REVIEW ARTICLE
Pediatric Advance Care Planning: A Systematic Review
AUTHORS: Julia D. Lotz, LPsy,a Ralf J. Jox, MD,b Gian
Domenico Borasio, MD,a,c and Monika Führer, MDa
abstract
aCoordination
BACKGROUND AND OBJECTIVES: Advance care planning (ACP) is increasingly regarded as the gold standard in the care of patients with
life-limiting illnesses. Research has focused on adults, but ACP is also
being practiced in pediatrics. We conducted a systematic review on
empirical literature on pediatric ACP (pACP) to assess current
practices, effects, and perspectives of pACP.
Center for Pediatric Palliative Care, University
Children’s Hospital, and bInstitute of Ethics, History and Theory of
Medicine, Ludwig-Maximilians University Munich, Munich,
Germany; and cCentre Hospitalier Universitaire Vaudois, Service
des Soins Palliatifs, Lausanne, Switzerland
KEY WORDS
advance care planning, palliative care, end of life, pediatric,
pediatric advance life support [PALS]
METHODS: We searched PubMed, BELIT, and PSYCinfo for empirical literature on pACP, published January 1991 through January 2012. Titles,
abstracts, and full texts were screened by 3 independent reviewers for
studies that met the predefined criteria. The evidence level of the studies was assessed. Relevant study outcomes were retrieved according
to predefined questions.
ABBREVIATIONS
AD—advance directive
ACP—advance care planning
DNR—do not resuscitate
EOL—end of life
pACP—pediatric advance care planning
RC—Respecting Choices
RCT—randomized controlled trial
Ms Lotz developed the conception of the review, constructed the
search strategy, screened the studies, extracted the data,
synthesized the results, and drafted the article; Drs Jox and
Führer significantly contributed to the conception of the review,
reviewed the study abstracts, checked the data synthesis, and
revised the article; Dr Borasio contributed to the conception of
the review, supervised the whole review process, and revised
the article; and all authors participated in regular discussions
and approved the final version of the article.
www.pediatrics.org/cgi/doi/10.1542/peds.2012-2394
doi:10.1542/peds.2012-2394
Accepted for publication Oct 24, 2012
Address correspondence to Julia D. Lotz, LPsy, Coordination
Center for Pediatric Palliative Care (KKIP), University Children’s
Hospital, Lindwurmstr. 4, 80337 Munich, Germany. E-mail: julia.
[email protected]
PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).
RESULTS: We included 5 qualitative and 8 quantitative studies. Only 3
pACP programs were identified, all from the United States. Two of them
were informed by adult programs. Major pACP features are discussions between families and care providers, as well as advance directives. A chaplain and other providers may be involved if required.
Programs vary in how well they are evaluated; only 1 was studied
by using a randomized controlled trial. Preliminary data suggest that
pACP can successfully be implemented and is perceived as helpful. It
may be emotionally relieving and facilitate communication and
decision-making. Major challenges are negative reactions from
emergency services, schools, and the community.
CONCLUSIONS: There are few systematic pACP programs worldwide
and none in Europe. Future research should investigate the needs
of all stakeholders. In particular, the perspective of professionals
has so far been neglected. Pediatrics 2013;131:e873–e880
Copyright © 2013 by the American Academy of Pediatrics
FINANCIAL DISCLOSURE: The authors have indicated they have
no financial relationships relevant to this article to disclose.
FUNDING: Supported by the “Stifterverband für die Deutsche
Wissenschaft” (number 401.20112934).
PEDIATRICS Volume 131, Number 3, March 2013
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End-of-life (EOL) decisions in children
with life-threatening or life-limiting
conditions are a major challenge in
pediatrics. Timely discussions with
parents and the child (if possible) about
treatment options and decisions they
will face over time may be helpful to
improve understanding of the child’s
prognosis and preparing for future
situations.1 The concept of advance
care planning (ACP) aims at respecting
the patients’ autonomy and at improving their EOL care.2 So far, ACP programs and research have been almost
exclusively focused on adult patients,
particularly in the geriatric setting.2,3
The pediatric setting is characterized
by complicating factors such as a high
prognostic uncertainty, lack of decisionmaking capacity in most patients, and
the complexity of the social environment
involved.4,5 Although there is growing
research interest in pediatric ACP
(pACP), to our knowledge, no systematic
review on the issue has been performed.
Our goal was, therefore, to fill this gap
and to systematically review the empirical literature on pACP for severely ill
children and adolescents to outline the
current practice and effects of, as well
as perspectives on, pACP.
METHODS
We conducted a systematic review of
empirical research on pACP for severely
ill children and adolescents. Details on
the process are given in a separate review protocol (available from the authors). The protocol is based on the
PRISMA (Preferred Reporting Items for
Systematic Reviews and Meta-Analyses)
statement checklist for the reporting
of systematic reviews.6 This 27-item
checklist helped us in defining a priori
our research question, eligibility criteria, and methods for the review.
explicit focus on pACP, defined as
thinking ahead to treatment choices
and goals of care in consultation with
health care providers, family members,
and important others;2,7 (2) studies
revealing either forms and elements of
pACP, participants in pACP, and effects
or perspectives of pACP; (3) studies
addressing pediatric patients with lifelimiting conditions, their surrogates or
health care providers; (4) reports of
empirical data (qualitative and quantitative) or systematic reviews/metaanalysis of empirical studies; (5) articles in English, German, or French,
published January 1, 1991 through
January 20, 2012. We excluded studies
on perinatal issues and patients with
a primary psychiatric diagnosis, and
studies that merely revealed the prevalence and predictors of do-notresuscitate (DNR) orders.
We performed searches in PubMed,
BELIT, and PSYCinfo. Relevant descriptors and key words were identified by
searching the databases’ thesauri and
by preliminary searches with at least 1
pACP-related descriptor. For PubMed,
this yielded the following MeSH-terms:
“advance care planning,” “advance directive,” and “resuscitation order.” These
terms were also searched in all fields,
with synonyms and truncations added.
All terms were combined in 1 search
strategy by the Boolean operator “OR.”
We conducted supplemental searches in
BELIT and PSYCinfo to account particularly for bioethical and psychological
publications. Finally, the reference lists of
included articles were hand-searched,
applying the same eligibility criteria.
Study Screening
Selection of relevant articles followed
a screening process in 3 stages. Figure
1 illustrates this process.
Phase 2
Abstracts of retained articles were
scrutinized by 1 of the authors (Ms Lotz).
If any of the exclusion criteria were met,
the article was rejected. Articles of
doubtful eligibility were retained. Abstracts were cross-checked by 1 of 2
independent reviewers (one-half by Dr
Führer, the other by Dr Jox) and disagreements discussed.
Phase 3
For the remaining articles, full articles
were reviewed in-depth twice by the
first reviewer to make final decisions
about inclusion. All articles excluded in
this phase were further re-examined by
1 of the second reviewers to prevent
overexclusion.
Data Extraction and Study Quality
Assessment
Full articles were reviewed for systematic coding of the following characteristics of the reported studies:
country of origin, study design, setting,
sample, and evidence level. The following questions for extracting relevant data were theoretically defined
according to our research aim:
1. How frequently are pACP features
applied in pediatric care?
2. What are the main elements of
pACP programs?
3. Who participates in pACP?
4. What are the effects of pACP?
5. How is pACP perceived by the
relevant stakeholders (patients,
surrogates/families, and health
care providers)?
Data Synthesis
Eligibility Criteria and Search
Strategy
Phase 1
Final criteria for eligible publications
were as follows: (1) Studies with an
Retrieved references were imported by
using EndNote, and titles were screened
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on the basis of the prespecified selection criteria. Articles of doubtful eligibility were retained in phase 1.
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We chose thematic analysis for synthesis because it allows for the integration of qualitative and quantitative
REVIEW ARTICLE
Frequency of pACP
Three studies suggest that qualified
pACP promotes the completion of ADs
and can be successfully implemented in
the community.12,13,21 In a qualitative
study on patients with muscular dystrophy in regular care (8–21 years),
only 1 patient had an AD,13 whereas all
patients participating in a pACP program had an AD.21 In an RCT, adolescents enrolled in pACP had more
frequently an AD than controls at 3
months postintervention (95% vs
11%).12 Patients and physicians make
increasingly use of pACP. 21 This is
shown by physicians referring more
and more children to pACP, and increasingly more children adhering to
and spending longer times in the program.
FIGURE 1
Flow diagram.
evidence.8,9 We extracted all findings
that referred to our formulated questions and summarized them across
articles into broader themes, checking
back with the original data. These
themes were then used to answer the
research questions.
RESULTS
Thirteen articles met the inclusion
criteria, of which 5 present qualitative
and 8 quantitative data. Three articles
reveal data on the same randomized
controlled trial (RCT).10–12 Twelve publications are from the United States
and 1 from South Australia.13 No European publications were identified.
Table 1 provides a summary of design
and quality of the reported studies.
Overall, patients’ ages ranged from
#6 months to 37 years. The studies
were on patients with HIV infection,10–12
cancer,14 muscular dystrophy,13,15
other severe illnesses,16–19 and healthy
adolescents.18 Four studies interviewed
adolescents and young adults (13–28
years),10,11,12,14,18,19 5 studies interviewed family members of pediatric
patients (2 months to 37 years),10–13,15–17
and 3 studies analyzed documented
records of pediatric patients (#6
months to 15 years).17,20,21 One study
was on 214 school nurses.22 Quantitative studies each included at least
50 participants. Only 1 RCT was identified,10–12 but without blinding, and
on a small and selective sample
(38 HIV-infected adolescents, 14–21
years, with an available surrogate,
92% African Americans, no severely
depressed patients). No means, SDs,
confidence intervals, and effect sizes
are reported. All other studies used
qualitative or descriptive methods of
analysis.
We identified 3 pACP programs.10–12,17,21
They resemble each other in their
overall design but differ in terms of
care setting, target population, participants, and the form of advance directive (AD). Table 2 compares the core
elements of the programs.
PEDIATRICS Volume 131, Number 3, March 2013
Three studies reveal that patients and
parents have discussions about the
future even without the help of a facilitator.13,15,19 In a quantitative study, 44%
of 50 adolescent patients with various
illnesses (13–21 years) reported that
they had discussed EOL issues with
someone.19 In a qualitative study, families of patients with muscular dystrophy (2–37 years) mainly discussed
nonmedical issues such as the child’s
educational and financial future and
how to deal with growing independence needs.15
Participants in pACP
Two retrospective qualitative studies
investigated who initiates and participates in pACP.17,20
Findings suggest that pACP encourages
parents to initiate discussions about
treatment preferences for future situations. This is shown by parents in
a pACP program initiating more often
such discussions than parents in a
regular ICU.17,20
Persons who are either actively involved in or witnessing pACP include
the following: family members, other
patients’surrogates, ethicists, a trained
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TABLE 1 Study Characteristics and Quality, in Chronological Order (n = 13)
Study
Jefferson et al 1991
Wharton et al 19962
Design
1
Setting
Qualitative, retrospective
Quantitative, descriptive
ICU
NS
Schultz-Grant et al 19983
Parker et al 19994
Quantitative, descriptive
Qualitative
School
Inpatient, outpatient
McAliley et al 20005
Toce and Collins 20036
Quantitative, descriptive
Quantitative, descriptive
Different schools, hospital
NS
Lyon et al 20047
Quantitative, descriptive
Inpatient, outpatient
Erby et al 20068
Hammes et al 20059
Qualitative mainly
Qualitative, retrospective
NS
NS
Wiener et al 200810
Lyon et al 2009a,11 2009b,12
and 201013
Qualitative
Quantitative, RCT
Outpatient
Outpatient HIV-adolescent
clinics
Sample
LoE
17 patients with various illnesses (2 mo–15 y)
Convenience sample of 76 parents of patients with
physical/cognitive disabilities and/or chronic
illnesses (mean = 8.4 y)
Convenience sample of 214 school nurses
Convenience sample of 13 family members of patients
with DMD, BMD, or SMA (mean = 16.4 y, range: 8–21 y)
107 adolescents, healthy or with various illnesses (15–18 y)
Carers of 83 pediatric patients with various life-limiting
illnesses, 40% imminently dying (30% # 6 mo at
enrollment in program)
Convenience sample of 50 patients, 50% with
chronic illnesses (13–21 y)
24 and 17 parents of patients with DMD (2–37 y)
17 patients with AD and various illnesses (2 mo–12 y)
and 13 parents
20 patients with HIV-1 or cancer (16–28 y)
38 dyads of HIV-infected patients (14–21 y) and surrogates
IV
IV
IV
IV
III
IV
IV
IV
IV
IV
I
BMD, Becker muscular dystrophy; DMD, Duchenne muscular dystrophy; LoE, level of evidence: I. RCT, II. non-RCTs, III. Observational studies with controls, IV. Observational studies without
controls and qualitative studies. NS, not stated; SMA, spinal muscular atrophy.
TABLE 2 Pediatric ACP Programs (n = 3)
Program Characteristics
FACE Intervention 10–12
Footprints Model21
Hammes et al 200517
Full name
FACE ACP intervention
Basis
Care setting
Target population
Empirical, RC program,23 Five Wishes28
Outpatient
HIV-infected adolescents
Interventions
3 weekly standardized sessions
Standard participants in
pACP
Patients, parents, trained interviewer
Optional participants
Chaplain, psychotherapist, hospital
ethicist
Standard form with open section, copy Standard form, copy to relevant providers
to family and physician
(eg, EMS personnel, equipment providers,
police, funeral director, coroner)
NS
Individually scheduled
Medical, psychosocial, and spiritual
Medical, psychosocial, and spiritual
AD form
Review of the care plan
Issues addressed
Footprints model of advance care planning and
coordination
Empirical, ethics committee discussions
Mainly outpatient
Patients with various life-limiting illnesses
NS
Designed by RC team
In- and outpatient
Patients with various life-limiting
illnesses
2–3 sessions (30–40 min)
Interdisciplinary care conference (90 min) and
scheduled follow-up meetings
Family, patients (developmentally adapted), continuity Surrogates, competent patients,
physician, nurse, social worker, chaplain, community
hospital ethicist, chair of the Ethics
physician, other providers
Committee, physician
Ethics committee
Chaplain
Letter format
Annually
Medical
EMS, emergency medical services; FACE, family/adolescent centered; NS, not stated; RC, Respecting Choices.
interviewer, the treating physician,
a nurse, chaplain, social worker, or
psychotherapist.17,20 No conflicts necessitating the additional consultation
of an ethics committee are reported.20,21
Effects of pACP
One qualitative review of ICU chart
records reveals that medical treatment
is modified after the implementation
of an AD.20 For most patients, ventilator support and catecholamines were
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withdrawn and narcotics added. However, in an RCT in adolescents with HIV,
pACP had no influence on decisions to
discontinue treatment.12 Two studies
suggest that pACP promotes home
deaths for children.17,20 Only 1 of 13 ICU
patients without pACP died at home,20
compared with 7 of 9 patients who
were enrolled in a pACP program.17
The only RCT identified indicates that
pACP triggers positive emotional experiences in HIV-infected adolescent
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patients and their surrogates.10,11 All
participants showed significantly more
positive emotions immediately after
pACP discussions, and patients also
showed less negative emotions.10 In
addition, pACP reduced the patients’
difficulties in making treatment decisions. They felt significantly better informed and marginally more certain
about their decisions.11 The discussions also improved the surrogates’ understanding of the patient’s
REVIEW ARTICLE
treatment preferences. Participants in
the intervention rated the quality of the
communication with the interviewer
significantly higher than the control
group. At 3 months postintervention,
adolescents in the intervention group
still reported no clinically significant
levels of depression and anxiety, and
a maintained quality of life. There were
no significant differences to controls.12
Perspectives on pACP
Most articles provide some data on the
perspectives of different stakeholders
on pACP. We identified positive perspectives on pACP, perceived problems
with pACP, and needs relating to pACP.
Positive Perspectives on pACP
Three quantitative studies reveal that
ADs for children and adolescents find
support among patients, surrogates,
and school nurses.16,18,22 In a study on
parents of children with special health
care needs (mean = 8.4 years), 57% of
76 parents were favorable toward
completing an AD for their child.16 In
a study on 107 healthy and ill adolescents (15–18 years), 87% of them found
that having an AD was at least somewhat important for people of their own
age or health state, and 90% to 93%
found it very important for people with
a chronic or life-threatening illness or
before a major surgery.18 In another
study, school nurses reported that
families occasionally ask for ADs in the
school setting.22 In a quantitative evaluation of a pACP program for HIVinfected adolescents (14–21 years),
92% of 76 families were overall satisfied with the intervention, and 93%
attended all sessions.10 A quantitative
and a qualitative study suggest that
physicians and health institutions are
supportive of pACP and that emergency
services are willing to accept ADs for
children.17,21
Two qualitative studies reveal benefits
of pACP experienced by parents and
adolescents.14,17 Parents of severely ill
children (2 months to 12 years) who
were interviewed on their experiences
with a pACP intervention found it
helpful in ensuring the best care,
providing time for discussions and
decision-making, facilitating the communication of their wishes to different
caregivers, and in providing peace of
mind.17 A qualitative study on young
patients with HIV-1 or cancer (16–28
years) reveals that the majority found
it helpful to discuss and document
their EOL wishes and that this made
them feel more cared for as a person.14
They especially appreciated being able
to make final arrangements for their
death and to leave a message to their
loved ones. The findings of 2 studies
reveal that most children’s treatment
plans met the wishes of the parents.16,17
Three studies suggest that common
fears about increasing distress in
patients through pACP may be unjustified.12,14,18 Young patients with HIV-1
or cancer (16–28 years) did not feel
really distressed by AD discussions,14
and 79% of 107 healthy or ill adolescents (15–18 years) felt comfortable
with discussing ADs.18 Adherence to
pACP did not have any negative longterm effects on the self-rated psychological well-being of HIV-infected
adolescents (14–21 years).12
Only 1 quantitative study investigated
physicians’ perspectives on pACP.21
Forty percent of 55 physicians felt
better educated in palliative care after
the implementation of a pACP program.
Needs of Patients and Caregivers
A consistent finding across different
studies is that up to 100% of patients
and surrogates wished to get more and
appropriate information and to participate in decision-making.13,15,16,19
Eighty-two percent of 76 parents of
children with special health care needs
(mean = 8.4 years) wanted their child
to participate in decision-making.16
PEDIATRICS Volume 131, Number 3, March 2013
Eighty percent advocated written
guidelines for critical life situations in
their children.16
Two studies investigated the wishes of
adolescents.14,19 In a quantitative study,
72% of 50 adolescent patients with
various illnesses (13–21 years) preferred to have earlier discussions
about EOL care in the course of their
illness.19 In a qualitative study, HIV-1
and patients with cancer (16–28 years)
made several suggestions regarding
an appropriate AD form, including an
open-ended format, issues on personal
comfort at the EOL, an optional section on spiritual issues, and the possibility to designate several surrogate
decision-makers.14
In 2 qualitative studies on patients with
muscular dystrophy (2–37 years), the
families expressed the wish for a better and more continuous support by
health care professionals and school
staff and for more help in communicating with the child.13,15 They felt that
establishing a trusting and ongoing
relationship with physicians would
help in addressing difficult questions.15
They also wished to establish a good
rapport with the bereavement worker
before bereavement.13
Four studies reveal that there is a need
to provide more information about
pACP.15,16,19,22 In a sample of 76 parents
of children with special health care
needs (mean = 8.4 years), 79% had no
understanding of ADs and 88% asked
for more information on this topic.16 In
another quantitative study, 44% of 50
adolescent patients (13–21 years)
were uncertain if their decisions were
revocable, and 26% were uncertain if
their AD would be honored.19 School
nurses only showed moderate knowledge about ADs.22
Perceived Problems With pACP
A major problem experienced by
parents is the discomfort of emergency
personnel with ADs for children, as
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revealed by 2 qualitative studies.13,17
Parents also struggle with disregard
from the community: they may have to
face refusals by schools to accept their
child’s AD, as well as negative reactions
from other people, and they even may
have to defend their child’s AD in
court.17
Two qualitative studies on parents of
patientswith musculardystrophy (2–37
years) reveal that some families have
difficulties thinking about a dismal future.13,15 Parents reported to cope with
their situation by denying reality and
avoiding thinking of the future and by
living in the moment.13,15 Discussing
medical treatment and shortened lifespan may be particularly distressing for some parents and adolescent
patients.14,15 In a follow-up of an RCT,
surrogates rated adolescents’ emotional and school-related quality of life
lower in the intervention than in the
control group. In addition, levels of HIVspecific symptoms were overall low
but tended to be slightly higher for
intervention adolescents regarding
rash and itching, fatigue, and trouble
sleeping.12
Only 1 quantitative study reveals problems from the perspective of professionals: just 3 of 214 school nurses
expressed their opposition to ADs in
schools in a free comments section;
reasons for their opposition were not
reported.22
DISCUSSION
Overall, the evidence is insufficient to
make definite conclusions about pACP.
The data suggest that pACP can be
implemented successfully. It may enhance positive emotions and facilitate
communication with the patient and
decision-making. Interventions are
perceived as helpful by families and
patients. However, patients and surrogates seem to have little understanding of pACP. Problems that persisted
within pACP were the discomfort of
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professionals with ADs and families’ reluctance to anticipate a dismal future.
There are few systematic pACP programs worldwide and none in Europe.
One program stems from the Respecting Choices (RC)23 research team
in La Crosse, Wisconsin, and is rendered by the same health care service
provider,17 whereas another has been
informed by RC.10–12 The RC approach
includes the following elements: (1)
timely discussions about future treatment preferences, facilitated by a
trained interviewer; (2) shared decisionmaking in line with the principles of
informed consent; (3) documentation
of the decisions in a significant and
valid AD; (4) distribution of the AD
to all relevant providers; (5) regular
review of the AD; (6) formal regulations on how to complete and deal
with ADs; (7) information of all care
providers; and (8) training of certified
facilitators and education of the
medical personnel.23 The pACP programs that we identified incorporate
each some of those aspects. Shared
elements are as follows: repeated
discussions with the parents, shared
decision-making, and the completion
of an AD. Only 1 program comprises
a curriculum for education of hospital
and community providers and distributes a child’s AD to all relevant
community care providers.21 Another
program is the only 1 to include certified facilitators that are trained
according to the RC competency
criteria.10–12 This program further
uses an adaption of the RC interview
for the discussions.
RC has been successfully implemented
in adult patient populations in the
United States and Australia, and repeatedly evaluated.2,3,7,24 Positive outcomes include a higher frequency and
availability of ADs, better quality and
acceptance of ADs, more respect for
patient preferences at the EOL, greater
satisfaction by patients and relatives,
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as well as reduced stress, anxiety, and
depression in the bereaved.2,3 Currently, a German adaptation is being
piloted in geriatric nursing homes.25,26
These experiences may inform the development of pACP. However, findings
on adult ACP may not always be
transferable to pediatrics, and research on pACP should focus more on
the particularities of the pediatric setting. Pediatric programs need to address the young patients, the parents,
and other family members, to include
specific EOL issues that are important
to them, to find regulations on when
and how to involve the child in the
discussions, to promote acceptation of
ADs for children by providing special
support for the care providers, and to
focus particularly on psychosocial
issues of EOL-planning. One study included in our review14 and a recently
published follow-up27 reveal that an
ACP document for adolescents with
a life-threatening illness should provide some particular characteristics:
developmentally appropriate wording
and explanation of key concepts (eg,
life support), specific questions on how
one would like to be remembered by
family and friends, on bequeathing
belongings and donating one’s body, as
well as a separate page for spiritual
wishes and an open page to write
letters. Incorporating those findings,
the performing research team has
developed an adaption of the Five
Wishes document,28 titled Voicing My
Choices.27
An interesting finding is that families
discuss future issues even without the
help of a professional facilitator.13,15,19
However, they seem to focus on nonmedical issues, which may be less
challenging. Those families may benefit
from qualified pACP that facilitates
discussions about more distressing issues, improves communication
quality, and promotes the completion
of an AD.2,3 Possible negative effects of
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pACP, such as the reduction in adolescents’ emotional and school-related
quality of life as reported by their
parents,12 should be further investigated. However, those effects may be
due to parents’ improved awareness
of the adolescents’ wishes and fears.
Evidence suggests that parents capture adolescents’ treatment preferences more accurately after pACP and
that the intrafamily communication
improves.11
There are no comparative studies on the
frequency of home deaths in children
with and without pACP. However, the
findings from 2 studies suggest that
pACP may lead to a higher frequency of
children dying at home.17,20 Future
studies should investigate whether
pACP includes discussions about the
preferred place of death and whether it
facilitates the care of the child at home.
A main limitation of this review is that
the included studies address different
patient populations, care settings, and
outcomes. Also, the studies present
major methodological shortcomings in
their design and reporting. Only 1 RCT
has been conducted but with methodological limitations. Lacking effects may
be due to the small and selective
sample. Most of the other studies involve
convenience samples and use nonvalidated instruments. In qualitative
studies, methods of analysis are insufficiently documented.
A core challenge to our systematic
approach was that there is no concordant notion of pACP in the literature.
This made it difficult to search for
studies and distinguish pACP from
other related or subsidiary practices
such as DNR orders and shared
decision-making. We may have missed
articles on pACP that use notions that
we did not include in our search. Also,
the limitation to English, German, and
French articles may have led to the
missing of some European studies and
thus bias our results.
Our review results are not necessarily
applicable to other populations and
care settings than those addressed by
the included studies. Several studies
focus on specific patient populations.
Also, the perspective of professionals
has been widely neglected. However,
this may be essential for a successful
implementation of pACP. Only 1 study
with school nurses has been performed
and reveals that there is hardly any
opposition toward ADs for children.22
This finding seems to contradict the
reports by parents that their child’s AD
was not accepted by the school.17 However, this highlights the need for the development of school policies regarding
ADs to facilitate their application.
One very new study that has been
published after our search deadline
addresses barriers to pACP from the
perspective of physicians and nurses.29
The main barriers reported are unrealistic clinical expectations by parents,
differences between physicians’ and
patients’ or parents’ understanding of
prognosis, reluctance of parents to
have pACP discussions, physicians’
concerns about taking away hope,
as well as their uncertainty about
prognosis and about how to address
the issue. In addition, 71% of physicians
felt that pACP happened too late. Future research should tie in with those
findings by investigating the needs of
all stakeholders: patients, families,
facilitators of pACP, and recipients of
ADs. Finally, we do not know if the 3
American pACP approaches that we
identified in our review are applicable
to other cultural and social contexts.
Studies on pACP in other countries are
needed.
ACKNOWLEDGMENTS
We thank our clinical and research
team for their support, and the research group of the Institute of Ethics,
History, and Theory, the Munich network
on palliative care research, as well as
the working group in qualitative research methods for their contribution
to the realization of the project.
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Pediatric Advance Care Planning: A Systematic Review
Julia D. Lotz, Ralf J. Jox, Gian Domenico Borasio and Monika Führer
Pediatrics; originally published online February 11, 2013;
DOI: 10.1542/peds.2012-2394
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PEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly
publication, it has been published continuously since 1948. PEDIATRICS is owned, published,
and trademarked by the American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk
Grove Village, Illinois, 60007. Copyright © 2013 by the American Academy of Pediatrics. All
rights reserved. Print ISSN: 0031-4005. Online ISSN: 1098-4275.
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Pediatric Advance Care Planning: A Systematic Review
Julia D. Lotz, Ralf J. Jox, Gian Domenico Borasio and Monika Führer
Pediatrics; originally published online February 11, 2013;
DOI: 10.1542/peds.2012-2394
The online version of this article, along with updated information and services, is
located on the World Wide Web at:
/content/early/2013/02/05/peds.2012-2394
PEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly
publication, it has been published continuously since 1948. PEDIATRICS is owned,
published, and trademarked by the American Academy of Pediatrics, 141 Northwest Point
Boulevard, Elk Grove Village, Illinois, 60007. Copyright © 2013 by the American Academy
of Pediatrics. All rights reserved. Print ISSN: 0031-4005. Online ISSN: 1098-4275.
Downloaded from by guest on June 14, 2017