713451

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JPOXXX10.1177/1043454217713451Journal of Pediatric Oncology NursingRanallo

Article
Journal of Pediatric Oncology Nursing

Improving the Quality of End-of-Life

1­–7
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Hematology/Oncology Nurses
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Through the Early Implementation DOI: 10.1177/1043454217713451

https://doi.org/10.1177/1043454217713451
journals.sagepub.com/home/jpo

of Palliative Care

Lauren Ranallo, MSN, RN, AOCNS, CPHON1

Abstract
Providing end-of-life care to children with cancer is most ideally achieved by initiating palliative care at the time
of diagnosis, advocating for supportive care throughout the treatment trajectory, and implementing hospice care
during the terminal phase. The guiding principles behind offering palliative care to pediatric oncology patients are the
prioritization of providing holistic care and management of disease-based symptoms. Pediatric hematology-oncology
nurses and clinicians have a unique responsibility to support the patient and family unit and foster a sense of hope,
while also preparing the family for the prognosis and a challenging treatment trajectory that could result in the child’s
death. In order to alleviate potential suffering the child may experience, there needs to be an emphasis on supportive
care and symptom management. There are barriers to implementing palliative care for children with cancer, including
the need to clarify the palliative care philosophy, parental acknowledgement and acceptance of a child’s disease and
uncertain future, nursing awareness of services, perception of availability, and a shortage of research guidance. It is
important for nurses and clinicians to have a clear understanding of the fundamentals of palliative and end-of-life care
for pediatric oncology patients to receive the best care possible.

Keywords
pediatric palliative care, pediatric oncology, end-of-life care, hospice care

Introduction
Palliative care is specialized medical care that benefits
those suffering from chronic and/or terminal illnesses by
placing priority on pain and symptom management to
achieve optimal quality of life. When implementing pallia-
tive care in pediatric oncology patients, a unique set of bar-
riers present themselves, including definitional and scope
misconceptions about palliative care, prognostic uncer-
tainty, parental fears and misunderstandings, nursing aware-
ness and challenges, perception of availability, and limited
research. The ultimate goals of palliative care include
enrichment of life, reduction of suffering, optimization of
function, and provision of opportunities for personal and
spiritual growth (Foster, Lafond, Reggio, & Hinds, 2010).
The terms palliative care and hospice care are often used
incorrectly in place of one another. It is important to distin-
guish the difference between the 2 care domains. Although
connected by the goal of symptom management, palliative
care is supportive care, whereas hospice care is supportive
care with an emphasis on the dying patient and their family.
It is important for hematology-oncology nurses to have
a fundamental understanding of the concepts of palliative
care and hospice care in order for them to be able to advo-
cate for appropriate services for their patients. It is impera-
tive that they comprehend the scope of each service,
including strengths and limitations. Nurses often have the
most contact with patients and families, so they are in an
excellent position to alleviate patient and family miscon-
ceptions about terminology and care implications and sub-
sequently advocate for the appropriate specialized care.
Palliative care works best as an interdisciplinary effort,
therefore, having clear definitions and messages for fami-
lies allows for the most appropriate care for the patient.
Palliative Care
Palliative care for children is the holistic care of the
child’s mind, body, and spirit beginning at the time of
1
Children’s Hospital of Wisconsin, Milwaukee, WI, USA
Corresponding Author:
Lauren Ranallo, MSN, RN, AOCNS, CPHON, Children’s Hospital of
Wisconsin, PO Box 1997, MS 610, Milwaukee, WI 53201-1997, USA.
Email: lauren.ranallo@gmail.com
2 Journal of Pediatric Oncology Nursing 00(0)
diagnosis and continuing through the illness trajectory,
regardless of whether the child receives curative therapy
(World Health Organization [WHO], 2016b). The WHO
(2016a) definition of palliative care does not contain the
words death or dying; it emphasizes pain and symptom
relief through early detection and management of dis-
ease. The scope of pediatric palliative care includes the
management of the patient’s symptoms and disease.
The goals of palliative care for any patient population
are the optimization of quality of life, enhancement of
bereavement outcomes for survivors if death does occur,
and cultivation of more confident clinicians (Sahler,
Frager, Levetown, Cohn, & Lipson, 2000). The basic
principles of palliative care acknowledge death as a natu-
ral process and incorporate the integration of the physi-
cal, emotional, and spiritual aspects of care. Its initiation
is intended to diminish symptom exacerbations and shift
the focus to comfort care, resulting in an enhanced qual-
ity of life for both the child and parents. In pediatrics,
establishing and providing a support system for the child
and family members is also a quintessential element of
palliative care. Its implementation may also help estab-
lish the foundation for a trusting relationship between the
family unit and health care staff in planning for and pro-
viding the best care throughout the treatment trajectory
and at the end of life (Sahler et al., 2000).
It is important to introduce palliative care early in the
treatment trajectory. Pediatric programs welcome patients
in the early stages of disease and will support children
through survivorship or until the end of life (Washam,
2010b). There are no restrictions on palliative care
initiation.
In 2014, the WHO and Worldwide Palliative Care
Alliance identified 1.7 million children worldwide who
would benefit from the implementation of palliative care,
70% of whom were at the end of life (Worldwide
Palliative Care Alliance, 2014). According to Bernat
(2008), like adults, children with terminal illnesses expe-
rience pain and suffering and have the same needs for
palliative care throughout treatment. Underutilization is
likely related to lack of awareness, prognostic uncer-
tainty, perception of availability, and definitional miscon-
ceptions about the care implications.
Hospice Care
Hospice care, or targeted end-of-life care, is a specialized
type of care designed to focus on quality of life rather
than length, accepting death as the final stage of life
(American Cancer Society, 2016). Palliative care has no
prognostic limits, whereas hospice care is designed for
individuals for whom death is more imminent. When
broaching the topic of implementing hospice care for a
child, it is important for the parents to have an
understanding that their child is actively dying or will
most likely die within 6 months. Hospice care implemen-
tation should be approached gently; one may begin by
introducing the topic with questions such as, “Do you
expect your child to live to adulthood?” or “Would you be
surprised if your child died within the next 6 months or
year?” (National Hospice and Palliative Care
Organization, 2009). Once hospice care is implemented,
it is possible that the child will have a more peaceful
experience since the focus of the care is now on comfort.
Challenges in the Initiation of
Pediatric Palliative Care
Prognostic Uncertainty
It is often difficult to predict the illness trajectory for a
child and that uncertainty is a significant challenge that
pediatric oncology providers encounter in their practice.
Goals of care are almost always both curative and sup-
portive in nature, that is, a child may be receiving cura-
tive therapies, such as chemotherapy and radiation,
alongside other medications designed to alleviate dis-
ease-based symptoms and side effects, such as opioids
and antiemetics. Often, curative treatments are tried until
the patient exhibits clinical signs that he or she is at the
end of life and clinicians are certain of the child’s immi-
nent demise. If palliative care has not already been imple-
mented, acknowledging the uncertainty of a prognosis
may serve as an impetus for providers to incorporate it
into the treatment plan, although implementing palliative
care at the time that a child is already dying is a missed
opportunity. Once a child is at the end of life, hospice care
should be implemented and goals of care should be rede-
fined. Mack and Wolfe (2006) found that even in situa-
tions when the disease trajectory had a more predictable
period of decline before death, the implementation of pal-
liative care still occurred late in the disease course, lead-
ing to additional missed opportunities for pain and
symptom management.
In situations like this, parents may be in conflict with
providers if they maintain a more hopeful outlook on the
situation. This can go both ways, though. Physician com-
munication can focus solely on the next treatment and
end-of-life discussions may be put off since they are dis-
tressing to both provider and parent (Seth, 2010). With
early implementation of palliative care, at diagnosis or
soon thereafter, a parent may be able to see end-of-life
care as part of the spectrum of palliative to end-of-life
care and not a huge change.
If a child’s prognosis and end-of-life options are not
openly discussed by the provider, then this may cause
moral distress for nurses and other providers. While at the
bedside, nurses may be asked questions by parents and
Ranallo 3
family members about the likelihood of a child recover-
ing, leading to miscommunication and mistrust at all lev-
els. Moral distress can occur for physicians too. According
to Davies et al. (2008), providers who feel obligated to
continue aggressive curative therapies due to the parent’s
inability to accept the reality of the situation may struggle
with their own distress. Earlier collaboration with the pal-
liative care team may help alleviate some provider guilt
since the focus and goals of care would be on both com-
fort and cure from the beginning.
Parental Acknowledgement and Acceptance
When parents are confronted with the reality that their
child has cancer and that the child will not survive the
cancer diagnosis, they must have the opportunity to
grieve the lack of curative treatment options, regardless
of whether palliative care has already been implemented.
Once the parent has grieved the loss of the future they had
envisioned for their child, they may begin to embrace the
end-of-life care philosophy and incorporate it into the
plan of care in order to redefine goals. Denial, often asso-
ciated with fear, is a powerful coping mechanism. Parents
may intellectually understand what is happening to their
child, but may consciously or unconsciously refuse to
acknowledge it. Denial may also help parents have
enough emotional stamina to support their child.
However, this can become a significant barrier to the
implementation of end-of-life care if the terminal nature
of the disease is neither recognized nor acknowledged
(Davies et al., 2008). Parents may have a difficult time
seeing other children recover when their own child is not
making the same progress. They may need to see actual
physical or behavioral changes before they can begin to
recognize that their child is dying (Davies et al., 2008). At
that point, parents typically begin to feel more helpless.
According to some collective norms, it is a shared belief
that children have a right to adulthood. A childhood death
is a disturbance in the natural order of life and therefore
inevitably evokes feelings of vulnerability, powerless-
ness, and injustice (Sahler et al., 2000).
Unfortunately, due to lack of palliative care imple-
mentation, largely because of lack of understanding of
what palliative care entails, parents of children dying
from cancer report increased suffering at the end of life
due to inadequate management of symptoms (Foster
et al., 2010). This ultimately becomes a significant emo-
tional burden on the family. In a study of 141 parents of
children dying of cancer, over 10% of parents said that
they would consider hastening their own child’s death
when they believed that their child was in pain to allevi-
ate suffering (Dussel et al., 2010). The quality of the
dying experience is overlooked when emphasis remains
on hope for a cure rather than comfort and quality of life.
Communication barriers may also result in inadequate
pain control and symptom management.
When cure is no longer an option, parents have to
redefine hope. They often struggle with the decision to
forego curative therapy even when it offers no further
benefit. It is important to have a thorough discussion of
shifting expectations from cure to comfort and redefining
goals of care with parents to alleviate any lingering feel-
ings of guilt that they may be experiencing (Kars et al.,
2011). They also need to know and be reminded that
implementing hospice care does not symbolize failure or
giving up hope; it represents a new care emphasis on
comfort and quality of life “[to] ensure a good life before
a good death” (Neeley, 2009). According to Ann
Armstrong-Daily, founding director of the Virginia-based
Children’s Hospice International, parents are generally
uncomfortable with palliative or hospice care because
implementing either care is interpreted as “giving up.”
Parents have told Ann that after enrollment in hospice,
many regret not enrolling their children sooner. One par-
ent stated, “I wish I’d known about [it] earlier” (Washam,
2010a).
Nursing Awareness
Nurses are advocates for their patients and globally, they
may serve as advocates for services from which their
patients would benefit. It is important for nurses to have
an understanding of the scope of palliative care and how
it differs from hospice care. As a member of a multidisci-
plinary treatment team, a nurse has a unique lens; he or
she is trained in providing holistic care to a patient, so
advocating for supportive care services is something that
the nurse often considers. A nurse who has a foundational
understanding of what palliative care is and what it can
offer a patient is able to be a stronger advocate for the
patient.
In 2010, a nursing research study was conducted in
which 12 oncology nurses’ attitudes and perceptions
toward palliative care were examined (Mahon &
McAuley, 2010). Nurses were interviewed and asked the
questions, “What is palliative care?” “Who should receive
palliative care?” and “Who makes decisions about pallia-
tive care?” The nurses’ perceptions of palliative care pri-
marily focused on symptom management and most were
unable to distinguish between palliative care and hospice
care. While a few participants felt that palliative care
should be universally offered to anyone with a cancer
diagnosis, the majority felt that palliative care was offered
based on criteria, including illness specifics, degree of
suffering, and end-of-life care. Of the sample of 12 nurses
in the study, a handful of them did not see a role for them-
selves in decision making or advocacy regarding pallia-
tive care due to perceived limiting inclusion criteria.
4 Journal of Pediatric Oncology Nursing 00(0)
When researched through the lens of palliative care,
oncology nurses identified 5 primary nursing roles: car-
ing, teaching, mobilizing, coordinating, and advocating
while providing end-of-life care to their patients, with
communication connecting all 5 of these functions
(Pavlish & Ceronsky, 2009). A nurse is a caretaker who
also exemplifies the characteristics of a teacher, a care
coordinator, and a patient advocate, and must have the
ability to identify and mobilize resources. In addition to
the 5 primary nursing roles, Pavlish and Ceronsky (2009)
also identified 7 professional attributes that were
described in all 5 roles: clinical expertise, presence, fam-
ily orientation, honesty, perceptive attentiveness, collabo-
ration, and deliberateness. In order for a patient who is a
candidate for palliative care to benefit from all the ser-
vices it has to offer, the nurse must exhibit the aforemen-
tioned professional attributes and be intentional about his
or her communication with the patient, family, and treat-
ment team. A nurse may be the optimal member of the
care team to assess the family’s understanding of the
information and to provide clarification because the edu-
cation that a nurse receives emphasizes relational caring
(Davies et al., 2008).
Perception of Availability
Nurses are at the patient’s bedside more consistently than
providers; therefore, this gives nurses a unique opportu-
nity to advocate earlier and more strongly for palliative
care services. In a 2013 study that gauged clinicians’ per-
ceptions of the adequacy and availability of palliative
care services for pediatric oncology patients, both nurses
and advanced practice nurses identified unmet needs,
whereas physician providers did not. Physicians were
only recommending palliative care, not hospice care,
when cure was no longer an option for the patients; bed-
side nurses and advanced practice nurses identified this
as an area of opportunity to proactively involve palliative
care earlier (Dahlberg et al., 2013).
Lack of Research
There is a growing body of research in this area, but more
is needed. We do not know enough about how best to
implement palliative care in the pediatric oncology popu-
lation. Palliative care and hospice patients across the age
continuum are considered vulnerable populations; there-
fore, there is debate over the appropriateness of recruiting
participants for research studies (Wohleber, McKitrick, &
Davis, 2012). Hinds et al. (2005) enrolled 20 pediatric
and adolescent patients dying of cancer in a research
study in which participation in 1 of 3 end-of-life care
options was explored, including aggressive symptom
management, a Phase I study, or a Do-Not-Resuscitate
status. Of the 20 patients, only 8 made decisions about
aggressive symptom management, labeled terminal care,
and elected among palliative chemotherapy and radia-
tion, oral pain management, and alternative therapies.
Since children and adolescents are legally unable to
advocate for themselves, their ability to participate in
research is limited by age to assent or consent. Although
perceptions of research studies are slowly changing and
parents are becoming more willing to participate in stud-
ies in this area, there are some who may still be reluctant
to do so when the research focuses on their dying child.
Changing Perceptions of Palliative
Care
Changing perceptions of palliative care and having an
understanding of the scope of care may help support ear-
lier utilization in pediatric oncology patients and ensure a
role for palliative care throughout the treatment trajec-
tory. In addition to overcoming misconceptions, it is
important in the success of early palliative care imple-
mentation for parents and families to feel supported and
nurses and providers to receive appropriate training and
education.
Supporting and Empowering the Parent
In order to support the parent of a child with cancer, it is
important that the parent have an early understanding of
what services are available to their child outside of the
mainstream curative therapies, including chemotherapy,
radiation, and surgery. Palliative care may be an after-
thought by the treatment team at a time when the child is
not doing well. When a parent hears that the palliative
care team wants to consult on his or her child, there may
be a sense of impending doom that the child is dying
because of the misconceptions that exist about palliative
care versus hospice/end-of-life care. Introduction to the
full range of services that palliative care has to offer at a
time when the child is doing well allows for information
to be better absorbed and could help parents advocate for
their children in more engaged ways.
Parents tend to place a higher value on relational care
than clinicians; they value the expertise of the specialists
and seek out emotional support from the treatment team
(Heinze & Nolan, 2012). Parents appreciate empathy and
genuineness on the part of health care professionals,
including social workers, chaplains, child life specialists,
and psychologists. A family-centered approach to pallia-
tive or end-of-life care (depending on the need) requires
both the input of the parents and the health care team in
order to truly meet the definition (Hawley, 2010). Having
open conversations about unexpected changes in the
child’s condition may help parents feel empowered to ask
Ranallo 5
questions and have more of a voice in the decision mak-
ing and goal planning.
Nursing and Provider Communication
Health care providers have educational needs regarding
palliative and end-of-life care education. A recent study
demonstrated that 75% of physician providers do not
have education focusing on this aspect of care and 50% of
nurses said that they feel unprepared and unqualified to
manage end-of-life symptoms (Neeley, 2009). Davies
et al. (2008) noted the importance of aligning the health
care team’s treatment plan and goals with those of the
parent and child. The physician is ultimately responsible
for presenting all treatment options and helping the nurse
shape goals of care.
Professional education regarding palliative care and
end-of-life care requires a focus on the development of
effective communication skills, as well as the allotment
of adequate time to allow for discussions of this nature
(Davies et al., 2008). A hands-on approach in learning
how to care for end-of-life patients is beneficial; there-
fore, practicing sensitive conversations through role play
is important (O’Shea & Bennett Kanarek, 2013).
Although training programs designed to help guide the
provision of evidence-based care and proper symptom
management are in existence, they have not been stan-
dardized and consistently made available in the clinical
practice setting (Heinze & Nolan, 2012). The implemen-
tation of such education and training does not need to be
a significant health care cost, but does require a commit-
ment by those individuals who are interested in under-
standing communication around terminal illness and
death as part of the life cycle. Institutions would benefit
from having a diversity of outlets to accommodate indi-
vidual styles of learning, as well as a form of competency
testing for these oncology nurses and end-of-life care
providers.
Although dated, Sahler et al. (2000) identified 6 cur-
ricular elements that define pediatric end-of-life care that
should be taught to aspiring nurses and clinicians in order
to foster competence in providing patient-centered care.
The elements include developing partnerships with fami-
lies and supporting them in their caregiving roles, using
cognitively and developmentally appropriate communi-
cation styles with families, sharing information with
patients to help them feel included, serving the needs of
the patient through the ethical principle of self-determi-
nation, managing pain and other symptoms, and address-
ing personal needs and challenges. These elements help
provide a framework for communicating with an the
child at the end of life and the family unit.
More recently, Morgans and Schapira (2015) identi-
fied 3 communication strategy ideals that oncologists
should use when interacting with families, including rec-
ognizing process tasks when it comes to discussing prog-
nosis, deciding on strategies when empowering families
and presenting them with information about certain treat-
ments, and employing sharpened communication skills,
including assessing the child’s and parent’s understand-
ing, to establish a therapeutic relationship. Morgans and
Schapira believe that a physician should be as intentional
about using these communication strategies as when he
or she is writing chemotherapy orders. Pediatric oncol-
ogy nurses may also benefit from these strategies. By
being strategic about when information is given to a fam-
ily and assessing understanding, nurses may be able to be
more intentional with which communication styles they
use.
Nurses are encouraged to adapt their communication
styles to meet the needs of their learners. Visual aids and
drawings may further help a child understand what is
happening to him or her. Gradually introducing medical
terminology rather than introducing it all at once is help-
ful for adolescents and young adults, as well as parents. It
is appropriate for a nurse to ask a parent or older child
about their preferred learning methods as well.
It is necessary for all health care providers, especially
those who interact with the family unit, to learn to exhibit
mindfulness and self-awareness. “Whether intentional or
not [communication], occurs all the time between nurses
and patients in every aspect of care” (Dahlin, 2010, p.
111). According to Bell (2012), providers’ spoken or
unspoken communication can encourage or inhibit fur-
ther conversations with patients and families. Allowing
for silence in a conversation demonstrates compassion on
the part of the clinician and gives families permission to
express their grief. Repeated conversations are important
because not all information is retained at the time of the
first discussion. Nurses need to be able to learn the skill
of listening with the intention of learning rather than
reacting. “Listening is [the] most important gift palliative
care specialists can provide to patients and their families”
(O’Shea & Bennett Kanarek, 2013, p. 40). Patients and
parents need to know that they are in a safe environment
that is conducive to an uninterrupted exchange of thoughts
and feelings.
Nurses and clinicians both need to have an awareness
of how to effectively communicate with the family of a
dying child. Refraining from making seemingly comfort-
ing statements, such as “I know how you feel” and replac-
ing those with open-ended sensitive questions, such as,
“Help me to understand . . . ” or “Tell me a little bit more
about . . . ” can help identify the family’s needs and
desires as well (Mullen, Reynolds, & Larson, 2015).
Self-reflection groups, professional counseling, and
roundtable discussions are forums that nurses may find
beneficial in helping them confront their own thoughts
6 Journal of Pediatric Oncology Nursing 00(0)
and feelings and develop relational skills sets. Without
proper education, skills set, and support that nurses in this
unique role require, the optimal patient care may not be
delivered.
Conclusion
The goals of palliative care for any patient population
include pain and symptom management, establishing a
support system for the patient and family unit, and opti-
mizing quality of life. It is imperative for pediatric hema-
tology-oncology nurses and providers to understand that
palliative care may be implemented at the beginning of a
treatment trajectory to ensure the best quality of life for the
child through symptom management and comfort care.
Parents, providers, and nurses must be able to collabo-
rate well in order to provide the best care possible to a
child with a cancer diagnosis. There are several barriers
to implementing palliative care to a child with cancer,
including misconceptions about its implementation,
whether at the time of diagnosis or at any point through-
out the treatment trajectory, parental acknowledgement
that their child is dying, nursing challenges, perception of
availability, and insufficient pediatric research. Curative
treatments may coincide with palliative care and be con-
tinued until they no longer provide a medical benefit to
the child. Both nurses and providers would benefit from
standardized education about the scope of palliative care
and end-of-life care education and training, and unless
that consistently occurs, there will likely be a learning
deficit for the health care team and an increased likeli-
hood that a dying child will not receive optimal end-of-
life care. The child with a cancer diagnosis will likely
only achieve optimal quality of life with the early recog-
nition for and implementation of palliative care.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.
Funding
The author(s) received no financial support for the research,
authorship, and/or publication of this article.
References
American Cancer Society. (2016). What is hospice care?
Retrieved from http://www.cancer.org/treatment/findin-
gandpayingfortreatment/choosingyourtreatmentteam/hos-
picecare/hospice-care-hospice-care
Bell, C. (2012). Approaching end-of-life discussions with ado-
lescents and young adults. APHON Counts, 26(4), 12.
Bernat, J. L. (2008). Dying and palliative care. In Ethical issues
in neurology (3rd ed., pp. 151-171). Philadelphia, PA:
Lippincott Williams & Wilkins.
Dahlberg, T., Jacob-Files, E., Carney, P., Meyrowitz, J.,
Fromme, E., & Thomas, G. (2013). Pediatric oncology
providers’ perceptions of barriers and facilitators to early
integration of pediatric palliative care. Pediatric Blood &
Cancer, 60, 1875-1881.
Dahlin, C. M. (2010). Communication in palliative care: An
essential competency for nurses. In B. R. Ferrell & N.
Coyle (Eds.), Oxford textbook of palliative nursing (3rd
ed., pp. 107-133). New York, NY: Oxford University Press.
Davies, B., Sehring, S., Partridge, J. C., Cooper, B., Hughes, A.,
Philip, J., . . . Kramer, R. (2008). Barriers to palliative care
for children: Perceptions of pediatric health care provid-
ers. Journal of the American Academy of Pediatrics, 121,
282-288.
Dussel, V., Joffe, S., Hilden, J., Watterson-Schaeffer, J., Weeks,
J., & Wolfe, J. (2010). Considerations about hastening death
among parents of children who die of cancer. Archives of
Pediatrics and Adolescent Medicine, 164, 231-237.
Foster, T., Lafond, D., Reggio, C., & Hinds, P. (2010). Pediatric
palliative care in childhood cancer nursing: From diagnosis
to cure or end of life. Seminars in Oncology Nursing, 26,
205-221.
Hawley, B. (2010). Pediatric palliative and hospice care:
Pennsylvania’s model of collaboration. Pediatric Nursing
Journal, 36, 61-67.
Heinze, K., & Nolan, M. (2012). Parental decision making for
children with cancer at the end of life: A meta-ethnography.
Journal of Pediatric Oncology Nursing, 29, 337-345.
Hinds, P. S., Drew, D., Oakes, L. L., Fouladi, M., Spunt, S.
L., Church, C., & Furman, W. L. (2005). End-of-life care
preferences of pediatric patients with cancer. Journal of
Clinical Oncology, 23, 9146-9154.
Kars, M., Grypdonck, M., Korte-Verhoef, M., Kamps, W.,
Meijer-van den Bergh, E., Verkerk, M., & van Delden, J.
(2011). Parental experience at the end-of-life in children
with cancer: “Preservation” and “letting go” in relation to
loss. Supportive Cancer Care, 19, 27-35.
Mack, J., & Wolfe, J. (2006). Early integration of pediatric pal-
liative care: For some children, palliative care starts at diag-
nosis. Current Opinion in Pediatrics, 18(10), 10-14.
Mahon, M., & McAuley, W. (2010). Oncology nurses’ personal
understandings about palliative care. Oncology Nursing
Forum, 37(3), E141-E150.
Morgans, A. K., & Schapira, L. (2015). Confronting therapeutic
failure: A conversation guide. The Oncologist, 20, 946-951.
Mullen, J., Reynolds, M., & Larson, J. (2015). Caring for pedi-
atric patients’ families at the child’s end of life. Critical
Care Nurse, 35(6), 46-55.
National Hospice and Palliative Care Organization. (2009).
Standards of practice for pediatric palliative care and hos-
pice [Brochure]. Alexandria, VA: Author.
Neeley, S. M. (2009). Barriers to pediatric hospice care. Journal
of Hospice & Palliative Nursing, 11, 8-9.
O’Shea, E., & Bennett Kanarek, R. (2013). Understanding
pediatric palliative care: What it is and what it should be.
Journal of Pediatric Oncology Nursing, 30, 34-44.
Pavlish, C., & Ceronsky, L. (2009). Oncology nurses’ percep-
tions of nursing roles and professional attributes in pal-
liative care. Clinical Journal of Oncology Nursing, 13,
404-412.
Ranallo 7
Sahler, O., Frager, G., Levetown, M., Cohn, F., & Lipson, M.
(2000). Medical education about end-of-life care in the pedi-
atric setting: Principles, challenges, and opportunities. Journal
of the American Academy of Pediatrics, 105, 575-584.
Seth, T. (2010). Communication to pediatric cancer patients
and their families: A cultural perspective. Indian Journal
of Palliative Care, 16, 26-29.
Washam, C. (2010a). Fears, misconceptions keeping children
from best end-of-life care. Oncology Times, 32(12), 50, 53.
Washam, C. (2010b). Pediatric end-of-life: How better com-
munication can facilitate end-of-life care for children.
Oncology Times UK, 7(6), 17-18.
Wohleber, A., McKitrick, D., & Davis, S. (2012). Designing
research with hospice and palliative care populations.
American Journal of Hospice & Palliative Medicine, 29,
335-345.
World Health Organization. (2016a). Cancer: Palliative care is
an essential part of cancer control. Retrieved from http://
www.who.int/cancer/palliative/en/
World Health Organization. (2016b). WHO definition of pal-
liative care. Retrieved from http://www.who.int/cancer/
palliative/definition/en/
Worldwide Palliative Care Alliance. (2014). Global atlas
of palliative care at the end of life [Brochure]. London,
England: Author.
Author Biography
Lauren Ranallo, MSN, RN, AOCNS, CPHON is a clinical
nurse specialist for the hematology, oncology, and stem cell
transplant patient populations at Children’s Hospital of
Wisconsin.