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Review Article
A Systematic Review of Clinical Interventions
Facilitating End-of-Life Communication
Between Patients and Family Caregivers
Min Young Jung, MSN, RN1 , and Alicia K. Matthews, PhD1
Abstract
Communication between patients and family caregivers plays a key role in successful end-of-life (EOL) care. In the majority of
cases, health-care providers (HCP) are responsible for leading this communication in clinical settings. This systematic review
aimed to examine the evidence for the efficacy of HCP-led interventions in enhancing communication between patients and family
caregivers. The review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and involved a
search of MEDLINE via PubMed, CINAHL, Scopus, Embase, and PsycINFO as well as a manual search for additional articles on
Google Scholar without date restrictions. Of 2955 articles retrieved, 8 meeting the eligibility criteria were included in the review.
A quality appraisal of the selected studies was performed using the van Tulder Scale, with 5 of 8 studies rated as high quality. All 8
studies employed psychoeducational interventions involving both patients and surrogate/family caregivers. Common elements of
the interventions reviewed included encouraging participant dyads to share their concerns about the patient’s medical condition,
clarify their goals and values for EOL care, and discuss their EOL care preferences. Of 8 interventions reviewed, 6 measured EOL
care preference congruence within dyads as a primary outcome, and all 6 interventions were effective in increasing congruence.
Secondary outcomes measured included decisional conflict and relationship quality, with mixed outcomes reported. This review
suggests that HCP-led EOL communication interventions show promise for improving EOL care preference congruence.
However, further studies with improved methodological rigor are needed to establish the optimal timing, intensity, and
duration of interventions.
Keywords
intervention, terminal care, health-care providers, communication, family, caregivers
Introduction
Over 20 million people are estimated to be in need of end-of-
life (EOL) care each year.1 Based on the principle of advocat-
ing for terminally ill patients’ autonomy in the face of
impending death, EOL care is intended to support a patient’s
decision-making regarding preferred treatment options.2
Advance care planning is an evidence-based approach to help-
ing a person obtain preferred EOL treatments.2 As part of
advance care planning, completion of an advance directive, a
document recording the person’s preferences for future care,
has been associated with improved quality of life among term-
inally ill patient populations, including less inhospital death
and increased use of hospice care.3 Despite its known benefits
and systematic efforts to increase its use, an advance directive
has been completed by only 36.7% of American adults.4 In the
absence of an advance directive, family members often assume
the role of surrogate decision makers5 on behalf of patients
with regard to their EOL care preferences.6,7 Despite the
importance of patients’ and family caregivers’ reaching
agreement regarding EOL care options, studies have shown
that many patients and their family caregivers experience
difficulties in communicating about EOL choices.8-11 For
example, some studies have reported discordance between
patients’ and family caregivers’ preferences regarding disclo-
sure of terminal status and EOL care8,9; other studies have
found that families experience conflicts in communicating
because of differing coping styles as well as the complexity
of EOL decision-making.10,11 Given the importance of EOL
communication, identifying best practices for facilitating com-
munication between patients and family members is warranted.
Successful EOL communication is known to reduce aggres-
sive life-sustaining medical interventions,12,13 prevent higher
health-care costs,14 increase use of palliative care,15 and
enhance family caregivers’ satisfaction with care.16 However,
1 Department of Health Systems Science, College of Nursing, University of
Illinois at Chicago, IL, USA
Corresponding Author:
Min Young Jung, MSN, RN, Department of Health Systems Science, College of
Nursing, University of Illinois at Chicago, 845S. Damen Avenue, Chicago, IL
60612, USA.Email: mjung34@uic.edu
American Journal of Hospice
& Palliative Medicine®
2021, Vol. 38(2) 180-190
ª The Author(s) 2020
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a recent study reported that nearly 40% of individuals had not
communicated with anyone about their EOL wishes.17 As
effective communication is critical to optimal EOL care,
health-care providers (HCPs) should play a key role in facil-
itating such communication between patients and family care-
givers.18 In addition, HCP-led communication is needed to
reduce family conflicts and improve EOL care decision-
making through sharing of information and clarification of
goals.19,20 Communication between patients and family mem-
bers is recognized as being crucial, as is the HCP’s role in this
communication, but no known previous review has specifically
addressed HCP-led EOL communication interventions target-
ing patients and family caregivers simultaneously.
To address this gap in the literature, a systematic review was
performed to identify and appraise the efficacy of clinical inter-
vention programs aimed at improving EOL communication
between patients and their family caregivers. Specifically, the
objectives of this review were to describe and evaluate existing
clinical interventions with respect to their content, duration,
and methods; assess the quality of the intervention studies
reviewed; and examine the efficacy of the interventions.
Methods
Design
This systematic review was reported based on the Preferred
Reporting Items for Systematic Reviews and Meta-Analyses
guidelines.21
Ethical Considerations
This study did not include human subjects and was exempt
from review by the institutional review board of the University
of Illinois at Chicago.
Search Strategy
To identify potentially relevant articles, 5 databases were
searched in February 2020: MEDLINE via PubMed, CINAHL,
Scopus, Embase, and PsycINFO. Manual searching of Google
Scholar was additionally conducted to identify potentially eli-
gible studies.22,23 As the review focused on clinical interven-
tions regarding EOL communication between patients and their
family caregivers, the medical subheading terms employed for
the database search included terminally ill, terminal care, pal-
liative care, hospice care, advance care planning, end of life,
palliative medicine, hospice and palliative care nursing, fam-
ily, parents, caregivers, communication, and intervention. This
search strategy was generated through research team discussion
and was refined based on the recommendations of an experi-
enced health science librarian at the University of Illinois at
Chicago.
Selection of Studies
To be included in the review, articles needed to meet the fol-
lowing criteria: (1) the focus of the intervention was related to
EOL communication between patients and their family care-
givers, (2) interventions simultaneously targeted patients and
family caregivers, (3) the article had to reflect original
research, and (4) the article had to be published in English in
a peer-reviewed journal before March 2020. The EOL commu-
nication was broadly defined to include the range of issues
arising following a diagnosis of a progressiveand incurable
disease and death—for example, discussion of advance care
planning, health-care decisions at EOL, transition to palliative
care, and death and dying.24 Articles were excluded if they (1)
reported on interventions targeting only communication
between patients and HCPs or (2) were review articles, pub-
lished abstracts, dissertations, conference or symposium pro-
ceedings, or editorials.
Data Analysis
The database search resulted in retrieval of 2955 articles, of
which 624 duplicates were eliminated using the EndNote pro-
gram as well as manual inspection (Figure 1). After screening
of article titles and abstracts, 19 articles remained. The authors
then reviewed the full text of these articles based on the elig-
ibility criteria by 2 independent reviewers (MJ and AM). Dis-
crepancies were resolved by discussion and consensus. Finally,
8 articles were included in the final review. Based on Garrard’s
review matrix method,25 a data charting form was jointly
developed by the authors to determine which data to extract
from the 8 articles. The data extracted are summarized in
Tables 1 and 2. Table 2 includes author names, publication
year, and country; purpose, setting, and sample; study design;
intervention characteristics; outcome measures; and main find-
ings. Because of the heterogeneity of the study methodologies,
a narrative synthesis approach was used to summarize the
review findings.23
Quality Appraisal
Quality appraisal of the 8 studies was performed using the van
Tulder Scale, which involves evaluating 11 study components
such as selection bias, performance bias, and detection bias.
Response options included “yes ¼ implied,” “no ¼ not
implied,” and “don’t know” for each component. When “yes”
is selected for 5 or more components, the study quality is
considered “high.”]34 The van Tulder Scale was originally
designed for quality appraisal of randomized controlled trials
(RCTs) and has been used by the Cochrane Collaboration Back
Group and in many systematic reviews since it was published
in 2003.35
Results
Of 2955 articles, 8 meeting the eligibility criteria were selected
for the systematic review (Figure 1). The characteristics of the
Jung and Matthews 181
selected articles are summarized in Table 1. All 8 studies were
RCTs. Most studies (87.5%) were conducted in the United
States, while only 1 (12.5%) was performed in Hong Kong.33
The articles were all published between 2005 and 2018, and
half of them30-33 were published within the past 5 years. The
studies enrolled between 60 and 460 participants, and most
studies (87.5%) reported on outcomes from patient and surro-
gate/family caregiver dyads (30-230 dyads; mean ¼ 95.9
dyads). The study participants were from a range of clinical
populations (eg, adolescent patients with cancer, dialysis
patients, and patients with amyotrophic lateral sclerosis). Two
studies mainly involved adolescent and young adult patients
(aged 14-21 years).27,29
Quality Appraisal
In terms of study quality, of the 8 studies reviewed, 5 were
judged to be of high quality based on a review using the van
Tulder Scale.27,28,30,31,33 The remaining 3 studies were judged
to be of low quality. Of particular concern in these lower-
quality studies were lack of clear information regarding blind-
ing of participants, care providers, and assessors and failure to
describe strategies implemented to avoid cointerventions.
Intervention Setting and Timing
Participants were recruited at hospital-based outpatient
clinics,27,29,31,33 a surgery clinic,26 dialysis clinics,30,28 and
medical centers.33,32 Regarding the timing of the interven-
tions, 3 studies focused on interventions for patients near death
by limiting participants to patients having a high comorbidity
score30 or a diagnosis of stage III or IV cancer.31,32 In 6
studies, the intervention was delivered in the same clinical
settings where participants were recruited,26-29,30,32 whereas
in 2 studies, it was delivered via home visits33 or
videoconferences.31
Records identified through database
and manual searches
(n = 2,955)
S
cr
ee
n
in
g
In
cl
u
d
ed
E
li
g
ib
il
it
y
Id
en
ti
fi
ca
ti
o
n
Records after duplicates removal
(n = 2,331)
Titles and abstracts screened
(n =2,331)
Studies included in 
quantitative synthesis
(n = 8)
Duplicates removed
(n = 624)
Records excluded based on
review of titles and abstracts
(n =2,312)
Full-text articles assessed
for eligibility
(n = 19)
Full-text articles excluded
(n = 11)
- Not related to communication
between patients and family
members (n = 4)
- Did not include intervention 
evaluation (n = 4)
- Did not assess results for 
family members (n= 2)
- Almost half the subjects did 
not complete follow-up
questionnaires (n = 1)
Figure 1. Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram for study selection process of systematic review.
182 American Journal of Hospice & Palliative Medicine® 38(2)
Intervention Characteristics and Intensity
All 8 studies included in the review examined the benefits of
psychoeducational interventions involving both patients and
surrogate/family caregivers and were compared to a control
condition. Each intervention was designed to assist patient/
caregiver dyads in sharing concerns about the patient’s medical
condition and to identify EOL values, goals, and care prefer-
ences. The interventions were conducted using trained
facilitators. Excluding 2 studies27,29 that did not specify the
health-care profession of trained facilitators, most interven-
tions (62.5%) were conducted by trained nurses,28,26,30,32,33
and 1 (12.5%) was delivered by trained social workers.31 The
frequency and duration of intervention sessions varied, ranging
from 1 to 6 sessions (mean ¼ 2.5 sessions) delivered weekly or
biweekly and lasting from 20 to 90 minutes. In all 8 studies,
participants were provided with written information about
advance care planning as well as actual EOL documents used
in clinical settings, such as a Statement of Preference or Goals
of Care. A scenario selection approach, which involves select-
ing preferred EOL care options under certain conditions
described in the scenario, was used during more than 1 session
in 6 studies26-29,30,33 to clarify the values and EOL care pre-
ferences of patients and family caregivers. In 1 study,32 the
researchers called participants 4 weeks postintervention to
remind them of the intervention content and to encourage them
to talk about their EOL care preferences and review handouts;
this call could be considered a booster session. With respect to
control conditions, 6 of 8 studies provided written information
about advance directives26,28-30,32,33 and addressed individual
questions from dyads either directly or through referrals to
HCPs not involved in the research; the 2 remaining studies
provided patients and families with general health promotion
information.27,31
Communication Outcome Measures
The primary outcome measured in each of the intervention
studies was congruence between patients’ EOL care prefer-
ences and those identified by the nominated family caregivers.
In 6 studies (75.0%), level of congruence between patients and
their caregivers was measured as an outcome of EOL commu-
nication interventions.26-30,33 Various instruments were used to
measure communication outcomes including the patient-
specific Statement of Treatment Preferences, Goals of Care
documents, and Life-Support Preferences Questionnaires. Each
of these documents included 2 to 6 scenarios (mean ¼ 3.0
scenarios) that reflected patients’ and their caregivers’ prefer-
ences for EOL care, and congruence was determined by the
number of scenarios for which the dyads selected the same
response option. In each scenario, dyads were asked to choose
1 option representing the patient’s preference under certain
medical conditions (eg, low chance of survival with highbur-
den of care, functional impairment, and cognitive impairment).
In 3 of 6 studies,27,28,30 researchers provided dyads with tai-
lored scenarios based on patient-specific medical conditions.
For example, 1 scenario given to adolescents living with HIV
and their family caregivers27 was “If I had AIDS and a serious
complication, such as an overwhelming infection or pneumo-
nia, and had a good chance of living, but it was expected that I
would never know who I was or who I was with and would
need 24-hour nursing care, I would choose the following . . . ”
As response options, the most commonly provided options
were “continue life-sustaining treatment,” “stop all life-
sustaining treatment,” and “don’t know.” In 1 study,35 response
options were further subdivided to specify “not for cardiopul-
monary resuscitation,” “not for mechanical ventilator,” “not for
tube feeding,” and “comfort care.”
In 6 studies,26-30,33 patients’ difficulty in making EOL deci-
sions was measured as a secondary outcome using the Decisio-
nal Conflict Scale. Additionally, 1 study31 employed the
Revised Dyadic Adjustment Scale and Miller Social Intimacy
Scale to measure couples’ relationship satisfaction and close-
ness as well as 2 subscales from the Revised Marital Satisfac-
tion Inventory: Problem Solving Communication and Affective
Communication36 to measure outcomes of the EOL communi-
cation interventions. The timing for evaluating these outcome
measures varied, ranging from the completion of each session
to 1 to 3 weeks later to 1 to 12 months after completion of the
intervention. Half of the reviewed studies conducted their
follow-up assessments of the interventions by telephone.28,30-32
Table 1. Description of End-of-Life Communication Intervention
Studies.
Total (%) Mean (range)
Publication year
2005-2009 3 (37.5)
2010-2014 1 (12.5)
2015-2019 4 (50.0)
Study location
United States 7 (87.5)
Hong Kong 1 (12.5)
Number of dyadsa 95.9 (30-230)
0-50 4 (50.0)
51-100 1 (12.5)
101-150 1 (12.5)
201-250 2 (25.0)
Patient disease
Cancer 2 (25.0)
End-stage renal disease 2 (25.0)
HIV 1 (12.5)
Mixed 3 (37.5)
Study setting
Outpatient clinic 6 (75.0)
Home 1 (12.5)
Online 1 (12.5)
Quality appraisal scoreb 5.3 (3-8)
0-4 3 (37.5)
5-8 5 (62.5)
aDyads of patient–surrogate/family caregivers.
b11-Item van Tulder Scale score (0-11).
Jung and Matthews 183
Table 2. Summary of Clinical Interventions for End-of-Life Communication Between Patients and Family Caregivers.a
Study Purpose Sample and intervention characteristics
Primary outcome measures
and findings
Quality
rating
Song et al26 Evaluate a communication
intervention for improving
congruence of EOL care
preferences between
patients and surrogates
32 Patient–surrogate/family
dyads
One-time 20- to 45-minute
conversation session
delivered by trained nurse
facilitators to each dyad in
an intervention group
Intervention group:
(1) representational
assessment
(2) exploring concerns
related to planning for
future medical decision-
making
(3) creating conditions for
conceptual change
(4) introducing replacement
information using a
disease-specific STP
document
(5) summary
Control group: usual care
� provided with EOL
planning guide and
advance directive
document
The intervention was
effective in increasing
patient–surrogate
congruence and
decreasing decisional
conflict.
� Based on the STP, the
intervention group
showed higher
congruence than the
control group (P ¼ .002).
Most dyads (81%) in the
intervention group
reached complete
congruence for all
scenarios; only 19% in the
control group reached
complete congruence.
� DCS scores were
significantly lower in the
intervention group than in
the control group
(P ¼ .02).
4
Lyon et al27 Examine the effectiveness of
an EOL decision-making
model for increasing
congruence between
adolescents living with
HIV and their families
38 Patient–surrogate/family
dyads
Three sessions of 60- to 90-
minute conversation
conducted weekly by a
trained facilitator for each
dyad in an intervention
group
Intervention group:
� Session 1: identified dyads’
values, beliefs, and life
experience with illness
using a survey
� Session 2: facilitators
elicited participant
conversation about
advance care planning,
encouraging expression of
fears, values, goals, and
experiences regarding
death and dying
� Session 3: patients
completed an advance
directive document given
to family and physician
Control group: Three
different sessions
� Session 1: nonmedical
developmental history
assessment
� Session 2: counseling with
safety information and
resources for health
promotion
� Session 3: facilitated
conversation about future
plans for college, work, or
rehabilitation
The intervention was
effective in increasing
patient–surrogate
congruence in EOL care
preferences
� Based on the STP, the
intervention group
showed higher EOL
preference congruence
than the control group
only for scenario 3
(P ¼ .03).
� On the informed subscale
of the DCS, the
intervention group
thought that they were
significantly better
informed about EOL
decisions than the control
group (P ¼ .001).
6
Song et al28 Examine the effect of an EOL
communication
intervention targeting
African Americans with
58 Patient-family dyads
One-time 60-minute
conversation session
delivered by a trained
Intervention group:
(1) representational
assessment
The intervention was
effective in increasing
patient–surrogate
5
(continued)
184 American Journal of Hospice & Palliative Medicine® 38(2)
Table 2. (continued)
Study Purpose Sample and intervention characteristics
Primary outcome measures
and findings
Quality
rating
ESRD and their family
caregivers
nurse facilitator to each
dyad in an intervention
group
(2) identifying and exploring
gaps and concerns in
dyads about life-sustaining
treatment at EOL
(3) creating conditions for
conceptual change
(4) introducing replacement
information using EOL
scenarios and
encouraging patients to
clarify the care goal
(5) summary
Control group: usual care
� A social worker provided
written information on
advance directives and
patients’ rights
congruence in EOL care
preferences
� Based on the Goals of Care
document, the
intervention group
showed higher
congruence than the
control group after
1 week of intervention
(P¼ .04), but intervention
group congruence was
not significantly improved
3 months after the
intervention (P ¼ .10).
� There was no significant
difference in the DCS
scores between the
intervention and control
groups.
Lyon et al29 Evaluate the efficacy of a
family-centered advance
care planning intervention
targeting adolescent
oncology patients and
their family caregivers
30 Patient–surrogate/family
dyads
Three 60-minute sessions
conducted weekly by a
trained facilitator for each
dyad in an intervention
group
Intervention group:
� Session 1: assessing dyads’
values, beliefs, and life
experience with illness
and EOL care using survey
� Session 2: facilitators
promote understanding
of each other and address
the need for future
discussion, using STP to
encourage conversations
about goals and values in
bad-outcome situations.
Facilitators elicited
participants’
understanding of medical
condition, prognosis,
fears, and hopes.
� Session 3: patients
completed an advance
directive document with
their family present
Control group: usual care
� providing an advance care
planning brochure
The intervention was
effective in increasing
patient–surrogate
congruence in EOL care
preferences
� Based on the STP, the
intervention group
showed higher EOL
preference congruence
than the control group for
4 of 6 scenarios (Pby a trained
nurse facilitator to each
dyad in an intervention
group
Intervention group:
� Session 1: (1) assessing
cognitive, emotional, and
spiritual/religious aspects
of dyads’ representations
of patients’ illness, and
EOL care, (2) providing
individualized information
about topics such as the
effectiveness of life-
sustaining treatment for
the patients’ conditions,
and (3) helping surrogates
The intervention was
effective in increasing
patient–surrogate
congruence in EOL care
preferences
� Based on the Goals of Care
document, intervention
effects on dyad
congruence were
statistically significant
(P ¼ .03); however, the
intervention’s effect on
dyad congruence had
7
(continued)
Jung and Matthews 185
Table 2. (continued)
Study Purpose Sample and intervention characteristics
Primary outcome measures
and findings
Quality
rating
prepare for being a
decision maker and for
the emotional burden of
EOL decision-making by
actively involving the
surrogate in the
discussion
� Session 2: (1) reviewing
goals of care documents
and resuscitation
preferences
Control group: usual care
� A social worker provided
written information on
advance directives
significantly decreased
after 12 months (P ¼ .04),
whereas dyad congruence
in the control group
significantly improved
from 2 months after the
intervention to 6 (P¼ .02)
and 12 months (P ¼ .02).
� Patients’ scores on the
DCS decreased over time
in the intervention group
with a significant
intervention effect across
time points (P ¼ .01).
Porter
et al31
Examine the efficacy of a
communication
intervention delivered via
video conference for
patients with advanced
cancer and their partners
32 dyads
Six 60-minute sessions
delivered via video
conference by master’s-
level trained social
workers
Intervention group:
� Session 1: learning
communication skills for
disclosing thoughts and
feelings about cancer,
encouraging couples to
share their concerns
� Session 2: training for joint
decision-making
� Session 3-6: patient and
partner each select a
topic to discuss and
having discussions on the
issues.
Control group: Health
Lifestyle Information
education
� Sessions 1-6: providing
health information such as
about fatigue, sleep
disturbance, nutrition,
and physical activity
Between-group effect sizes
suggested that the
intervention led to
improvements in (1)
relationship satisfaction
for patients and partners
and (2) intimacy and
communication between
them.
� Based on the Revised
Dyadic Adjustment Scale,
medium effects were
found for relationship
satisfaction in patients and
partners.
� Based on Miller Social
Intimacy Scale, medium
effects were found for
intimacy in patients. Also,
based on 2 subscales of
the Revised Marital
Satisfaction Inventory,
medium effects were
found for affective
communication in
patients.
6
Sulmasy
et al32
Evaluate the effectiveness of
an intervention to help
surrogates by endorsing
mutual decision-making
between them and
patients
137 Patient–surrogate/family
dyads
One-time discussion session
conducted by a trained
nurse facilitator for each
dyad in an intervention
group with a follow-up
call after 4 weeks
Intervention group:
(1) Based on the results of
the Decision Control
Preferences Scale, a
nurse-facilitated
discussion of group
responses included
barriers to participating in
decision-making
(2) provided a decision-
making handout reflecting
patients’ decision control
preferences
(3) encouraged dyads to
continue discussing their
The intervention was
effective in promoting a
mutual decision-making
style, balancing patients’
EOL wishes with what the
surrogates think would be
best for the patients.
� Pre–post endorsement of
mutual decision-making
by patients: in a sensitivity
analysis, the increase in
mutual decision-making
was significant for the
intervention group
(P ¼ .04).
4
(continued)
186 American Journal of Hospice & Palliative Medicine® 38(2)
Efficacy of Interventions
Congruence regarding EOL care preference within dyads was
the major outcome in 6 of the 8 reviewed studies,26-30,33 and all
6 provided evidence of the interventions’ efficacy in increasing
dyad congruence. Although the 6 studies differed in their tim-
ings of obtaining significant results, each study26-30,33 showed a
significant difference between intervention and control groups
within 6 months after the intervention (Pthe effectiveness of HCP-
led interventions for improving EOL communication outcomes
between patients and family caregivers. Overall, a total of 8
experimental studies met the study eligibility criteria and were
included in the review. We found evidence of the benefit of
psychoeducational interventions on increasing the congruence
of EOL care preferences between patients and family care-
givers. However, our appraisal of the selected studies revealed
that the quality of the included studies was mixed. The results
of this review highlight the importance of additional nursing
research aimed at increasing the number, quality, and benefits
of EOL communication interventions for patients and their
family members.
Regarding communication outcome measures, most studies
measured dyad congruence in EOL care preferences as a pri-
mary intervention outcome. Agreement between patients and
family caregivers in EOL care decision-making is critical, but
increasing dyad congruence in EOL care preferences has been
challenging because of the complexity of the EOL context and
related communication.8,38 It is therefore noteworthy that a
major outcome of the interventions in 6 studies was a signifi-
cant increase in dyad congruence with respect to EOL care
preferences. Considering that psychoeducation has been used
as a key component of standard therapeutic interventions in the
family context,39 it is not surprising that all 8 interventions
reviewed in this study employed psychoeducational
approaches based on conversations with trained facilitators.
Common elements of the interventions included encouraging
a participant dyad to share their concerns about the patient’s
medical condition and to clarify their goals and values for EOL
care as well as their care preferences. This would seem to be a
straightforward matter, but in the EOL context, patients and
family caregivers experience difficulties in sharing their
thoughts and feelings for reasons such as financial chal-
lenges,40 lack of opportunities to have such discussions,41 and
lack of preparedness to engage in such communication.42 Con-
sidering these obstacles to EOL communication, our findings
underscore the need for HCPs to promote clear and open com-
munication between patients and family caregivers as part of
their routine EOL care.43
The majority of the studies used a scenario selection
approach26-30,33 to evaluate dyad congruence in EOL care
preferences; however, only half of those studies27,28,30
employed specific, patient-tailored EOL scenarios. The tools
for EOL care preference assessment currently used in clinical
settings are typically limited to scenarios that address untrea-
table disease in general terms,44 and those tools include very
simple questions that may be inadequate to capture a dyad’s
treatment preferences.45 With use of more detailed communi-
cation tools tailored to a specific EOL context, such as a par-
ticular disease population, it is more likely that intervention
outcomes will be captured with greater precision.45,46 There-
fore, our findings not only provide evidence that EOL commu-
nication plays an important role in enhancing dyad congruence
regarding EOL care preferences but also indicate a need for
consistent use of disease-specific tools for care preference
assessment, which would require eliciting diverse health sce-
narios from patients at the EOL. Notably, however, only 1
study31 measured intimacy and communication skills between
patients and family caregivers. To accurately measure the qual-
ity of EOL communication between patients and family care-
givers, it is not enough to simply quantify congruence in EOL
care preferences. However, as communication is a complex and
context-related phenomenon, measuring the quality of commu-
nication between patients and family caregivers is demanding;
consequently, few validated instruments are available to mea-
sure the quality of communication itself within dyads.47 To
address this lack of appropriate measurement tools for commu-
nication intervention outcomes, researchers should focus on
developing tools to measure EOL communication based on
content analysis (eg, communication pattern analysis) of con-
versations between patients and family caregivers. Application
of such tools to obtain more nuanced findings would expand
the scope of intervention research on EOL communication
between patients and family members.
In our review, the timing, therapeutic dose, and duration of
the interventions varied considerably across the 8 studies. The
effects of EOL communication interventions of various design
should be compared to identify the best timing for the inter-
vention and the optimal dose and duration of conversation
sessions. In addition, only 1 of 8 studies30 confirmed the
long-term effectiveness of the intervention by measuring
12-week follow-up outcomes. Therefore, longitudinal research
examining the long-term effects of EOL communication inter-
ventions as well as their cost-effectiveness is needed to verify
their sustainability.
Implications
With respect to clinical EOL care, to facilitate communication
between patients and family caregivers, HCPs should be
trained to integrate essential practices into their routine hospital
rounds: These include patiently listening to the patient’s and
family caregiver’s concerns about the patient’s medical condi-
tion, clarifying their EOL care values, and developing an EOL
care plan and goals. Based on the data available in the 8 studies
reviewed, these simple yet critical practices will be beneficial
in improving mutual EOL decision-making within families,
188 American Journal of Hospice & Palliative Medicine® 38(2)
resulting in increased congruence of EOL care preferences. In
the realm of EOL care research, to promote successful imple-
mentation of clinical interventions intended to address EOL
communication issues, we recommend that researchers inves-
tigate the optimal timings, doses, and durations of particular
types of interventions.
Limitations
This review has limitations that should be acknowledged. First,
publication and selection bias may have been present, as the
review included only published articles meeting our eligibility
criteria. Also, only articles written in English were included in
the review and thus relevant intervention studies published in
other languages may have been omitted. In addition, although
in many cases patients’ surrogates were family members, a few
studies presented participants as “surrogate/family caregivers”
without specifying the percentage of family caregivers
involved. In those studies, we could not determine the degree
to which the results reflected family caregiver outcomes alone.
Finally, although we chose our search terminology in consulta-
tion with an experienced health sciences librarian, due to the
broad range of topics encompassed by EOL communication,
our search terms may not have captured all relevant studies that
met our eligibility criteria.
Conclusion
In conclusion, this systematic review indicates that HCP-led
interventions intended to facilitate EOL communication
between patients and family caregivers show promise for
improving their agreement about EOL preferences. These find-
ings are encouraging and suggest that psychoeducational inter-
vention plays a role in improving EOL communication
outcomes. However, the methodological rigor of studies in this
area needs to be improved, and additional research is required
to establish the optimal timing, intensity, and duration of inter-
ventions. Furthermore, considering that EOL communication
interventions are not commonly implemented in the clinical
setting, it is especially important that HCPs routinely encour-
age patients and family caregivers to share their EOL care
concerns, values, and goals.
Acknowledgments
The authors acknowledge Rebecca Raszewski of the University of Illi-
nois at Chicago (UIC)for her guidance in identifying search keywords
and databases. The authors also thank Dr Patricia Hershberger of UIC
for providing scientific guidance in literature review methodology and
Mr Jon Mann of UIC for his editorial contributions to this review.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to
the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the
research, authorship, and/or publication of this article: Dr Matthews’
efforts in the development of this manuscript were supported by funds
from the National Institute on Minority Health and Health Disparities
of the National Institutes of Health under Award Number
U54MD012523. The content is solely the responsibility of the authors
and does not necessarily represent the official views of the National
Institutes of Health.
ORCID iD
Min Young Jung https://orcid.org/0000-0002-7982-6117
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