Review Article

Pediatric palliative care nursing

Terrah Foster Akard1, Verna L. Hendricks-Ferguson2, Mary Jo Gilmer1
1
Vanderbilt University School of Nursing and Medicine (Pediatrics), Nashville, TN, USA; 2Saint Louis University, School of Nursing, St. Louis,
MO, USA
Contributions: (I) Conception and design: All authors; (II) Administrative support: TF Akard; (III) Provision of study materials or patients: All authors;
(IV) Collection and assembly of data: TF Akard; (V) Data analysis and interpretation: All authors; (VI) Manuscript writing: All authors; (VII) Final
approval of manuscript: All authors.
Correspondence to: Terrah Foster Akard, PhD, RN, CPNP, FAAN. Associate Professor of Nursing, Vanderbilt University School of Nursing, 461 21st
Avenue South, Nashville, TN 37240, USA. Email: [Link]@[Link].

Abstract: Palliative care is patient- and family-centered care that enhances quality of life throughout the
illness trajectory and can ease the symptoms, discomfort, and stress for children living with life-threatening
conditions and their families. This paper aims to increase nurses’ and other healthcare providers’ awareness
of selected recent research initiatives aimed at enhancing life and decreasing suffering for these children
and their families. Topics were selected based on identified gaps in the pediatric palliative care literature.
Published articles and authors’ ongoing research were used to describe selected components of pediatric
palliative nursing care including (I) examples of interventions (legacy and animal-assisted interventions);
(II) international studies (parent-sibling bereavement, continuing bonds in Ecuador, and circumstances
surrounding deaths in Honduras); (III) recruitment methods; (IV) communication among pediatric patients,
their parents, and the healthcare team; (V) training in pediatric palliative care; (VI) nursing education; and
(VII) nurses’ role in supporting the community. Nurses are in ideal roles to provide pediatric palliative care
at the bedside, serve as leaders to advance the science of pediatric palliative care, and support the community.

Keywords: Hospice and palliative care nursing; palliative care; palliative nursing; pediatric nursing

Submitted Nov 06, 2017. Accepted for publication May 31, 2018.
doi: 10.21037/apm.2018.06.01
View this article at: [Link]

At least 400,000 children are living with life-threatening these children and their families by describing selected
conditions each day in the United States, and approximately components of pediatric palliative nursing care based on
53,000 children die each year (1). Palliative care is patient- recent literature and authors’ ongoing research. Topics
and family-centered care that enhances quality of life were selected based on identified gaps in the pediatric
throughout the illness trajectory (2) and can ease the palliative care literature including (I) nursing interventions;
symptoms, discomfort, and stress for children living with (II) international studies; (III) recruitment methods; (IV)
life-threatening conditions and their families (3). Key communication; (V) training; (VI) nursing education; and
components of pediatric palliative care include physical, (VII) nurses’ role in supporting the community.
psychosocial, and spiritual dimensions, as well as decision-
making guidance to families (4). Palliative care can coexist
Pediatric palliative care nursing interventions
with treatment and is important from diagnosis, throughout
a child’s illness, and beyond. Nurses are in ideal roles to Nursing intervention studies in pediatric palliative care
provide pediatric palliative care at the bedside because are beginning to emerge as the state of the science gains
they spend the most time with children and their families. momentum and researchers seek to learn new ways to assist
This paper aims to help guide nurses and other healthcare children and their families dealing with life-limiting or life-
providers in enhancing life and decreasing suffering for threatening conditions. The authors’ recent work focusing

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S40 Akard et al. Pediatric palliative care nursing

on legacy and animal-assisted interventions are summarized and parent caregiver coping and adjustment outcomes, but
below. more research is needed to determine meaningful aspects
of intervention content, effects of legacy interventions,
best timing to offer legacy services, and what children and
Legacy interventions
families are most likely to benefit.
Legacy-making is defined as actions or behaviors aimed at
being remembered and can improve coping and adjustment
Animal-assisted interventions
during illness and end of life for patients and their families
(5-9). Leaving a legacy is a concern of seriously-ill children The human-animal bond continues to be a phenomenon
who understand that death is permanent and irreversible, of interest in healthcare with animal-assisted interventions
and who are likely to think about death even if they do not often viewed as a complementary alternative medical
communicate it explicitly (9). For children whose deaths treatment to medications. Animal-assisted interventions
can be anticipated, efforts to create memories and confirm can affect ways children experience symptoms, reducing
they are loved and will be remembered are important (10). their distress and improving quality of life (16,17). These
Children preparing for potential death may worry about interventions may occur with pets, therapy animals, or
being forgotten or have concern for loved ones that they service animals. The American Pet Products Association
will leave behind (11-13). In the terminal phase of an illness, conducts a biennial study (18) and found that 68% of
children may wish to attend to unfinished business, such as American households have pets. Researchers determined
delegating who will receive certain belongings after their pet ownership decreases depression and improves social
death, writing letters, drawing pictures, taking a special adjustment, fitness, and weight status in children (17,19-21).
trip, or speaking with significant people (14). Hospital staff Hospitalized children are usually not able to interact
have reported that legacy-making activities have helped ill with their pets on a regular basis and animal-assisted
children cope and communicate and helped family members interventions with handler/canine teams may play a key role
cope, communicate, and continue bonds in the case of the in reducing anxiety and stress in children requiring care in a
child’s death (8). While legacy interventions have been hospital or hospice.
shown to benefit adults with terminal illnesses and their Animal-assisted interventions may benefit many special
family members (6), empirically-based legacy interventions populations, especially children with life-threatening
had not been developed or tested in children. conditions. As children and their parents navigate the
Thus, we developed a legacy intervention via digital challenging journey of dealing with life-threatening
storytelling based on suggestions from children ages conditions, one potential strategy to decrease suffering of
7–17 years (n=8) with poor prognosis cancer and their children with advanced disease is the use of animal-assisted
parent caregivers (5). The intervention focuses on children’s interventions. The need for innovative, compassionate care
personal characteristics (e.g., name, gender, appearance, that enhances quality of life for children and their families
personal traits), the activities that they like to do (e.g., is a continuous concern as life-threatening conditions affect
hobbies, interests), and their connectedness with others families in profound ways. They must cope with numerous
(e.g., telling family members how much they are loved). physical concerns, as well as behavioral and psychosocial
After first testing our legacy intervention in a face-to- issues such as depression, anxiety, loneliness and relational
face format (requiring interviewing with an in-person strain. Adjunctive interventions can help an entire family
videographer) in a sample of 28 children with advanced cope with these concerns, and animal-assisted interventions
cancer and their parents (15), we expanded to our current are beginning to emerge in children’s hospitals across the
study that is testing a web-based format to be more cost United States. In the current healthcare environment,
effective and allow greater access to participants. Our concerns about cost-containment and access to care are
electronic intervention is a mobile-friendly web program prevalent. Animal-assisted interventions with registered
that guides participants to create digital storyboards about canines can be provided as a volunteer service, resulting
themselves by directing them to: (I) answer legacy-making in low cost and numerous benefits. According to children
questions about themselves; (II) upload photographs; (III) and their parents, time with a dog during clinic visits or
upload videos; and (IV) upload music. Legacy interventions hospitalization has resulted in (I) increased compliance
for children are showing strong promise to improve child and a willingness to actively participate in treatment;

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Annals of Palliative Medicine, Vol 8, Suppl 1 February 2019 S41

(II) distraction from pain and concerns about treatment in parents after a child’s death through interviews with
outcomes; (III) decreased anxiety and perceptions of bereaved parents and siblings in the US and Canada (25).
stress; (IV) unconditional acceptance; and (V) improved Siblings and parents described major categories of change
interactions with the healthcare team (16,17,22,23). These in their personal lives (e.g., emotions, perspectives and
benefits differ for children of different ages, genders, priorities, physical state, work habits, coping/behaviors,
development, and progression in their illness trajectory. spiritual beliefs, and feeling something is missing) and
Through normalizing a complex and sometimes daunting relationships (e.g., family, others). Ninety-four percent
environment, canines may play a key role through the of mothers, 87% of fathers, and 69% of siblings reported
human-animal bond, their unconditional love thereby parental changes in at least one of these categories. Changes
enhancing child and family well-being. in priorities was more likely to be reported by parents and
sadness was more likely to be reported by siblings.

International studies
Continuing bonds in Ecuador
The World Health Organization (WHO) maintains
statistics on worldwide mortality and morbidity. Startling A qualitative study explored how bereaved individuals in
data reveal that in 2015, 4.5 million infants died within the Ecuador described continuing bonds and found that 98%
first year of life and sixteen thousand children died every of participants reported having purposeful bonds such as
day. Prematurity was the largest single cause of death. keeping belongings or photos or visiting the cemetery (26).
In various cultures in different parts of the globe, care Sixty-one percent reported non-purposeful bonds like
must be taken to ensure knowledge and understanding of dreams. For participants in the study, the bonds were
basic tenets and traditions surrounding life-threatening sometimes comforting (71%) and sometimes discomforting
conditions and end-of-life (EOL) care. Even within the (55%). This research is another example of the need to
same country, diverse ethnic groups with a variety of values, provide culturally sensitive care to bereaved children and
principles and beliefs coexist, and it is incumbent on nurses families.
and other healthcare providers to explore and honor those
differences.
Circumstances surrounding deaths in Honduras
A seminal international study focusing on communication
challenges when families are faced with having a child Another qualitative study explored perceptions of bereaved
who is terminally ill was completed in Sweden (24), and individuals living in Honduras of circumstances surrounding
findings may be useful to various cultures. All parents who the death of loved ones (27). Semi-structured interviews
experienced the death of their child between 1992 and were later translated and transcribed. Sixty percent of
1997 were asked to complete a questionnaire, focusing on participants were with other family members during their
whether or not they talked about death with their child. loved one’s EOL and 22.5% coped using spirituality or
Out of 449 parents who responded, none of the 147 who religious practices and connected with God. Participants
talked with their child about death regretted it, while 69 expressed both comforting and discomforting continuing
of the 258 parents who did not talk with their child about bonds when remembering the deceased. Results confirm
death regretted not doing so. Even though the study was a need to learn more about coping strategies and support
completed well over a decade ago, its applicability may still mechanisms health professionals can use or suggest when
resonate today in pediatric palliative care. working with bereaved in various cultures
Authors’ examples of international palliative care studies
include (I) parent-sibling bereavement after death of a child
Recruitment methods
from cancer; (II) continuing bonds reported by bereaved
individuals in Ecuador; and (III) circumstances surrounding Pediatric palliative care nursing research has spearheaded
deaths from the perspective of bereaved Honduran families. innovative research methods to address research challenges.
For example, rigor of pediatric palliative care research is
often challenged with small sample sizes, minimal sample
Parent-sibling bereavement
diversity, and recruitment difficulties. Facebook ads
This study compared multiple perspectives of changes have successfully recruited a variety of cohorts including

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S42 Akard et al. Pediatric palliative care nursing

populations of gays and lesbians, cigarette users, women early palliative care options early after diagnosis and during
with low income, college students, and adults who are illness (46,47). Although organizations such as the American
depressed (28-34). While most studies have targeted Academy of Pediatrics (AAP) and WHO have noted the
adult age groups, Facebook ads have been used to recruit significance of early pediatric palliative care discussions
teenage and young adult populations such as Australian (48,49), research evaluating the impact of early discussions
(ages 16–25) and Canadian (ages 15–24) youth affected by has been very limited (50,51).
violence (35,36). With Facebook’s 1,110,000,000 active A gap exists in prospective evidence to evaluate parental
monthly users, 680,000,000 mobile users, and availability preferences to receive palliative care and advanced care
in 70 languages (37), Facebook advertising is a cost- and planning information during the early diagnosis period of
time-efficient strategy to recruit larger and more diverse children with poor prognosis types of cancer (50,51). In one
samples within pediatric palliative care. To our knowledge, seminal study (52), bereaved parents of 48 children that had
our pediatric palliative care nursing research studies are died of cancer shared that: (I) more than 1/3 (36%) did not
the first to have successfully used social media to recruit recall having any discussion about EOL with their providers;
children receiving palliative care and their parent caregivers (II) 50% of the children received cancer-directed therapy
for research participation (38). More work is needed to at EOL, which parents viewed negatively in retrospect;
determine how social media can best be used in pediatric and (III) although 48% of children died at home, 88% of
palliative care research and clinical practice to improve care these parents would have preferred home as the location
to children living with life-threatening conditions. Nursing of death in hindsight. Parents may be reticent to engage
researchers and clinicians are in ideal roles to lead out in in candid discussions with a fear that open conversations
innovative thinking and pioneering strategies to address about prognoses and timelines may reflect abandoned hope
unique challenges in pediatric palliative care. for cure (24,41,53,54). Parents may be in denial or afraid to
acknowledge the possibility of their child’s death. In stifling
the conversations, well-meaning parents hope to allay fear
Communication
and depression in their children. These same parents may
Another priority area in pediatric palliative care where also decline valuable services offered through pediatric
nurses can take the lead is related to communication. While palliative care, such as advanced care planning. Additionally,
essential to trusted relationships, effective communication pediatric providers commonly hold the fear that engaging
among children with life-threatening conditions, parents, in palliative care/EOL discussions with parents may take
and the healthcare team often is poorly understood and away their hope (55,56) and increase parents’ emotional
executed. Disjointed, halted, or non-existent conversations distress (47). However, in reality, children who engage
can lead to anxiety, fear, and stress (11,39-41). This in open discussions about their prognosis and are given
confusing or incomplete communication may be distressing adequate time to process their status exhibit greater
to both providers and the families in their care. Providers resilience than children who do not engage in candid
generally desire open conversations about a child’s conversations (57). Honest, empathetic, age-appropriate
diagnosis, treatment, and prognosis but may find they communication can decrease anxiety and fear of the
lack resources or experience to facilitate these challenging unknown.
discussions. Thus, healthcare providers are often hesitant
to initiate early palliative care discussions with parents due
Training in pediatric palliative care
to barriers such as insufficient time, cost, uncertainty of
prognosis, perceived medical failure, fear of diminishing Currently, most practicing physicians, nurses, and other
patients’ hope, and discomfort to initiate and engage in healthcare providers have not received training to engage
palliative care discussions (42-44). Specifically, nurses are in pediatric palliative care discussions with patients and
often reluctant to discuss prognosis and palliative care families (56). The lack of interprofessional training among
options with families because often they are unsure what providers may contribute to the exclusion of nurses
information may have been discussed by physicians and being present when physicians engage in discussions with
are also concerned about taking away patients’ hope (45). families about the patient’s diagnosis and prognosis (58).
Still, providers are ethically responsible to provide patients In contrast, research has shown that parental hope
and family members with information about prognosis and significantly increased when pediatric providers offered

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Annals of Palliative Medicine, Vol 8, Suppl 1 February 2019 S43

poor prognosis information and early pediatric palliative prognosis;

care discussions (51,59). Research has suggested that  Explore what the child already knows and what she/
physician communication training enhances their use he wants to know about the condition;
of empathic communication (60), and collaboration of  E x p l a i n m e d i c a l i n f o r m a t i o n a c c o r d i n g t o
physicians and nurses during palliative care discussions developmental age and cognitive abilities;
has been associated with improved parent satisfaction with  Empathize with the child’s reactions, allowing free
provider communication (51). expression of concerns;
Helpful guides for communication are available to  Encourage a child through your presence, but not
patients, their families, and providers. The guidelines reassurance that “everything will be fine”.
acknowledge the importance of trusted relationships and Training pediatric nurses and healthcare providers is
the need to take care in considering best ways to listen to necessary because there are not enough pediatric palliative
one another and share information and feelings. In fact, care specialists available to meet the palliative care needs
experts in pediatric palliative care are adamant the three of children with life-threatening conditions and their
most important procedures in pediatric palliative care are (I) families (63). This healthcare gap necessitates training
listen, (II) listen, and (III) listen. The Conversation Project of pediatric healthcare providers, including nurses, to
was developed to help people talk about their wishes for deliver pediatric palliative care. Basic palliative care
EOL care (61). The Conversation Starter Kit is useful in communication skills can be something that primary care
helping individuals have conversations with family members teams (e.g., physician and nurse dyad) can provide (63).
or loved ones about their goals and wishes at the end of Additional benefits to having the primary team deliver
life. The Pediatric Starter Kit is designed to help parents of pediatric palliative care and communication to families
seriously ill children who want guidance about having the include continuity of care, an ongoing relationship with
conversation with their children. their primary team, and potentially better outcomes (64).
Similar to patient guides, suggestions for best practice For example, active oncologist involvement at the end of
in pediatric palliative care communication are useful to life for a child has been reported as important to parents
inexperienced providers interested in strategies useful in and associated with decreased child pain and suffering
connecting with families on a consistent basis while offering (51,65). Research evaluating early pediatric palliative care
pediatric palliative care. The SPIKES 6-step protocol is communication interventions delivered by nurses and other
used by many pediatric palliative care providers as it instills healthcare providers are greatly needed.
confidence to be straightforward and practical. The steps
involve:
Nursing education in pediatric palliative care
(I) S-SET up the conversation;
(II) P-Assess patient’s PERCEPTIONS; The complex nature of pediatric palliative care necessitates
(III) I-Obtain patient’s INVITATION; comprehensive ongoing educational opportunities for nurses
(IV) K-Give KNOWLEDGE and information to the working with children with life-threatening conditions and
patient; their families. Knowledge of evidence-based best practices
(V) E-Address patient’s EMOTIONS with empathic is a key component of that education, but because of the
response; and nature of working with a vulnerable population, additional
(VI) S-STRATEGIZE and SUMMARIZE. educational elements are essential to quality care. Expertise
Following these steps includes careful attention to non- in communication does not necessarily come with advanced
verbal communication as well as spoken words. Additional degrees and may need to be modeled and practiced by new
guidelines for discussing EOL issues are outlined by nurses. Awareness of specific social and cultural traditions,
Beale et al. (62). The authors stress that the most useful beliefs, values is imperative to addressing child, family,
conversations occur long before a child is terminally ill and and community needs. While providing palliative care,
can be summarized by 6 Es: nurses must acknowledge their own feelings about human
 Establish an agreement with the family members and suffering, working with families in extremely difficult times,
healthcare providers about open communication; and the process of dying. Self-care is a crucial step in the
 Engage with the child at an opportune time, such as educational process. Nurses must provide holistic care and
a new diagnosis, behavioral changes, or a change in address the physical, psychosocial, and spiritual needs of

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S44 Akard et al. Pediatric palliative care nursing

Table 1 Nursing education resources in pediatric palliative care

Pediatric palliative care curricula Primary goal

Center to Advance Palliative Care (CAPC) To provide hospitals, hospices, payers and other healthcare organizations with tools, training,
technical assistance and metrics to implement and integrate palliative care

Hospice and Palliative Care Nurses To advance expert care in serious illness through education, competence, advocacy,
Association (HPNA) leadership, and research, with nursing certification available

Initiative for Pediatric Palliative Care (IPPC) To provide a guided curriculum with videos of family scenarios to assist healthcare
professionals in providing highest quality of palliative care to children and their families

Pediatric End-of-Life Nursing Education To provide materials for nurse educators to provide end-of-life education for nursing students
Consortium (Peds ELNEC) and practicing nurses together

children with life-threatening conditions and their families, patient encounters, computer-based modules and
focusing on the following concepts: discussions, journal keeping, support groups, videos of
 Principles of palliative care; family interactions, small group discussions, clinical case
 Goals of care; discussions, interdisciplinary encounters, and hospice and
 Cultural sensitivity; home visits.
 Quality improvement and evidence-based practice in Agencies identified in Table 1 provide high quality
palliative care; resources to aid in nursing education focused on pediatric
 Interdisciplinary collaboration; palliative care. Accreditation standards in nursing are
 Caring, compassion, humanity, humility, and determined and administered by a variety of agencies
altruism; (Table 2). The standards function as a framework of self-
 Child’s concept of chronic illness; evaluation and on-going curricular development in
 Legal and ethical issues; expanding topics of interest to the profession.
 Family-focused care;
 Quality of life;
Nurses’ role in supporting the community
 Assessment and management of symptoms;
 Complementary and alternative medicine; The emotional strains experienced by parents when making
 Psychosocial care; palliative and EOL care decisions when their child has
 Spiritual care; a serious illness have been documented in the literature
 School and community issues; (66,67). Research has provided increasing evidence that
 Child’s emotional and cognitive development; many young and middle-aged adults are dealing with the
 Child’s concept of death; stressors related to the chronic care of another family
 Home care and hospice care; member (e.g., spouse or elderly parent) (68). Evidence has
 Advanced care planning such as do not resuscitate shown that 78% of Americans have no understanding of the
(DNR), allow natural death (AND); difference between palliative care and hospice care (69).
 Communication of difficult news; Because of the expanded healthcare delivery brought
 Futility; about by the former president Barak Obama’s 2010 Patient
 Withholding or withdrawing of treatment; Protection and the Affordable Care Act, more children
 Death and dying; and adolescents with complex and chronic conditions
 Grief and bereavement; (CCC) and life-limiting conditions are more likely to be
 Practical post-death issues (death certificates, in need of healthcare in traditional health care settings
morgue, medical examiner). (e.g., hospital and clinics), living in the community and
A wide variety of teaching methods are used in educating attending school, and in need of healthcare providers
nurses about pediatric palliative care, including didactic who serve as advocates for their unique healthcare needs
sessions, supervised clinical practica, mentoring, role and preferences in a variety of community settings (e.g.,
play of pre-determined sceneria, simulated/standardized elementary and high school settings) (70). Approximately

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Annals of Palliative Medicine, Vol 8, Suppl 1 February 2019 S45

Table 2 Nursing accrediting organizations

Accrediting organization Mission

American Association of Collegiate Administers educational, research, government advocacy, data collection, publications, and
Nursing (AACN) other programs that work to establish quality standards for bachelor’s and graduate degree
nursing education

National Board for Certification Administers certification examination for hospice and palliative nurses who are then registered
of Hospice and Palliative Nurses as CHPNs (certified hospice and palliative nurses)
(NBCHPN)

National Council of State Boards of Promotes safe and effective nursing practice through administration NCLEX exams and
Nursing (NCSBN) regulating RN licensure

National League for Nursing (NLN) Advances quality nursing education that prepares the nursing work force to meet the needs of
diverse populations in an ever-changing health care environment through nursing education,
faculty development, education research, data collection, assessment, and evaluation

National League of Nursing Takes responsibility for specialized accreditation of nursing education schools and programs,
Accreditation Commission (NLNAC) both post-secondary and higher degrees

2,500 adolescents and 1,400 preadolescent children in the and teachers and provide them with accurate and timely
United States are within 6 months of dying from a CCC information (72). Recognizing school nurses’ roles and
each day, and affected children are increasingly dying opportunities and appropriately equipping them could assist
in the community and outside of medical setting (70). school nurses to empower parents to consider pediatric
Additionally, the Individuals with Disabilities Education Act palliative care prior to having a child with a serious or life-
of 1997 and the Rehabilitation Act of 1973 has provided threatening condition.
policies that ensure children with health care needs will be
accommodated and able to attend school (70). Therefore,
Conclusions
school nurses are in a unique position to be responsible,
not only for the healthcare needs of children with CCC, Certainly, nurses play a significant role in caring for
but to also assess and honor the preferences of children children living with, suffering from, and dying of life-
with complex healthcare needs attending school. For threatening conditions. More research is needed to
example, school-age and adolescent aged children life- continue advancing the science of pediatric palliative
limiting conditions may prefer to attend school without nursing care, to further improve our understanding for how
the risk of having resuscitation efforts attempted in the to enhance life and decrease suffering for these vulnerable
event they had a cardiopulmonary arrest event during children and their families who are high risk for negative
school (71). Shockingly, evidence exists that (I) 80% of consequences. In general, the field is ready to move from
surveyed school districts do not have policies, regulations or descriptive to intervention work and expand research
protocols in place to deal with DNR orders or preferences populations to include non-cancer diagnoses. Nursing
by their students and their parents; and (II) 76% of the researchers must step up and pave the way to develop
surveyed school districts would not honor student DNR and carry out rigorous interdisciplinary studies to further
wishes or were uncertain if they could honor specified advance the science of pediatric palliative care. Taking
DNR preferences by students and families (71). Therefore, advantage of funding opportunities (e.g., National Institute
parents of children with CCC attending community schools of Nursing Research funding for palliative care and EOL
would especially benefit from receiving information about research), seeking leadership roles within national palliative
DNR and palliative care options and potential related care organizations (e.g., Hospice and Palliative Nurses
benefits for children with CCC and life-limiting conditions. Association), and mentoring students and junior scientists
School nurses should receive DNR and pediatric palliative to build the next generation are examples of roles that
care training on their role and responsibilities to effectively pediatric palliative care nurse researchers must fill. More
advocate for children with serious illnesses, their parents, attention to better equipping nurses at the bedside and

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S46 Akard et al. Pediatric palliative care nursing

other healthcare professionals in pediatric palliative care qualitative work to intervention development in pediatric
is essential to providing the best clinical care to children oncology palliative care research. J Pediatr Oncol Nurs.
and their families and supporting the community at large. 2013;30:153-60.
Finally, nurses are in ideal positions to bridge potential 6. Chochinov HM, Hack T, Hassard T, et al. Dignity
gaps between providers across disciplines, children and therapy: a novel psychotherapeutic intervention for
their family members, researchers and clinicians, students patients near the end of life. J Clin Oncol 2005;23:5520-5.
and mentors, communities and politicians so that we are all 7. Coyle N. The hard work of living in the face of death. J
working together in one accord to improve life for children Pain Symptom Manage 2006;32:266-74.
living with life-threatening conditions and their families. 8. Foster TL, Dietrich MS, Friedman DL, et al. National
survey of children's hospitals on legacy-making activities. J
Palliat Med 2012;15:573-8.
Acknowledgements
9. Foster TL, Gilmer MJ, Davies B, et al. Bereaved parents'
Funding: This paper includes work supported by funding and siblings' reports of legacies created by children with
from the National Institute of Nursing Research cancer. J Pediatr Oncol Nurs 2009;26:369-76.
(1R01NR015353 to TF Akard); American Cancer Society 10. Levetown M, Liben S, Audet M. Palliative care in the
(IRG-58-009-54 to TF Akard); Robert Wood Johnson pediatric intensive care unit. In: Carter BS, Levetown
Foundation (68045 to TF Akard); Zoetis Animal Health (to M. editors. Palliative Care for Infants, Children, and
MJ Gilmer); National Center for Advancing Translational Adolescents: A Practical Handbook. Baltimore: Johns
Sciences/National Institutes of Health (UL1 TR000445); Hopkins University Press, 2004:275-93.
and support from the Palliative Care Research Cooperative 11. Hinds PS, Schum L, Baker JN, et al. Key factors affecting
funded by the National Institute of Nursing Research dying children and their families. J Palliat Med 2005;8
(U24NR014637). Suppl 1:S70-8.
12. Lanctot D, Morrison W, Koch K. Spiritual dimensions. In:
Carter BS, Levetown M, Friebert SE. editors. Palliative
Footnote
Care for Infants, Children, and Adolescents: A Practical
Conflicts of Interest: The authors have no conflicts of interest Handbook 2nd ed. Baltimore, MD: Johns Hopkins Press,
to declare. 2011:227-43.
13. McSherry M, Kehoe K, Carroll JM, et al. Psychosocial and
spiritual needs of children living with a life-limiting illness.
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Cite this article as: Akard TF, Hendricks-Ferguson VL,

Gilmer MJ. Pediatric palliative care nursing. Ann Palliat Med
2019;8(Suppl 1):S39-S48. doi: 10.21037/apm.2018.06.01

© Annals of Palliative Medicine. All rights reserved. [Link] Ann Palliat Med 2019;8(Suppl 1):S39-S48