Running head: PEDIATRIC PALLIATIVE CARE
Pediatric Palliative Care: A Quality Improvement
Recommendation
Melinda L. Williams
East Carolina University
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PEDIATRIC PALLIATIVE CARE
PEDIATRIC PALLIATIVE CARE: A QUALITY IMPROVEMENT RECOMMENDATION
By
MELINDA L. WILLIAMS
Submitted in partial fulfillment of the requirements for the degree of Doctor of Nursing Practice
Submitted to the Graduate School
East Carolina University School of Nursing
December 2015
Committee Chair: Michelle Skipper, DNP, FNP – BC
_____________________________
Committee Member: Tara Bastek, MD, MPH
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Community Committee Member: Susan Redding, MSN, FNP – BC
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Director of DNP Program: Bobby Lowery, PhD, FNP – BC, FAANP
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PEDIATRIC PALLIATIVE CARE
ABSTRACT
In the United States, there are greater than 500,000 infants and children living with a lifethreatening or life-limiting condition (Williams-Reade et al., 2015). Advances in healthcare
allow children with life threatening or life limiting conditions to live longer than they have in the
past. However, each year at least 55,000 children die, with approximately eighty percent of
these deaths occurring in hospital setting (Keele, Keenan, Sheetz & Bratton, 2013). According to
the American Academy of Pediatrics (2013), children with life threatening or life-limiting
illnesses should have access to competent, compassionate, and developmentally appropriate
palliative care that is initiated at time of diagnosis. Pediatric palliative care is a relatively new
discipline with limited research and specialized training consequently, not all healthcare
institutions have a dedicated program (Stayer, 2012). This author’s project focused on a quality
improvement initiative that utilized a formal organizational review to identify a need for
pediatric palliative care services followed by synthesis and dissemination of the findings to
encourage the development of an inpatient pediatric palliative care program.
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ACKNOWLEDGEMENTS
The formulation, implementation and completion of my Doctor of Nursing Practice
project was supported through the ongoing support and encouragement from my family, friends
and classmates. The completion of my project was further facilitated by the advice, reassurances
and ongoing encouragement from my committee members and faculty members at East Carolina
University. Successful completion of my Doctor of Nursing Practice degree would not have been
possible without the unending support and encouragement of each family member, friend,
classmate, committee member and faculty…I thank each and every one of you.
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PEDIATRIC PALLIATIVE CARE
Table of Contents
Title Page . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Abstract . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Chapter I . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Purpose Statement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Justification of Project . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .8
Theoretical Framework . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Assumptions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Project Question . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .12
Definition of Terms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .13
Chapter II . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .14
Research Based Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
Introduction and Purpose . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .14
Research of Literature . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .19
Chapter III . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20
Design . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .20
Setting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21
Sample . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21
Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .21
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Budget and Cost . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22
Protection of Human Subjects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
Instruments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
Data Collections . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
Data Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .25
Limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
Chapter IV . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .27
Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
Sample Characteristics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .27
Major Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
Chapter V . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .37
Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .37
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37
Implications of Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
Limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43
Delimitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .44
Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46
Appendix A: East Carolina University IRB Approval . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .48
Appendix B: WakeMed Health and Clinics IRB Approval . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .50
Appendix C: Focus Group Consent Form . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51
Appendix D: Data Abstraction Form . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55
Appendix E: Focus Group Discussion Questions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .56
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Appendix F: Project Timeline . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57
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PEDIATRIC PALLIATIVE CARE
Pediatric Palliative Care: A Quality Improvement Recommendation
Chapter I
Introduction
Advancements in neonatal and pediatric healthcare have led to increased survival rates of
infants and children with life threatening and life-limiting conditions. Despite this reality,
palliative and end of life care is not always readily offered or available to this patient population.
This is usually a result of lack of development of pediatric and neonatal palliative and hospice
care as compared to adult hospice and palliative care. The unavailability of hospice and
palliative care prevents pediatric patients from benefitting from improved quality of life,
treatment for pain and other physical symptoms and prevents families from receiving
psychological and spiritual support needed following a life altering diagnosis. If neonatal and
pediatric health care continues to improve survival rates of infants and children with life
threatening and life limiting conditions, then this same advanced healthcare must also provide
palliative and hospice care to infants, children and their families (Field & Behrmen, 2003)
(Stayer, 2012).
Palliative care as a concept first appeared in medical literature in 1982. The United
States (U.S.) and Europe have shown the most concern for and interest in pediatric palliative care
than any other countries. Pediatric palliative care has evolved primarily from adult palliative
care models beginning in the 1970s. The emergence of Family Centered Care in the 1960s and
1970s may have also promoted the evolution of pediatric palliative care. Family Centered Care
supports family participation, family bonding and developmentally appropriate care, which are
important components of a palliative care program (Balaguer, Martin-Ancel, Ortigoza-Escobar,
PEDIATRIC PALLIATIVE CARE
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Escribano, & Argemi, 2012) (Kovacs, Betlin & Fauri, 2006) (McNamara-Goodger & Feudtner,
2012).
Historically, pediatric palliative care has not advanced to the degree of adult palliative
care. This discrepancy is due to a distinct lack of training, knowledge and research associated
with pediatric palliative care which is a result of its moderately new and evolving status.
Furthermore, this lack of training, knowledge and research along with limited cost-benefit
analysis, cultural disparities, and ethical and moral dilemmas has created barriers to the provision
of pediatric palliative care in many healthcare settings.
Research on pediatric palliative care reveal definite incongruences between knowledge
about adult palliative care and pediatric palliative care. There is substantial more information on
adult palliative care versus pediatric palliative care. Additionally, there appears to be a lack of
formalized training programs, universal standards of care, and inconsistent availability of
pediatric palliative care worldwide.
Purpose Statement
The purpose of this project was to identify a need for a pediatric palliative care program
at a substantial level I trauma center in a large metropolitan area. This organization supports the
highest-level Neonatal Intensive Care Unit, the county’s only Pediatric Intensive Care Unit, a
pediatric inpatient unit and a dedicated children’s emergency department (WakeMed, n.d.). A
vast majority of children’s deaths attributed to life threatening or life-limiting conditions occur in
the hospital setting and pediatric palliative care is a critical component of quality hospital health
care for these children and their families (Bogetz, Ullrich, & Berry, 2014) (NHPCO, 2009). This
organization is dedicated to providing high quality health care through the promotion of patient
and family centered care and through innovation and exemplary practice supported through
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research and quality improvement initiatives. The attributes of this practice setting support the
purpose and goals of this project.
Justification of Project
Children with life threatening or life-limiting conditions experience physical and
psychosocial suffering, their families require psychosocial and spiritual support and health care
providers need specialized education and training in order for them to meet the physical and
psychosocial needs of these children and their families (Initiative for Pediatric Palliative Care,
2014). Pediatric palliative care programs facilitate the delivery of competent, compassionate and
consistent care to children with life threatening or life-limiting conditions. These programs also
improve health care providers’ skills and knowledge and provide support to further enhance the
delivery of care that meets the physical, emotional, cultural, spiritual, and psychosocial needs of
children with life-threatening illnesses and their families (Stayer, 2012).
Since 2004, children with life threatening or life-limiting conditions constitute the fastest
rising number of patients to utilize children’s hospitals and by 2010, they comprised
approximately one-third of the patients and one-half the inpatient costs in children’s hospitals
(Bogetz, Ullrich, & Berry, 2014). The World Health Organization (WHO), the American
Academy of Pediatrics (AAP), and the Institute of Medicine (IOM) strongly encourage progress
and development of palliative care programs to improve palliative and bereavement care for
children and their families (WHO, n.d., AAP, n.d., IOM, 2003). Health care providers must
create a model of care where children’s physical, social and psychological suffering is relieved
and psychosocial support is given to the family.
The project site supports the highest-level Neonatal Intensive Care Unit, the only
Pediatric Intensive Care Unit, and the only dedicated children’s emergency department in it’s
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county. It also has a large pediatric inpatient unit. This organization serves approximately
140,000 pediatric patients per year (WakeMed, n.d.). With these services and pediatric patient
volumes, there are children who would potentially benefit from a pediatric palliative care
program. However, at this time, the number of children who would benefit is unknown.
Furthermore, it is unclear if the pediatric interprofessional health care teams of this organization
desire a pediatric palliative care program. Before the introduction of a pediatric palliative care
program at this organization, this project must be completed to determine if the hospital serves a
population that would potentially utilize palliative care services and if the interprofessional
health care teams want and would utilize these services.
Theoretical Framework
The foundation of palliative care is family centered care (FCC). FCC is a concept that
emerged as a “result of the increased awareness of the importance of meeting the psychosocial
and developmental needs of children and the role of families in promoting the health and wellbeing of their children” (Pettoello-Mantovani, Campanozzi, Maiuri, & Giardino, 2009, p. 1).
A child’s overall health can be positively influenced through their family’s ongoing support and
involvement in the provision of the child’s healthcare. Infants and children with life limiting or
life threatening conditions may be unable to advocate for themselves, therefore they need their
family’s ongoing advocacy to ensure their spiritual, psychosocial and physical care is competent,
compassionate, beneficial and just. Furthermore, if parents are not encouraged and supported to
actively participate and partner in the provision of their child’s healthcare, they may experience
emotional and physical pain. Ultimately, FCC can facilitate the family’s understanding of their
child’s diagnoses, determine goals of care and provide care that supports medical veracity while
supporting the family’s beliefs, needs and priorities (Field & Behrman, 2003).
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The Institute for Patient and Family-Centered Care (IPFCC), a non-profit organization,
promotes FCC by providing resources for policy makers, administrators, program planners,
direct service providers, educators, design professionals, and patient and family leaders. The
IPFCC promotes FCC to facilitate collaboration and relationships among patients, families, and
health care professionals and to facilitate patient- and family-centered change in organizations
where patients and families receive care and support. FCC has been described by IPFCC as an
approach to the planning, delivery, and evaluation of health care that is grounded in mutually
beneficial partnerships among health care providers, patients, and families to promote the health
and well-being of individuals and families and restore dignity and control to them (IPFCC, 2011)
(O’Malley, Brown, Krug & the Committee on Pediatric Emergency Medicine, 2008).
Children and their families typically have fundamental belief and value systems, which
defines illness, life, and death. These beliefs and values influence the care of a child with life
threatening or life limiting conditions. Life threatening or life limiting conditions influence and
affect a child and their family. These relationships support the integration of FCC within the
provision of pediatric palliative care (Bartell & Kissane, 2005). FCC along with pediatric
palliative care support the physical, psychosocial, emotional and spiritual needs of children with
life limiting or life threatening conditions and their families. Essentially, FCC and pediatric
palliative care together create a compassionate and holistic environment that allows the
interdisciplinary health care team to support and care for the physical, mental and spiritual needs
of children and their families. See Figure 1.
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Figure 1. Model for pediatric palliative care. This figure illustrates the relationship between
Family Centered Care and Pediatric Palliative Care. Model created by author.
Assumptions
The assumptions of this project were that there would be significant data to identify a
need for a pediatric palliative care program. The project site provides services to a high volume
of pediatric patients and the data collection should have revealed a significant number of
pediatric patients that would have qualified for and benefitted from palliative care services.
Additionally, there is a large interprofessional team consisting of neonatologist, pediatricians,
advanced practice nurses, social workers, chaplains, psychologists, child life specialist and
developmental specialist who care for these patients. Based on the nature of their disciplines,
these team members should have confirmed that there is a need for a pediatric palliative care
program at this organization.
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Project Question
I. Is there a need for an inpatient pediatric palliative care program at an organization that
provides neonatal and pediatric inpatient health care and specialty services?
This question was answered by determining how many patients at the project site would have
qualified for palliative care services in the past and by determining if the pediatric
interprofessional teams were interested in partnering with a palliative care program. Information
was gathered through a retrospective chart review to determine the number of pediatric inpatient
deaths that occurred during a specific time period and decide if they met criteria for palliative
care services and through focus group discussions with the pediatric interprofessional teams.
Definition of Terms
The World Health Organization (WHO) has defined palliative care as an intervention that
can enhance the quality of life of infants and their families experiencing life threatening and life
limiting conditions “through the prevention and relief of suffering by means of early
identification and impeccable assessment and treatment of pain and other problems, physical,
psychosocial and spiritual” (n.p.). The American Academy of Hospice and Palliative Medicine
(AAHPM) states that “palliative care is for people of any age, and at any stage in an illness,
whether that illness is curable, chronic or life-threatening” (AAHPM, n.d., n.p.). The American
Academy of Pediatrics (AAP, n.d.) defines palliative care as care focusing on “pain and
symptom management, information sharing and advance care planning, practical, psychosocial
and spiritual support, and coordination of care” (n.p.). Essentially, palliative care in the hospital
setting is a model that focuses on children and their families to relieve distress, promote the best
quality of life possible, support family informed decision-making and facilitate care
coordination. The foundation of palliative care is family centered care.
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Family centered care is “a mutually beneficial partnership between health care providers,
patients and families” that can be applied to any age and practiced in any setting (Shields, 2010,
p. 2629). Another definition according to Shields, Pratt & Hunter (2006) is FCC is a “way of
caring for children and their families within health services, which ensures that care is planned
around the whole family, not just the individual infant, and in which all the family members are
recognized as care recipients,” (p. 1318). The Institute of Family Centered Care (2011) defines
FCC as a process to plan, deliver, and evaluate health care that is based on mutually
advantageous partnerships between health care providers, patients, and families to promote the
health and well-being of children and their families to restore their dignity and control.
This project refers to children with life limiting or life-threatening conditions. These
conditions include but are not limited to genetic and congenital disorders, neurologic disorders,
cancers and tumors, cardiovascular disorders, metabolic disorders, immunologic disorders, renal
disorders and gastrointestinal disorders. Accidental trauma, for the purpose of this project, is
defined as a condition resulting from an accident such as motor vehicle, bicycle or other means
and not as a result of a medical condition defined under life limiting or life threatening
conditions. Children or child will refer to an individual day of birth to eighteen years old.
Summary
This project determined if there is a need for an inpatient pediatric palliative care
program at a large hospital that provides inpatient specialty services to a large neonatal and
pediatric population. This project will in essence be a quality improvement initiative to promote
the hospital’s organizational goal of providing high quality health care through patient and
family centered care through exemplary practice supported through research. Current research
demonstrates that children with life limiting and life threatening conditions and their families
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PEDIATRIC PALLIATIVE CARE
who have access to palliative care programs have improved quality of life, receive appropriate
treatment for pain and other physical symptoms and families receive psychosocial and spiritual
support. Furthermore, the AAP, the IOM and the WHO strongly encourage the development of
pediatric palliative care programs to enhance and promote quality health care delivery to this
unique pediatric population.
Chapter II
Research Based Evidence
Introduction and Purpose. Advancements in health care have led to increased survival
rates of infants and children with life threatening and life-limiting conditions. Each year in the
United States, at least 53,000 children die and fifty-five percent of these children are younger
than one year old (Moody, Siegel, Scharbach, Cunningham and Candor, 2011). Furthermore, a
majority of children’s deaths attributed to life threatening or life-limiting conditions occur in the
hospital setting. (Bogetz, Ullrich, & Berry, 2014) (NHPCO, 2009). Despite this reality, palliative
and end of life care is not always readily offered or available to these neonatal and pediatric
patients. This is usually a result of lack of development of pediatric palliative care as compared
to adult palliative care. The unavailability of palliative care prevents children from benefitting
from improved quality of life, treatment for pain and other physical symptoms and prevents
families receiving psychological and spiritual support they need during this difficult period of
time. If advanced health care continues to improve survival rates of children with life
threatening and life limiting conditions, then palliative care must be provided to children and
their families to alleviate psychological, social and physical distress. The purpose of this project
was to determine the need for an inpatient pediatric palliative care program at a large hospital
that provides neonatal and pediatric inpatient specialty services.
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Research of Literature. A review of the literature was conducted utilizing research
databases Medline, Cumulative Index of Nursing and Allied Health (CINAHL), OVID and
PubMed. The following keywords were used: “pediatric palliative care” and “palliative care” in
combination with at least one of the following: “neonatal”, “ infant”, “children”, “adult”, “lack
of”, “family centered care”, “life limiting conditions”, “life threatening conditions”, “end of
life”, “barriers”, “hospital costs”, and “cost effectiveness” Other search terms included “focus
groups” and “retrospective chart review”. Sixty-two articles were retrieved from the databases
using the keywords and ultimately thirty-three articles were identified as being relevant to the
project. Inclusion criteria were: published in English language, location of study or research was
in the United States, date of publication 2000 – 2015, full text available, and topic and content
directly correlated to pediatric palliative care and the focus of the investigator’s project.
Other resources utilized were specific organizations that focused on pediatric palliative
care. These organizations are as follows: The American Academy of Pediatrics, the World
Health Organization, the Institute of Medicine, the Institute for Patient and Family Centered
Care, the Center to Advance Palliative Care, the American Academy of Hospice and Palliative
Medicine, the National Hospice and Palliative Care Organization, and the Initiative for Pediatric
Palliative Care. These organizations support dedicated websites and provide publications and
position and policy statements that are reputable sources of information to complete an in depth
review of the most current research and recommendations related to pediatric palliative care.
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Palliative care as a concept first appeared in medical literature in 1960s. The United
States (U.S.) and Europe have shown the most concern for and interest in pediatric palliative care
than any other countries. Pediatric palliative care has evolved primarily from adult palliative
care models beginning in the 1960s along with the emergence of Family Centered Care in the
1960s and 1970s. FCC may have also facilitated the evolution of pediatric palliative care.
Family Centered Care supports family participation, family bonding and developmentally
appropriate care in the hospital setting, which are also important components of a palliative care
program (Balaguer, Martin-Ancel, Ortigoza-Escobar, Escribano, & Argemi, 2012). FCC and
pediatric palliative care together can create a holistic and compassionate environment that
enables the interprofessional healthcare team to support and care for the physical, mental and
spiritual needs of children and their families.
The WHO, the AAP, and the Institute of Medicine (IOM) strongly encourage progress
and development of pediatric palliative care programs to improve palliative, hospice and
bereavement care for infants and their families (WHO, n.d., AAP, n.d., IOM, 2003). In essence,
health care providers must create a model of care where children’s physical, social and
psychological suffering is relieved. Furthermore, palliative care offers psychosocial support to
the family so that they are able to form trusting relationships with the health care team, which
will enable them to make informed decisions for their infant. Historically, pediatric palliative
care has not advanced to the degree of adult palliative care. This discrepancy is a result of
several existing barriers to the availability and provision of palliative care such as lack of
knowledge, research and training, cultural disparities, and ethical and moral dilemmas in
providing palliative care.
PEDIATRIC PALLIATIVE CARE
19
There is a distinct lack of training, knowledge and research within the area of pediatric
palliative care. To provide high quality, compassionate pediatric palliative care, team members
need to have access to formal education and training. However, there are limited training
programs in the United States (U.S.). Even with the programs that are available, many palliative
care team members have not attended or participated in educational programs (Mancini, Kelly &
Bluebond-Langner, 2013) (Cortezzo, Sanders, Brownell & Moss, 2013). There is a serious lack
of official palliative care programs in the U.S, which has been attributed to pediatric palliative
care being an emerging and evolving field of focus. According to Wool (2013), to ensure
continued improvement and success of pediatric palliative care, formal programs and research
studies must be introduced and established. Furthermore, most research publications focus on
the ethical dilemmas of palliative care and do not address the medical, psychosocial, emotional
and spiritual needs of children with life threatening or limiting conditions and their families.
Moro, Kavanaugh, Okuno-Jones & VanKleef (2006) determined that there are “no universal
standards for treating patients at the end of life, and…there is a variation in the medical care
these patients receive” (p. 263). Their study also determined that there is a lack of research on
what palliative care decisions are made and how these decisions are made and are they morally,
ethically and medically sound (Moro, Kavanaugh, Okuno-Jones & VanKleef, 2006). The IOM
(n.d.) suggests that the lack of palliative care knowledge, training and research impedes the
delivery of effective high-quality care, limits educational opportunities for health care providers
and prohibits the development of supportive public policies.
Cultural disparities such as language and cultural traditions and expectations can create
an environment of distrust, isolation and confusion for families. A supportive and quality
palliative care team must provide appropriate interpreters for all communication with the
PEDIATRIC PALLIATIVE CARE
20
families, be able to disregard their own cultural beliefs and expectations and exhibit cultural
awareness of the families’ beliefs and expectations (Moody, Siegal, Scharbach, Cunningham &
Cantor, 2011). Health care team members may allow their own cultural and personal beliefs to
affect their medical decisions and influence the information and choices they present to family
members (Cortezzo, Sanders, Brownell & Moss (2013). This problem is further supported by
Haward, John, Lorenz & Fischhoff (2012) who determined that some team members may have
preexisting inclinations to what decisions should be made during the delivery of palliative care.
These preconceived opinions and attitudes do not support family centered care and will not
facilitate informed decision making by the family based on their culture and beliefs. Finally,
cultural and spiritual beliefs and rituals may provide support to families and facilitate coping
during the period of palliative care. Palliative care team members should ask family members
specifically what their cultural and spiritual beliefs and needs are and how those beliefs and
needs can be met (Harris & Douma, 2010).
During the provision of palliative care, ethical and moral dilemmas may arise. Many
health care team members may be unprepared to care for children with life threatening
conditions. These team members may typically provide lifesaving treatments and care for
children with positive outcomes. These team members may view death of a child as wrong but
they may also view life-prolonging interventions for children with life limiting conditions as
morally wrong also. These concerns create ethical and moral dilemmas within the team
members such that they are unable to provide quality care to the infant and their family. Moral
dilemmas may also create a disruption in the team members’ quality of life (Engelder, Davies,
Zeilinger & Rutledge, 2012). Healthcare advances have focused on assertive interventions that
lead to cures and optimal outcomes. When this does not occur, care or care that promotes the
PEDIATRIC PALLIATIVE CARE
21
transition to death may be perceived as a failure, which may ultimately create ethical and moral
quandaries within health care teams.
The foundation of palliative care is family centered care. FCC is a concept that emerged
as a “result of the increased awareness of the importance of meeting the psychosocial and
developmental needs of children and the role of families in promoting the health and well-being
of their children” (Pettoello-Mantovani, Campanozzi, Maiuri, & Giardino, 2009, p. 1). In
essence, FCC and pediatric palliative care together create a compassionate and holistic
environment that allows the interdisciplinary health care team to support and care for the
physical, mental and spiritual needs of children and their families. To improve the quality of
health care provided to children with life limiting and life threatening conditions, the AAP, the
IOM and the WHO recommends the provision of palliative care programs for this vulnerable
population.
Summary. Pediatric palliative care within the inpatient hospital setting is a model that
provides family centered care to children with life threatening or life limiting conditions and
their families. As advances in healthcare continue to evolve and prolong life expectancy, if even
for a short period of time, the provision of quality palliative care must also evolve and advance.
Neonatal and pediatric health care must incorporate palliative care into their framework by
removing barriers to palliative care. This will ensure that children with life threatening or
limiting conditions receive an improvement in quality of their limited life, treatment for pain and
other physical symptoms and psychological and spiritual support of their families after a life
altering diagnosis.
The investigator was interested in determining if there is a need for a pediatric palliative
care program at her organization that has a Neonatal Intensive Care Unit, Pediatric Intensive
22
PEDIATRIC PALLIATIVE CARE
Care Unit, a dedicated children’s emergency department and a pediatric inpatient unit. The
project site is dedicated to providing high quality health care through the promotion of patient
and family centered care and through innovation and exemplary practice supported through
research and quality improvement initiatives. This project was a quality improvement initiative
to determine a need for a pediatric palliative care program, which will be used to encourage the
development of an inpatient pediatric and neonatal palliative care program.
Chapter III
Design
To determine the need for a pediatric palliative care program, the investigator performed
an organizational review using a mixed method design. The first step was to perform a
retrospective chart review. Quantitative data from medical records was collected from a
convenience sample. Sample included pediatric patients who died while hospitalized January 1,
2012 through October 31, 2014 and patients age zero to eighteen years old. This time frame was
chosen to provide the most current representative patient population and diagnoses and provide
an appropriate sample size. Pediatric patients were excluded who died from accidental trauma,
suicide or homicide. A data abstraction form was created to collect data points of interest.
The second step in the project was the use of focus group interviews, which gave
qualitative data. Focus group discussions were utilized to solicit information from the pediatric
interprofessional teams at the project site. Groups consisted of four to six people in an open
discussion forum, moderated by the investigator. Discussion forums took approximately fortyfive to seventy-five minutes and include approximately ten to fourteen open-ended questions.
Individual groups were recruited by specialty: neonatologists, pediatricians, advanced practice
nurses, social work, chaplain services, psychologist, and developmental specialist. Discussions
PEDIATRIC PALLIATIVE CARE
23
were audiotaped and transcribed into a database and database was analyzed for common themes
and categories.
Setting
All data collection took place at the project site. A representative from medical records
obtained records for this author based on selection criteria provided and the investigator
performed all data collection. Focus group discussions were also held at the project site for
convenience of the participants and were moderated by the investigator. Transcription of
discussions into a database and analysis of discussions also took place at the project site. All data
collected was stored on a password-protected computer with a timeout locked access in a locked
office at the project site. All focus group participants signed consent forms to participate in
discussions, be audio taped and to keep all discussions confidential.
Sample
The retrospective chart review was a convenience sample including pediatric patients age
zero days old to eighteen years old who died as an inpatient between January 1, 2012 and
October 31, 2014. Patients were excluded who died from accidental trauma, homicide or
suicide. Focus groups were recruited from the project site’s pediatric interprofessional teams and
consisted of six to ten people.
Methods
A retrospective chart review was performed to determine the number of deaths that
occurred from January 1, 2012 through October 31, 2014 due to life limiting or life threatening
conditions. Of these deaths, the investigator determined how many would have qualified for
palliative care services based on established and nationally recognized criteria. This information
was used to determine how many patients in the past could have benefited from palliative care.
PEDIATRIC PALLIATIVE CARE
24
While these patients can no longer benefit from these services these patients can help predict
needs for future pediatric patients.
The second component of the project was focus group discussions. Focus group
discussions were utilized to solicit information from the pediatric interprofessional teams at the
project site. Groups consisted of four to six people in an open discussion forum, moderated by
the investigator. Discussion forums took approximately forty-five to seventy-five minutes and
included approximately ten to fourteen open-ended questions. Participants could decline to
answer any or all questions at any time. Individuals were recruited by specialty: neonatologists,
pediatricians, advanced practice nurses, social work, chaplain services, psychologist, and
developmental specialist. Participants were notified via electronic mail to determine interest and
availability. Participants were emailed again with established date and time of group meeting and
again with a reminder. Inclusion was voluntary and a consent form to participate and be
audiotaped was obtained. A demographic form was filled out but will not include any identifying
information. Audio recordings were transcribed into a database and database was analyzed for
common themes and categories. Focus group interviews in qualitative research are used to define
and describe concepts, processes, phenomenon or experiences, which can be considered the
variables in this type of data collection. These interviews can expand and explain complex
phenomenon and facilitate greater understanding and development of needed health programs
(Bradley, Curry & Devers, 2007).
Budget and Cost
Query and compilation of medical record numbers for the retrospective chart review was
performed in-kind by the investigator and the Release of Information manager in the Department
of Health Information Management. The investigator performed all remaining data collection
PEDIATRIC PALLIATIVE CARE
25
and analysis. Light refreshments provided during the focus group discussion totaled less than
$100.00.
Protection of Human Subjects
IRB approval was obtained from the project site and investigator’s university prior to
data collection from the retrospective chart review. No identifying information of individual
patients was recorded. Data was stored on a password-protected computer with a timeout locked
access in a locked office at the project site. Members of focus groups were asked to sign consent
forms to participate in the discussions and to have their discussions audio taped. Participants had
the right to decline to answer any or all questions and to leave the discussion at any time. No
identifying information from the focus groups was documented or recorded. Participants were
given numbers to identify themselves when speaking.
Instruments
Two instruments were used in this project; a data abstraction form (see Appendix D) and
a focus group discussion questionnaire (see Appendix E). These instruments were developed by
and utilized by the investigator for data collection. The data abstraction form included data
points to collect during the retrospective chart review. The focus group questionnaire was a list
of questions that guided or redirected the discussion forum in a timely manner. The questionnaire
was not evaluated by content experts prior to its use.
Data Collection
A retrospective chart review was completed by the investigator to determine how many
children, age zero to eighteen years old, died while an inpatient at the project site within the time
frame of January 1, 2012 through October 31, 2014. A convenience sample of all pediatric
deaths during this time frame were evaluated, therefore a power analysis was not performed to
PEDIATRIC PALLIATIVE CARE
26
determine an appropriate sample size. Retrospective chart reviews are a well-used method to
obtain prerecorded patient data to solve a research question or to perform a quality assessment
(Vassar & Holzmann, 2013). There were two means of obtaining the medical records for use in
this study. The investigator had access to the electronic health records of patients in the
Neonatal Intensive Care Unit (NICU) via Neodata, an electronic health record system. The
investigator queried “deaths” within the time frame of January 1, 2012 through October 31,
2014. Neondata generated a report including date of birth, date of death, first and last name, and
medical record number. The medical records were then accessed via Neodata using the medical
record numbers. Pertinent information was then transcribed into the data abstraction form
created by the investigator. To obtain medical records for patients who died while an inpatient in
the Pediatric Intensive Care Unit (PICU) and the Pediatric ward, the investigator enlisted the
assistance of the Release of Information manager in the Department of Health Information
Management to obtain the medical records of pediatric patients that fit the sample criteria. The
manager queried all pediatric patient “deaths” within the established time frame and generated a
patient list that included patient name, medical record number, date of death, length of stay, age,
primary diagnosis, secondary diagnosis and unit where death occurred. Pertinent information
was then transcribed into the data abstraction form by the investigator.
The second component of the organizational review was focus group discussions. Focus
group discussions can be a valuable source to determine major themes, thought or practices
throughout all groups contributing to the discussions (Danielson, Tuler, Santos, Webler & Chess,
2012). The investigator recruited potential participants from the interprofessioanal teams that
provide services to infants and children admitted to the NICU, PICU and pediatric ward. The
professions included neonatologist, pediatric intensivists, neonatal nurse practitioners, pediatric
PEDIATRIC PALLIATIVE CARE
27
nurse practitioners, developmental team, and social workers. A recruitment electronic mail
(email) to request participation in a pediatric palliative care focus group discussion was sent to
each individual via the project site’s email system. Once agreement to participate emails were
received from the providers, the investigator coordinated times for discussions using input from
each provider. Six focus group discussions were scheduled and confirmed via email. Each group
consisted of four to six participants. Each discussion was held in conference rooms located
within the project site to facilitate ease of participation and scheduling. At the onset of each
discussion forum, participants were given a consent form to sign. The consent form included
agreement to participate, to be audio recorded and to maintain confidentiality of all conversations
taking place within the forum. Participants were reminded that they could choose to decline from
answering some or all questions and could leave at any point during the discussion. Each
member was then assigned a number so that they could identify themselves anonymously during
the discussion and for use in differentiating conversations during the transcription phase. The
investigator was the moderator of each focus group discussion and utilized the focus group
questionnaire to guide or redirect the discussions. The discussions ranged in time from thirty
minutes to one hour and five minutes. The discussions were audio recorded from the time of
welcoming participants until the last participant left the conference room. The audio recordings
were downloaded after each discussion onto an IRB approved computer and were transcribed
into a database at a later date. Participants were offered refreshments during the discussions.
Data Analysis
Data obtained from the retrospective chart review was utilized to obtain an isolated
number of patient deaths in a set period of time. These patient deaths were then evaluated to
determine if they met pediatric palliative care inclusion criteria based on established guidelines
PEDIATRIC PALLIATIVE CARE
28
by the National Hospice and Palliative Care Organization (NHPCO, 2009) and the Center to
Advance Palliative Care (Weissman & Meier, 2011). The focus group discussions were
transcribed and evaluated for common themes, thoughts and practices among all the groups.
Information from both the retrospective chart review and the focus group discussions were
utilized to determine if there would be a cost benefit associated with an inpatient pediatric
palliative care service. This cost benefit analysis was based on previous studies that indicate
there is a reduction in length of stay, decreased medical expenditures and decreased inpatient
care costs (Gans et al., 2012) (Keele, Keenan, Sheetz & Bratton, 2013) (Whitford, Shah,
Moriarty, Branda, & Thorsteinsdottir, 2014).
Limitations
The limitations of the methodology of this project are time and exclusion criteria. Due to
a delay in IRB approval, data collection was delayed and was limited to a period of
approximately three weeks. The time constraint did not affect the retrospective chart review
however it did impact the focus group recruitment potential. There was limited time to email a
second request for participation in the focus group discussions. Furthermore, some providers
were not scheduled to work during the recruitment phase and therefore did not have the
opportunity to respond to the initial request for participation. The second limitation was that the
investigator excluded pediatric patients whose deaths were a result of accidental trauma,
homicide or suicide. According to the NHPCO, preventable deaths such as accidental trauma,
suicide and homicide can be included in pediatric palliative care inclusion criteria since this care
can “offer meaningful services to this cohort of patients and their families” (NHPCO, 2009, pg.
4). Including the excluded patients in this project in the total number of deaths may have
improved overall impact of the findings.
29
PEDIATRIC PALLIATIVE CARE
Chapter IV
Results
Sample Characteristics. There were two main samples evaluated in this project: the
retrospective chart review and the focus group discussions. Each sample had very unique
characteristics. The retrospective chart review revealed forty-two neonatal and pediatric
inpatient deaths from January 1. 2012 through October 31, 2014. Twenty-four deaths occurred
in the NICU and eighteen deaths occurred in the PICU. No deaths occurred in the pediatric ward.
Fifty-seven percent of all deaths occurred in the NICU, see Figure 2. All of the NICU deaths
met project inclusion criteria, however six of the PICU deaths were excluded based on exclusion
criteria of death secondary to accidental trauma. The total number of neonatal and pediatric
deaths that met criteria for this project was thirty-six, refer to Figure 3. These thirty-six patients
were evaluated to determine if they would have met criteria to receive palliative care.
Additionally, the investigator determined if there may have been a cost benefit associated with
these patients having access to an inpatient palliative care program.
PEDIATRIC PALLIATIVE CARE
30
Figure 2. Unit at time of death. This figure illustrates the proportion of deaths that occurred
in the NICU and PICU.
Figure 3. Inclusion criteria. This figure illustrates the proportion of pediatric deaths that meet
project inclusion criteria.
Thirty-nine members of the neonatal and pediatric interprofessional teams were invited to
participate in the pediatric palliative care focus group discussions. Twenty-seven or sixty-nine
percent of those invited agreed to participate. However, three individuals were unable to
PEDIATRIC PALLIATIVE CARE
31
participate due to time constraints. Ultimately twenty-four or sixty-two percent of individuals
who were invited to participate in the focus group discussions actually participated. There were a
total of six focus group discussions. Three of ten or thirty-percent of pediatric intensivists invited
participated in the discussions and included two pediatricians and one pediatric nurse
practitioner. Twenty percent of the pediatricians and one hundred percent of the pediatric nurse
practitioners that agreed to join the focus groups participated in the discussions. Fifteen of
twenty-three or sixty-five percent of neonatal health care providers participated in the
discussions and included six neonatologist, three pediatric nurse practitioners and six neonatal
nurse practitioners. One hundred percent of the neonatologists, sixty percent of the pediatric
nurse practitioners and fifty percent of the neonatal nurse practitioners invited to the focus
groups participated in the discussions. One hundred percent of the developmental team and one
hundred percent of the social worker team agreed to and ultimately participated in the focus
group discussions. Refer to Figure 4. The developmental team consisted on one Physical
Therapist, one Psychologist and one Developmental Specialist. The social work team consisted
of three pediatric social workers. The developmental team participated in a focus group exclusive
to their discipline; the remainder of the focus groups was interprofessional.
PEDIATRIC PALLIATIVE CARE
32
Figure 4. Interprofessional team focus group participants. This figure illustrates participation
in focus groups by each specialty within the interprofessional team.
The main areas of interest of the focus group discussions were: is there a perceived need
for a palliative care service; does the lack of service affect the way providers care for patients
who may qualify for palliative care; are there feelings of moral distress, lack of confidence, or
inadequacy when caring for patients who may qualify for palliative care; and potential barriers to
care or for the implementation of a inpatient pediatric palliative care program. Based on these
areas of interest, the audio recordings of each discussion group was analyzed for recurring
themes, knowledge, attitudes and practices as they relate to pediatric palliative care.
Major Findings. The retrospective chart review revealed forty-two neonatal and
pediatric inpatient deaths between January 1, 2012 and October 31, 2014. Of these, twenty-four
PEDIATRIC PALLIATIVE CARE
33
deaths occurred in the NICU and eighteen deaths occurred in the PICU. All NICU deaths and
twelve PICU deaths met project inclusion criteria for a total of thirty-six patients included in
project analysis. These thirty-six patients were then evaluated to determine if they would have
met criteria to receive palliative care. Determining who should receive palliative care is
problematic due to a lack of standardized inclusion, definitional and prognostic criteria.
Therefore, the investigator utilized palliative care inclusion criteria from two national groups
who are dedicated to improving access to palliative care to all patients and their families; the
National Hospice and Palliative Care Organization (NHPCO) and the Center to Advance
Palliative Care (CAPC, n.d.)(NHPCO, 2009). The NHPCO has developed a list of lifethreatening, life-limiting and complex chronic conditions that would qualify a patient to receive
palliative care. Their conditions are more generalized conditions versus specific diagnoses.
These conditions include but are not limited to: congenital malformations, prematurity/low birth
weight, cardiovascular conditions, congenital/genetic conditions, respiratory conditions,
neuromuscular conditions, malignancy, chromosomal anomalies, and cerebrovascular disease.
They also recommend considering including accidental trauma, assault and homicide as
qualifying criteria for palliative care (NHPCO, 2009). The Center to Advance Palliative Care
(CAPC) has more specific qualifying criteria and has determined some as “automatic trigger
diagnosis” (Pelant, McCaffrey & Beckel, 2012). These trigger diagnoses are: malignancy;
Cystic Fibrosis (CF); Trisomy 18, 13 or 15 and severe forms of Osteogenesis Imperfecta (OI);
severe traumatic brain injury, muscular dystrophy, Batton disease; Krabbe’s, Hunters, Hurley’s
and Tay Sachs Disease; HIV/AIDS; Dwarfism; neonatal polycystic kidney disease; biliary
atresia; need for organ transplant; extreme prematurity with concomitant bronchopulmonary
dysplasia (BPD), Grade IV intraventricular hemorrhage (IVH), periventricularleukomalasia
PEDIATRIC PALLIATIVE CARE
34
(PVL) or severe birth asphyxia; single ventricular cardiac physiology, Down Syndrome with
significant cardiac abnormality or severe pulmonary hypertension; and prolonged or failed
attempt to wean mechanical ventilation, multisystem organ failure (MSOF), severe head injury
following neonatal alloimmune thrombocytopenia (Pelant, McCaffrey & Beckel, 2012).
The retrospective chart review revealed that eleven (thirty-one percent) of the neonatal
and pediatric deaths were attributed to (had a primary diagnosis of) extreme prematurity and
concomitant conditions such as Grade IV IVH, necrotizing enterocolitis (NEC), gastrointestinal
hemorrhage, respiratory syncytial virus (RSV), respiratory distress syndrome (RDS), and sepsis.
Six patients (seventeen percent) had a primary diagnosis related to a chromosomal anomaly and
included two patients with Trisomy 13, one patient with Trisomy 17, two patients with Trisomy
18 and one patient with Trisomy 21 with a concomitant diagnosis of MSOF. Three patients
(eight percent) had a primary diagnosis of anoxic brain injury/damage. The remaining sixteen
patients (forty-four percent) had primary diagnosis of fungal sepsis; severe hypoxic brain injury
occurring at birth; congestive heart failure along with Hydrops Fetalis; brain malformation along
with meconium aspiration syndrome and hypoxic ischemic encephalopathy; sepsis along with
possible chromosomal anomaly; Stevens Johnson Syndrome along with cerebral palsy and
pneumonia; Cushing’s Syndrome along with respiratory and cardiac arrest; cerebral vascular
accident at birth along with mental retardation cerebral palsy (MRCP) and acute respiratory
failure; congenital malformation of the heart; dissected vertebral artery; hemophagocytic
lymphohistiocytosis (HLH) along with septic shock; RSV; two patients with acute Grade IV IVH
and two patients with NEC. See Figure 5.
PEDIATRIC PALLIATIVE CARE
35
Figure 5. Retrospective chart review causes of death. This figure illustrates the number of
deaths attributed to certain diagnoses.
The focus group discussion forums revealed seven recurring themes: lack of palliative
care education; lack of adequate access to a palliative care program; lack of consistency of care;
family impact; prolonged hospital length of stay; feelings of moral distress, inadequacy or lack
of confidence; potential barriers to the development of an inpatient pediatric palliative care
program. These themes were present in all six discussions and were voiced by each represented
specialty within the neonatal and pediatric interprofessional team. These common themes were
valuable indicators of the environment and manner in which health care is provided to certain
infants and children at this author’s organization.
PEDIATRIC PALLIATIVE CARE
36
Unanimously, there was a distinct lack of palliative care education. No one within the
neonatal and pediatric interprofessional had received any type of palliative care training or
continuing education in the last two years. One neonatologist had received some training during
medical school. One neonatologist had prior mentorship training at his previous organization of
employment, which had an established inpatient pediatric palliative care program. One of the
social workers had prior training at her previous organization of employment where she was a
member of a two-member palliative care team.
All participants of the focus group discussions agreed that there is no formal source or
program, within the organization or within the community, for pediatric palliative care. The
neonatal health care providers, developmental team and social workers rely on one of the
organization’s specialty infant clinics to provide some informal palliative care follow-up and
support. This clinic has limited access since it’s office hours are restricted to three half days per
week. Two of the neonatal health care providers have offered their home or cell phone numbers
to families who were discharged home with a life-limiting condition.
Many of the interprofessional health care providers reported that they had observed a lack
of consistency in the delivery of health care to patients with life-limiting or life-threatening
conditions due to the lack of a structured protocol or program. Different providers were noted to
possess different skill levels during the provision of care and while having difficult discussions
with families. Some of the providers also stated that sometimes a patient’s care plan would
change once a provider transitioned off rotation or changed shift. Many providers expressed that
there were too many perspectives on how to care for a child and their family.
One of the focus group questions asked how the lack of an inpatient pediatric palliative
care program impacts patients’ families. This question generated a lot of emotional responses
PEDIATRIC PALLIATIVE CARE
37
that were best described by the providers’ quotes specifically. “Families lose out.” “Parents
struggle if there isn’t consistency.” “Our group does a god job supporting families, we do a poor
job medically with death and dying because of lack of protocols.” “Parents go home and see
what death is like and then they come back to the hospital.” “Parents are scared.” “We had
everything planned out for the child to go home and the parents changed their mind and we were
back where we were three weeks ago.” “We do a disservice to parents when a death occurs soon
after delivery because we have to return to our unit and no one is comfortable caring for the
family or baby…so we leave the baby to die with no support for the family.” “Families think we
have the technology to fix everything and we can’t, it’s very hard to keep explaining that to
them.” “The families need time and we don’t have the time to give them.” “These families are
big time commitments and it’s hard to find the time to sit with families and have multiple
conversations with them.” “A palliative care team could help us educate families so that some of
our patients wouldn’t get readmitted over and over.” Overall, the lack of a program was believed
to prolong family decision-making, prolong hospital length of stay and financially impacted the
families through increased hospital expenses, lost job earnings, and travel expenses.
Another common theme related to the lack of an inpatient pediatric palliative care
program was prolonged hospital length of stay. Providers indicated that more time was needed
for family education, decision-making and outpatient follow-up planning for patients with lifelimiting or life-threatening conditions. Some patients with life-limiting conditions were reported
as remaining hospitalized indefinitely due to the lack of a formalized palliative care program.
Providers did not report that they routinely obtain more diagnostic testing or trials of medication
for patients who remained hospitalized indefinitely.
PEDIATRIC PALLIATIVE CARE
38
Throughout each focus group discussion, feelings of moral distress, inadequacy and lack
of confidence were reported and occurred during the delivery of health care to patients with lifelimiting or life-threatening conditions. Again, these emotional feelings are best reported as direct
quotes. “We don't allow adults in the hospital to die without palliative care support.” “We don’t
deal with it everyday, so it would be nice to have the consistency with care a program could
provide.” “I feel like the families want me to make their decisions for them and I know it’s
because they don’t understand.” “Some of us are too hesitant to talk about death and dying and
some of us are too proactive, maybe a program could balance that.” “The families need time and
we don’t have the time to give them.” “I didn’t feel supported by my colleague when they left
because they were uncomfortable with the situation.” “I was unnerved by the parent’s behavior.”
“No one supports the caregiver team.” “The nurses’ feelings of distrust projected onto the
mother and she became upset and unsure of her decision.” “It’s like we have a big loose end to
the care we provide.” “We muddle through it and do the best we can and support the families the
best way we can.” “We have difficult conversations with some of our families and it’s hard not
to offer them services.” “I was by myself in the middle of the night…I felt ethically conflicted
and I didn’t know what the right answer was.”
The final common theme revealed in the focus group discussions was barriers to the
development of an inpatient pediatric palliative care program. The most common specific barrier
was lack of knowledge as voiced by members of the interprofessional team of what exactly
palliative care is, what would a program do in the organization and how would it be useful. Other
specific barriers reported were: families lack of knowledge of palliative care; lack of financial
resources for the establishment and maintenance of a program; lack of educational opportunities
for providers; and a lack of continuity of care due to lack of palliative care programs in the
39
PEDIATRIC PALLIATIVE CARE
community. Some of these barriers are best reported as quotes. “There isn’t a big enough need.”
“It takes too much manpower.” “It would have to be a part of another program.” “There isn’t
enough time.” “I don’t know what it could do for us.” “I think it’s more important in the
community than in the hospital.” “But that’s what we do and I have feelings of rivalry.” “That
is a valued part of our job and we wouldn’t want to give that up.”
Information from the focus group discussions was also used for a cost benefit analysis.
From the focus group analysis, it was determined that hospital length of stay was most likely
prolonged with some of the patients diagnosed with life-limiting or life-threatening conditions
due to the lack of an inpatient pediatric palliative care program. At the project site, the average
cost per NICU day is $3496.00 and the average cost per PICU day is $2537.00. These figures do
not include mediations, diagnostic testing or treatments. The cost benefit of an inpatient
palliative care program would be aimed at cost avoidance through a reduction in hospital length
of stay.
Chapter V
Discussion
Introduction. Pediatric Palliative Care: A quality improvement recommendation DNP
scholarly project was developed by the investigator to determine the need for an inpatient
pediatric palliative care program at an organization that provides neonatal and pediatric inpatient
health care and specialty services. The retrospective chart review revealed that there were fortytwo neonatal and pediatric inpatient deaths January 1, 2012 through October 31, 2014, and of
these, thirty-six met inclusion criteria into project. Additionally, all of these patients would have
qualified for palliative care based on criteria established by two national organizations, the
NHPCO and CPAC. The focus group discussion forums consisting of the organization’s
PEDIATRIC PALLIATIVE CARE
40
neonatal and pediatric interprofessional team revealed common recurring themes that described
the environment and manner in which health care is provided for pediatric patients with lifelimiting or life-threatening conditions at the project site. Analysis of all data obtained through the
retrospective chart reviews and focus group discussion forums revealed that there is a need for an
inpatient pediatric palliative care program at an organization that provides neonatal and pediatric
inpatient health care and specialty services. However, data analysis of the focus group discussion
forums also revealed that there is a significant knowledge deficit within the interprofessional
team regarding what pediatric palliative care is and what an inpatient program would provide.
This knowledge deficit could slow the momentum of a quality improvement initiative and be a
significant barrier to the promotion and development of an inpatient pediatric palliative care
program. Furthermore, this specific knowledge deficit reduces the likelihood of a successful
partnership between the interprofessional team and a pediatric palliative care team. The focus
group discussions also revealed that a majority of the healthcare providers believed that hospital
length of stay was increased with patients with life-limiting or life-threatening conditions. The
increased length of stay was associated with prolonged parental decision-making, educational
needs of the families and coordination of outpatient follow up.
Implications of Findings. Pediatric palliative care facilitates the delivery of competent,
developmentally appropriate, compassionate and consistent care to infants and children who
have been diagnosed with a life-limiting or life-threatening condition. This unique pediatric
patient population experiences physical and psychosocial suffering, and they and their parents
require psychosocial and spiritual support. Furthermore, pediatric palliative care can improve
healthcare providers skills and knowledge and provides support to further enhance the delivery
of care that meets the physical, emotional, spiritual and psychosocial needs of infants and
PEDIATRIC PALLIATIVE CARE
41
children with life-limiting or life-threatening conditions (Initiative for Pediatric Palliative Care,
2014) (Stayer, 2012). These defining characteristics of pediatric palliative care can be supported
by the implementation of the theoretical framework of FCC. FCC evolved to meet the
psychosocial and developmental needs of children and encourages family participation to
promote the health and well being of their children. Additionally, FCC supports health care that
is based on “mutually beneficial partnerships among patients, families and health care
professionals” (O’Malley, Brown, Krug, & the Committee on Pediatric Emergency Medicine,
2008, p. 511).
Life extending healthcare advances have allowed infants and children with life-limiting
and life-threatening conditions to survive longer than they ever have in the past, consequently
this particular patient population constitutes approximately one third of the patients and one half
the inpatient costs in children’s hospitals. Furthermore, approximately eighty percent of the
500,000 infants and children in the U.S. diagnosed with a life-limiting or life-threatening
condition die within a hospital setting (Bogetz, Ullrich, & Berry, 2014). According to the IOM,
WHO, NHPCO and the AAP, palliative care focuses on improving quality of life through care
that focuses on children and their families at the onset of diagnosis and continues throughout the
illness trajectory, death and bereavement. These organizations strongly encourage the
development of pediatric palliative care programs to improve palliative and bereavement care for
children and their families (IOM, 2003)(WHO, n.d.)(NHPCO, 2009)(AAP, n.d.).
There are limited cost analysis studies associated with pediatric palliative care, however
there are more readily available cost analysis studies associated with adult palliative care. A
review of the literature shows that pediatric palliative care can reduce the number of hospital
days and hospital stay costs (Gans, et al., 2012) (Schmidt, et al., 2013). Smith, Brick, O’Hara &
PEDIATRIC PALLIATIVE CARE
42
Normand (2014) reported that pediatric palliative care was associated with lowered costs when
death was near but was higher with chronic illnesses. An adult study by Pelant, McCaffrey &
Beckel (2012) showed that adult palliative care programs resulted in a 25-33% decrease in mean
daily costs, decreased readmissions to acute care settings and reduced terminal treatment
interventions. Another adult study showed average daily total direct hospital costs were $464 per
day lower for patients receiving palliative care than similar patients who did not receive
palliative care and 43.7% were less likely to be admitted to the ICU during the hospitalization.
Based on these studies, it would be reasonable to assume that the presence of an inpatient
pediatric palliative care program could potentially reduce hospital length of stay by at least one
day if not more.
The investigator’s organization serves approximately 140,000 pediatric patients per year
and supports a highest-level NICU, the county’s only PICU, a large inpatient children’s unit and
a dedicated children’s emergency department. At this time, this organization does not have an
inpatient pediatric palliative care program; likewise, there are no pediatric palliative care
programs at this time in the organization’s community or county. This organization is also
dedicated to providing high quality health care through the promotion of patient and family
centered care and through innovation and exemplary practice supported through research and
quality improvement initiatives. This project revealed that there were thirty-six pediatric
inpatient deaths within the organization from January 1, 2012 through October 31, 2014 and
every one of these patient’s would have qualified for palliative care services based on criteria
established by NHPCO and CAPC. In order to promote the highest quality health care that is
grounded on evidence based research and based on the organization’s pediatric population,
yearly patient volumes and specialty services and based on the results of the retrospective chart
PEDIATRIC PALLIATIVE CARE
43
review, there is a need for an inpatient pediatric palliative care program at this organization.
However, the focus group discussions revealed that there is a significant knowledge deficit that
exists within the neonatal and pediatric interprofessional team. O’Shea & Kanarek (2013) report
that many healthcare providers, even those who provide palliative care, lack understanding or are
confused about what pediatric palliative care is. Many providers have not participated in formal
palliative care education and most report that they learned about palliative care through their job
or a mentor. At the investigator’s organization, the neonatal and pediatric interprofessional team
care for many infants and children with life-limiting and life-threatening conditions and as
revealed in the focus group discussions, none of them had received formal palliative care training
in the last two years and a majority of the team did not have a true understanding of what
pediatric palliative care medicine is. Likewise, Snyder, Hazelett, Allen & Radway (2012)
indicate that palliative care is “underutilized due to a misunderstanding of the current
terminology and lack of knowledge/training” in palliative care (p. 419).
Even though this scholarly project identified a need for an inpatient pediatric palliative
care program at the project site, a substantial knowledge deficit exists that must be addressed. It
is crucial that members of the neonatal and pediatric interprofessional team know and understand
what the true meaning and concept of pediatric palliative care is, otherwise the forward
momentum of a quality improvement initiative may stall and never proceed to fruition.
Furthermore, with a lack of knowledge or understanding of the benefits of an inpatient pediatric
palliative care team, the likelihood of a successful partnership between the interprofessional team
and a pediatric palliative care team is diminished.
Limitations. The limitations of the methodology of this project were time, unavailability
of interprofessional team members for focus group discussions and exclusion criteria. Due to a
PEDIATRIC PALLIATIVE CARE
44
delay in IRB approval, data collection was delayed and was limited to a period of approximately
three weeks. The time constraint did not affect the retrospective chart review however it did
impact the focus group recruitment potential. There was not enough time to email a second
request for participation in the focus group discussions. Furthermore, some providers were not
scheduled to work during the recruitment phase and therefore did not have the opportunity to
respond to the initial request for participation. The second limitation was that the investigator
excluded pediatric patients whose deaths were a result of accidental trauma, homicide or suicide.
According to the NHPCO, preventable deaths such as accidental trauma, suicide and homicide
can be included in pediatric palliative care inclusion criteria since this care can “offer meaningful
services to this cohort of patients and their families” (NHPCO, 2009, pg. 4). Including the
excluded patients in this project in the total number of deaths may have improved overall impact
of the findings.
Delimitations. Due to time constraints, inpatient deaths from the children’s emergency
department and labor and delivery were not included in this project. This information could have
potentially significantly increased the number of pediatric patients that would have qualified for
inclusion in the project and who would have met criteria for palliative care. A greater number of
qualifying patients may show a greater need based on a retrospective chart review analysis alone.
Recommendations. Since a knowledge deficit regarding pediatric palliative care was
identified, a plan was developed by the investigator to increase the interprofessional teams
knowledge base on pediatric palliative care. A pediatric palliative care expert from a neighboring
hospital was invited to present at the author’s organization during Grand Rounds. Grand Rounds
is typically attended by the organization’s pediatric intensivists, neonatologists, pediatric
surgeons, neonatal and pediatric advanced practice nurses, community pediatricians, and other
PEDIATRIC PALLIATIVE CARE
45
interested professionals. The investigator also plans on inviting the expert to present at Noon
Conference which is a weekly conference held at the organization that is attended by
obstetricians, fetal and maternal medicine department, neonatology department, the
developmental team, and social workers.
Another method to increase knowledge and provided education to the neonatal and
pediatric interprofessional team is through formalized education programs developed and
provided by CAPC. A part of their mission is to provide hospitals and other organizations with
the tools, training, technical assistance and metrics needed to support successful implementation
and integration of palliative care at an organization. This is a fee-based program that provides
tools to assess needs and provides education via online courses webinars and forums (CAPC,
n.d.). Through these venues, the investigator hopes to improve the knowledge and understanding
of pediatric palliative care so that in the future a quality improvement initiative can move
forward to facilitate the interest in and development of an inpatient pediatric palliative care
program at the project site.
46
PEDIATRIC PALLIATIVE CARE
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National Hospice and Palliative Care Organization. (2009). NHPCO facts and figures:
Pediatric palliative and hospice care in America. Retrieved from
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Patient and family centered care of children in the Emergency Department. Pediatrics,
22(2), 511-521.
O’Shea, E., & Kanarek, R. (2013). Understanding pediatric palliative care: What it is and what
it should be. Journal of Pediatric Oncology Nursing, 30(1), 34-44.
Pelant, D., McCaffrey, T., & Beckel, J. (2012). Development and implementation of a pediatric
palliative care program. Journal of Pediatric Nursing, 27(4), 394-401.
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Schmidt, P., Otto, M., Psychol, M., Hechler, T., Metzing, S., Wolfe, J., & Ernikow, B. (2013).
Did increased availability of pediatric palliative care lead to improved palliative care
outcomes in children with cancer? Journal of Palliative Medicine, 16(9), 1034-1039.
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Shields, L., Pratt, J., & Hunter, J. (2006). Family-centered care: a review of qualitative studies.
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Smith, S., Brick, A., O’Hara, S., & Normand, C. (2014). Evidence on the cost and costeffectiveness of palliative care: A literature review. Palliative Medicine, 28(2), 130150.
Snyder, S., Hazelett, S., Allen, K., & Radway, S. (2012). Physician knowledge, attitude, and
experience with advance care planning, palliative care and hospice: Results of a primary
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Stayer, D. (2012). Pediatric palliative care: A conceptual analysis for pediatric nursing
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Vassar, M., & Holzman, M. (2013). The retrospective chart review: important methodological
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Weissman, D., & Meier, D. (2011). Identifying patients in need of a palliative care assessment
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50
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Appendix A
East Carolina IRB Approval Letter
EAST CAROLINA UNIVERSITY
University & Medical Center Institutional Review Board Office
4N-70 Brody Medical Sciences Building· Mail Stop 682
600 Moye Boulevard · Greenville, NC 27834
Office 252-744-2914 · Fax 252-744-2284 · www.ecu.edu/irb
Notification of Initial Approval: Expedited
From:
To:
CC:
Date:
Re:
Biomedical IRB
Melinda Williams
Michelle Skipper
3/23/2015
UMCIRB 14-002389
Pediatric Palliative Care
I am pleased to inform you that your Expedited Application was approved. Approval of the study and any consent
form(s) is for the period of 3/21/2015 to 3/20/2016. The research study is eligible for review under expedited
category # 5,6,7. The Chairperson (or designee) deemed this study no more than minimal risk.
Changes to this approved research may not be initiated without UMCIRB review except when necessary to
eliminate an apparent immediate hazard to the participant. All unanticipated problems involving risks to
participants and others must be promptly reported to the UMCIRB. The investigator must submit a continuing
review/closure application to the UMCIRB prior to the date of study expiration. The Investigator must adhere to all
reporting requirements for this study.
Approved consent documents with the IRB approval date stamped on the document should be used to consent
participants (consent documents with the IRB approval date stamp are found under the Documents tab in the study
workspace).
The approval includes the following items:
Name
Consent to Participate in a Focus Group.docx
Data Abstraction Form.docx
Decedents.jpeg
ECU Application-for-Waiver-Form.doc
Focus Group Discussion Questions.docx
Focus group recruitment email.docx
Scholarly Practicum Project Approval-2.docx
Waiver of auth1.jpeg
Description
Consent Forms
Data Collection Sheet
HIPAA Authorization
HIPAA Authorization
Interview/Focus Group Scripts/Questions
Recruitment Documents/Scripts
Study Protocol or Grant Application
HIPAA Authorization
51
PEDIATRIC PALLIATIVE CARE
Waiver of auth2.jpeg
HIPAA Authorization
The Chairperson (or designee) does not have a potential for conflict of interest on this study.
IRB00000705 East Carolina U IRB #1 (Biomedical) IORG0000418
IRB00003781 East Carolina U IRB #2 (Behavioral/SS) IORG0000418
52
PEDIATRIC PALLIATIVE CARE
Appendix B
WakeMed Hospital and Clinics IRB Approval
Letter
53
PEDIATRIC PALLIATIVE CARE
Appendix C
Focus Group Consent Form
East Carolina University
Informed Consent to Participate in Research
Information to consider before taking part in research that has no
more than minimal risk.
Title of Research Study: Pediatric Palliative Care - A Quality Improvement Recommendation
Principal Investigator: Melinda L. Williams, CPNP (Person in Charge of this Study)
Institution, Department or Division: WakeMed Health & Hospitals
Address: 3000 New Bern Avenue Raleigh, NC 27610
Telephone #: 919-350-8466
Researchers at East Carolina University (ECU) and WakeMed Health & Hospitals study issues related to
society, health problems, environmental problems, behavior problems and the human condition. To do
this, we need the help of volunteers who are willing to take part in research.
Why am I being invited to take part in this research?
The purpose of this study and specifically the focus group discussion forum is to determine if there is a
need for a pediatric palliative care program at WakeMed Health & Hospitals. The focus group forum will
also be utilized to learn about perceived barriers that may exist that prevent the establishment of a
program and to discuss potential health care provider difficulties related to the lack of a pediatric
palliative care program. You are being invited to take part in this research because as a pediatric health
care interdisciplinary team member, you possess unique information that will aid the principle
investigator in determining if there is a need for a pediatric palliative care program. The decision to take
part in this research is yours to make. By doing this research, we hope to learn if there is a need for an
inpatient pediatric palliative care program at an organization that provides neonatal and pediatric inpatient
health care and specialty services and if the pediatric interdisciplinary teams are interested in partnering
with a palliative care program.
If you volunteer to take part in this research, you will be one of approximately 40 people to do so.
PEDIATRIC PALLIATIVE CARE
54
Are there reasons I should not take part in this research?
The focus group discussions will be audio recorded, however names, identifying information will
not be recorded and responses will be anonymous. Participation is voluntary and you may
choose to not participate at any time. You may choose to answer some or all of the questions.
What other choices do I have if I do not take part in this research?
You can choose not to participate.
Where is the research going to take place and how long will it last?
The research will be conducted at WakeMed Health & Hospitals. You will be invited to a focus group
discussion, time and date to be determined. You will be asked to attend one discussion during the
study. The total amount of time you will be asked to volunteer for this study a maximum of 90
minutes once during the duration of the study.
What will I be asked to do?
You will be asked to participate, through open discussion guided by specific questions developed by
the investigator, in a focus group discussion forum. There are no right or wrong answers to the
questions. The investigator would like to hear individual viewpoints from everyone participating in
the discussion forum. The investigator hopes that everyone will provide honest input even when
the responses may differ from others in the group. In respect for each participant in the group, one
person will be allowed to speak at a time during the discussion. Participants will be asked to keep
all responses confidential. The focus group discussions will be audiotaped. Only the investigator
will have access to and transcribe the audiotapes. Transcripts will be stored on a passwordprotected computer with a timed auto lock within a locked office suite at WakeMed. Since this data
will be kept for the duration of the study and for a period of approximately twelve months after the
completion of the study, WakeMed IRB will be the HIPAA Systems Administrator. Contact person
Vanessa Bennett 919-350-8795. Data will be disposed of according to HIPAA guidelines.
What might I experience if I take part in the research?
We don’t know of any risks (the chance of harm) associated with this research. Any risks that may
occur with this research are no more than what you would experience in everyday life. We don't
know if you will benefit from taking part in this study, however your input and information may be
useful in facilitating the development of an inpatient pediatric palliative care program at WakeMed
Health & Hospitals. There may not be any personal benefit to you but the information gained by
doing this research may help others in the future.
Will I be paid for taking part in this research?
We will not be able to pay you for the time you volunteer while being in this study
Will it cost me to take part in this research?
It will not cost you any money to be part of the research however you will have to take time out of
your day to participate.
PEDIATRIC PALLIATIVE CARE
55
Who will know that I took part in this research and learn personal information about me?
ECU and the people and organizations listed below may know that you took part in this research and
may see information about you that is normally kept private. With your permission, these people
may use your private information to do this research:
 Other participants in the focus group that you are participating in.
 The University & Medical Center Institutional Review Board (UMCIRB) and its staff have
responsibility for overseeing your welfare during this research and may need to see research
records that identify you.
 Any agency of the federal, state, or local government that regulates human research. This
includes the Department of Health and Human Services (DHHS), the North Carolina
Department of Health, and the Office for Human Research Protections.
How will you keep the information you collect about me secure? How long will you
keep it?
Focus group participants will be asked to keep all responses confidential. The focus group
discussions will be audiotaped. Only the investigator will have access to and transcribe the
audiotapes. Transcripts will be stored on a password-protected computer with a timed
auto lock within a locked office suite at WakeMed. This data will be kept for the duration
of the study and for a period of approximately twelve months after the completion of the
study.
What if I decide I don’t want to continue in this research?
You can stop at any time after it has already started. There will be no consequences if you stop and
you will not be criticized. You will not lose any benefits that you normally receive. You may answer
some or all of the discussion questions.
Who should I contact if I have questions?
The people conducting this study will be able to answer any questions concerning this research,
now or in the future. You may contact the Principal Investigator at (919)350-8466 or (919)4264733 any time prior to 8:00 pm.
If you have questions about your rights as someone taking part in research, you may call the Office
of Research Integrity & Compliance (ORIC) at phone number 252-744-2914 (days, 8:00 am-5:00
pm). If you would like to report a complaint or concern about this research study, you may call the
Director of the ORIC, at 252-744-1971.
Are there any Conflicts of Interest I should know about?
The Principal Investigator does not have any identified conflicts of interest. This plan has been
reviewed by the University & Medical Center Institutional Review Board and found to be adequate
to protect your rights.
I have decided I want to take part in this research. What should I do now?
The person obtaining informed consent will ask you to read the following and if you agree, you
should sign this form:

I have read (or had read to me) all of the above information.
56
PEDIATRIC PALLIATIVE CARE




I have had an opportunity to ask questions about things in this research I did not
understand and have received satisfactory answers.
I know that I can stop taking part in this study at any time.
By signing this informed consent form, I am not giving up any of my rights.
I have been given a copy of this consent document, and it is mine to keep.
Participant's Name (PRINT)
_____________
Date
Signature
Person Obtaining Informed Consent: I have conducted the initial informed consent process. I have
orally reviewed the contents of the consent document with the person who has signed above, and
answered all of the person’s questions about the research.
Principal Investigator (PRINT)
Signature
Date
57
PEDIATRIC PALLIATIVE CARE
Appendix D
Data Abstraction Form
Date of
birth
Date of
death
Excluded
d/t
accidental
trauma,
suicide,
homicide?
Cause of
death
Coexisting
diagnosis
Initial
admission
at time of
death
Unit at
time of
death
(NICU,
PICU,
ED, 4E)
0-18 years old, death occurred January 1, 2012 through December 31, 2014
Number of charts reviewed _______
Number of charts excluded ________
*if cause of death was not a life limiting or life threatening condition then co-existing diagnosis
should be
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PEDIATRIC PALLIATIVE CARE
Appendix E
Focus Group Discussion Questions
In the past two years, have you ever needed pediatric palliative care services?
If yes, did you have adequate access to a pediatric palliative care program? If so, describe? If
you did not have adequate access, what did you do?
Did the lack of a palliative care program impact how you cared for your patients? (ordered
additional testing, continued or ordered additional treatments, increased LOS).
How do you feel the lack of palliative care affected the families?
Can you describe an experience (without revealing identifying information), when caring for a
dying patient that resulted in feelings of moral distress or feelings of inadequacy due to a lack of
pediatric palliative care support? Do you have more than one experience like this?
If an inpatient pediatric palliative care program were available, would you readily utilize the
service?
What do you think are barriers to the development and maintenance of an inpatient pediatric
palliative care program?
Do you feel comfortable and confidant caring for patients and their families with life-limiting or
life-threatening conditions? What would improve your confidence and comfort level?
What do you perceive as barriers to caring for this type of patient?
Do you think there are readily available pediatric palliative care continuing education programs?
Have you participated in any in the last two years?
Is there anything else you would like to comment on regarding the lack of availability of a
pediatric palliative care program or about the possibility of a pediatric palliative care program?
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PEDIATRIC PALLIATIVE CARE
Appendix F
Project Timeline
Formation of DNP Project Committee
June 2014
Committee member agreement signatures
June 2014
DNP Project Abstract approval by committee chair
and Director of DNP Program
July 2014
WakeMed Hospital and Clinics IRB approval
November 2014
East Carolina University IRB approval
March 2015
Retrospective Chart Review
April 2015
Focus Group Discussion Forums
April 2015
DNP project defense
June 2015
DNP project final scholarly paper
July 2015
Submission of DNP project manuscript to
Journal of Palliative Medicine
July 2015
PEDIATRIC PALLIATIVE CARE
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