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JAMDA xxx (2014) 1e13

JAMDA
journal homepage: www.jamda.com

Review

Efficacy of Advance Care Planning: A Systematic Review and


Meta-Analysis
Carmen H.M. Houben MSc a, *, Martijn A. Spruit PhD a, Miriam T.J. Groenen MSc a,
Emiel F.M. Wouters PhD, MD a, b, Daisy J.A. Janssen PhD, MD a, c
a
Program Development Center, Center of Expertise for Chronic Organ Failure (CIROþ), Horn, The Netherlands
b
Respiratory Medicine, Maastricht UMCþ, Maastricht, The Netherlands
c
Center of Expertise for Palliative Care, Maastricht UMCþ, Maastricht, The Netherlands

a b s t r a c t

Keywords: Objective: To systematically review the efficacy of advance care planning (ACP) interventions in different
Advance care planning adult patient populations.
end-of-life care Design: Systematic review and meta-analyses.
communication
Data Sources: Medline/PubMed, Cochrane Central Register of Controlled Trials (1966 to September 2013),
advance directives
and reference lists.
Study Selection: Randomized controlled trials that describe original data on the efficacy of ACP in-
terventions in adult populations and were written in English.
Data Extraction and Synthesis: Fifty-five studies were identified. Study details were recorded using a
predefined data abstraction form. Methodological quality was assessed using the PEDro scale by 2 in-
dependent reviewers. Meta-analytic techniques were conducted using a random effects model. Analyses
were stratified for type of intervention: ‘advance directives’ and ‘communication.’
Main Outcomes and Measures: Primary outcome measures were completion of advance directives and
occurrence of end-of-life discussions. Secondary outcomes were concordance between preferences for
care and delivered care, knowledge of ACP, end-of-life care preferences, quality of communication,
satisfaction with healthcare, decisional conflict, use of healthcare services, and symptoms.
Results: Interventions focusing on advance directives as well as interventions that also included commu-
nication about end-of-life care increased the completion of advance directives and the occurrence of end-
of-life care discussions between patients and healthcare professionals. In addition, interventions that also
included communication about ACP, improved concordance between preferences for care and delivered
care and may improve other outcomes, such as quality of communication.
Conclusions: ACP interventions increase the completion of advance directives, occurrence of discussions
about ACP, concordance between preferences for care and delivered care, and are likely to improve other
outcomes for patients and their loved ones in different adult populations. Future studies are necessary to
reveal the effective elements of ACP and should focus on the best way to implement structured ACP in
standard care.
Ó 2014 - American Medical Directors Association, Inc. All rights reserved.

Advance care planning (ACP) is the process whereby patients, in healthcare, to prepare for future medical treatment decisions.1 In the
consultation with healthcare professionals, family members, and previous decades, ACP was often seen as synonymous with the
other loved ones, make individual decisions about their future completion of advance directives. More recently, ACP is seen as an
ongoing process and includes discussions about goals of care, resus-
citation and life support, palliative care options, surrogate decision
The authors have no conflicts of interest relating to this article. This project was
supported by Grant 3.4.12.022 of Lung Foundation Netherlands, Leusden, The
making, and advance directives.2
Netherlands. No funding source had any role in the design or conduct of the study; Patients usually want to talk about end-of-life care and are able to
collection, management, analysis and interpretation of the data; or preparation, discuss their preferences regarding life-sustaining treatments.
review, or approval of the manuscript. Discussions about ACP, however, do not occur as frequently as
* Address correspondence to Carmen H.M. Houben, MSc, Program Development
they should.3 Physicians and patients report different barriers to
Center, Centre of Expertise for Chronic Organ Failure (CIROþ), Hornerheide 1, 6085
NM Horn, The Netherlands. communication about end-of-life care. Physicians’ barriers include
E-mail address: carmenhouben@ciro-horn.nl (C.H.M. Houben). lack of time and communication skills, discomfort with emotions
1525-8610/$ - see front matter Ó 2014 - American Medical Directors Association, Inc. All rights reserved.
http://dx.doi.org/10.1016/j.jamda.2014.01.008
2 C.H.M. Houben et al. / JAMDA xxx (2014) 1e13

from the patient, and concerns about the potential to erode hope. outcome parameters, instruments, response rate, relevant findings,
Patients are not aware of the relevance of ACP and have the conclusion, and limitations were recorded.
assumption that the physician will initiate ACP discussions when they The methodological quality was assessed using the Physiotherapy
are needed. 2 Because of the lack of ACP, decisions about life- Evidence-Based Database (PEDro) Scale.10 The PEDro scale is based
sustaining treatments are often crisis-oriented, may not be in largely on the Delphi List and expert consensus. It consists of 11
concordance with patient’s preferences for end-of-life care, and may items: 1 item to score the external validity and 10 items to score the
cause distress in loved ones.4 internal validity and statistics. Items scored a ‘yes’ if the criterion was
The last 2 decades, multiple studies were published about in- clearly satisfied. The ‘yes’ from criteria 2e11 were summed to
terventions to improve ACP. Initially, these studies were limited to calculate the PEDro score.10 Previously, trials with a PEDro score of 6
oncology patients, but because of the aging population and increased points were classified as “high-quality trials,” whereas trials with a
prevalence of chronic diseases, current research also focusses on in- PEDro score <6 points were classified as “low-quality trials.”11 The
terventions to improve ACP in other patient populations with life- methodological quality of the included trials was scored indepen-
limiting diseases.5 Interventions investigated in early ACP studies, dently by 2 reviewers (C. H. and D.J.). Agreement between the 2 re-
which were mostly limited to the completion of advance directives6,7 viewers was 0.89 [95% confidence interval (CI), 0.86e0.93; P < .0001]
did not improve end-of-life care. A recent study suggests that dis- based on the actual PEDro score of each study. Disagreements were
cussions about ACP can be effective in changing outcomes for patients solved by consensus. If no consensus could be achieved, a third
and their loved ones.8 reviewer (M.S.) was consulted. This was the case for only three
The purpose of the present systematic review is to study the ef- PEDro-items (0.5%).
ficacy of ACP interventions in different adult patient populations. The
primary outcome measures are completion of advance directives and
Data Synthesis and Analysis
occurrence of end-of-life discussions. Secondary outcomes are
concordance between preferences for care and delivered care,
Interventions were classified into 2 categories: (1) advance di-
knowledge of ACP, end-of-life care preferences, quality of communi-
rectives: interventions that were limited to the completion of advance
cation, satisfaction with healthcare, decisional conflict, use of
directives (durable powers of attorney for healthcare, living wills, and
healthcare services, and symptoms. A priori, we hypothesized that
signing limitations of care “code status” forms); and (2) communica-
ACP interventions increase completion of advance directives as well
tion: interventions in which one of the components was focused on
as occurrence of end-of-life discussions. In addition, we hypothesized
communication about ACP, in addition to advance directives. A c2 test
that ACP interventions can improve other outcomes, such as quality
was used to explore the relationship between the kind of intervention
of communication about end-of-life care, and concordance between
and years of publication (1992e1998 vs 1999e2005, 1999e2005 vs
preferences for end-of-life care and delivered care.
2006e2012, and 1992e1998 vs 2006e2012). IBM SPSS statistics 21.0
was used for this analysis. Meta-analytic techniques were conducted
Methods using a random effects model in RevMan 5. Completion of advance
directives, occurrence of discussions about end-of-life care prefer-
Data Sources and Searches ences between patient and healthcare professional, and concordance
between preferences for end-of-life care and delivered end-of-life care
A computerized literature search was performed in the databases were analyzed as dichotomous outcomes. Pooled odds ratios (OR)
Medline/PubMed and Cochrane Central Register of Controlled Trials with 95% CIs were calculated using a random effects model. If a study
from 1966 through September 2013. The following key words were included more than 1 intervention group, both intervention groups
used: ACP; advance directives; end-of-life communication; life- were included in the analysis. Subgroup of interest was type of
sustaining treatment preferences; end-of-life decision making; and intervention (advance directives vs communication). The use of meta-
living will. The key words were combined using ‘or.’ In addition, analytic techniques for data-analysis was not possible for other
reference lists of selected articles were searched by hand to identify outcome measures such as knowledge of ACP, end-of-life care pref-
relevant articles that may have been missed by the initial search erences, quality of communication, satisfaction with healthcare,
strategy. decisional conflict, use of healthcare services, and symptoms because
of variability in definition and measurement. The statistical signifi-
Study Selection cance level was set at P  .05 for all analysis.

Articles had to meet the following criteria to be selected for the


review: (1) describe original data; (2) randomized controlled trial; Results
and (3) written in English. Articles about patients younger than 21
years were excluded. In addition, studies about psychiatric advance In total, 26,628 articles were found in the electronic searches.
directives were excluded because these directives were focused on Fifty-six studies were identified (Table 1). These studies included
treatment decisions involving mental health instead of physical patients with different diseases and were published between 1992
health.9 Titles and abstracts were independently screened against and 2012 (Figure 1). Fifteen studies (26.8%) recruited participants
inclusion criteria by 2 reviewers (C.H. and M.S.). Disagreements were from an inpatient setting; 37 studies (66.1%) from an outpatient
solved by consensus. setting; and 4 studies (7.1%) from both settings.

Data Extraction and Quality Assessment Quality Assessment

A predesigned data abstraction form was used to obtain data on Median PEDro score was 5 points (range 2e8 points; Table 2).
study design and relevant results. For each study, first author, journal, Thirty-one trials (55.4%) scored <6 points on the PEDro scale and
year of publication, aim, study design, setting, eligibility criteria, were classified as “low-quality trials.” The most prevalent methodo-
sample size, patient characteristics (sex, age, disease), intervention logical shortcomings were failure to blind patients (n ¼ 55, 98.2%),
(description, frequency, delivered by), control group, measurements, therapists (n ¼ 55, 98.2%), and/or outcome assessors (n ¼ 44, 78.6%);
Table 1
Study Characteristics

Subjects Intervention Outcome Parameters PEDro


score
Anderson, 1994 Life-threatening illness California DPAHC vs usual care Health status; psychological well-being 5
I: n ¼ 104; C: n ¼ 100
Au, 2012 COPD Patient-specific feedback form for patients and clinicians vs Quality of EoL communication; occurrence of discussions 7
I: n ¼ 194; C: n ¼ 182 usual care
Baker, 2000 Family members of deceased hospitalized adults SUPPORT intervention vs usual care Patient clinical status; life-sustaining treatment; 2
Total: n ¼ 767 circumstance death
Barrio-Cantalejo, 2009 Nursing consulting offices Andalusian advance directive form intervention vs Patient preferences; proxy predictions; accuracy 7
I1: n ¼ 59; I2: n ¼ 48; C: n ¼ 64 discussions intervention vs control group
Briggs, 2004 CHF, CRF and cardiovascular surgery PC-ACP interview vs usual care Congruence treatment decisions patient-surrogate; 2
I: n ¼ 13; C: n ¼ 14 decisional conflict; knowledge of ACP; quality of EoL
communication
Clayton, 2007 Advanced cancer Question prompt list vs usual care Total number of patient questions during the consultation; 8
I: n ¼ 92; C: n ¼ 82 total numbers of items discussed; patient and caregiver
concerns; achievement of patient information
preferences; patient satisfaction; patient anxiety;
physician satisfaction with communication; consultation
duration
Detering, 2010 Patients aged 80 admitted to internal medicine, Respecting patient choices vs usual care Concordance between preferences for care and delivered 7

C.H.M. Houben et al. / JAMDA xxx (2014) 1e13


respiratory medicine or cardiology units care; patient satisfaction; impact of a patient’s death on
I: n ¼ 154; C: n ¼ 155 relatives; family member’s satisfaction with the quality of
a patient’s death
Dexter, 1998 Patients aged 75 or 50 with serious underlying disease Physician reminders for instruction directives vs physician Discussions about AD; completed AD forms 8
I1: n ¼ 219; I2: n ¼ 260; I3: n ¼ 277; C: n ¼ 253 reminders for proxy directives vs physician reminders for
both directives vs no reminders
Ditto, 2001 Outpatients aged 65 and their surrogate decision makers Healthcare directive with discussion vs healthcare directive Accuracy of substituted judgment; perceived benefits of AD 5
I1: n ¼ 81; I2: n ¼ 82; I3: n ¼ 80; I4: n ¼ 83; C: n ¼ 82 without discussion vs valued life activities directive with completion
discussion vs valued life activities without discussion vs
no AD
El-Jawahri, 2010 Malignant glioma Video group vs verbal group Preferences EoL care; uncertainty regarding decision 6
I: n ¼ 23; C: n ¼ 27 making
Engelhardt, 2006 Patients from 3 Department of Veterans Affairs medical Advanced illness coordinated care Program vs usual care Effectiveness patient/provider communication; Satisfaction 6
centers, a home care organization, and 2 managed care with healthcare; Willingness to participate in treatment
organizations planning; Surrogates’ experiences with the healthcare
I: n ¼ 133; C: n ¼ 142 system; costs of providing intervention; documentation
of AD
Gade, 2008 Life-limiting illnesses Interdisciplinary palliative care Service vs usual care Symptom control; emotional and spiritual support; patient 6
I: n ¼ 280; C: n ¼ 237 satisfaction; health services costs; survival; completion of
AD; hospice utilization
Green, 2011 Second-year medical students Decision aid group vs standard group Student knowledge; student skill; student satisfaction; 6
I: n ¼ 60; C: n ¼ 61 patient evaluation of the student’s performance; patient
satisfaction with the ACP method
Greenberg, 1993 Third-year medical students High intervention vs low intervention vs no intervention Knowledge DPAHC; skill and comfort DPAHC 5
I1: n ¼ 50; I2: n ¼ 48; C: n ¼ 43
Griffith, 1995 Kentuckians aged 18 Educational paragraph vs no intervention Basic knowledge of Alzheimer’s disease and CPR; CPR 2
Total: n ¼ 661 preference
Grimaldo, 2001 Patients aged 65 scheduled for elective surgery Information session vs usual care Discussions about EoL care; completion of AD 6
I: n ¼ 100; C: n ¼ 100
Gutheil, 2005 Dyads of older people and their healthcare agents Start talking early and plan program vs usual care Dyad communication; attitudes toward EoL planning; 4
I: n ¼ 27 dyads; C: n ¼ 22 dyads comfort with discussing ACP; knowledge about the
healthcare agents’ roles and responsibilities; knowledge
about the health
Hanson, 2005 Nursing home residents Quality improvement intervention vs usual care Residents receiving hospice/palliative services; pain 2
I: n ¼ 345; C: n ¼ 113 assessment; pain treatment; documented ACP discussions

(continued on next page)

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4
Table 1 (continued )

Subjects Intervention Outcome Parameters PEDro


score
Heffner, 2001 Patients cardiovascular rehabilitation Educational intervention vs usual care Patient-physician discussions EoL issues; understanding 4
I: n ¼ 99; C: n ¼ 185 EoL by physicians; completion AD; acceptance
educational program
Heiman, 2004 Aged 70 or 50 with a chronic illness. Physician reminder and patient mailing vs physician Completion of an AD 6
I1: n ¼ 457; I2: n ¼ 504; C: n ¼ 446 reminder vs usual care
Jacobsen, 2011 Hospitalized patients Cognitive model ACP vs usual care Full code patients without a discussion; full code patients 5
I: n ¼ 517; C: n ¼ 382 with a discussion; patients with a discussion and an order
for limitation of life-sustaining treatment
Jones, 2011 Progressive cancer ACP intervention vs usual care Discussions of EoL planning; satisfaction with 5
I: n ¼ 21; C: n ¼ 20 communication; satisfaction with healthcare; anxiety and
depression
Kirchhoff, 2010* CHF or CRF and surrogate decision makers PC-ACP interview vs usual care Knowledge ACP; treatment preferences; quality EoL 7
I: n ¼ 160 dyads; C: n ¼ 153 dyads communication
Kirchhoff, 2012* CHF or CRF and surrogate decision makers PC-ACP interview vs usual care Treatment preferences; concordance of patient preferences 7
I: n ¼ 160; C: n ¼ 153 and EoL care
Landry, 1997 Outpatients of a primary care internal medicine clinic Seminar and informational pamphlet vs informational Completion AD; discussions of AD; acceptability of the 3
I: n ¼ 95; C: n ¼ 92 pamphlet intervention
Lautrette, 2007 Family members deceased ICU patients Proactive end-of-life conference and a brochure vs usual Post-traumatic stress disorder; anxiety and depression 6
I: n ¼ 63; C: n ¼ 63 care

C.H.M. Houben et al. / JAMDA xxx (2014) 1e13


Marbella, 1998 Life-threatening disease Explanation of prognosis and treatments vs usual care Patient preferences; surrogate’s perception of those 5
I: n ¼ 368; C: n ¼ 331 preferences
Molloy, 2000 Nursing home residents The Let Me Decide advance directive program vs usual care Satisfaction with healthcare; healthcare utilization 3
I: n ¼ 636; C: n ¼ 656
Morrison, 2005 Newly admitted long term care residents Social worker intervention vs usual care Documentation of AD and do-not-resuscitate orders; 5
I: n ¼ 43; C: n ¼ 96 preferences for care; concordance of treatments received
with documented preferences
Murray, 2010 Healthcare providers cancer patients Tutorial, skill-building workshop and educational outreach Change in the quality of decision support; knowledge; 7
I: n ¼ 36; C: n ¼ 42 vs usual care duration of interaction; intention to engage in patient
decision support; acceptability of intervention
components
Nicolasora, 2006 Hospitalized patients Scripted intervention vs usual care Patients who welcomed the scripted intervention; patients 4
I: n ¼ 136; C: n ¼ 161 who chose to receive or reject CPR/MV; completed AD
Total: n ¼ 297
Patterson, 1997 Elders with a chronic illness Let Me Decide AD vs usual care Satisfaction with healthcare 4
I: n ¼ 114; C: n ¼ 49
Pearlman, 2005 Aged 55 with a chronic health condition Educational and motivational intervention vs educational Occurrence of discussions; preferences for life-sustaining 4
I: n ¼ 119; C: n ¼ 129 intervention treatments; quality of life; health status; depression;
engaging in ACP activities; completion of AD; proxies
understanding of patient’s treatment preferences and
values
Perry, 2005 CRF Peer mentoring vs printed material vs usual care Psychosocial measures; subjective well-being; Death 5
I1: n ¼ 63; I2: n ¼ 59; C: n ¼ 81 acceptance
Reilly, 1995 Patients recently discharged from the acute care medical Educational brochure and encouragement to execute Patients with completed AD; physicians with completed 7
service of a community hospital durable healthcare proxies vs usual care healthcare proxy forms for themselves
I: n ¼ 83; C: n ¼ 79
Richter, 1995 Internal medicine outpatients Structured discussions, information, and mailed reminders Completion of AD; participant satisfaction; delayed effects 3
I: n ¼ 87; C: n ¼ 89 vs information of discussion; discrepancies in patients’ completion of
forms
Rubin, 1994 Aged 65 and discharged from hospital Educational pamphlet and DPAHC vs usual care Completion DPAHC 4
I: n ¼ 552; C: n ¼ 549
Sachs, 1992 Non-demented patients aged 65 Educational intervention about advance directives vs usual Completion of AD; reasons for not executing AD 5
I: n ¼ 48; C: n ¼ 83 care
Sampson, 2011 Severe dementia Palliative care and ACP intervention vs usual care Number of carers making ACP; distress; health status; 3
I: n ¼ 22; C: n ¼ 10 decisional conflict; decisional satisfaction; angry feelings;
life satisfaction; satisfaction EoL care; pain and distress
patient
Schneidermann, 1992 Life-threatening illness California DPAHC vs usual care Cognition; patient satisfaction; psychological well-being; 3
I: n ¼ 104; C: n ¼ 100 health locus of control; sense of coherence; health-related
quality of life; medical treatments; medical treatment
charges
Schwartz, 2002 Ambulatory geriatric patients Respecting Choices interview vs nondirective interview Knowledge; treatment preferences; response shifts; pain, 7
I: n ¼ 31; C: n ¼ 30 anxiety, and alertness ; understanding of the wishes of the
patient; level of comfort with the responsibility of making
healthcare decisions
Siegert, 1996 Nursing home residents AD video vs health-related video Comprehension of living will and CPR; resuscitation 6
I: n ¼ 16; C: n ¼ 20 preferences
Singer, 1995 CRF AD in random order Treatment preferences; acceptability of AD; Choice of AD 4
I: n ¼ 95; C: not applicable
Singer, 1997 HIV HIV living will vs center for bioethics living will vs both AD Acceptability of the AD 6
I1: n ¼ 52; I2: n ¼ 50; I3: n ¼ 101;
Smucker, 1993 Ambulatory patients aged 65 years and older Discussion of AD vs discussion of health promotion Positive and negative affect; life-support attitudes 2
I: n ¼ 85; C: n ¼ 15
Song, 2005 Dyads of patients undergoing cardiac surgery and their PC-ACP structured interview vs usual care Patient-surrogate congruence; anxiety; knowledge of ACP; 5
surrogates decisional conflict
I: n ¼ 16; C: n ¼ 16
Song, 2009 CRF Sharing Patients’ Illness Representations to Increase Trust Patient-surrogate congruence; decisional conflict; 6
I: n ¼ 29; C: n ¼ 29 intervention vs usual care decisional satisfaction; psychosocial spiritual well-being
Song, 2010 CRF PC-ACP structured interview vs usual care Patient-surrogate congruence; decisional conflict; 8
I: n ¼ 11; C: n ¼ 8 decisional satisfaction; psychospiritual well-being

C.H.M. Houben et al. / JAMDA xxx (2014) 1e13


Sulmasy, 1996 Medical residents and patients Resident education vs patient education vs usual care Completion of AD; occurrence of ACP; attitudes toward 6
I1: n ¼ 86; I2: n ¼ 63; C: n ¼ 101 advance directive discussions
SUPPORT, 1995 Life-threatening diagnoses SUPPORT intervention vs usual care Incidence and timing of do-not-resuscitate orders; patient- 4
I: n ¼ 2652; C: n ¼ 2152 physician agreement; days in an ICU, comatose, or
receiving MV before death; pain; hospital resource use
Szmuilowicz, 2010 Second-year internal medicine residents Communication skills training vs no intervention Communication competence; responding to emotions; self- 6
I: n ¼ 21; C: n ¼ 28 assessed confidence; participant satisfaction
Teno, 1997 Seriously ill patients SUPPORT intervention vs usual care Awareness, completion, and impact of; AD discussions 4
I: n ¼ 2652; C: n ¼ 2152 about treatment preferences ; use or forgoing of
resuscitation at the time of death
Volandes, 2009a (JAMDA) Community-dwelling elderly subjects (65 years) Video decision support tool and verbal narrative vs verbal Knowledge of advanced dementia; preferences for goals of 7
I: n ¼ 8; C: n ¼ 6 narrative care; comfort using the video decision-support tool
Volandes, 2009b (BMJ) Older people aged 65 living in the community Video decision support tool and verbal narrative vs verbal Goal of care; preferences for care; health literacy; comfort 6
I: n ¼ 94; C: n ¼ 106 narrative using the video decision-support tool
Walker, 1999 HIV Physician chart reminders vs no reminders Completion of AD; occurrence of discussions 4
I: n ¼ 39; C: n ¼ 35
Yamada, 1999 Veterans aged 70 Two hand-outs about AD and CPR and a videotape vs one Attitudes and actions toward AD, CPR, and life-sustaining 3
I: n ¼ 62; C: n ¼ 55 hand-out about advance directives treatments

ACP, advance care planning; AD, advance directives; C, control; CHF, chronic heart failure; CPR, cardiopulmonary resuscitation; CRF, chronic renal failure; DPAHC, durable power of attorney for healthcare; EoL, end-of-life; I,
intervention; ICU, intensive care unit; MV, mechanical ventilation; PC-ACP, patient-centred advance care planning; SUPPORT, Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.
*Same study sample.

5
6 C.H.M. Houben et al. / JAMDA xxx (2014) 1e13

Fig. 1. Screening and selection process of trials. ACP, advance care planning; COPD, chronic obstructive pulmonary disease; CRF, chronic renal failure; RCT, randomized controlled
trial.

no treatments as allocated or intention to treat (n ¼ 35, 62.5%); and comparable in the trials focusing on advance directives (OR 3.31; 95%
no concealed allocation (n ¼ 33, 58.9%) (Table 2). CI 1.69e6.50) and those also including communication (OR 2.76; 95%
CI 1.41e5.37) (P ¼ .71) (Figure 3A).
Intervention Characteristics
Occurrence of End-of-Life Care Discussions
In 26 trials, the intervention was classified as focusing on advance
directives,7,12e36 and in 30 trials as also including Communication in Eleven trials reported as an outcome the occurrence of discussions
addition to advance directives.8,37e65 A significant association was about end-of-life care preferences between patients and healthcare
found between the type of intervention and the period in which the professionals (advance directives: n ¼ 314,20,36; communication: n ¼
study was conducted (P < .001). In the periods 1999e2005 and 838,41,47e50,58,65). Five trials were excluded from meta-analysis because
2006e2012, there were significantly more publications in the cate- no between-group comparisons were reported,65 data for control
gory communication in comparison with the publications in group or baseline were not available,36,47,58 or the occurrence of dis-
1992e1998, P ¼ .012 and P < .005, respectively (Figure 2). cussions was measured as a continuous instead of a dichotomous
variable.50 In 1 trial, 3 intervention groups and 1 control group were
used.14 In meta-analyses, all intervention groups were compared with
Completion of Advance Directives
the same control group, resulting in 2 extra comparisons.
Meta-analyses showed an increased likelihood for the occurrence of
Completion of advance directives was reported as an outcome in
discussions about end-of-life preferences between patients and
18 trials (advance directives: n ¼ 914,19,20,23,25e27,32,36; communica-
healthcare professionals following an intervention compared with
tion: n ¼ 937,43,45,48,55,57e59,65). Three trials were excluded from meta-
control groups (OR 2.82; 95% CI 2.09e3.79; P < .00001). The increased
analysis because absolute changes in completion of advance
likelihood for the occurrence of discussions was comparable in the
directives were not available,37,55,65 and 1 was excluded because only
subgroups advance directives (OR 3.41; 95% CI 1.94e5.98) and
the intervention group was offered the opportunity to complete an
communication (OR 2.48; 95% CI 1.78e3.44) (P ¼ .34) (Figure 3B).
advance directive.59 Of the remaining 13 trials, 4 trials included 2 or
more intervention groups in addition to the control group.14,19,23,32 In
meta-analysis, each of these intervention groups was compared with Other Outcomes
the control group, resulting in five extra comparisons. Results showed
an increased likelihood for the completion of advance directives Concordance between preferences for care and delivered care
compared to usual care (OR 3.26; 95% CI 2.00e5.32; P < .00001). The Concordance between patient’s preferences for end-of-life care
increased likelihood for completion of advance directives was and the end-of-life care received was reported as an outcome in three
C.H.M. Houben et al. / JAMDA xxx (2014) 1e13 7

Table 2
Methodological Quality (PEDro Scale Score)

Study 1 2 3 4 5 6 7 8 9 10 11 Quality
Eligibility Random Concealed Similarity Blinding Blinding Blinding Outcome _85% Treatment Between- Group Point Measures (PEDro
Criteria Allocation Allocation at Baseline Patients Therapists Assessors Patients as Allocated Comparisons and Measures Score)
or Intention of Variability
to Treat
Anderson, 1994 Yes Yes No No No No No Yes Yes Yes Yes 5
Au, 2012 Yes Yes Yes Yes No No Yes No Yes Yes Yes 7
Baker, 2000 Yes Yes No No No No No No No Yes No 2
Barrio-Cantalejo, Yes Yes Yes Yes No No No Yes Yes Yes Yes 7
2009
Briggs, 2004 Yes No No No No No No Yes No Yes No 2
Clayton, 2007 Yes Yes Yes Yes No No Yes Yes Yes Yes Yes 8
Detering, 2010 Yes Yes Yes Yes No No Yes No Yes Yes Yes 7
Dexter, 1998 Yes Yes Yes Yes Yes No Yes No Yes Yes Yes 8
Ditto, 2001 Yes Yes No Yes No No No Yes No Yes Yes 5
El-Jawahri, 2010 Yes Yes Yes No No No No Yes Yes Yes Yes 6
Engelhardt, 2006 Yes Yes Yes Yes No No No No Yes Yes Yes 6
Gade, 2008 Yes Yes Yes Yes No No No Yes No Yes Yes 6
Green, 2011 Yes Yes Yes Yes No No No Yes No Yes Yes 6
Greenberg, 1993 Yes Yes No Yes No No No Yes No Yes Yes 5
Griffith III, 1995 Yes Yes No No No No No No No No No 1
Grimaldo, 2001 Yes Yes Yes Yes No No No Yes No Yes Yes 6
Gutheil, 2005 Yes Yes No Yes No No No No No Yes Yes 4
Hanson, 2005 Yes No No No No No No No Yes Yes No 2
Heffner, 2001 Yes Yes Yes No No No No No No Yes Yes 4
Heiman, 2004 Yes Yes Yes No No Yes No No Yes Yes Yes 6
Jacobsen, 2011 Yes No No Yes No No No Yes Yes Yes Yes 5
Jones, 2011 Yes No No No No No Yes Yes Yes Yes Yes 5
Kirchhoff, 2010 Yes Yes Yes Yes No No No Yes Yes Yes Yes 7
Kirchhoff, 2012 Yes Yes Yes Yes No No Yes Yes No Yes Yes 7
Landry, 1997 Yes Yes No Yes No No No No No Yes No 3
Lautrette, 2007 Yes Yes Yes Yes No No No Yes No Yes Yes 6
Marbella, 1998 Yes Yes No Yes No No No Yes No Yes Yes 5
Molloy, 2000 Yes Yes No No No No No No No Yes Yes 3
Morrison, 2005 Yes No No Yes No No No Yes Yes Yes Yes 5
Murray, 2010 Yes Yes Yes Yes No No Yes Yes No Yes Yes 7
Nicolasora, 2006 Yes Yes No Yes No No No No No Yes Yes 4
Patterson, 1997 Yes Yes No No No No No No No Yes Yes 3
Pearlman, 2005 Yes Yes No Yes No No No Yes No Yes No 4
Perry, 2005 Yes Yes No Yes No No No Yes No Yes Yes 5
Reilly, 1995 Yes Yes No Yes No No Yes Yes Yes Yes Yes 7
Richter, 1995 Yes No No Yes No No No No No Yes Yes 3
Rubin, 1994 Yes Yes No Yes No No No Yes No Yes No 4
Sachs, 1992 Yes Yes No Yes No No No Yes No Yes Yes 5
Sampson, 2011 Yes Yes Yes No No No No No No No Yes 3
Schneidermann, Yes Yes Yes No No No No No No No Yes 3
1992
Schwartz, 2002 Yes Yes Yes Yes No No No Yes Yes Yes Yes 7
Siegert, 1996 Yes Yes No Yes No No Yes Yes No Yes Yes 6
Singer, 1995 Yes Yes No Yes No No No No No Yes Yes 4
Singer, 1997 Yes Yes No Yes No No No Yes Yes Yes Yes 6
Smucker, 1993 Yes Yes No No No No No No No Yes No 2
Song, 2005 Yes Yes No Yes No No No Yes No Yes Yes 5
Song, 2009 Yes Yes Yes Yes No No No Yes No Yes Yes 6
Song, 2010 Yes Yes Yes Yes No No Yes Yes Yes Yes Yes 8
Sulmasy, 1996 Yes No No Yes No No No No No Yes Yes 6
SUPPORT, 1995 Yes No No No No No Yes Yes No Yes Yes 4
Szmuilowicz, 2010 Yes Yes No Yes No No Yes Yes No Yes Yes 6
Teno, 1997 Yes Yes No Yes No No No No No Yes Yes 4
Volandes, 2009 Yes Yes Yes Yes No No No Yes Yes Yes Yes 7
Volandes, 2009 Yes Yes Yes No No No No Yes Yes Yes Yes 6
Walker, 1999 Yes No No Yes No No No Yes No Yes Yes 4
Yamada, 1999 No No No No No No No Yes Yes Yes No 3
Studies satisfying 55 (98) 46 (84) 23 (42) 39 (70) 1 (2) 1 (2) 12 (22) 35 (63) 21 (38) 53 (95) 47 (84)
criterion, n (%)

PEDro, physiotherapy evidence-based database.

Knowledge of ACP
trials.8,52,55 All these trials included communication in their inter-
Nine trials explored whether interventions can be used to improve
vention. Patients in the intervention groups had an increased likeli-
knowledge of ACP. Five trials reported significant results in favor of
hood of receiving end-of-life care in concordance with their
the intervention.46,51,56,60 Four trials found no effect of interventions
preferences compared with control groups (OR 4.66; 95% CI
on knowledge of ACP.18,28,40,62
1.20e18.08; P ¼ .03; Figure 3C).
8 C.H.M. Houben et al. / JAMDA xxx (2014) 1e13

Use of healthcare services


Five trials explored how interventions influenced the use of
healthcare services.7,21,37,43,47 In 3 trials, interventions increased
hospice utilization and decreased hospitalizations and healthcare
costs.21,43,47 Two trials showed no effect of ACP on use of hospital
resources.7,37

Symptoms
Symptoms of anxiety and depression, psychological well-being,
health status or pain were reported as an outcome in 15
trials.7,12,22,28,31,37,41,43,50,58e63 Unfortunately, meta-analysis was not
possible due to variability in definition and measurement of the
symptoms. None of these trials found a significant change in these
outcomes following intervention.

Discussion

Key Findings

This review systematically evaluated the efficacy of ACP in-


terventions in different adult populations. Interventions focusing on
advance directives as well as interventions that also included
communication about ACP increased the completion of advance di-
rectives and the occurrence of end-of-life care discussions between
patients and healthcare professionals. Moreover, interventions that
Fig. 2. Proportion of studies within year categories about interventions limited to the
also included communication about ACP in addition to advance di-
completion of advance directives or interventions also including communication.
rectives, also improved concordance between patient’s preferences
End-of-life care preferences for end-of-life care and received end-of-life care. Finally, in-
End-of-life care preferences were reported as an outcome in 9 terventions are likely to improve quality of communication while the
trials. In 6 trials, patients were more likely to prefer comfort care and impact on knowledge of ACP, end-of-life care preferences, satisfaction
to avoid life-sustaining treatments following the intervention with healthcare, decisional conflict, and use of healthcare services
compared with the control groups.16,18,33,34,51,60 The other trials found remains unknown. Interventions are likely to have no effect on
no effect of interventions on end-of-life care preferences.28,52,58 symptoms, like symptoms of anxiety and depression, psychological
well-being, health status, and pain.
Quality of communication
Only 2 trials explored how interventions can improve the quality Impact of ACP on Advance Directives and ACP Discussions
of communication between patients and healthcare professional.38,56
Both trials reported significant results in favor of the intervention. Meta-analysis showed that ACP can be effective in changing
completion of advance directives and occurrence of end-of-life
Satisfaction with healthcare discussions.
Satisfaction with healthcare was reported as an outcome in 7 First, patients in intervention groups completed an advance
trials. Two trials reported that patients in the intervention group directive more often in comparison with control groups. Previous
were more satisfied with healthcare.42,43 The other trials found no studies have indicated that patients who completed an advance
effect of interventions on satisfaction with healthcare.7,21,22,39,50 Three directive received care that was more often in concordance with their
trials asked the family of deceased patients about their satisfaction preferences66 and were less likely to die in a hospital.67 In addition,
with the end-of-life care of their loved one.8,39,42 These trials reported completion of advance directives was associated with less caregiver
that family members in the intervention groups were more likely burden in loved ones.68
than those of the control groups to be satisfied with end-of-life care. In contrast, other studies have criticized the value of advance di-
In addition, family members of patients in intervention groups had rectives. The authors concluded that healthcare professionals differ in
significantly more discussions about end-of-life care compared with the interpretation of advance directives69 and often made treatment
family members of patients in control groups in all 3 studies.31,45,50 decisions discordant with the treatment preferences stated in
advance directives.70 These studies were based on hypothetical cases
Decisional conflict and, therefore, not comparable with treatment decisions made in
Decisional conflict, defined as patient’s level of difficulty in mak- daily care. However, previously documented advance directives may
ing choices61 was measured with the 13-item or 16-item Decisional not always reflect the patient’s current preference. Indeed, prefer-
Conflict Scale in 6 trials.16,40,59,61e63 In 1 trial,59 the questionnaire was ences for life-sustaining treatments and end-of-life care are likely to
administered by loved ones and, therefore, not comparable with the change. Therefore, regular evaluation of documented advance di-
other trials, in which the patients completed the Decisional Conflict rectives is advisable.71,72
Scale. In 3 trials, patients were asked to complete a decisional conflict Second, patients in intervention groups had a discussion more often
scale after the intervention.16,40,62 These trials reported that patients about end-of-life preferences with a healthcare professional in com-
in the intervention group were more certain of their end of life parison with control groups. Timing of ACP discussions is important.
decision-making than patients in the control group. However, the Previous authors recommended a discussion of end-of-life preferences
other 2 trials, in which patients completed the Decisional Conflict during regular outpatient clinical visits when patients are stable and
Scale before and after the intervention, found no change over time in not acutely ill.14 Studies included in our meta-analysis were all con-
decisional conflict.61,63 ducted in an outpatient setting during scheduled visits. All these
C.H.M. Houben et al. / JAMDA xxx (2014) 1e13 9

Fig. 3. (A) Effect of interventions on completion of advance directives. (1) Instruction directive reminder vs control; (2) Proxy directive reminder vs control; (3) Instruction directive
and proxy directive reminders vs control; (4) Physician reminder vs control; (5) Physician reminder and patient mailing vs control; (6) Peer intervention vs control; (7) Printed
materials vs control; (8) Resident education group vs control; (9) Patient education group vs control. (B) Effect of interventions on occurrence of discussions about end-of-life
preferences. (1) Instruction directive reminder vs control; (2) Proxy directive reminder vs control; (3) Instruction directive and proxy directive reminders vs control. (C) Effect
of interventions on concordance between patient’s preferences for end-of-life care and the end-of-life care received. CI, confidence interval; M-H, Mantel-Haenszel.

studies showed positive results and, therefore, confirm the benefits of improve end-of-life care for patients. Indeed, Sudore et al73 stated
ACP interventions during scheduled visits. However, the efficacy of ACP that the aim of ACP should be to prepare patients and their loved ones
interventions in a controlled setting may not be translated into the to participate with professional caregivers in making the best possible
effectiveness of these interventions in a real world setting. in-the-moment decisions.
Interventions are likely to improve quality of communication,
Other Outcomes while the impact on knowledge of ACP, end-of-life care preferences,
satisfaction with healthcare, decisional conflict, and use of healthcare
Patients in intervention groups received end-of-life care that was services remains unknown. There is no clear explanation why, for
more often in concordance with their end-of-life care preferences example ACP interventions had a different impact on knowledge of
than patients in control groups. The study by Silveira et al66 shows ACP because these studies measured knowledge of ACP in different
that concordance increases when advance directives were discussed. ways and did not use the same validated questionnaire. Interventions
Therefore, advance directives seem to be a tool for ACP by opening are likely to have no effect on symptoms, like symptoms of anxiety
the dialogue, but discussion about advance directives is necessary to and depression, psychological well-being, health status, and pain.
10 C.H.M. Houben et al. / JAMDA xxx (2014) 1e13

Fig. 3. (continued).

Although fear of causing patient psychosocial distress is a physi- patients’ ratings of the quality of communication or whether the
cian reported barrier for ACP,74 the current study finds no evidence quality of communication may influence symptoms of depression.
that ACP increases symptoms of anxiety and depression. This is in line
with the findings of a cohort study in patients with cancer which has Advance Directives vs Advance Directives and Communication
demonstrated that ACP was not associated with a higher prevalence About End-of-Life Care
of depressive disorders.75 A trial by Curtis et al76 has shown a rela-
tionship between quality of communication and the presence of A significant association was found between type of intervention
symptoms of depression in patients with chronic obstructive pul- and the period in which the study was conducted. Across time more
monary disease. They found a negative association between quality of studies have been conducted in which people were offering a dis-
communication and symptoms of depression. However, it is unclear cussion of advance care planning in addition to the opportunity to
whether this finding reflects an effect of symptoms of depression on complete an advance directive. Nevertheless, the present study did
C.H.M. Houben et al. / JAMDA xxx (2014) 1e13 11

not show a difference in completion of advance directives or occur- limited. Methodological limitations were, for example, no random
rence of discussions about end-of-life preferences between in- allocation; allocation not concealed; lack of intention to treat anal-
terventions limited to the completion of advance directives and ysis; and differences between the intervention and control group at
interventions also including communication about ACP. Therefore, baseline. In addition to these methodological considerations, it could
both interventions are able to improve these outcomes. However, be possible that the intervention would have been more effective if
none of the studies limited to completion of advance directives implemented earlier during the course of illness.37
explored the impact on patient’s preferences for end-of-life care and The present systematic review also has several limitations. For
the end-of-life care actually received. Meta-analysis of the three trials example, several instruments are available to assess the quality of
with interventions focusing on communication in addition to advance randomized controlled trials and choosing another instrument might
directives showed that patients in the intervention groups had an have changed the results. The nature of the interventions makes it
increased likelihood of receiving end-of-life care in concordance with difficult to impossible to blind patients. The PEDro scale was used
their preferences compared with control groups. because research has shown that it is a reliable scale to measure the
Previous authors found that a successful ACP intervention should methodological quality of randomized controlled trials.85 Other scales
combine effective communication with the completion of advance such as the Jadad quality criteria do not include items to measure
directives. 77 Indeed, a previous review concerning patient- internal validity when blinding is not possible.86 Further, we included
professional communication about end-of-life issues in life-limiting randomized controlled trials only because this study design in gen-
conditions showed that a successful intervention should include eral has good validity and causal conclusions can be drawn.87 We
combined components of training, patient discussion, education, and were unable to include nonpublished trials, which may lead to se-
written documentation. Discussions concerning preferences about lection bias. Despite this limitation, we were still able to include 56
end-of-life care are seen as an essential component of ACP78 and are trials. In addition, only full articles that were written in English were
associated with greater patient satisfaction with communication with included in the review. Seven non-English randomized controlled
their physician79 and improved family satisfaction with end-of-life trials were excluded. However, there is no evidence that language-
care.80 According to the guideline “Palliative Care: Symptom Man- restricted meta-analyses cause bias in intervention effects.88 Finally,
agement and End-of-Life Care” developed by the World Health some trials reported outcome measures without mentioning the
Organization communication is an essential skill for delivering good baseline data. Unfortunately the contacted authors were not able to
end-of-life care.81 However, “good communication” is a broad provide the requested data, hence, not all trials could be included in
concept without a clear definition. Although the key features of the meta-analysis.
successful ACP interventions are identified, it is still unclear which
specific elements of ACP are relevant to improve end-of-life care for Conclusions
patients and their loved ones. The present review shows that in-
terventions including communication about ACP are able to improve In line with our hypothesis, we conclude that ACP interventions
concordance between patient’s preferences and end-of-life care increase the completion of advance directives, the occurrence of dis-
received. However, it remains unknown whether interventions only cussions about end-of-life care preferences, and the concordance be-
focusing on advance directives are able to improve end-of-life care. tween patient’s preferences and end-of-life care received in different
adult populations. Moreover, ACP interventions are likely to improve
Methodological Considerations
other outcomes for patients and their loved ones, such as quality
of communication. Further, there seems to be no detrimental effect on
Included trials had several limitations. First, 55.4% of the trials
anxiety, depression, and psychological well-being. The effects on
were classified as “low-quality trials.” The most important reason for
knowledge of ACP, end-of-life care preferences, satisfaction with
low PEDro-scores was the lack of blinding of patients, therapists, and
healthcare, decisional conflict, and use of healthcare services remain
assessors. This may have influenced the findings of the included tri-
unknown. To our knowledge, there is no randomized controlled trial in
als. Indeed, if patients and therapists are not blinded there is a greater
which an intervention focusing on the completion of advance di-
risk of response bias and intervention bias, respectively.82 Other
rectives is compared with an intervention focusing on communication
highly prevalent limitations were a lack of intention to treat and
about ACP. In this review, a head-to-head comparison was not done,
concealed allocation. This may cause biases, like overestimation of
and therefore, it is unknown which ACP approach is the best. However,
clinical effectiveness83 and finding of more modest treatment ef-
considering the positive effects of ACP on multiple outcomes, im-
fects.84 Second, meta-analysis was not possible for outcomes such as
plementation of ACP in regular clinical care is recommended. Future
quality of communication, knowledge of ACP, end-of-life care pref-
studies are necessary to reveal the effective elements of ACP and
erences, satisfaction with healthcare, decisional conflict, use of
should focus on the best way to implement structured ACP in standard
healthcare services, and symptoms, because of variability in defini-
care. Future studies should overcome known methodological short-
tion and measurement. In addition, a number of included trials used
comings, such as the lack of intention to treat, concealed allocation,
instruments that were not formally validated. This may limit the
and a small sample size. Second, we recommend the use of formally
validity of the results and comparisons with other trials were not
validated instruments to make it possible to compare outcomes of
possible. Third, several trials included a relatively small sample size
different studies. Outcomes that should be studies in future studies are
and often trials were conducted in only 1 setting, making generaliz-
the outcomes for which meta-analysis was not possible in our review
ability difficult. A separate analysis of the different settings, for
because of variability in definition and measurement. These outcomes
example nursing home studies, was not possible due to the use of
are quality of communication, knowledge of ACP, end-of-life care
different outcomes. Fourth, there was variability in timing of inter-
preferences, satisfaction with healthcare, decisional conflict, use of
vention, age, and primary diagnosis of patients in the included trials.
healthcare services, and symptoms.
However, despite these differences the majority of the trials showed
positive results. The results of the Study to Understand Prognoses and
Preferences for Outcomes and Risks of Treatments37 were disap- Acknowledgments
pointing, although it was the single biggest study included in this
review. The methodological quality of the Study to Understand All authors were involved in the conception and design of the
Prognoses and Preferences for Outcomes and Risks of Treatments was study and the interpretation of data. Three authors were responsible
12 C.H.M. Houben et al. / JAMDA xxx (2014) 1e13

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