between the outcome of the intervention (i.e., whether the intervention resulted in behavior change, no behavior change, or was neutral) and the number of stages or processes engaged. Inconsistencies between what was actually received in the intervention and what was reported as an outcome created challenges in drawing definitive conclusions about the compilation of theoretically categorized intervention components needed to optimize ACP behavior change. For example, although several interventions primarily addressed EOL discussions, the intervention components also addressed completing a living will or designating a health care surrogate, but outcomes pertaining to these components were lacking.
      • Walczak A.
      • Butow P.N.
      • Tattersall M.H.N.
      • et al.
      Encouraging early discussion of life expectancy and end-of-life care: a randomised controlled trial of a nurse-led communication support program for patients and caregivers.
      • Jones L.
      • Harrington J.
      • Barlow C.A.
      • et al.
      Advance care planning in advanced cancer: can it be achieved? An exploratory randomized patient preference trial of a care planning discussion.
      In addition, several studies reported proximal outcomes of interventions (e.g., preferences for care), rather than concrete evidence of behavior change (i.e., ACP engagement).
      • Brohard C.
      Initial efficacy testing of an autobiographical memory intervention on advance care planning for patients with terminal cancer.
      • Volandes A.E.
      • Levin T.
      • Slovin S.
      • et al.
      Augmenting advance care planning in poor prognosis cancer with a video decision aid a preintervention-postintervention study.
      • El-Jawahri A.
      • Podgurski L.M.
      • Eichler A.F.
      • et al.
      Use of video to facilitate end-of- life discussions with patients with cancer: a randomized controlled trial.
      In another instance, ACP was revisited over time, but resulting changes in ACP engagement were not reported.
      • Obel J.
      • Brockstein B.
      • Marschke M.
      • et al.
      Outpatient advance care planning for patients with metastatic cancer: a pilot quality improvement initiative.
      The studies in this review as well as others without an exclusive focus on cancer populations
      • Lum H.D.
      • Barnes D.E.
      • Katen M.T.
      • Shi Y.
      • Boscardin J.
      • Sudore R.L.
      Improving a full range of advance care planning behavior change and action domains: the PREPARE randomized trial.
      demonstrate the ability of ACP interventions to impact behavior change with respect to each of its three components, thus outcome evaluation should be targeted in this way. An organizing framework for the more comprehensive and standardized measurement of ACP outcomes has been described and should be considered in future ACP intervention studies.
      • Sudore R.L.
      • Heyland D.K.
      • Lum H.D.
      • et al.
      Outcomes that define successful advance care planning: a Delphi panel consensus.
      Despite these outcome measurement inconsistencies, all interventions, no matter their outcome, were composed of components that addressed multiple stages and processes of change. This suggests that the particular number or variety of the processes of change used may not impact the outcome. This may be due to the a posteriori categorization of intervention components or it may suggest that we do not yet understand behavior change in challenging areas like expressing and documenting preferences for EOL care. However, if the selection of ACP intervention components had been informed by the TTM at study outset, more clear distinctions might have been made between which combinations of the stages and processes of change resulted in better outcomes.
      Further examination of the components also suggested that it might be the quality rather than the particular components that had impact. For example, the majority of interventions that resulted in no behavior change lacked in-depth, in-person clinical interaction. Rather, they used videos, websites, patient portals, or mailed letters geared toward ACP education and exploration of preferences for EOL care.
      • Vogel R.I.
      • Petzel S.V.
      • Cragg J.
      • et al.
      Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial.
      • Epstein A.S.
      • Volandes A.E.
      • Chen L.Y.
      • et al.
      A randomized controlled trial of a cardiopulmonary resuscitation video in advance care planning for progressive pancreas and hepatobiliary cancer patients.
      • Peltier W.L.
      • Gani F.
      • Blissitt J.
      • et al.
      Initial experience with “Honoring Choices Wisconsin”: implementation of an advance care planning pilot in a tertiary care setting.
      • Kuntz G.
      • Tozer J.M.
      • Snegosky J.
      • Fox J.
      • Neumann K.
      Michigan oncology medical home demonstration project: first-year results.
      Although video-based ACP interventions have been shown to increase ACP knowledge and preferences for less aggressive therapies at the EOL, their influence on actual ACP engagement is still unclear.
      • Jain A.
      • Corriveau S.
      • Quinn K.
      • et al.
      Video decision aids to assist with advance care planning: a systematic review and meta-analysis.
      Furthermore, in another intervention that did not result in ACP behavior change, patients were intended to receive up to three one-to-one clinical interactions with the ACP facilitator; however, 73% of the participants completed only one discussion.
      • Jones L.
      • Harrington J.
      • Barlow C.A.
      • et al.
      Advance care planning in advanced cancer: can it be achieved? An exploratory randomized patient preference trial of a care planning discussion.
      Taken as a whole, ACP appears to need “high touch” solutions. As our health care system moves to greater use of technology, this may result in lower ACP engagement.
      By contrast, the majority of interventions that resulted in behavior change (i.e., ACP engagement) used either an interdisciplinary approach or a nonphysician ACP facilitator to deliver the intervention. Five of the interventions that resulted in ACP behavior change had ACP embedded in the palliative care model,
      • Schenker Y.
      • White D.
      • Rosenzweig M.
      • et al.
      Care management by oncology nurses to address palliative care needs: a pilot trial to assess feasibility, acceptability, and perceived effectiveness of the CONNECT intervention.
      • Bekelman D.B.
      • Johnson-Koenke R.
      • Bowles D.W.
      • Fischer S.M.
      Improving early palliative care with a scalable, stepped peer navigator and social work intervention: a single-arm clinical trial.
      • Ferrell B.
      • Sun V.
      • Hurria A.
      • et al.
      Interdisciplinary palliative care for patients with lung cancer.
      • Dyar S.
      • Lesperance M.
      • Shannon R.
      • Sloan J.
      • Colon-Otero G.
      A nurse practitioner directed intervention improves the quality of life of patients with metastatic cancer: results of a randomized pilot study.
      • Clayton J.M.
      • Butow P.N.
      • Tattersall M.H.
      • et al.
      Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care.
      with four that specifically used interdisciplinary members of the palliative care team to deliver intervention components,
      • Schenker Y.
      • White D.
      • Rosenzweig M.
      • et al.
      Care management by oncology nurses to address palliative care needs: a pilot trial to assess feasibility, acceptability, and perceived effectiveness of the CONNECT intervention.
      • Bekelman D.B.
      • Johnson-Koenke R.
      • Bowles D.W.
      • Fischer S.M.
      Improving early palliative care with a scalable, stepped peer navigator and social work intervention: a single-arm clinical trial.
      • Ferrell B.
      • Sun V.
      • Hurria A.
      • et al.
      Interdisciplinary palliative care for patients with lung cancer.
      • Clayton J.M.
      • Butow P.N.
      • Tattersall M.H.
      • et al.
      Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care.
      Similarly, other successful interventions outside of the palliative care context took an interdisciplinary approach by using a combination of physicians, nurses, and/or social workers
      • Obel J.
      • Brockstein B.
      • Marschke M.
      • et al.
      Outpatient advance care planning for patients with metastatic cancer: a pilot quality improvement initiative.
      • Pautex S.
      • Herrmann F.R.
      • Zulian G.B.
      Role of advance directives in palliative care units: a prospective study.
      to deliver the intervention. The sole use of a nonphysician facilitator was used in five ACP intervention studies, which included either a nurse-led
      • Walczak A.
      • Butow P.N.
      • Tattersall M.H.N.
      • et al.
      Encouraging early discussion of life expectancy and end-of-life care: a randomised controlled trial of a nurse-led communication support program for patients and caregivers.
      • Rabow M.W.
      • McGowan M.
      • Small R.
      • Keyssar R.
      • Rugo H.S.
      Advance care planning in community: an evaluation of a pilot 2-Session, nurse-led workshop.
      • Michael N.
      • O'Callaghan C.
      • Baird A.
      • et al.
      A mixed method feasibility study of a patient-and family-centered advance care planning intervention for cancer patients.
      or a social worker–led
      • Rodenbach R.A.
      • Brandes K.
      • Fiscella K.
      • et al.
      Promoting end-of-life discussions in advanced cancer: effects of patient coaching and question prompt lists.
      • Ma J.D.
      • Benn M.
      • Nelson S.H.
      • et al.
      Exploring the definition of an informed health care proxy.
      intervention. These approaches to ACP intervention delivery resemble the recommendations of a recent Delphi study, which endorse nonphysician facilitators as initiators of the ACP process and physician facilitators as guides in the ACP process by discussing prognosis and establishing realistic goals of care.
      • Rietjens J.A.C.
      • Sudore R.L.
      • Connolly M.
      • et al.
      Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care.
      But while engaging ACP is a shared endeavor among health care providers, it may be nurses and social workers who are particularly adept at inciting ACP behavior change among cancer patients, as cancer patients who named nurse practitioners or social workers among the list of people with which they had an EOL discussion have been documented as more likely to complete an advance directive than cancer patients who did not name those health care providers.
      • Moher D.
      • Liberati A.
      • Tetzlaff J.
      • Altman D.G.
      The PRISMA Group
      Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement.
      Half of the ACP interventions that resulted in behavior change also involved multiple (two to five) clinical interactions over time.
      • Schenker Y.
      • White D.
      • Rosenzweig M.
      • et al.
      Care management by oncology nurses to address palliative care needs: a pilot trial to assess feasibility, acceptability, and perceived effectiveness of the CONNECT intervention.
      • Walczak A.
      • Butow P.N.
      • Tattersall M.H.N.
      • et al.
      Encouraging early discussion of life expectancy and end-of-life care: a randomised controlled trial of a nurse-led communication support program for patients and caregivers.
      • Bekelman D.B.
      • Johnson-Koenke R.
      • Bowles D.W.
      • Fischer S.M.
      Improving early palliative care with a scalable, stepped peer navigator and social work intervention: a single-arm clinical trial.
      • Rabow M.W.
      • McGowan M.
      • Small R.
      • Keyssar R.
      • Rugo H.S.
      Advance care planning in community: an evaluation of a pilot 2-Session, nurse-led workshop.
      • Obel J.
      • Brockstein B.
      • Marschke M.
      • et al.
      Outpatient advance care planning for patients with metastatic cancer: a pilot quality improvement initiative.
      • Ferrell B.
      • Sun V.
      • Hurria A.
      • et al.
      Interdisciplinary palliative care for patients with lung cancer.
      • Dyar S.
      • Lesperance M.
      • Shannon R.
      • Sloan J.
      • Colon-Otero G.
      A nurse practitioner directed intervention improves the quality of life of patients with metastatic cancer: results of a randomized pilot study.
      These clinical interactions typically began with an assessment of patient needs, followed by patient education on ACP, progressed to an exploration of values and preferences for care, and often culminated in an end-of life discussion and/or active involvement in completing an AD; thus, ACP was comprehensively addressed by these interventions. Time frames of the implementation were specifically cited in five studies—2 weeks,
      • Rabow M.W.
      • McGowan M.
      • Small R.
      • Keyssar R.
      • Rugo H.S.
      Advance care planning in community: an evaluation of a pilot 2-Session, nurse-led workshop.
      3 weeks,
      • Walczak A.
      • Butow P.N.
      • Tattersall M.H.N.
      • et al.
      Encouraging early discussion of life expectancy and end-of-life care: a randomised controlled trial of a nurse-led communication support program for patients and caregivers.
      1 month,
      • Dyar S.
      • Lesperance M.
      • Shannon R.
      • Sloan J.
      • Colon-Otero G.
      A nurse practitioner directed intervention improves the quality of life of patients with metastatic cancer: results of a randomized pilot study.
      and 3 months
      • Schenker Y.
      • White D.
      • Rosenzweig M.
      • et al.
      Care management by oncology nurses to address palliative care needs: a pilot trial to assess feasibility, acceptability, and perceived effectiveness of the CONNECT intervention.
      • Bekelman D.B.
      • Johnson-Koenke R.
      • Bowles D.W.
      • Fischer S.M.
      Improving early palliative care with a scalable, stepped peer navigator and social work intervention: a single-arm clinical trial.
      —and were unspecified in the other interventions. This stepped approach reflects that of the recommended approaches to ACP, where ACP occurs as a process evolving over time.
      • Detering K.
      • Silveira M.J.
      Advance care planning and advance directives.
      National Comprehensive Cancer Network
      NCCN clinical practice guidelines in oncology: palliative care.
      National Consensus Project for Quality Palliative Care
      Clinical practice guidelines for quality palliative care.
      Similarly, person-to-person interaction combined with guided advance directive completion has been previously identified as a defining attribute of effective ACP interventions designed for varied populations (e.g., HIV patients, participants from faith communities).
      • Jezewski M.A.
      • Meeker M.A.
      • Sessanna L.
      • Finnell D.S.
      The effectiveness of interventions to increase advance directive completion rates.
      These findings suggest that the involvement of a group of health care providers in an ongoing ACP process will result in a greater number of cancer patients making their EOL preferences known.

      Limitations

      Limitations of this systematic review must be considered. This review was limited to ACP interventions designed for an exclusively cancer patient sample. The need for ACP is not unique to cancer, and future reviews could explore ACP intervention design aspects when more diverse samples of patients are included. Categorizing the intervention components was a potentially subjective exercise. We addressed this by developing a theory-informed categorization guide. In addition, categorization was conducted independently by three nurse researchers with expertise in oncology or EOL care; therefore, nuanced discussions could be conducted to drive consensus in the categorization. In addition, as this review included intervention studies with varied designs, direct comparisons of effectiveness among the interventions could not be made. Inconsistencies in outcome reporting also made it difficult to have a more comprehensive understanding of the impact of the ACP interventions on engaging ACP as a whole, that is, engaging all three of its components. Despite these challenges, this analysis points a potential way forward for the science, but more importantly for clinical practice.

      Conclusions

      This systematic review was the first, to our knowledge, to use the TTM as a common lens to categorize ACP intervention components, identify gaps, and evaluate outcomes. We have suggested ways to improve future ACP interventions. First, stage-matched interventions that actively engage both the patient and their caregiver will avoid a one-size-fits-all approach to ACP intervention design and may lead to greater ACP engagement. Second, ACP interventions need to include longitudinal, process-oriented components. Third, we identified the need to further explore which processes of change have the greatest impact on ACP behaviors. Finally, careful, consistent conceptualizations of ACP across studies, comprehensive reporting of all ACP intervention components, and documenting changes in ACP outcomes over time given clinical or intervention factors are needed. ACP interventions that holistically address and document the ACP process, are stage-matched, incorporate diverse mechanisms (i.e., process of change) to engage ACP, use an interdisciplinary group of health care providers to deliver intervention components, and capture ongoing ACP engagement across the illness trajectory offer meaningful ways forward in ACP intervention design for cancer patients and their caregivers.

      Disclosures and Acknowledgments

      Mrs. Levoy was funded, in part, by a Future of Nursing Scholars Award from the Robert Wood Johnson Foundation and a Doctoral Degree Scholarship in Cancer Nursing, 131753-DSCN-18-072-01-SCN, from the American Cancer Society during the conduct of this study. Dr. Salani has nothing to disclose. Dr. Buck has nothing to disclose.

      Appendix A. Search Strategy

      Search Strategy Description

      During the original search in February 2017, ACP-related terms were combined with the cancer related terms in the PubMed, CINAHL Plus, MEDLINE (EBSCO), Cochrane Library and Web of Science databases. For example, in the PubMed database, MeSH terms were used for the following search terms: advance care planning, advanced directives, cancer, neoplasm, oncology and malignancy. Additionally, key word searches in “all fields” were conducted for the search terms: advance care planning, advance directive, cancer, neoplasm, oncology, tumor, and malignancy. All ACP-related search terms were separated from the cancer-related search terms parenthetically. Within the two parenthetical phrases, search terms were combined using the “OR” Boolean operator. Between parenthetical phrases, the “AND” Boolean operator was used. The time limitation of January 1, 1990 to March 31, 2017 was then applied and the search conducted. The same search strategy was applied across the remainder of the databases.
      The first updated search was conducted in June 2017 in two stages. First all the original search terms used in the initial search were entered into each database as before, with the exception of the time limiter, which was amended to March 1, 2017 to December 31, 2017. At the time of the updated search, inspection of the MeSH terms “advance care planning” and “advance directives” in the PubMed database revealed the concept of a living will was included in these MeSH terms, but the concept of the health care surrogate was not. To ensure no articles were missed due to healthcare surrogate-related terminology another step of the updated search was added. This search included the terms of “healthcare surrogate” or “health care surrogate” or “healthcare proxy” or “health care proxy” or “healthcare agent” or “health care agent” or “health proxy” or “power of attorney” combined with the original cancer-related search terms and the time limitation of January 1, 1990 to December 31, 2017.
      The second updated search was conducted in September 2018. All of the search terms from the original search as well as those added in first updated search were entered into each database as before, with the exception of the time limiter, which was amended to June 1, 2017 to December 31, 2018. The detailed searches according to each stage of the search are listed below.

      Initial Search – February 2017

      PubMed

      (("advance care planning"[MeSH Terms] OR ("advance"[All Fields] AND "care"[All Fields] AND "planning"[All Fields]) OR "advance care planning"[All Fields]) OR ("advance directives"[MeSH Terms] OR ("advance"[All Fields] AND "directives"[All Fields]) OR "advance directives"[All Fields] OR ("advance"[All Fields] AND "directive"[All Fields]) OR "advance directive"[All Fields]) OR (advance[All Fields] AND care[All Fields] AND directive[All Fields])) AND (("neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "cancer"[All Fields]) OR ("neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "neoplasm"[All Fields]) OR ("neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "oncology"[All Fields]) OR ("tumour"[All Fields] OR "neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "tumor"[All Fields]) OR ("neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "malignancy"[All Fields])) AND ("1990/01/01"[PDAT] : "2017/03/31"[PDAT])

      Medline (EBSCO)

      (advance care planning or advance directive or advance care directive) AND (cancer or neoplasms or oncology or tumour or malignancy); Limiters - Scholarly (Peer Reviewed) Journals; Publication Year: 1990-2017; Search modes - Boolean/Phrase

      CINAHL Plus

      (advance care planning or advance directive or advance care directive) AND (cancer or neoplasms or oncology or tumour or malignancy); Limiters - Scholarly (Peer Reviewed) Journals; Publication Year: 1990-2017; Search modes - Boolean/Phrase

      Cochrane Library

      MeSH descriptor: Advance Care Planning

      Web of Science

      Query: TOPIC: ("advance care planning" OR "advance* directive*" OR "advance care directive") AND TOPIC: (cancer OR neoplasm OR malignancy OR tumor OR oncology); Indexes=SCI-EXPANDED, SSCI, A&HCI, CPCI-S, CPCI-SSH, ESCI; Timespan=1990-2017

      Updated Search – June 2017

      Stage 1

      PubMed

      (("advance care planning"[MeSH Terms] OR ("advance"[All Fields] AND "care"[All Fields] AND "planning"[All Fields]) OR "advance care planning"[All Fields]) OR ("advance directives"[MeSH Terms] OR ("advance"[All Fields] AND "directives"[All Fields]) OR "advance directives"[All Fields] OR ("advance"[All Fields] AND "directive"[All Fields]) OR "advance directive"[All Fields]) OR (advance[All Fields] AND care[All Fields] AND directive[All Fields])) AND (("neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "cancer"[All Fields]) OR ("neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "neoplasm"[All Fields]) OR ("neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "oncology"[All Fields]) OR ("tumour"[All Fields] OR "neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "tumor"[All Fields]) OR ("neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "malignancy"[All Fields])) AND ("2017/03/01"[PDAT] : "2017/12/31"[PDAT])

      Medline (EBSCO)

      (advance care planning or advance directive or advance care directive ) AND ( cancer or neoplasms or oncology or tumor or malignancy ); Limiters - English Language; Published Date: 20170101-20171231; Search modes - Boolean/Phrase

      CINAHL Plus

      (advance care planning or advance directive or advance care directive ) AND (cancer or neoplasms or oncology or tumour or malignancy); Limiters - Published Date: 20170301- 20171231; Search modes – Boolean/Phrase

      Cochrane Library

      MeSH descriptor: Advance Care Planning

      Web of Science

      Query: TOPIC: ("advance care planning" OR "advance* directive*" OR "advance care directive") AND TOPIC:(cancer OR neoplasm OR malignancy OR tumor OR oncology); Indexes=SCI-EXPANDED, SSCI, A&HCI, CPCI-S, CPCI-SSH, ESCI; Timespan=2017

      Stage 2

      PubMed

      ("healthcare surrogate"[All Fields] OR "health care surrogate"[All Fields] OR "health care proxy"[All Fields] OR "healthcare proxy"[All Fields] OR "health proxy"[All Fields] OR "health care agent"[All Fields] OR "healthcare agent"[All Fields] OR "power of attorney"[All Fields]) AND (("neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "cancer"[All Fields]) OR ("neoplasms"[MeSH Terms] OR "neoplasms"[All Fields]) OR ("neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "oncology"[All Fields]) OR ("tumour"[All Fields] OR "neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "tumor"[All Fields]) OR ("neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "malignancy"[All Fields])) AND ("1990/01/01"[PDAT] : "2017/12/31"[PDAT])

      Medline (EBSCO)

      ("healthcare surrogate" OR "health care surrogate" OR "health care proxy" OR "healthcare proxy" OR "health proxy" OR "health care agent" OR "healthcare agent" OR "power of attorney" ) AND ( cancer or neoplasms or oncology or tumor or malignancy ); Limiters - Published Date: 19900101-20171231; Search modes - Boolean/Phrase

      CINAHL Plus

      ("healthcare surrogate" OR "health care surrogate" OR "health care proxy" OR "healthcare proxy" OR "health proxy" OR "health care agent" OR "healthcare agent" OR "power of attorney" ) AND ( cancer or neoplasms or oncology or tumor or malignancy ); Limiters - English Language; Published Date: 19900101-20171231; Search modes - Boolean/Phrase

      Web of Science

      Query: TOPIC: ("healthcare surrogate" OR "health care surrogate" OR "health care proxy" OR "healthcare proxy" OR "health proxy" OR "health care agent" OR "healthcare agent" OR "power of attorney") AND TOPIC:(cancer OR neoplasm OR malignancy OR tumor OR oncology); Indexes=SCI-EXPANDED, SSCI, A&HCI, CPCI-S, CPCI-SSH, ESCI; Timespan=1990-2017

      Updated Search – September 2018

      PubMed

      ("advance care planning"[All Fields] OR "advance directive"[All Fields] OR "advance care directive"[All Fields] OR "healthcare surrogate"[All Fields] OR "health care surrogate"[All Fields] OR "health care proxy"[All Fields] OR "healthcare proxy"[All Fields] OR "health proxy"[All Fields] OR "healthcare agent"[All Fields] OR "health care agent"[All Fields] OR "power of attorney"[All Fields]) AND (("neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "cancer"[All Fields]) OR ("neoplasms"[MeSH Terms] OR "neoplasms"[All Fields]) OR ("neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "oncology"[All Fields]) OR ("tumour"[All Fields] OR "neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "tumor"[All Fields]) OR ("neoplasms"[MeSH Terms] OR "neoplasms"[All Fields] OR "malignancy"[All Fields])) AND ("2017/06/01"[PDAT] : "2018/12/31"[PDAT])

      MEDLINE (EBSCO)

      ("advance care planning" or "advance directive" or "advance care directive" or "healthcare surrogate" or "health care surrogate" or "health care proxy" or "healthcare proxy" or "health proxy" or "healthcare agent" or "health care agent" or "power of attorney") AND (cancer or neoplasms or oncology or tumor or malignancy) Limiters - Published Date: 20170601-20181231 Narrow by Language: - English Search modes - Boolean/Phrase

      CINAHL Plus

      ("advance care planning" or "advance directive" or "advance care directive" or "healthcare surrogate" or "health care surrogate" or "health care proxy" or "healthcare proxy" or "health proxy" or "healthcare agent" or "health care agent" or "power of attorney") AND (cancer or neoplasms or oncology or tumor or malignancy) - Published Date: 20170601-20181231 - Boolean/Phrase

      Web of Science

      Query: TOPIC: (("advance care planning" or "advance directive" or "advance care directive" or "healthcare surrogate" or "health care surrogate" or "health care proxy" or "healthcare proxy" or "health proxy" or "healthcare agent" or "health care agent" or "power of attorney") AND ( cancer or neoplasms or oncology or tumor or malignancy )) Indexes=SCI-EXPANDED, SSCI, A&HCI, CPCI-S, CPCI-SSH, ESCI; Timespan=2017-2018

      Cochrane Library

      “Advance Care Planning” in Title Abstract Keyword Search; Limiters - with Cochrane Library publication date between Jun 2017 and Dec 2018 (Word variations have been searched)
      Supplemental Table 1Definitions of the Stages and Processes of Change According to the TTM
      Process of ChangeDefinitionGeneral TTM Intervention Component ExamplesACP-Specific TTM Intervention Component Examples
      Precontemplation—no intended action in the next six months
      Prochaska & Velicer (1997).
      → no thought about ACP; not ready for ACP
      Fried et al. (2010).
      Consciousness-raising“… involves increased awareness of about the causes, consequences, and cures for a particular problem behavior.” (Prochaska & Velicer, 1997, p. 39)Feedback, education, confrontation, interpretation, bibliotherapy
      Prochaska & Velicer (1997).
      Increased awareness of ACP
      Fried et al. (2012).


      Receiving and contemplating information related to ACP
      Fried et al. (2012).


      Talking to health care providers regarding life-sustaining treatment
      Fried et al. (2012).
      Dramatic relief“… produces increased emotional experiences followed by reduced affect …” (Prochaska & Velicer, 1997, p. 40)Role playing, grieving, personal testimonies
      Prochaska & Velicer (1997).
      Learning of ACP behaviors of others (i.e. story-telling by health care providers or loved ones)
      Environmental reevaluation“combines both affective and cognitive assessments of how the presence or absence of a personal habit affects one's social environment such as the effect of smoking on others.” (Prochaska & Velicer, 1997, p. 40)Empathy training, family intervention
      Prochaska & Velicer (1997).
      Consideration of the impact of ACP on loved ones
      Contemplation—intended change in the next 6 months
      Prochaska & Velicer (1997).
      →thought of engaging in ACP in the next 6 months
      Fried et al. (2010).
      Self-reevaluation (in addition to the previous processes of consciousness raising, dramatic relief and, environmental reevaluation)“… combines both cognitive and affective assessments of one's self-image with and without a particular unhealthy habit …” (Prochaska & Velicer, 1997, p. 40)Values clarification, healthy role models, imagery
      Prochaska & Velicer (1997).
      Reflecting on what it means to participate in ACP
      Fried et al. (2012).


      Consideration of religious beliefs and their relationship to ACP
      Fried et al. (2012).


      Evaluation of personal beliefs about the medical condition and their relationship to ACP
      Fried et al. (2012).


      Consideration of the impact of ACP on loved ones
      Fried et al. (2012).


      Discussing desires for life sustaining treatment and quantity vs. quality of life with loved ones
      Fried et al. (2012).


      Reflecting on need for and susceptibility to ACP
      Fried, Bullock, Iannone, & O'Leary(2009).


      Reflecting on the positive consequences of ACP
      Fried, Bullock, Iannone, & O'Leary(2009).


      Reflecting on the experiences of others with ACP
      Fried, Bullock, Iannone, & O'Leary(2009).
      Preparation—intended action in the next month
      Prochaska & Velicer (1997).
      → thought of engaging in or planning to complete ACP documents in the next month
      Fried et al. (2010).
      Self-liberation“… both the belief that one can change and the commitment and recommitment ot act on that belief.” (Prochaska & Velicer, 1997, p. 40)Provide action choices (three choices recommended)
      Prochaska & Velicer (1997).
      Personal commitment to participate in ACP
      Fried et al. (2012).
      Action—behavior change made within the last six months
      Prochaska & Velicer (1997).
      → engaged in ACP in the last six months
      Fried et al. (2010).
      Contingency management“… provides consequences for taking step in a particular direction.” (Prochaska & Velicer, 1997, p. 40)Reinforcement through positive self-statements or group recognition
      Prochaska & Velicer (1997).
      If only partial participation in ACP, reinforcement to complete other aspects of ACP
      Helping relationships“… combine caring, trust, openness, and acceptance as well as support for the health behavior change.” (Prochaska & Velicer, 1997, p. 40)Rapport building, therapeutic alliance, counselor calls, buddy systems
      Prochaska & Velicer (1997).
      Receiving support from others to participate in ACP
      Fried et al. (2012).


      Discussing desires for life-sustaining treatment with loved ones
      Fried et al. (2012).
      Counterconditioning“… requires the learning of healthier behaviors that can substitute for problem behaviors.” (Prochaska & Velicer, 1997, p. 40)Relaxation can counter stress and assertion can counter peer pressure
      Prochaska & Velicer (1997).
      Stimulus control“… removes cues for unhealthy habits and adds prompts for healthier alternatives.” (Prochaska & Velicer, 1997, p. 40)Avoidance of unhealthy behavior, environmental reengineering, self-help
      Prochaska & Velicer (1997).
      Review of ACP documents to confirm its contents
      Fried et al. (2012).


      Personal knowledge of the location of ACP documents
      Fried et al. (2012).


      Providing copies of ACP documents to loved ones
      Fried et al. (2012).
      Maintenance—prevention of relapse in nonbehavior
      Prochaska & Velicer (1997).
      → engaged in ACP more than six months ago
      Fried et al. (2010).
      (same processes used in the action stage)If only partial participation in ACP, reinforcement to complete other aspects of ACP

      Updating of ACP documents to reflect changed desires secondary to a change in medical condition

      Revisiting end-of-life discussions with health care provider or loved ones secondary to a change in medical condition
      TTM = transtheoretical model of health behavior change; ACP = advance care planning.
      a Prochaska & Velicer (1997).
      b Fried et al. (2010).
      c Fried et al. (2012).
      d Fried, Bullock, Iannone, & O'Leary(2009).
      Supplemental Table 2Risk of Bias Analysis
      Authors/Publication YearRandom Sequence GenerationAllocation ConcealmentBaseline Characteristics SimilarBaseline Outcome SimilarConfounding UnlikelyAppropriate AnalysisIntervention Independent of Other ChangesIntervention IntegrityBlinding of Participants and PersonnelBlinding of Outcome AssessmentIncomplete Outcome DataSelective Reporting
      Clayton et al. (2007)???
      Pautex et al. (2008)
      El-Jawahri et al. (2010)
      Jones et al. (2011)??
      Dyar et al. (2012)?????
      Volandes et al. (2012)
      Epstein et al. (2013)?
      Vogel et al. (2013)?
      Kuntz et al. (2014)????
      Obel et al. (2014)??
      Trarieux-Signol et al. (2014)
      Yeh et al. (2014)?
      Ferrell et al. (2015)
      Green et al. (2015)?
      Michael et al. (2015)
      Schenker et al. (2015)??
      Ma et al. (2016)?????
      Brohard (2017)?
      Peltier et al. (2017)??
      Rodenbach et al. (2017)??
      Walczak et al. (2017)??
      Xing et al. (2017)?
      Bekelman et al. (2018)?
      Epstein et al. (2018)???
      Rabow et al. (2018)??
      ✓ = Low risk of bias; ✗ = High risk of bias; ? = Unclear risk of bias.

      References

        • Committee on Approaching Death
        Dying in America: Improving quality and honoring individual preferences near the end of life.
        (Institute of Medicine) The National Academies Press, Washington, D.C.2015
        • United States Department of Health and Human Services
        Assistant Secretary for Planning and Evaluation, Office of Disability Aging and Long-Term Care Policy. Advance directives and advance care planning: Report to congress.
        2008 (Available from)
        • Detering K.
        • Silveira M.J.
        Advance care planning and advance directives.
        2018 (Available from)
        • National Comprehensive Cancer Network
        NCCN clinical practice guidelines in oncology: palliative care.
        (Available from)
        • National Consensus Project for Quality Palliative Care
        Clinical practice guidelines for quality palliative care.
        3rd ed. National Consensus Project for Quality Palliative Care, Pittsburgh, PA2013
        • Bires J.L.
        • Franklin E.F.
        • Nichols H.M.
        • Cagle J.G.
        Advance care planning communication: oncology patients and providers voice their perspectives.
        J Canc Educ. 2018; 33: 1140-1147
        • Brinkman-Stoppelenburg A.
        • Rietjens J.A.C.
        • van der Heide A.
        The effects of advance care planning on end-of-life care: a systematic review.
        Palliat Med. 2014; 28: 1000-1025
        • Eckhert E.E.
        • Schoenbeck K.L.
        • Galligan D.
        • et al.
        Advance care planning and end-of-life care for patients with hematologic malignancies who die after hematopoietic cell transplant.
        Bone Marrow Transplant. 2017; 52: 929-931
        • Narang A.
        • Wright A.A.
        • Nicholas L.H.
        Trends in advance care planning in patients with cancer results from a national longitudinal survey.
        JAMA Oncol. 2015; 1: 601-608
        • Ganti A.
        • Lee S.J.
        • Vose J.M.
        • et al.
        Outcomes after hematopoietic stem cell transplantation for hematologic malignancies in patients with or without advanced care planning.
        J Clin Oncol. 2007; 25: 5643-5648
        • Wright A.A.
        • Zhang B.
        • Ray A.
        • et al.
        Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment.
        JAMA. 2008; 300: 1665-1673
        • Scherrens A.
        • Beernaert K.
        • Robijn L.
        • et al.
        The use of behavioural theories in end-of-life care research: a systematic review.
        Palliat Med. 2018; 32: 1055-1077
        • Prochaska J.O.
        • Velicer W.F.
        The transtheoretical model of health behavior change.
        Am J Health Promot. 1997; 12: 38-48
        • Pearlman R.A.
        • Cole W.G.
        • Patrick D.L.
        • Starks H.E.
        • Cain K.C.
        Advance care planning: eliciting patient preferences for life-sustaining treatment.
        Patient Educ Couns. 1995; 26: 353-361
        • Sudore R.L.
        • Schickedanz A.D.
        • Landefeld C.S.
        • et al.
        Engagement in multiple steps of the advance care planning process: a descriptive study of diverse older adults.
        J Am Geriatr Soc. 2008; 56: 1006-1013
        • Westley C.
        • Briggs L.A.
        Using the Stages of Change Model to improve communication about advance care planning.
        Nurs Forum. 2004; 39: 5-12
        • Fried T.R.
        • Bullock K.
        • Iannone L.
        • O'Leary J.R.
        Understanding advance care planning as a process of health behavior change.
        J Am Geriatr Soc. 2009; 57: 1547-1555
        • Fried T.R.
        • Redding C.A.
        • Robbins M.L.
        • et al.
        Stages of change for the component behaviors of advance care planning.
        J Am Geriatr Soc. 2010; 58: 2329-2336
        • Ernecoff N.C.
        • Keane C.R.
        • Albert S.M.
        Health behavior change in advance care planning: an agent-based model.
        BMC Public Health. 2016; 16https://doi.org/10.1186/s12889-016-2872-9
        • Fried T.R.
        • Redding C.A.
        • Robbins M.L.
        • et al.
        Promoting advance care planning as health behavior change: development of scales to assess decisional balance, medical and religious beliefs, and processes of change.
        Patient Educ Couns. 2012; 86: 25-32
        • Johnson S.
        • Butow P.
        • Kerridge I.
        • Tattersall M.
        Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers.
        Psycho-Oncology. 2016; 25: 362-386
        • Zwakman M.
        • Jabbarian L.
        • van Delden J.
        • et al.
        Advance care planning: a systematic review about experiences of patients with a life-threatening or life-limiting illness.
        Palliat Med. 2018; 32: 1305-1321
        • Parker S.M.
        • Clayton J.M.
        • Hancock K.
        • et al.
        A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information.
        J Pain Symptom Manage. 2007; 34: 81-93
        • Jezewski M.A.
        • Meeker M.A.
        • Sessanna L.
        • Finnell D.S.
        The effectiveness of interventions to increase advance directive completion rates.
        J Aging Health. 2007; 19: 519-536
        • Walczak A.
        • Butow P.N.
        • Bu S.
        • Clayton J.M.
        A systematic review of evidence for end-of-life communication interventions: who do they target, how are they structured and do they work?.
        Patient Educ Couns. 2016; 99: 3-16
        • Myers J.
        • Cosby R.
        • Gzik D.
        • et al.
        Provider tools for advance care planning and goals of care discussions: a systematic review.
        Am J Hosp Palliat Med. 2018; 35: 1123-1132
        • Aziz N.M.
        • Miller J.L.
        • Curtis J.R.
        Palliative and end-of-life care research: embracing new opportunities.
        Nurs Outlook. 2012; 60: 384-390
        • Houben C.H.M.
        • Spruit M.A.
        • Groenen M.T.J.
        • Wouters E.F.M.
        • Janssen D.J.A.
        Efficacy of advance care planning: a systematic review and meta-analysis.
        J Am Med Dir Assoc. 2014; 15: 477-489
        • Arditi C.
        • Burnand B.
        • Peytremann-Bridevaux I.
        Adding non-randomised studies to a Cochrane review brings complementary information for healthcare stakeholders: an augmented systematic review and meta-analysis.
        BMC Health Serv Res. 2016; 16https://doi.org/10.1186/s12913-016-1816-5
        • Pawson R.
        • Greenhalgh T.
        • Gill H.
        • Walshe K.
        Realist review - a new method of systematic review designed for complex policy interventions.
        J Health Serv Res Policy. 2005; 10: S21-S34
        • Green M.J.
        • Schubart J.R.
        • Whitehead M.M.
        • et al.
        Advance care planning does not adversely affect hope or anxiety among patients with advanced cancer.
        J Pain Symptom Manage. 2015; 49: 1088-1096
        • Schenker Y.
        • White D.
        • Rosenzweig M.
        • et al.
        Care management by oncology nurses to address palliative care needs: a pilot trial to assess feasibility, acceptability, and perceived effectiveness of the CONNECT intervention.
        J Palliat Med. 2015; 18: 232-240
        • Vogel R.I.
        • Petzel S.V.
        • Cragg J.
        • et al.
        Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial.
        Gynecol Oncol. 2013; 131: 430-436
        • Walczak A.
        • Butow P.N.
        • Tattersall M.H.N.
        • et al.
        Encouraging early discussion of life expectancy and end-of-life care: a randomised controlled trial of a nurse-led communication support program for patients and caregivers.
        Int J Nurs Stud. 2017; 67: 31-40
        • Brohard C.
        Initial efficacy testing of an autobiographical memory intervention on advance care planning for patients with terminal cancer.
        Oncol Nurs Forum. 2017; 44: 751
        • Bekelman D.B.
        • Johnson-Koenke R.
        • Bowles D.W.
        • Fischer S.M.
        Improving early palliative care with a scalable, stepped peer navigator and social work intervention: a single-arm clinical trial.
        J Palliat Med. 2017; 21
        • Epstein A.S.
        • O'Reilly E.M.
        • Shuk E.
        • et al.
        A randomized trial of acceptability and effects of values-based advance care planning in outpatient oncology: person-centered oncologic care and choices.
        J Pain Symptom Manage. 2018; 56: 169-177.e1
        • Rodenbach R.A.
        • Brandes K.
        • Fiscella K.
        • et al.
        Promoting end-of-life discussions in advanced cancer: effects of patient coaching and question prompt lists.
        J Clin Oncol. 2017; 35: 842
        • Epstein A.S.
        • Volandes A.E.
        • Chen L.Y.
        • et al.
        A randomized controlled trial of a cardiopulmonary resuscitation video in advance care planning for progressive pancreas and hepatobiliary cancer patients.
        J Palliat Med. 2013; 16: 623-631
        • Jones L.
        • Harrington J.
        • Barlow C.A.
        • et al.
        Advance care planning in advanced cancer: can it be achieved? An exploratory randomized patient preference trial of a care planning discussion.
        Pall Supp Care. 2011; 9: 3-13
        • Volandes A.E.
        • Levin T.
        • Slovin S.
        • et al.
        Augmenting advance care planning in poor prognosis cancer with a video decision aid a preintervention-postintervention study.
        Cancer. 2012; 118: 4331-4338
        • Xing Y.F.
        • Lin J.X.
        • Li X.
        • et al.
        Advance directives: cancer patients' preferences and family-based decision making.
        Oncotarget. 2017; 8: 45391-45398
        • Rabow M.W.
        • McGowan M.
        • Small R.
        • Keyssar R.
        • Rugo H.S.
        Advance care planning in community: an evaluation of a pilot 2-Session, nurse-led workshop.
        Am J Hosp Palliat Med. 2018; https://doi.org/10.1177/1049909118797612
        • Obel J.
        • Brockstein B.
        • Marschke M.
        • et al.
        Outpatient advance care planning for patients with metastatic cancer: a pilot quality improvement initiative.
        J Palliat Med. 2014; 17: 1231-1237
        • El-Jawahri A.
        • Podgurski L.M.
        • Eichler A.F.
        • et al.
        Use of video to facilitate end-of- life discussions with patients with cancer: a randomized controlled trial.
        J Clin Oncol. 2010; 28: 305-310
        • Ma J.D.
        • Benn M.
        • Nelson S.H.
        • et al.
        Exploring the definition of an informed health care proxy.
        J Palliat Med. 2016; 19: 250-251
        • Pautex S.
        • Herrmann F.R.
        • Zulian G.B.
        Role of advance directives in palliative care units: a prospective study.
        Palliat Med. 2008; 22: 835-841
        • Yeh J.C.
        • Cheng M.J.
        • Chung C.H.
        • Smith T.J.
        Using a question prompt list as a communication aid in advanced cancer care.
        J Oncol Pract. 2014; 10: e137-e141
        • Trarieux-Signol S.
        • Moreau S.
        • Gourin M.
        • et al.
        Factors associated with the designation of a health care proxy and writing advance directives for patients suffering from haematological malignancies.
        BMC Palliat Care. 2014; 13: 57
        • Michael N.
        • O'Callaghan C.
        • Baird A.
        • et al.
        A mixed method feasibility study of a patient-and family-centered advance care planning intervention for cancer patients.
        BMC Palliat Care. 2015; 14
        • Ferrell B.
        • Sun V.
        • Hurria A.
        • et al.
        Interdisciplinary palliative care for patients with lung cancer.
        J Pain Symptom Manage. 2015; 50: 758-767
        • Dyar S.
        • Lesperance M.
        • Shannon R.
        • Sloan J.
        • Colon-Otero G.
        A nurse practitioner directed intervention improves the quality of life of patients with metastatic cancer: results of a randomized pilot study.
        J Palliat Med. 2012; 15: 890-895
        • Peltier W.L.
        • Gani F.
        • Blissitt J.
        • et al.
        Initial experience with “Honoring Choices Wisconsin”: implementation of an advance care planning pilot in a tertiary care setting.
        J Palliat Med. 2017; 20: 998-1003
        • Kuntz G.
        • Tozer J.M.
        • Snegosky J.
        • Fox J.
        • Neumann K.
        Michigan oncology medical home demonstration project: first-year results.
        J Oncol Pract. 2014; 10: 294-297
        • Clayton J.M.
        • Butow P.N.
        • Tattersall M.H.
        • et al.
        Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care.
        J Clin Oncol. 2007; 25: 715-723
        • Jezewski M.A.
        • Finnell D.S.
        • Wu Y.B.
        • et al.
        Psychometric testing of four transtheoretical model questionnaires for the behavior, completing health care proxies.
        Res Nurs Health. 2009; 32: 606-620
        • Sudore R.L.
        • Knight S.J.
        • Mcmahan R.D.
        • et al.
        A novel website to prepare diverse older adults for decision making and advance care planning: a pilot study.
        J Pain Symptom Manage. 2014; 47: 674-686
        • Medvene L.J.
        • Base M.
        • Patrick R.
        • Wescott J.
        Advance directives: assessing stage of change and decisional balance in a community-based educational program.
        J Appl Soc Psychol. 2007; 37: 2298-2318
        • Barakat A.
        • Barnes S.A.
        • Casanova M.A.
        • et al.
        Baylor Univ Med Proc. 2013; 26: 368-372
        • Ugalde A.
        • O’Callaghan C.
        • Byard C.
        • et al.
        Does implementation matter if comprehension is lacking? A qualitative investigation into perceptions of advance care planning in people with cancer.
        Support Care Cancer. 2018; 26: 3765-3771
        • Cottingham A.H.
        • Beck-Coon K.
        • Bernat J.K.
        • et al.
        Addressing personal barriers to advance care planning: qualitative investigation of a mindfulness-based intervention for adults with cancer and their family caregivers.
        Palliat Support Care. 2018; 1
        • Conner N.E.
        • Chase S.K.
        Decisions and caregiving: end of life among blacks from the perspective of informal caregivers and decision makers.
        Am J Hosp Palliat Care. 2015; 32: 454
        • Phi K.
        • Jarden M.
        Bereaved caregivers to patients with high-grade glioma: a qualitative explorative study.
        J Neurosci Nurs. 2018; 50: 94
        • Silveira M.
        • Kim S.
        • Langa K.
        Advance directives and outcomes of surrogate decision making before death.
        N Engl J Med. 2010; 362: 1211-1218
        • Kolva E.
        • Rosenfeld B.
        • Brescia R.
        • Comfort C.
        Assessing decision-making capacity at end of life.
        Gen Hosp Psychiatry. 2014; 36: 392-397
        • Lum H.D.
        • Barnes D.E.
        • Katen M.T.
        • Shi Y.
        • Boscardin J.
        • Sudore R.L.
        Improving a full range of advance care planning behavior change and action domains: the PREPARE randomized trial.
        J Pain Symptom Manage. 2018; 56: 575-581.e7
        • Sudore R.L.
        • Heyland D.K.
        • Lum H.D.
        • et al.
        Outcomes that define successful advance care planning: a Delphi panel consensus.
        J Pain Symptom Manage. 2018; 55: 245-255.e8
        • Jain A.
        • Corriveau S.
        • Quinn K.
        • et al.
        Video decision aids to assist with advance care planning: a systematic review and meta-analysis.
        BMJ Open. 2015; 5https://doi.org/10.1136/bmjopen-2014-007491
        • Rietjens J.A.C.
        • Sudore R.L.
        • Connolly M.
        • et al.
        Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care.
        Lancet Oncol. 2017; 18: e543-e551
        • Moher D.
        • Liberati A.
        • Tetzlaff J.
        • Altman D.G.
        • The PRISMA Group
        Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement.
        Plos Med. 2009; 6: e1000097