Clinical Medicine Insights: Pediatrics

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The Nursing Dimension of Providing Palliative Care

to Children and Adolescents with Cancer
Sharron L. Docherty1, Cheryl Thaxton2,3, Courtney Allison3, Raymond C. Barfield2,4 and Robert F.
Tamburro5
Duke University, School of Nursing, 2Duke University Medical Center, Pediatric Quality of Life Program, 3Duke University
Medical Center, Pediatric Nursing, 4Duke University, School of Medicine, Department of Pediatrics, Division of Pediatric
Hematology/Oncology, 5Penn State Hershey Childrens Hospital, Pennsylvania State University College of Medicine,
Departments of Pediatrics and Public Health Sciences. Corresponding author email:
1

Abstract: Palliative care for children and adolescents with cancer includes interventions that focus on the relief of suffering,
optimization of function, and improvement of quality of life at any and all stages of disease. This care is most effectively provided
by a multidisciplinary team. Nurses perform an integral role on that team by identifying symptoms, providing care coordination, and
assuring clear communication. Several basic tenets appear essential to the provision of optimal palliative care. First, palliative care
should be administered concurrently with curative therapy beginning at diagnosis and assuming a more significant role at end of life.
This treatment approach, recommended by many medical societies, has been associated with numerous benefits including longer survival. Second, realistic, objective goals of care must be developed. A clear understanding of the prognosis by the patient, family, and all
members of the medical team is essential to the development of these goals. The pediatric oncology nurse is pivotal in developing these
goals and assuring that they are adhered to across all specialties. Third, effective therapies to prevent and relieve the symptoms of suffering must be provided. This can only be accomplished with accurate and repeated assessments. The pediatric oncology nurse is vital
in providing these assessments and must possess a working knowledge of the most common symptoms associated with suffering. With
a basic understanding of these palliative care principles and competency in the core skills required for this care, the pediatric oncology
nurse will optimize quality of life for children and adolescents with cancer.
Keywords: palliative care, pediatrics, nursing, cancer

Clinical Medicine Insights: Pediatrics 2012:6 7588

doi: 10.4137/CMPed.S8208
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Clinical Medicine Insights: Pediatrics 2012:6

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Docherty etal

Introduction

Palliative care for children and adolescents with cancer includes interventions that focus on the relief of
suffering, optimization of function, and improvement
of quality of life at any and all stages of disease. Goal
setting for this care is most effectively accomplished
by a team that includes the child, parents, and siblings
working in partnership with a multidisciplinary medical team. The multidisciplinary team often includes,
but is not limited to, child life experts, social workers,
physical therapists, pharmacists, nurses, and physicians from a host of specialty services.
Nurses play a key role on the palliative care team.
They often bring cohesion and care coordination to
the multidisciplinary effort. Nurses are often the first
to identify the suffering needs of a patient.1 They are
present at the bedside or in the clinic for extended
periods of time and, thus, have unique opportunities to assess and explore child and family needs.
This perspective places them in a vital position to
facilitate care directed towards the relief of suffering
and the implementation of palliative care. However,
according to the End-of-Life Nursing Education
Consortium (ELNEC) project, a national end-of-life
educational program administered by City of Hope
National Medical Center and the American Association of Colleges of Nursing (AACN), fewer than
14,000 nurses have been formally trained in palliative
care.2 Other national and international palliative care
training programs are available (eg, the Initiative for
Pediatric Palliative Care (IPPC), the Stanford End of
Life Curriculum Project, and the Resolve Through
Sharing program) that focus on pain and symptom
management, communication strategies, care at the
end of life, ethics, and other aspects of palliative care;
however, access to these programs by nurses remains

a challenge. Thus, the vast majority of nurses are not

equipped with the specialized knowledge and skills
needed to provide quality palliative care to children
and their families.
The role of the physician in providing palliative
care to children and adolescents with cancer has been
well described in the literature, yet relatively little has
been written about the unique role that nurses play on
the palliative care team.3,4 The purpose of this paper
is to discuss the nursing dimension of palliative care
for children and adolescents with cancer. We will
describe the concurrent palliative care model, review
the impact of patient prognosis on palliative care, and
discuss the establishment of realistic treatment goals.
We will also cover the assessment of patient needs as
well as the prevention and relief of suffering.

The Delivery of Palliative Care

Concurrently with Life Prolonging
Care

More than a decade has passed since the American

Academy of Pediatrics (AAP)5 and the Institute of
Medicine (IOM)6 called for the integration of palliative care into ongoing medical management of children with life-threatening illnesses from the point
of diagnosis to the end of life (Fig. 1). Since that
time, models of integrated pediatric palliative care
have been developed in which both curative therapy
and palliative care coexist. As cure-oriented treatment options decrease, the role of palliative care
increases. Hospice services are offered at the end
of the continuum of care.7 In this model, concurrent
care is defined as the introduction of palliative care
principles at the time of a life-threatening diagnosis,
with increasing support over time as the disease progresses that includes multidimensional assessment
Death

Diagnosis of life-threatening
or debilitating illness or injury

Disease-modifying treatment

Palliative care

Hospice care

Bereavement
support

Terminal phase
of illness
Disease progression

Figure 1. Concurrent/integrative model of palliative care.

A National Framework and Preferred Practices for Palliative and Hospice Care Quality: A Consensus Report. Chapter1. Framework. National Quality
Forum. Washington, DC, 2006, p. 3.

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Clinical Medicine Insights: Pediatrics 2012:6

Nursing dimension of pediatric palliative care in cancer

to identify, prevent, and alleviate suffering.8 These

models have been supported by studies with adult
patients demonstrating that palliative care does prolong life,9 is effective in improving quality of care,10
decreases hospital costs,9 and decreases caregiver
burden.11,12 In fact, the American Society of Clinical
Oncology has recently released a provisional clinical opinion based on available trials advocating the
early integration of palliative care into standard cancer treatment for malignancies with high symptom
burden.13 However, many challenges exist in the
implementation of these integrated models including the economic limits of the current health care
environment, the lack of necessary tools and skills
needed by health care providers, and the misalignment of palliative care exclusively to end-of-life
care needs. Despite the fact that palliative care is
now widely recognized as a critical part of excellent
care for children with life-limiting diseases such as
cancer, patients continue to receive this care very
late in their illness trajectory.14,15
Successful delivery of a concurrent model of care
to children with cancer depends on establishing a relationship with the child and family that is built on trust.
Parent/caregiver uncertainty regarding the changes
in medical therapy that may occur once palliative
care goals are established may lead to stress, anxiety, and lack of commitment towards these goals.16
A shared commitment to goals directed towards cure
and life-prolongation measures, as well as an equal
commitment to symptom management and relief of
suffering, are critical to the successful implementation
of a concurrent care model.17 This shared commitment
requires that the health care team and nurses in particular, are comfortable with the core competencies
regarding psychosocial assessment, symptom management, management of distress, communication,
and transition of care. As such, a second important
determinant of the successful delivery of a concurrent
model of care to children with cancer is that nurses
across all levels of the cancer care continuum, from
primary care nurses in the community, to inpatient
nurses on the oncology wards, and to specifically
trained nurses in the intensive care unit, possess the
basic core skills as well as a working understanding
of the principles of palliative care.18 While specialists
in palliative care services should be available to all
patients when their needs become complex, there is a
Clinical Medicine Insights: Pediatrics 2012:6

range of basic goals that needs to be integrated across

the care continuum.

The Importance of Understanding

the Patient Prognosis

In order to provide quality palliative care, it is important that the care team, including the parents, develop
as clear an understanding of the patients prognosis as
possible. Prognostic uncertainty is a familiar experience in the care of children with life-threatening illnesses including cancer.19 While much of childhood
cancer treatment can be characterized by success with
more than 80% of children becoming 5-year survivors
of their cancer,20 cancer remains the leading cause of
death by disease among US children 1 to 14 years of
age.21,22 Several high-risk cancer diagnoses remain,
and long-term survivors are at an elevated risk of
death due to recurrence of the primary disease or as a
result of late effects of therapy. Thus, there continues
to be a population of children with life-threatening
cancer diagnoses that defy prognostic estimations
and present challenges. Overly optimistic estimates
of prognosis remain a common barrier to the initiation of palliative care.23,24
Nurses can provide families with the much needed
reassurance that a focus on relief of suffering does
not mean that curative or disease-modifying treatments will be abandoned if they remain appropriate.
By framing the principles of palliative care in a concurrent care model, unnecessary delays in providing
children the treatment they need may be avoided, as
ongoing multidimensional assessment and open communication are more likely to result in identification
of distressing symptoms. While empirical support for
the avoidance of these delays is lacking, researchers
have found that concurrent care models have led to
higher scores for quality of life and mood in adult
patient populations. Unfortunately, palliative care is
not always presented or viewed in that manner by the
medical providers. In a study investigating the challenges that exist in providing pediatric palliative care
to inpatient populations, Docherty et al described
providers hesitation to initiate palliative care discussions and interventions until they were certain that the
child was beginning to die.25 In light of prognostic
uncertainty and the desire to remain hopeful, such
a practice may result in much avoidable suffering.
This prognostic uncertainty is particularly relevant in
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Docherty etal

pediatric oncology as many conditions have a highly

variable course and the likelihood of treatment success is difficult to establish. However, nurses trained
in the principles and core competencies of palliative
care with the goals of alleviating distress, assisting
in complex decision making, and enhancing overall quality of life, may benefit children and families
through their understanding and commitment to concurrent care models.26 In addition, such training and
knowledge will empower the nurse in medical team
meetings and other settings to advocate on behalf of
children. Such advocacy often takes the form of clarifying realistic goals of care that can guide decision
making. The establishment of such realistic, objective goals provides the framework for the delivery of
effective palliative care.

Establishing Realistic Goals of Care

For as long as the practice of medicine has existed,

there have been two primary goals of care: (1) to
cure disease and (2) to relieve suffering in patients.27
Within those two broad categories, there are many
specific goals unique to each individual patient that
will help satisfy the care mission. Palliative care seeks
to relieve the physical, emotional, social, and spiritual distress produced by life-limiting conditions; to
assist in complex decision making; and to enhance the
quality of life.28,29 To most effectively do so, providers
must guide realistic goal setting for the patient. These
goals of care should be rooted in the personal beliefs
of the patient and family and based on the clinical
condition. Clearly, whenever possible, the goals of
the child should be solicited and respected.5,30 Many
publications, as well as national guidelines, have reaffirmed the importance of developing goals of care;
notably, the Medicare Hospice Benefit has long contained a provision mandating individualized treatment
plans including the establishment of goals of care for
patients.3133 The establishment of goals of care has
become an essential component of quality palliative
medicine.4,34 These goals of care should account for
the physical, emotional, social, and spiritual distress
experienced by patients and their families. Nurses are
often best situated to evaluate this distress because of
the amount of time they spend with patients and their
families compared with other medical team members.
Data suggest that most patient goals can be categorized into general areas pertaining to various aspects
78

of life.35,36 This categorization may assist families in

establishing more broad-based goals of care. However,
for many children, including those with cancer, goals
of care often remain poorly delineated because they
are not discussed thoroughly and openly.28 Pediatric
nurses rated uncertainty about the goals of care as
second only to lack of opportunity to debrief after
death, in a study of obstacles to the provision of
palliative care.37 For palliative care to be successful,
there must be candid exchanges between the patient,
family, and the health care team. Unfortunately, such
conversation often does not occur in a timely manner
to impact outcomes and improve quality of life.
To date, little has been published on specific
palliative care goals for children with cancer, but
there are studies that can provide a foundation for
nurses to advocate from on behalf of their patients.
For example, it is clear that a restoration or maintenance of health, to some degree, is a common goal
among this patient population. In a recent report, the
goals of care ascertained during the initial palliative
care consultation among 50 consecutive pediatric
patients were reviewed. In that analysis, nearly every
(49/50) patient and family member verbalized at
least one goal pertaining directly to physical health
and independence; 25 verbalized a goal that specifically and directly addressed health maintenance or
improvement.34
Although this study included oncology and nononcology patients, the findings are quite consistent
with those reported by Wolfe et al among a purely
pediatric oncology population.19 In her report, during
the parent-defined end-of-life care period, two thirds of
parents voiced that the primary goal of cancer-directed
therapy was to extend life, while a fourth of the parents voiced that the primary goal was specifically to
cure the cancer. In another study of pediatric oncology patients authored by Hinds etal, nearly 60% of
parents cited trying to find a cure or prolonging life
as factors that influenced their end-of-life decision
for their child.38 Clearly, these studies suggest that
quality palliative care for pediatric oncology patients
will likely require plans that support the restoration
or maintenance of health. Moreover, these findings
suggest that concurrent palliative and curative care
is consistent with the aspirations of pediatric oncology patients and their families. Present day practice,
advocated by the American Academy of Pediatrics
Clinical Medicine Insights: Pediatrics 2012:6

Nursing dimension of pediatric palliative care in cancer

and the Institute of Medicine, suggests that palliative

care should be initiated at the time of diagnosis and
continue concurrently with curative therapy, taking a
more predominant role at the end of life.5,6,33
Unfortunately, families and patients often offer goals
that are vague and general. In one report, nearly half
the children/families who expressed a goal pertaining
to the psychological and spiritual realm verbalized
a desire to be happy.34 While ascertaining such
general goals may help guide overall care planning,
it is imperative that the palliative care practitioner
explore these goals more explicitly. The true value
of establishing goals appears to be derived from the
very unique goals specific to each individual patient.
Such goals cannot often be anticipated or predicted
but only brought to light through detailed and candid
discussion. As such, goals within the different domains
of life (eg, psychological, social, and environmental)
should be specifically explored and addressed.34 The
bedside and clinic pediatric oncology nurse is perfectly
positioned to facilitate such discussion.
In addition to identifying objective, specific goals
for each individual patient, there are many other
challenges in developing effective goals of care. For
example, patient goals are likely to be dynamic and
changing based on both the personal life and medical
condition of the patient. Nurses should be cognizant
of this potential for change and continually reassess
as well as reaffirm the patients/familys goals of care.
Arguably, the greatest benefit of the paradigm shift
to the current doctrine of concurrent curative therapy
and palliative care is that a gradual transition in goals
may occur. As disease direction changes and end of
life approaches, patients will often have a change in
their goals of care. The implementation of concurrent care early in the disease process, with the same
nurses providing all forms of care throughout, should
facilitate a smoother transition in the goals of care.
Consequently, it is important that palliative care be
administered early in children diagnosed with cancer.
Unfortunately, this appears to be an unusual practice.
In one survey of over 300 pediatricians, only 15%
of participating physicians would recommend early
referral for palliative care for children with cancer.39
In contrast, 44% would make such a recommendation at the end of life. Pediatric nurses, empowered
with the skills and understanding of quality palliative
care, can keep the care team focused upon palliative
Clinical Medicine Insights: Pediatrics 2012:6

care goals and help to ensure that these principles are

integrated into the care model throughout the entire
clinical course, even when formal palliative care consultation is not solicited.18
One final obstacle in developing goals of care is
to ensure that all members of the health care team
understand and work towards achieving the goals
delineated by the patient. Although seemingly
straightforward, this process is often complicated by
poor communication of goals and the imposition of
personal beliefs maintained by members of the medical team. Davies et al recently reported that discrepancies in treatment goals between staff members and
the patients family is one of the most common barriers to optimal pediatric end-of-life care.40 Again, the
oncology nursing staff may serve a fundamental role
in helping to ensure that clinical care, among all services, is consistent with the goals delineated by the
patient and/or family.
The Education for Physicians on End-of-life Care
(EPEC) Handbook recommends a 7-step approach
for the development of effective goals of care.27
Clearly, effective communication is pivotal to quality palliative care, and others have advocated similar
approaches (Table 1).4146
A recent analysis revealed that barriers to effective communication were one of the primary perceived factors that interfered with optimal end-of-life
pediatric care.40 Data suggest that parents want clinicians to discuss advance care options and to assist
them in such complex decision making.47,48 Although
the oncology nurse may not be the one spearheading
such discussions, the nursing input may prove instrumental in ensuring that such discussions occur, and
that patient preferences are verbalized. In a review
of the literature on nursing roles and strategies for
end-of-life decision making, information broker, supporter, and advocate emerged as key roles that nurses
play in the adult acute care setting.49 These roles are
equally relevant in the pediatric oncology environment. First, as information brokers, pediatric oncology nurses provide information about the child and
family to the health care team, provide information
to the child and family about treatment plans and
goals, and coordinate discussions between the family and health care team. Second, nurses provide an
important source of emotional support to the child
and family as they attempt to comprehend and assess
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80

1.Establish a protocol
for communication

2.Communication at diagnosis
and later follow up

1.Prepare for the

discussion

2.Establish what the

patient/family already
knows

6.Solicit questions from the

child and parents

6.Establish goals for

treatment
and care priorities
7.Establish a plan

SEGUE44

6.Encourage the child

that you will be there
when needed

4. Understand the
recipients
perspective

4.Explain information
according
to the childs
developmental
status and needs
5.Empathize with the
childs emotions
5.End the
encounter

3.Give information

3.Explore what the

child already knows

1.Establish an
1.Set the stage
agreement
about communication
2.Engage the child at
2.Elicit the
an opportune time
information

Six Es of
communication43

SPIKES46

5.Addressing
the patients
Emotions with
Empathy
6.Strategy and
Summary

2.Assess the
2.Assessing
knowledge and
the Patients
needs of the
Perceptions
recipient
3.Obtaining
3.Choose
appropriate
the patients
strategies
Invitation
4.Evaluate their 4.Giving
understanding
Knowledge/
information to
the patient

1. Plan the setting 1.Setting up the

interview

PACE45

Adapted from: Mack JW, Hinds PS. Chapter19. Practical Aspects of Communication. Table19-1. In: Wolfe J, Hinds PS, Sourkes BM, editors. Textbook of Interdisciplinary Pediatric Palliative
Care. Elsevier/Saunders, Philadelphia, PA, 2011, pp. 181.

7.Communicate in a way
sensitive to cultural
differences
8.Share information about the
diagnosis and plan for cure
9.Share information on lifestyle
and psychological issues
10. Encourage the entire family
to talk together

5.Hold a separate session

with the child

5.Respond to
emotions

3.Communicate in a
3.Determine how the
information is to be
comfortable
handled
and private space
4.Deliver the information 4.Communicate with both
parents and others
if desired

Guidelines for communication

of the diagnosis42

7-step communication
tool41

Table 1. Principles of communication with a seriously ill child and the childs family.

Docherty etal

Clinical Medicine Insights: Pediatrics 2012:6

Nursing dimension of pediatric palliative care in cancer

the impact of the information they are given. Third,

nurses actively engage as advocates in palliative
care planning by challenging the status quo and by
assisting all invested parties to understand the overall
patient care mission. This level of advocacy in which
the child and family are given assistance with interpreting and understanding goals will lead to valid
and shared decision making. The establishment of
clear goals of care based on individual preferences
and beliefs that are attainable within the structure of
the clinical condition is the foundation upon which
such decisions can be made. In addition, as described
above, the ongoing multidimensional assessment performed by nurses facilitates their ability to identify
distressing symptoms early and, therefore, mandates
their advocacy for prompt attention to the relief of
these symptoms.

Assessing the needs of the child

and family

In establishing unique, realistic goals and prioritization

of care, a clear and accurate assessment of the needs of
the child and family is essential. Parental engagement
in such a process is fundamentally important and
should be encouraged. Therefore, investigators and
clinicians have begun to develop tools to assist in
assessing parental engagement in decision making
for seriously ill children during palliative care
consultations. Kearney and Byrne, in the initial stages
of development of the Parental Engagement Scale,
described a conceptual model of parental engagement
organized into three dimensions: information-centered
dialogue, insightful participation, and achievement of
a collaboratively agreed-upon plan.50 Models such as
this are instrumental in establishing a needs-based
multidimensional plan of care.
As described above, the palliative care needs of
children with life-threatening cancer and their families include physical, emotional, social and spiritual
elements and a focus on enhancement of quality of
life for the child and support for the family. The care
burden can have an effect on all aspects of family life.
Studies have described a range of experiences that
families have encountered when caring for a child
with a life-threatening malignancy; these include a
lack of symptom control and pain relief in the child,3 a
feeling that the familys concerns are not being taken
seriously,51 poor communication between family
Clinical Medicine Insights: Pediatrics 2012:6

members and professionals,40 as well as social, financial, and mental and physical health repercussions on
the entire family.52,53

The prevention and relief of pain

and suffering

To best impact the lack of symptom control and pain

relief, focused assessment of physical and emotional
symptomatology is vital. Numerous, widely accepted
pain scales (eg, Faces Pain Scale, FLACC, Oucher,
Wisconsin) are available to assess and attempt to
objectify pain among pediatric patients. The oncology
nurse should have knowledge of the instruments used
in their setting including a clear understanding of the
meaning of the scores across a range of ages. Nurses
can work to develop evidence-based practice protocols that incorporate the assessment indices produced
by the use of these instruments. In addition, similar
assessment of other distressing symptoms is equally
important. The BREATH AIR pneumonic provides a
measure to assess the most common causes of dyspnea and the initial steps in treatment (Table2).
As described above, the assessment and frequent
reassessment of pain and other symptoms is pivotal
to quality palliative care, as unrelieved pain and
suffering in a child with cancer commonly impacts
the quality of life experienced by both the child and
the family.54 The acknowledgement and treatment of
such symptoms is an area in which nursing may have
a substantial impact. When parents perceive their
child as suffering, they often feel helpless. By providing interventions to the family aimed at treating
the source of suffering associated with cancer in children, nurses can empower parents with the ability to
do something for their child. Empowering the family
to have an active role in such an integral component
of care as pain relief, may have far-reaching, positive
effects. It may not only help the child physically, but
it can also help the family emotionally.55 The pediatric pain literature now clearly demonstrates that there
is no such thing as a little stick; the effects of underdiagnosed and undertreated pain as well as unrelieved
procedural pain are long-lasting.56,57 The same may
apply to many other symptoms yet to be studied in
this manner. Symptom management and attention
to the suffering of children who are dying must be
comprehensive.58 Equally important, relief of pain
and suffering facilitates the capacity of both the child
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Docherty etal
Table 2. Specific causes and treatments for dyspnea.
Cause

Treatment

Bronchospasm

Consider nebulized albuterol and ipratropium and/or an inhaled

steroid. Systemic steroids can be useful in cases of superior vena
cava obstruction or tumor mass effect in the lung.

Rales

If a patient is volume overloaded, reduce or stop intravenous

fluids and artificial feeding. Diuretics may be helpful, particularly
when cardiac output is low. If pneumonia appears likely, consider
a trial of antibiotics based on the goals of care, prognosis, and
ability to take oral versus intravenous administration.

Effusions

Thoracentesis may be effective, and if the effusion recurs,

pleurodesis or indwelling chest-tube drainage may be appropriate
based on goals of care and a life expectancy of at least several
weeks to months.

Airway obstruction,
aspiration

Make sure that tracheostomy appliances are cleaned regularly.

If aspiration of food is likely, pure solids and thicken liquids with
cornstarch. Educate the family about how to position the patient
during feeding. Suction the patient when appropriate.

Thick secretions

If the cough reflex is still strong, loosen thick secretions with

nebulized saline and guaifenesin. If the cough is weak, treat
thin secretions with atropine, 1% ophthalmic solution; topical
scopolamine patches behind the ear(s) every 3days; or
glycopyrrolate every 3hours as needed.

Hemoglobin low

A blood transfusion may add energy and reduce dyspnea for a

few weeks.a The clinician needs to discuss the clinical status and
goals with the patient and family to help determine the potential
benefits versus relative burden of the transfusion, taking into
consideration the etiology (and speed of recurrence) of the
anemia.

Anxiety

Sitting upright, using a bedside fan, listening to calming

music, and practicing relaxation techniques can be effective.
Skillful counseling and a calming clinician may also be helpful.
When chronic anxiety is a trigger for dyspnea, clonazepam or
antidepressants may be useful. Important to note, dyspnea is a
potent trigger for anxiety and may best be treated with opioids
first and then a benzodiazepine. If the opioid dosage is limited by
drowsiness, reduce the benzodiazepine dosage and then attempt
to increase the opioid dosage.

Interpersonal
issues

Social and financial problems contribute to anxiety and dyspnea.

Counseling and interaction with social workers and other
members of the interdisciplinary team may bring relief. When
family relationships exacerbate the problem, a few days spent in
a peaceful, home-like hospice inpatient unit may help to relieve
the patients symptoms.

Religious concerns

Although faith or an experience of the transcendent can bring

profound comfort, some beliefs, such as God is punishing me
or God will heal me if I have enough faith can precipitate or
exacerbate dyspnea. Take the time to listen with full attention and
presence, encouraging the patient to explore ways to reconnect
and relieve existential burden. Coordinate treatment with the
patients spiritual adviser, chaplain, counselor, other healthcare
professionals, and family members.

a
Gleeson C, Spencer D. Blood transfusion and its benefits in palliative care. Palliat Med. 1995;9:30713.
Table adapted with permission from: UNIPAC 4: Managing Nonpain Symptoms, by Tucker R, Nichols A. In: Storey CP, editor. UNIPAC: A Resource
for Hospice and Palliative Care Professionals. 4th ed, 2012, Glenview, IL, American Academy of Hospice and Palliative Medicine. 2012 by American
Academy of Hospice and Palliative Medicine. Adapted with permission.

82

Clinical Medicine Insights: Pediatrics 2012:6

Nursing dimension of pediatric palliative care in cancer

WHO's pain relief ladder
Freedom from
cancer pain
Opioid for m
oderate to
severe pain
+/ non-opio
id
+/ adjuvant
Pain pe
rs
increas isting or
ing

Opioid fo
r
+/ non-o mild to moderate
pioid
pain
+/ adjuv
ant

Pain p
e
increa rsisting or
sing
Nonop
+/ a ioid
djuva
nt

Figure 2. World Health Organization analgesic ladder.

World Health Organization. http://www.who.int/cancer/palliative/painladder/
en/. Accessed Mar 2, 2012.

and the family to be as fully present to each other

as possible, rather than having attention distracted by
distress over untreated symptoms.
Nearly all children with cancer experience some
pain in the course of their illness, and this can worsen
considerably at the end of life. Fortunately, with effective and prompt intervention, the pain can be controlled in the majority of patients.59 There have been
many efforts to improve education for physicians and
nurses on pain management strategies in children,
yet children continue to be undermedicated for their
pain.60 The current standard for treating childrens
cancer pain follows the World Health Organizations
Table 3. Basic premises of effective pediatric pain
management.
Pain medications should be scheduled, and not
administered on an as needed basis.
The most acceptable route of pain medication delivery
for the patient should be utilized.
Adjuvants (e.g. anti-epileptic medications and antidepressants for neuropathic pain) should be used
to augment pain control.
Side effects should be anticipated and treated
aggressively.
Pain can manifest in many ways including minimal or
no evidence of physical discomfort.
Pain can change over time and it is critical to reassess.

Clinical Medicine Insights: Pediatrics 2012:6

analgesic ladder, which outlines a strategy for tailoring

the pain interventions to the childs level of reported
pain (Fig.2).61 Childrens pain should be assessed frequently and medications adjusted as necessary. The
childs self-report of pain should be solicited whenever feasible and should be considered of ultimate
importance. Although a detailed description of pain
management is beyond the scope of this review, a few
basic principles merit comment (Table3). First, pain
medications should be scheduled and not administered solely on an as needed basis. Second, there are
many routes to administer an opioid; the simplest and
most acceptable route for the patient should be utilized. Third, adjuvants such as anti-epileptic medications and antidepressants for neuropathic pain should
be used to facilitate pain control. Fourth, side effects
should be anticipated and treated aggressively. It can
be assumed that any patient receiving chronic opioid
therapy will develop constipation, and, therefore, a
bowel regimen should be implemented coincident
with the start of the opioid therapy. Fifth, pain can
manifest in many ways including crying, withdrawal,
aggression, fear of touch, and fear of movement.
Some children with pain will exhibit minimal or no
evidence of physical discomfort. Finally, pain can
change over time and it is critical to reassess. The
oncology nurse can be invaluable in ensuring appropriate analgesia by adhering to these principles, identifying subtle signs and symptoms of pain expression,
and by detecting changes in pain and advocating for
additional diagnostic tests and/or changes in therapy.
In addition, children with cancer frequently require
very high doses of opioids to control pain. This may
occur for several reasons. Children exposed to opioids
for long periods of time develop tolerance to the drug
and, therefore, require higher doses of the opioid to
maintain the same level of pain relief. It is important to
note that this is the result of tolerance and not addiction;
addiction is a psychological dependence on the effects
of the opioids. This distinction may be helpful to some
families who worry about the potential for addiction.
Concern for addiction should not be a factor in
managing terminal pain in children. Furthermore,
disease progression may also lead to pain requiring
very high doses of opioids.62,63 One point to emphasize
is that there is no maximum dose of opioid that can
be given to control pain; opioids are for the most part
without ceiling effects.61 A ceiling effect, applicable
83

Docherty etal

to many medications, refers to the concept that after

a certain dose of medication, there is no additional
benefit but merely toxicity. This is not true for opioids:
the higher the dose of opioid, the more effect that
can be anticipated. In this way, opioid dosing is not
limited by a specific dose but rather by dose-limiting
side effects including constipation, nausea, sedation,
myoclonus, and respiratory suppression. This is an
important concept of palliative care pain management,
as frequently (and appropriately) medical staff are
uncomfortable administering doses of opioids above
their usual level of practice.61 Frequently, medical
staff are concerned and fear that high dose opioids,
with the inherent potential for significant side effect,
may hasten a childs death. Available data would not
appear to support this contention. Moreover, in end-oflife care, when the goal for comfort is the top priority,
the principle of double effect addresses such concerns.
According to the principle of double effect, an action
that has one good (intended) effect and one potentially
bad (unintended, but foreseeable) effect is permissible,
if the following conditions are met: (1) the action
itself must be good or indifferent, with only the good
consequences of the action sincerely intended, (2) the
good effect must not be produced by the bad effect, and
(3) there must be a compelling reason for permitting
the foreseeable bad effect to potentially occur.64 This
well-vetted approach provides an ethical standard that
supports the use of interventions intended to relieve
pain and suffering even though there is a foreseeable
possibility that death may be hastened.65 In cases in
which the child is terminally ill and in severe pain,
using large doses of opioids and sedatives to manage
pain is justified when no other treatment options are
available that would both relieve the pain and make
the risk of death less likely.66 In these cases, specialized
palliative care consultation is recommended.
In addition to medications, non-pharmacologic
interventions may also reduce the perception of pain.
They may decrease the amount of pain medication
that is needed thereby reducing unwanted side effects.
These interventions include providing soothing surroundings, avoiding excessive lighting, and ensuring a
pleasant room temperature and even pleasant smells in
the room. Other techniques such as music therapy,66 distraction, and guided imagery should be combined with
medications to provide the child and family strategies
to control pain.67 Often families will have insight into
84

the things that comfort their child, and this input should
be encouraged, as it not only helps the child but may
also provide the family comfort.68 Better bereavement
outcomes (including enhanced family cohesiveness as
well as decreased anxiety, stress, and depression) have
been reported by parents who were actively involved in
the care of their child.69 Even simple interventions such
as placing all commodities within easy reach for the
child can contribute to a childs sense of comfort; attentiveness to these details can add much to the quality of
nursing care at the end of life. Other simple measures
that the bedside nurse may employ to minimize suffering for children with cancer include the use of gentle
touch and avoidance of pressure on painful areas when
required to perform physical procedures. Routine nursing care at the end of life can and should be limited to
essential needs.70 This latter point is easily overlooked
in the hospital setting where, for example, measuring
vital signs frequently is a matter of routine and policy.

Prevention and relief of other symptoms

In addition to pain, children experience a variety of

other symptoms that may compromise their quality
of life during the terminal course of their illness. In a
landmark paper, Wolfe described the most commonly
reported symptoms of pediatric oncology patients
at the end of life.60 Fatigue was the most commonly
reported symptom followed closely by pain, dyspnea, and anorexia. Fatigue, pain and dyspnea were the
symptoms most commonly associated with suffering.
Therefore, the practitioner providing palliative care
to pediatric oncology patients should both anticipate,
and specifically address the goals related to the prevention and/or treatment of these symptoms.71 Each of
these symptoms should be aggressively managed with
appropriate medications and non-pharmacologic interventions including repositioning, relaxation, and massage. For example, morphine and a fan blowing air on
a childs face can be very effective at reducing dyspnea.
As with pain medicines, it is important to ensure that
medications are scheduled for those symptoms such as
constipation, nausea and vomiting that are likely to be
persistent rather than episodic.

Identification, Prevention,
and Relief of Fear

There are many other sources of suffering present throughout a childs battle with cancer that are
Clinical Medicine Insights: Pediatrics 2012:6

Nursing dimension of pediatric palliative care in cancer

accentuated at the end of life. For example, there is

often an unspoken anxiety related to the fear of dying
and/or the dying process. This anxiety will be experienced by both the child and the family; they will
share some similar fears and worries, but others will
be quite unique.72 Identifying the specific fears and
fostering candid discussion of them will allow the
oncology nurse to minimize the suffering associated
with this anxiety as much as possible. In addition,
the fear of being alone in the face of death is often a
contributor to anxiety.73,74 By reassuring the patient
that he or she will not be alone, and by creating an
environment that avoids isolation, the bedside nurse
can combat such worries. The ability of the oncology
nurse to facilitate an atmosphere that allows loved
ones to be present, encourages candid expression of
feelings, and provides a sense of closeness and understanding among family members will do much to
minimize the fears associated with dying.
Fear may also culminate in a range of emotional
expressions on the part of the child that may be disturbing to families, particularly if they are not prepared.
These assertions may include emotional liability,

aggression, and expressions of anger, depression, and

withdrawal. Simply understanding that such expressions are not unexpected or abnormal may ease anxiety
for the family and facilitate better coping. The oncology
nurse may provide further reassurance by both practicing and introducing families to the concepts of active
listening, simple relaxation, and therapeutic touch. In
addition, the bedside nurse can structure the hospital
or home environment to allow for maximum control
and independence within the limitations imposed by
the developmental level and physical condition of the
child. Nurses can also mitigate the suffering of anxiety
by explaining all procedures and therapies, detailing
the physical effects the child is likely to experience,
and answering all questions in a candid manner.

Additional Areas of Concern

In addition to addressing the physical and emotional

needs of the pediatric palliative care patient, the oncology nurse may foster a higher quality of life for the
child, parents, and siblings in a number of other ways
(Table 4). For example, it can be extremely helpful
to facilitate appropriate spiritual care in accordance

Table 4. Dimensions of palliative care needs.

Needs

Child/adolescent

Parent/caregiver

Sibling

Symptom
management

Nausea and vomiting

Pain
Anxiety
Fatigue
Dyspnea

Strategies for specific symptom relief

Strategies to deal with changes
in child activity level

Strategies to assist
with symptom relief

Service and
education

Goal setting: life prolonging/

alleviation of suffering
Dealing with emotions such
as anger, guilt, frustration

Goal setting: life prolonging/

alleviation of suffering
Care coordination
Knowing to whom to direct questions
Access to health care team
How to talk to child/sibling
about death/dying
Dealing with emotions such as denial,
anger, guilt, and frustration
Financial support

Dealing with emotions

such as denial, anger,
guilt, and frustration

Respite

Relief from focus on cancer

and treatment

Relief from caregiving

Relief from daily focus

on ill sibling, and isolation

Spiritual support

Hopefulness

Hopefulness
Legacy making

Hopefulness
Legacy making

Clinical Medicine Insights: Pediatrics 2012:6

85

Docherty etal

with familys beliefs, affiliations, and desires. In

addition, addressing components and manifestations
of the grieving process including anticipatory grief
and differences among genders and ages may provide
reassurance, understanding, and comfort. Enlisting
grief-counseling services when available and needed
may be useful. Nurses can also partner with child life
specialists, music therapists, and physical therapists
to facilitate a childs or siblings expression of emotions through art, music, or play activities. Siblings
often feel isolated and displaced as parents understandably devote much of their time to the care and
comfort of the dying child. Siblings may become
resentful of their ill sibling and begin to feel guilty or
ashamed about such feelings.75 This may obviously
become an important source of suffering for the sibling, and ultimately, for the entire family. Nurses can
assist by helping the parents identify ways to involve
siblings in the caring process. Parents should also be
encouraged to schedule time to spend with the other
children, and nursing can help identify a family member or trusted friend who can sit with the ill child.

Conclusion

In summary, the early initiation of palliative care has

been associated with numerous beneficial outcomes
with no identified harm or increased medical costs to
date for both the child and the family. These benefits
include longer survival, improved symptom control,
enhanced quality of life, and decreased caregiver
burden. As such, and in accordance with the doctrine
of many prestigious professional societies, palliative
care should be administered concurrently with curative
therapy in all children with life-limiting illnesses. This
is particularly true for the pediatric patient with cancer.
Clear, realistic, and objective treatment goals must be
established for such care to be effective. The pediatric
oncology nurse is positioned perfectly to assist the
patient/family in identifying such goals, advocating
for these goals with the medical team, and ensuring
that these goals are consistently adhered to across all
medical services. In addition, effective palliative care
attempts to alleviate the physical, emotional, social,
and spiritual suffering associated with life-limiting
illness. The oncology nurse is vital in identifying
these various forms of suffering, advocating for
and administering effective therapy, and assessing
the response to such therapies. Given that palliative
86

care is not a unique service as much as a philosophy

of care, it is imperative that the pediatric oncology
nurse acquire a basic understanding of palliative care
principles as well as the core competencies and skills
required to administer this fundamental therapy.

Author Contributions

Conceived and designed the experiments: Not applicable. Analysed the data: Not applicable. Wrote the
first draft of the manuscript: SLD, RFT. Contributed
to the writing of the manuscript: SLD, CT, CA, RCB,
RFT. Agree with manuscript results and conclusions: SLD, CT, CA, RCB, RFT. Jointly developed
the structure and arguments for the paper: SLD, CT,
CA, RCB, RFT. Made critical revisions and approved
final version: SLD, CT, CA, RCB, RFT. All authors
reviewed and approved of the final manuscript SLD,
CT, CA, RCB, RFT.

Funding

Author(s) disclose no funding sources.

Competing Interests

Author(s) disclose no potential conflicts of interest.

Disclosures and Ethics

As a requirement of publication author(s) have provided to the publisher signed confirmation of compliance with legal and ethical obligations including but
not limited to the following: authorship and contributorship, conflicts of interest, privacy and confidentiality and (where applicable) protection of human and
animal research subjects. The authors have read and
confirmed their agreement with the ICMJE authorship and conflict of interest criteria. The authors have
also confirmed that this article is unique and not under
consideration or published in any other publication,
and that they have permission from rights holders
to reproduce any copyrighted material. Any disclosures are made in this section. The external blind peer
reviewers report no conflicts of interest. Provenance:
the authors were invited to submit this paper.

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