has seen the principles of PFCC quickly permeate through all
areas of medicine, including pediatric surgery. Some may feel
CHAPTER 16
Patient- and
Family-Centered
Pediatric Surgical
Care
Sherif Emil
“I am a mother of a child who was born with trisomy 13. My
daughter died at home on April 13, 2010, at age 5, surrounded by her
loved ones. She was not supposed to live that long, but she had
great determination to beat the odds. During her last few months,
I was introduced to the supportive/palliative care service. This
program focused on helping her to live life to the fullest—her life, my
life, our family’s life. I wish there had been this program when she
was born. By focusing on the quality of her life, rather than trying to
fix things, my daughter would have had less hospitalizations and
more special time with us at home. She would have had better pain
management and would have been able to live life to the fullest,
which I believe she did during those last few months.”
Fundraising email sent by Rachel Llanos, mother of
Kellie Llanos, a child with trisomy 13 who died at age 5
after a plethora of medical and surgical interventions.
This is the first edition, in the long history of this illustrious
textbook, that dedicates a chapter to patient- and family-
centered care (PFCC). It is befitting, because the 21st century
that these principles are self-evident, politically correct terms
of what surgeons have always practiced. Although it is true
that a competent, empathetic, ethical surgeon with good
listening and communication skills is very likely to practice
PFCC, the concept is far more than one of competency, empa-
thy, or communication. Over the last 20 years, PFCC has
evolved into a health care discipline, with a significant volume
of research, publication, and programs. Systematic reviews
show that PFCC increases adherence to management pro-
tocols, reduces morbidity, and improves quality of life for
patients.1 This chapter aims to introduce surgeons to this rel-
atively new discipline and to emphasize the potential positive
impact PFCC can have on pediatric surgical practice.
Definition
------------------------------------------------------------------------------------------------------------------------------------------------
The Institute for Patient- and Family-Centered Care (IPFCC)
in Bethesda, Maryland is a non-profit organization that was
founded in 1992 with a mission to advance the understanding
and practice of PFCC and to partner with patients, families,
and health care professionals to integrate PFCC concepts in
all aspects of health care.2 The institute defines PFCC as an
innovative approach to the planning, delivery, and evaluation of
health care that is grounded in mutually beneficial partnerships
among health care providers, patients, and families. The core con-
cepts of PFCC are (1) respect and dignity, (2) information
sharing, (3) participation, and (4) collaboration.2 In a recent
technical report and policy statement, whose lead author is a
pediatric surgeon, the American Academy of Pediatrics (AAP)
deemed these same concepts essential to professionalism.3,4
The Institute offers a plethora of resources on its Web site,
and partners with practice groups and health care organiza-
tions to help integrate these concepts into the health care
environment. Some of the contrasts between traditional
medical care and PFCC are shown in Table 16-1.
Background
------------------------------------------------------------------------------------------------------------------------------------------------
In what is perhaps the oldest pediatric surgical textbook in
the English language, published in 1895, D’Arcy Power
wrote the following:
“When an operation has been decided upon, it will generally be
found that better results are obtained if the child be removed from
its accustomed surroundings and is placed in the charge of those
who have special experiences in nursing sick children. Only in very
exceptional cases can a mother be trusted to nurse her own child
after a serious operation, and in many instances the recovery of a
spoilt and fractious child is seriously retarded by the presence of
those who love it best. It is therefore acting in the best interests
of the child, to recommend that it should be placed in a surgical
home, or in the charge of an experienced children’s nurse.”5
This was essentially the paradigm for the surgical care of
children in the first half of the 20th century. In 1953, Robert
Gross included a section on “psychic preparation” for surgery
in his seminal pediatric surgical textbook.6 He challenged
the paradigm of the child’s separation from his family by em-
phasizing that abandonment “can seriously undermine the
247
248 PART I GENERAL

TABLE 16-1
Contrasts Between Traditional Care and Patient and Family-Centered Care
Traditional Care Patient- and Family-Centered Care
Doctor knows what is best for the patient Doctor and patient/parents together decide what is best for the patient
Exclusion of religious and cultural issues from medical decisions Inclusion of religious and cultural issues in medical decisions
Psychosocial issues are ignored or approached separately Psychosocial issues are included in the overall care plan of the patient
Parental role is minimized in overall care Parental role is optimized in overall care
Parental absence during invasive procedures, resuscitation, or Parental presence during invasive procedures, resuscitation, or anesthetic
anesthetic induction induction
Withholding of information, particularly regarding poor outcomes or Open and transparent information sharing, including admission of error or
complications adverse events
Minimal preoperative preparation Thorough preoperative preparation
Reactive approach to pain management Proactive approach to pain management
Separate specialty clinics for complicated diseases Multidisciplinary clinics for complicated diseases
Outcome studies analyze only physical or biological factors Outcome studies also analyze quality of life factors pertaining to patient and
family

faith of the child in his mother or father.”6 He emphasized the particularly in developed countries, find themselves practic-
importance of preoperative mental preparation at home and ing in increasingly multicultural settings. The forces of immi-
the role parents can play in the child’s surgical experience. gration and globalization have created many international
Dr. Gross’s desire for an enhanced familial role probably was cities and communities, where people of diverse cultures,
far ahead of the resources available at the time, because the faiths, beliefs, and economic circumstances seek surgical care
same chapter shows a postoperative child shackled to the for their children. The parents’ background and belief system,
bed by her wrists and ankles in order to receive intravenous in turn, influences their interaction with the medical system;
infusion.6 As pediatric surgeons continued to tackle and their expectations of medical personnel; and their decisions
win more surgical battles, their attention began to turn to psy- regarding their children’s health care. At times, the surgeon
chosocial issues surrounding pediatric surgical care. In the may find himself or herself at odds with the approach or
mid-1990s, Caniano ushered in the field of pediatric surgical the decision of the child and/or the parents. The surgeon does
ethics, inevitably bringing attention to family dynamics and not have to agree with the family. However, the principle of
“the big picture” during fetal consultation, management of respect implies recognition that rational people may hold
congenital anomalies, and pediatric surgical care in gen- opposing and irreconcilable views.8 The surgeon can demon-
eral.7,8 In the last decade, outcome studies for a variety of strate respect for the family and acknowledge their dignity
pediatric surgical conditions started to look at emotional by listening carefully, understanding their perspectives, and
and developmental results on the child, in addition to the attempting to see beyond his or her own personal experience.
physical ones. Recently, these outcome studies have begun Respect does not imply compromising the surgeon’s primary
to investigate the effects of interventions on parents and care- responsibility to his or her patient’s welfare. For example,
givers. In one recent study, Zaidi and colleagues investigated the AAP has repeatedly called for the equal application of legal
the caregiver’s perspective after esophagogastric dissociation interventions whenever children are endangered or harmed,
in neurologically impaired children with severe gastroeso- without exemption for actions based on religious beliefs.12,13
phageal reflux disease, arguing for a greater role for this It has also opposed religious or cultural practices, such as
procedure because of the unexpectedly high caregiver satis- ritual genital cutting of female minors, that consistently harm
faction.9 Another recent study looked past the typical out- children, and it has called on its members to actively dissuade
comes of treatment, to analyze the child’s emotional quality families from carrying out these practices.14
of life as well as the degree of parenting distress, in two arms
of a randomized controlled trial for perforated appendicitis
COMMUNICATION
with abscess.10 These types of studies are bringing to light
the concept that successful physical outcomes may not nec- We live in the age of information. Accurate and timely
essarily translate into the best patient and family-centered information sharing with patients and parents is one of the hall-
outcomes. Finally, Paice and colleagues recently raised the marks of medical practice in the 21st century. Parents of chil-
possibility of parental presence in the operating theatre.11 dren undergoing surgery desire comprehensive perioperative
Pediatric surgery has come a long way in 100 years! information. In fact, Fortier and colleagues recently reported
that the vast majority of children older than 7 years also desire
Core Concepts comprehensive information about their surgery.15 The respon-
------------------------------------------------------------------------------------------------------------------------------------------------ sibility for providing this information lies mainly with the sur-
geon, because it has been shown that information acquired from
RESPECT AND DIGNITY
elsewhere (general practitioner, books, popular magazines, In-
All persons should be treated with respect and regard for in- ternet) does not necessarily improve the parents’ understanding
dividual worth and dignity, including sensitivity to gender, of the child’s operative risk.16 Clinicians may feel an impetus to
race, and cultural differences, as well as maintenance of pa- withhold information, to decrease parental anxiety. This notion
tient confidentiality when appropriate.4 Pediatric surgeons, has been disproven by strong evidence.17,18
 CHAPTER 16
Information sharing is often used interchangeably with
communication. However, effective communication goes well
beyond information sharing, to include understanding, empa-
thy, compassion, transparency, and advocacy. One of the few
acts that require more trust than surrendering oneself to a sur-
geon is surrendering one’s child to a surgeon. This intense trust
is built on many factors, including the surgeon’s reputation and
competence, but none more important than effective commu-
nication. Good communication skills are essential core compe-
tencies that are associated with improved health outcomes,
better patient adherence, fewer malpractice claims, and
enhanced satisfaction with care.19 Communication obviously
serves the pediatric surgeon well on a daily basis, but certain
situations require particular attention to communication if
PFCC is to be provided. These include prenatal consultations,
planning for correction of congenital anomalies, relaying a
diagnosis of cancer, provision of end-of-life care, commu-
nicating the death of a child, and transmission of information
regarding surgical errors and adverse events.
Prenatal consultation with pediatric surgeons by parents
carrying a fetus with a congenital anomaly has become routine
in the developed world. Although these consultations have not
been proven to improve outcomes, they serve the vital purpose
of relaying information to the parents before the stressful events
of childbirth. They also help the surgeon establish early rapport
with the parents and start building a trusting relationship.
Parents are typically interested in more than a description of
the anomaly, its treatment, and its potential outcome. They
usually seek to learn what the future may hold for their baby,
including his or her potential social function and interaction
with family and society.8 Caniano and Baylis stress the impor-
tance of compassion in such interactions, particularly in situa-
tions where couples may choose to end much-wanted (and
sometimes difficultly acquired) pregnancies associated with
life-threatening fetal malformations, for which there are no
effective surgical interventions.8 After examining prenatal
surgical consultations for congenital diaphragmatic hernia
(CDH), Aite and colleagues found that 70% of patients found
it difficult to follow the surgeon’s explanations or ask questions
because of fear and other intense emotions.20 Interestingly, con-
sultations for lesions associated with better prognoses, such as
congenital cystic adenomatoid malformation, were less effective
in decreasing parental anxiety than consultations for CDH.21
The reasons for this were uncertainty about prenatal outcome
and lack of a defined management plan.21 These data point
to a possible deficiency in a single prenatal consultation, where
the surgeon relays all the pertinent information. Follow-up by
the surgeon or ancillary medical personnel after the initial
consultation may enhance communication in this regard.
The setting of surgically correctable congenital anomalies,
especially in the absence of prenatal diagnosis, presents an-
other communication challenge for the pediatric surgeon.
Families, even relatively sophisticated ones, often have never
heard of the anomaly and are overwhelmed by the notion that
their newborn baby can undergo and survive a major opera-
tion.22 Provision of written and illustrated material can signi-
ficantly enhance communication.20–22 Before the operation,
families are most interested in the description of the anomaly
and its prognosis, whereas after the operation, they are most
interested in the recovery process and assessment of the long-
term quality of life.22 Many congenital anomalies produce
permanent and profound effects on the family dynamic, with
PATIENT- AND FAMILY-CENTERED PEDIATRIC SURGICAL CARE 249
potential marital, social, and financial implications. In an
analogy to the five stages of grief described by Elizabeth
Kubler-Ross, Drotar and colleagues described five stages of
parental reaction after the birth of an infant with a congenital
malformation (Table 16-2).23 Understanding these stages can
allow the pediatric surgeon to effectively relate to the family in
the immediate perioperative period and beyond.
A new diagnosis of cancer presents a major crisis in the life
of the patient and family. Fortunately, most pediatric solid and
hematologic malignancies have better prognoses than their
adult counterparts. This could be mentioned early in the dis-
cussion, because most parents will automatically remember a
family member or loved one who died of cancer. The hospital
and community resources available to the family should be
clearly described, convincing the family that they will not
be alone during this difficult experience. The emotional state
of the parents is often associated with very poor receptiveness
and comprehension on their part when the diagnosis is
first relayed.24 Repetition and constant clarifications of treat-
ment plans and other details are typically necessary. Although
information should be shared liberally with the parents, and
often the child, the surgeon should remember that hope is
not statistical. Hope is often recognized as an important
component for healing; therefore, while remaining realistic
in the expectation of cure, the surgeon should not try to
remove all hope from the patient and family.
Communication with the family when the end of the child’s
life is in sight, or after the death of a child, presents particular
challenges to the surgeon, who often has to deal with his or her
own emotions. A sense of failing the child or family can inter-
fere with the surgeon’s ability to care for and comfort the fam-
ily, when cure is no longer possible. The physician needs to
find the strength to discuss life-threatening illnesses in an
open, sympathetic, and direct manner, because families resent
evasive or brief interactions.25 Researchers at Children’s Hos-
pital Boston have identified six parental priorities for end-of-
life care in the pediatric intensive care unit—namely, honest
and complete information, ready access to staff, communica-
tion and care coordination, emotional expression and support
by staff, preservation of the integrity of the parent–child rela-
tionship, and faith.26 One can see that most of these priorities
relate to communication. The pediatric surgeon’s role does not
end with the death of a child. The families a surgeon often
bonds with the most are the ones whose children’s funerals
the surgeon has attended. A pillar of American pediatric
surgery, Dr. Morton Woolley, chose the subject of a child’s
death as his last publication, in an attempt to help pediatric
surgeons provide appropriate responses when confronted
with the death of a child.27
Finally, communication, in general, and transparent com-
munication, in particular, is exceptionally important in
TABLE 16-2
Five Stages of Parental Reaction After the Birth of an Infant
with a Congenital Malformation23
Stage I Shock
Stage II Denial
Stage III Sadness and Anger
Stage IV Adaptation
Stage V Reorganization
250 PART I GENERAL
decreasing litigations.28 The American College of Surgeons
Closed Claims Study identified failure to communicate as the
major cause of litigation in 22% of claims.29 The adverse conse-
quences of these failures included medical errors, escalation of
the consequences of otherwise nonpreventable adverse events,
and anger or mistrust even when the standard of care was
met. A policy of transparent disclosure of error with an apology
or expression of regret when preventable adverse events were
identified, coupled with an offer of reasonable compensation,
has been shown to dramatically decrease medicolegal costs.30
Effective communication between health care team members
is also essential in providing PFCC to complex pediatric patients.
In one study, Meltzer and colleagues found that physicians, faced
with difficult patients or families, were more likely to distance
themselves or refer the family to the psychosocial profession,
while nurses were more likely to consult with colleagues.31
Communication skills and relational abilities in pediatric health
care can be significantly improved by formal training.19
PARTICIPATION
Surgery is often described in terms of doing things to patients,
and not with patients. It is not surprising, therefore, that
the patient’s and family’s active participation in the surgical
experience has constituted the most controversial aspect of
PFCC over the past 2 decades, a period that has seen a flurry
of research into issues such as preoperative family preparation,
parental presence during induction of anesthesia (PPIA), and
parental involvement in the choice of potentially anxiolytic
preoperative and postoperative maneuvers. Preoperative anx-
iety in young children undergoing surgery is associated with
more pain during the recovery period, as well as higher inci-
dences of emergence delirium, postoperative anxiety and sleep
disturbance, and postoperative maladaptive behavior.32,33 The
parents’ preoperative anxiety may also influence outcomes.
For example, many mothers who exhibit a high desire to be
in the operating room are also very anxious, and their children
are likely to exhibit high anxiety levels during induction of
anesthesia.34 Interventions to decrease the mother’s anxiety
during PPIA were found to also decrease the child’s anxiety
on entrance to the operating room and during introduction
of the anesthesia mask.35 Most of the research, therefore, is
aimed at identifying maneuvers that may decrease child and
parental anxiety during the perioperative period, outcomes
that are understandably difficult to assess. Nevertheless, mul-
tiple scales, such as the Motivation for Parental Presence dur-
ing Induction of Anesthesia (MPPIA),34 the Yale Preoperative
Anxiety Scale (mYPAS),36 and the Child-Adult Medical Proce-
dure Interaction Scale,37 have been developed in an attempt to
provide some objective data. Chorney and Kain have recently
presented a comprehensive model of family-centered pediatric
perioperative care.38 This model covers the preoperative,
intraoperative, and postoperative environments, and includes
family factors, such as anxiety and previous medical experi-
ence, as well as provider and system factors, such as training
and organizational policy.38
Preoperative Preparation
Most children’s hospitals currently have some type of pre-
operative preparation program for surgical patients. These
programs generally include an orientation to the operating
room (OR), a description of the anticipated events on the
day of surgery, and, in some instances, psychological prepara-
tion of the parent and pediatric surgical patient.39,40 Certain
patient factors identified during the preoperative preparation,
such as age, previous anesthesia, and anxiety level, have been
found to predict poor behavioral compliance during inhaled
induction.41 These factors may help identify children who
could benefit from behavioral or pharmacologic interventions.
Targeting the parents in such programs is also important, be-
cause there is evidence that the parents’ anxiety on the day of
surgery is highly associated with the child’s anxiety.42 During
the preoperative visit, options such as PPIA may be discussed,
if available in the institution. These visits also afford the anes-
thesiologist an opportunity to assess the family as a whole and
formulate a plan for induction. For example, a preoperative
assessment of the anxiety level of parent and child, in addition
to other specific factors, such as age, temperament, and
coping style, were found to predict which child-parent pair
is likely to benefit from PPIA.43,44 Kain and colleagues have
performed two randomized controlled trials to assess the
value of preoperative preparation.45,46 In the first study, an
extensive preoperative program (OR tour þ videotape þ
child-life preparation), produced limited anxiolytic effects,
which were seen only in the preoperative period and did
not extend to induction or postoperative recovery.45 In a more
recent study, an ADVANCE program (Anxiety reduction, Dis-
traction, Video modeling and education, Adding parents, No
excessive reassurance, Coaching, and Exposure/shaping) was
compared with three other arms: standard of care, PPIA, and
oral midazolam. The ADVANCE program resulted in multiple
improved outcomes for children and parents.46 Children in
the ADVANCE group exhibited a lower incidence of emer-
gence delirium, required significantly less analgesia in the
recovery room, and were discharged from the recovery room
earlier than children in the three other groups.46 A more
recent Brazilian study also showed improvement in anxiety
levels and behavior during the postoperative period in
children who received preoperative psychological prepara-
tion prior to undergoing elective surgery.40
Intraoperative Period
The main controversy surrounding PFCC during the intrao-
perative period is PPIA. PPIA was an almost natural extension
of increased parental participation and presence during criti-
cal procedures on their children, including trauma resuscita-
tions, emergency room resuscitations, bedside invasive
procedures, and cardiopulmonary resuscitations. Many of
these situations also involve the pediatric surgeon. This move-
ment has significantly grown in strength in the last quarter
century. Parental presence during these procedures, in many
institutions, now occurs routinely. Although there are no re-
search studies that point to a patient benefit if the family is pre-
sent, there appears to be at least a major psychological benefit
to the family. Research suggests that families want to be given
the option to be present during invasive and resuscitative
procedures, and they often choose that option.47–49 Those
who are present generally report favorable experiences.47 Par-
ents who witnessed a terminal medical event involving their
child in the pediatric intensive care unit (PICU) were less dis-
tressed than those who did not and felt that their presence
helped them cope with their child’s death.48,49 Family
 CHAPTER 16
presence has not been found to prolong time to computed
tomography (CT) imaging or to resuscitation completion
for pediatric trauma patients.50 Uninterrupted care can be
delivered with the family present.51 Physicians and nurses
have become increasingly comfortable with family pre-
sence in critical situations.47,52–55 Major professional organi-
zations, including the AAP and the American College
of Emergency Physicians, have endorsed the practice.56–58
However, many do not see PPIA as a natural extension of pa-
rental presence during other clinical scenarios. Critics of PPIA
cite decreased OR efficiency, additional staffing requirements,
increased cost, and possible medico-legal implications as
potential arguments against its practice. There are no data to
support these arguments. On the other hand, data regarding
positive outcomes of PPIA are also mixed. Kain and colleagues
reported several randomized trials of PPIA over the past 15
years.59–63 In the first study, published in 1996, PPIA did not
reduce any behavioral or physiologic measures of anxiety dur-
ing induction.59 A benefit was seen in specific subgroups of
children when cortisol levels were measured, an outcome
of questionable clinical significance.59 In another study, oral
midazolam was superior to PPIA in reducing anxiety and in-
creasing compliance of the child during the perioperative pe-
riod.60 Interestingly, that study also showed that parents of
children in the midazolam group had lower anxiety scores after
separation from their children.60 In a study comparing oral
midazolam alone to oral midazolam plus PPIA, children in both
arms exhibited similar levels of anxiety.61 However, parents in
the PPIA arm had lower self-reported anxiety scores and higher
satisfaction stores.61 The physiologic effects of PPIA on parents
were specifically investigated in another trial, which found that
parents in the PPIA arms, regardless of whether a sedative was
also given to their child, manifested a significantly higher phys-
iologic stress response during induction (increased heart rate
and skin conductance level), than parents in the control
arm.62 The most recent study investigated the presence of
one versus two parents during induction.63 The presence
of two parents did not affect observed child anxiety, but re-
duced parents’ self-reported anxiety.63 Chundamala and col-
leagues recently published a comprehensive evidence-based
review of the effects of PPIA on parent and child anxiety and
concluded that, contrary to popular belief, PPIA does not ap-
pear to alleviate parents’ or children’s anxiety.64 These authors,
from Toronto’s Hospital for Sick Children, raise the possibility
that PPIA may be driven by market forces and hospital compe-
tition in the United States. The use of PPIA has certainly grown
in the United States.65 However, the practice is far more fre-
quent in Britain, where support for PPIA is dramatically higher
than in the United States among both anesthesiologists and
pediatric surgeons.66,67 In fact, the practice has become so rou-
tine in Britain, that some are raising the possibility of parental
presence during the surgical procedure.11 One would be hard
pressed to cite the market as the driving force for PPIA in
Britain. Chorney and Kain, with practices in very different
health care settings (Halifax, Nova Scotia and Orange County,
California), argue that the focus on efficacy data has misguided
the debate over PPIA.38 They stress that PPIA is overwhelm-
ingly preferred by parents, increases parental satisfaction,
and improves hospital public relations.38 Some parents may
see it as a basic right.
PPIA is an instrument that may work well for many, but not
all, families. Medical personnel are therefore encouraged to
PATIENT- AND FAMILY-CENTERED PEDIATRIC SURGICAL CARE 251
respect the family’s decisions and preferences.38 There is
undoubtedly a strong demand for this option. The number of
parents in our practice who are asking for PPIA is exponentially
increasing. The demand is particularly strong among parents
whose children have undergone prior surgery with or without
PPIA.68 PPIA is therefore not a passing fad, but rather a practice
well on its way to becoming a standard of care.
Postoperative Care
Postoperative care and recovery are facilitated if adequate pre-
operative preparation is given and a positive intraoperative
surgical experience ensues.38,40,69 A quick reunion with the
parents in the recovery room now occurs routinely. Daily, clear
updates to the parents of hospitalized children are a must.
When pediatric surgery fellows or other house staff are part
of a surgical service, a special effort should be made to give
the patient and parents clear and nonconflicting information.
Inadequate pain management is of utmost concern to the child
and parents. This should be addressed appropriately, and pre-
emptively, when possible. If the child is on a treatment proto-
col or algorithm, the relevant details and end points should be
clearly explained to the parents. Support for the parents and
the child during recovery at home is also essential. Home
health care resources should be mobilized as early as possible
to allow the child to continue care at home, when it is deemed
appropriate and safe. Clear and detailed discharge instruc-
tions should be given both directly and in writing. Some data
suggest that many children do not receive optimal pain man-
agement at home after day surgery.70 A follow-up phone call
from the surgeon or nurse during the first 72 hours after day
surgery is highly appreciated by the parents. In the late 1990s,
reports of successful phone follow-up for select pediatric sur-
gical operations, with the intent to provide convenient and
cost-effective care, appeared in the literature.71,72 Following
these reports, our service began an active phone follow-up
program for the majority of day surgery cases and many simple
inpatient cases (e.g., nonperforated appendicitis, pyloric
stenosis).73 This has been extremely popular with parents,
because it avoids an unnecessary postoperative visit, while
identifying those patients who require or request follow-up.
More recently, a 90% satisfaction rate has been reported with
a similar strategy.74
COLLABORATION
Collaboration can be best defined as a health care environ-
ment that regards the parents and family as health care team
members, and not spectators. In fact, the family should be
seen as the most consistent and permanent member of the
health care team, because nurses, ancillary medical staff, social
workers, and even the attending staff surgeon may change
from time to time. This concept is often referred to in the
literature as partnership—the physician and health care team
partnering with the family to provide the best care possible
to the patient. This is not such a new or modern concept.
Surgeons who have practiced in missionary settings or under-
developed countries will attest to the huge role the family
plays in the active medical care of the patient.
Partnerships are formed when the health care team values
the information given by parents, actively seeks their input in
decisions affecting their child, acknowledges their positions
252 PART I GENERAL
TABLE 16-3
Montreal Children’s Hospital Division of Pediatric General
Surgery Pledge to Patients and Families
We will treat every child and family with dignity, compassion, and
respect.
We will draw on the expertise of the entire team and other hospital
services to offer the best care to each child.
We will discuss with patients and families all relevant alternatives for
treatment.
We will serve as advocates for each child within the health care system.
We will keep patients and families fully informed of the treatment plan,
and address concerns in an open and honest manner.
TABLE 16-4
PFCC Best Practices in Pediatric Surgery
A commitment to respect the culture, faith, and belief system of each
family, while always advocating for the child’s best interests
A commitment to keeping the patient and family united as long as
possible during the perioperative period
Inclusion of family advisors as partners in facility design of surgical
waiting rooms and perioperative areas
Inclusion of family advisors in the review and formulation of surgical
documents, including preoperative instructions, consent, and
discharge forms
Encouragement of families to ask questions, share concerns, and offer
feedback to surgeons, anesthesiologists, and surgical staff
Open, honest, and continuous sharing with families of procedural risks
and safety precautions
Provision of information to families on how they can actively partner
with staff to reduce risks and optimize outcomes
Provision of information to families on pain management and
recruitment of their feedback on its efficacy
Provision of information to families on the roles and responsibilities of
the members of the surgery team, as well as clear instructions on who
to contact for questions and concerns
Open and honest disclosure of surgical complications and adverse
events
and concerns, and acts on their feedback. The United States
Maternal and Child Health Bureau defines a positive
family–provider partnership as a core program outcome.75
Denboba and colleagues found that a sense of partnership
between the families of children with special health care needs
and their physicians was associated with improved outcomes
across a number of important health care measures.75 How-
ever, poverty, minority racial and ethnic status, and absence
of health insurance placed families at elevated risk of being
without a sense of partnership.75 An extra effort, therefore,
is needed to build partnerships with certain at-risk popula-
tions. Partnerships are also created when parents feel that they
have full access to the health care team. Parents who desire to
meet with the entire tumor board, fetal diagnosis and treat-
ment group, or any other multidisciplinary treatment team,
to obtain comprehensive information, should be encouraged
and invited. Partnerships can also be integrated into daily pa-
tient care. An example comes from Cincinnati Children’s Hos-
pital, where families can choose to be part of attending
physician rounds.76 Integration of the family into multidisci-
plinary rounds was found to require an additional 2.7 minutes
per patient and affect the medical decision-making discussion
in 90% of cases—an excellent investment!77 Collaboration is
particularly important in the long-term care of pediatric sur-
gical patients with congenital anomalies, such as imperforate
anus or esophageal atresia, which become lifelong chronic
medical conditions after repair. Rahi and colleagues recently
offered a detailed and practical account of how a support pro-
gram for children with a newly diagnosed lifelong disability
can be built in collaboration with family, counselors, and
health care personnel.78
Putting It All Together: PFCC
in Action
------------------------------------------------------------------------------------------------------------------------------------------------
Many individual surgeons, surgical practices, and institutions
apply the principles of PFCC intuitively. However, an inten-
tional commitment to PFCC can have a transforming effect
on pediatric health care. Our hospital, like most children’s
hospitals, saw itself as a child- and family-friendly hospital.
However, after a visit from a national leader and advocate of
PFCC in October 2009, the hospital made a firm commitment
to examine its practices and traditions. Such examination
showed ample potential for growth in PFCC. Specific actions
included the formation of a PFCC working group, with
representation from all areas of the hospital, stronger collab-
oration with the hospital’s family advisory forum and their
inclusion in planning and policy making, the hiring of a PFCC
coordinator to act as a liaison between the hospital and fam-
ilies, and taking PFCC issues into account in the design and
building of a new hospital. Within our Division of Pediatric
General Surgery, we adopted a new mission statement that
reflects a strong commitment to PFCC, as well as a pledge
to patients and families (Table 16-3). The mission statement
and pledge are included in a color brochure that provides core
information about our services and our staff, which is given
to all families who come in contact with our division. A color
chart containing the names and pictures of all members of the
pediatric surgical service, including students, residents, and
fellows, is also given to all admitted patients so that families
are always clear about the roles of each member of the team.
Our surgery and anesthesia departments started to investigate
the incorporation of PPIA into the OR culture and to explore
other ways of enhancing the role of parents in the operative
experience.
A list of 10 PFCC best practices, relating to pediatric
surgery, is shown in Table 16-4. These are practical steps that
can be taken to apply the principles discussed in this chapter.
In addition, the Web site of the IPFCC has many additional
concrete examples of PFCC in action from children’s hospitals
throughout the United States that have been leaders in the
adoption of PFCC principles and practices.2 These principles
and practices are as important to the psychosocial aspects of
pediatric surgical care in the 21st century as evidence-based
medicine is to the biological aspects.
Acknowledgments
The author is grateful to Juliette Schlucter, who is a parent of two chronically
ill children and a patient- and family-centered care consultant, for sharing her
experience, inspiring this chapter, and reviewing the manuscript.
The complete reference list is available online at www.
expertconsult.com.