Review

Paediatric palliative care: challenges and emerging ideas

Stephen Liben, Danai Papadatou, Joanne Wolfe

Lancet 2008; 371: 852–64 Paediatric palliative care is an emerging subspecialty that focuses on achieving the best possible quality of life for
Published Online children with life-threatening conditions and their families. To achieve this goal, the individuals working in this field
August 16, 2007 need to: clearly define the population served; better understand the needs of children with life-threatening conditions
DOI:10.1016/S0140-
and their families; develop an approach that will be appropriate across different communities; provide care that
6736(07)61203-3
responds adequately to suffering; advance strategies that support caregivers and health-care providers; and promote
See Editorial page 786
needed change by cultivating educational programmes. Despite these challenges, advances in paediatric palliative
The Montreal Children’s
Hospital of the McGill
care have been achieved in a short period of time; we expect far greater progress as the field becomes more formalised
University Health Center, and research networks are established.
Montreal, Quebec, Canada
(S Liben MD); Faculty of Introduction comprehensive approach to care. The child, family, and
Nursing, University of Athens,
Greece (Prof D Papadatou PhD);
Paediatric palliative care (PPC) is focused on ensuring care providers have overlapping but differing concerns in
Department of Pediatric the best possible quality of life for children whose illness terms of personal factors such as personality, values
Oncology and the Center for makes it likely that they will not live to become adults. (including spiritual, religious, and cultural), cognitive
Outcomes and Policy Research Such care includes the family and extends into the ability, well-being, personal history, and experience;
of the Department of
Population Sciences,
domains of physical, psychological, social, and spiritual sociodemographic factors, including age, education, and
Dana-Farber Cancer Institute, wellbeing. The frequency and circumstances of childhood economic status; contextual factors ranging from peer
Boston, MA, USA, and mortality are geographically and socio-economically influences to resource availability, or current events such
Department of Medicine,
dependent, with some children having full access to the as high profile media attention regarding an end-of-life
Children’s Hospital, Boston,
MA 02115, USA (J Wolfe) newest and costliest treatments and others little access to controversy.11–15
Correspondence to:
even basic medical care, food, and clean water. Applying Both data16 and clinical experience favour a blended
Dr Joanne Wolfe, Department of the principles of PPC to a particular child and their family approach to care that includes disease-directed treatments
Pediatric Oncology and the will thus vary depending on the availability of local together with palliative care. This approach is most often
Center for Outcomes and Policy resources and training. While recognising the need to favoured by parents who commonly hope for their child’s
Research of the Department of
Population Sciences,
improve access for the many children worldwide that life to be prolonged, while also wanting their child to have
Dana-Farber Cancer Institute, lack basic medical care, we contend that all children as much comfort and as little pain and suffering as
Boston, MA 02115, USA facing the possibility of death would benefit from the possible (figure).16 Patients should not have to choose
[email protected]. application of basic, low-cost principles of PPC. We between life-prolonging treatments (such as chemotherapy
edu
review six challenges in the field of PPC. for cancer) and palliative care. Rather, as in the cases of

Challenge 1: Defining PPC

While different definitions of PPC have been published,1–7 Panel 1: WHO definition of palliative care for children4
the challenge remains to create a definition that is relevant Palliative care aims to improve the quality of life of patients
across cultures and nations. The WHO definition provides facing life-threatening illnesses, and their families, through
a good starting point in encompassing the needs of the prevention and relief of suffering by early identification
children with life-threatening illnesses and conditions and treatment of pain and other problems, whether physical,
worldwide (panel 1).4 Differences of opinion exist about psychosocial, or spiritual. The principles of WHO’s definition
whether the term “life-threatening” (where a cure is of palliative care for children with life-threatening illnesses
possible) or the term “life-limiting” (no realistic hope of also apply to other paediatric chronic disorders:
cure) is more appropriate when defining conditions that • Palliative care for children is the active total care of the
merit PPC.8 In this review we use the broadest term, child’s body, mind, and spirit, and also involves giving
“life-threatening”, since we believe that most illnesses and support to the family
conditions are characterised by prognostic uncertainty, • Palliative care begins when illness is diagnosed, and
with no consensus among experts on which conditions continues irrespective of whether or not a child receives
have “no reasonable hopes for cure”.9 The two case disease-directed treatment
examples of children both with the genetic defect trisomy 18 • Health providers should evaluate and alleviate a child’s
and a potentially surgically-correctable congenital heart physical, psychological, and social distress
defect (panel 2), illustrate how the principles of PPC can be • Effective palliative care requires a broad multidisciplinary
applied in the context of prognostic uncertainty. approach that includes the family and makes use of
Despite having the same underlying genetic disorder, available community resources; it can be successfully
these two children had different experiences, not just implemented even if resources are limited
because of the varying phenotypic expression of the • Palliative care can be provided in tertiary-care facilities,
disorder,10 but because of complex interrelated community health centres, and at home
considerations that needed to be synthesised into a

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Jeremiah and Grace, palliative care should be integrated Challenge 2: Better understanding the needs
into an overall plan that is individualised and adaptable. of PPC
One aspect of palliative care for children that overlaps There is little outcome data about the needs and
with that for adults is end-of-life care. Although some effectiveness of many PPC interventions—most existing
children with life-threatening conditions live into publications are descriptive. Reasons for the lack of
adulthood, those who reach the terminal phase can stay outcome data include the small number of children
in this phase for hours, days, or even months. During eligible to be studied in any one institution, the lack of
this phase, the focus of PPC is on the physical, standardised measurement scores for pain and quality of
emotional, social, and spiritual needs of the child, as life in young children, and the fact that the need for such
well as in supporting the family who may continue to
hope for a miracle cure. Although wishing for a miracle
cure might seem incongruous with simultaneously Panel 2: Jeremiah and Grace
accepting the reality of their child’s impending death,
Jeremiah
these dual, opposing thoughts, can co-exist and do not
The PPC team met Jeremiah at 3 months of age when he was transferred from a subacute
necessarily signal underlying denial. The case in panel 3
hospital to a tertiary care center for consideration of repair of a large ventricular septal
underscores the definition of end-of-life care in the
defect in the setting of Trisomy 18.
context of palliative care.
Garrett’s end-of-life care lasted about 1 day, from the Jeremiah’s mother, a single parent with three other children including a supportive
time his family agreed to the decision to discontinue 22 year-old daughter, lived together in an urban neighbourhood and used public
ventilatory, to the time of death. However, PPC services transportation to travel to the hospital. The Haitian mother had been in the US for 6 years
were offered to him for several years before death, and and, although able to speak basic English, requested and benefited from a Haitian
continue through the provision of bereavement services. translator. Jeremiah’s mother participated in health-care team meetings, understood that
Importantly, healthy children who are injured in a her son would probably die very young, and expressed her strong faith in “all things being
motor vehicle accident, for example, or develop an acute possible with God”. She believed in the power of prayer to “change any situation” and said
illness such as meningococcaemia, might also benefit that Jeremiah was a “gift of God”.
from PPC principles appropriate to an intensive-care Discussions with members of the PPC team, the cardiology department, and the mother,
setting. At these times, PPC could be especially useful culminated in the decision to go ahead with surgical closure of the septal defect since this
in arriving at complex end-of-life decision-making, as choice seemed to offer the best chance for Jeremiah to live with reduced symptoms of
well as to address the bereavement needs of surviving heart failure and less frequent need for hospitalisation.
family members.17,18 However, despite surgery at 3 months of age, Jeremiah’s post-operative course was
In considering PPC as a philosophy of caring for children complicated by intermittent respiratory distress and hypoxia because of a residual
who are seriously ill, one obvious conclusion is that it ventricular septal defect. Given his mother’s plan to have him home, the PPC team and
should be the standard of care for all children, whether or others worked to transition him home with nursing support, and when this was not
not their condition is life-threatening, or at a minimum for successful, he was transferred to a chronic care facility. He finally died in hospital
all children with chronic illness. However, when there is a surrounded by his family, and with his dyspnoea symptoms well under control.
possibility of death, the task of fully integrating the
The PPC team helped in the process of balancing the risks and benefits of a myriad of
physical, emotional, social, and spiritual needs of children
potentially life-prolonging but also potentially burdensome high-technology procedures
into the plan of care is more challenging. We believe that
including advanced cardiac surgery within a tertiary care environment.
greater numbers of experts in PPC are needed to: (1) provide
clinical advice and consultation in complex situations—not Grace
all primary clinicians have the education and clinical Grace’s diagnosis of trisomy 18 was detected prenatally, at which time her parents
experience to achieve optimal symptom management and contacted the PPC team for guidance. Grace’s parents were both devout Catholics, her
to provide anticipatory guidance;19,20 (2) ensure curricular mother an intensive care nurse and her father a social worker. Before the birth they
attention to basic PPC concepts in the education of decided that they would not want Grace to experience any intensive medical interventions,
health-care professionals;21 (3) advocate for improvements, even if she were to die at birth. If she were to survive however, their hope was to provide
both within health care and in the community, that serve her with the best quality of life at home. Despite also having a substantial ventricular
to enhance the effectiveness of PPC (eg, such as the septal defect, her birth was uncomplicated and she was discharged home soon after.
provision of adequate home-care services;21 (4) pursue Home care was arranged with weekly visits by an interdisciplinary PPC team. Grace thrived at
research in order to advance the field of PPC;1 and (5) serve home, her cardiac disease was managed medically, and she took all of her feeds by mouth.
as leaders in a field that is currently in the early stages of After several months, her parents faced a crisis having felt pressured to accept one team’s
development. medical opinion that Grace should undergo surgical repair of her septal defect. With the help
Thus, there are two levels of PPC being considered in of the PPC team her parents were able to obtain other medical opinions that supported their
this review—the conceptual considerations that are desire not to pursue surgery. At 7 months of age, given Grace’s continued stability and good
applicable to all children with underlying life-threatening quality of life, her parents elected to discontinue the PPC team’s services, knowing they had
conditions and their families, and the need for experts to the option of re-enrolling at any time. Grace remains stable, is being followed-up by the
provide consultation for patients with more complex cardiology team, and at 3 years of age has not needed to be admitted to hospital.
needs and to serve as leaders in a field that is unfolding.

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DNAR orders are in place for most children at the time of

death, they are frequently instituted very close to the
Individualised blending actual time of death.24–26,28–30 Whether these children could
of care directed at underlying have been better cared for if they had been discharged
illness and at physical, home earlier from the hospital, or whether more could
emotional, social, and spiritual have been done to ensure their comfort while they were
needs of the child and family End-of-life care Bereavement
care dying in hospital is unknown.
with continuous Third, initial studies indicate parental dissatisfaction
re-evaluation
with staff as a result of confusing, inadequate, or uncaring
and adjustment
communications regarding treatment or prognosis36 and
discrepancies in understanding of the terminal condition
between physicians and parents.16 Particular problems
Hope for a cure, life extension, a miracle...
also arise in meeting the needs of siblings and other
family members who do not speak English.36
Finally, the death of a child affects the physical and
Hope for comfort, meaning...
psychological wellbeing of family members for the rest
of their lives, and events that occur around the time of
Figure: Stages of palliative care death, both positive and negative, are highly impor-
Paediatric palliative care includes individualised integration of palliative care principles to manage expectations of
life extension and comfort, both of which can be important issues throughout the child’s life. End-of-life care is an
tant.27,36–39 Families who are able to care for a dying child at
important component of palliative care when the focus is almost entirely on comfort, though hope for a miracle home may be more likely to cope with the bereavement
can persist. Bereavement care needs can be intense and long-lasting, gradually lessening over time. period.40–43
Some of the basic needs regarding end-of-life care, as
Panel 3: Garrett expressed by families who have lost a child, include the
need for honestly communicated and complete
Garrett was a 12-year old boy with advanced cystic fibrosis, being cared for by an information, good access to staff, emotional expression
interdisciplinary pulmonary team. Because of their long-standing relationship with and support by staff, coordination of services, preservation
Garrett and his family, and limited experience with symptom management, the primary of the integrity of the parent-child relationship, faith, and
team found it difficult to recommend interventions aimed at increasing Garrett’s comfort meaningfulness.18,38,44 Emerging data suggest that family
level. PPC consultation facilitated greater integration of strategies aimed at ensuring his perspectives are critical to advancing the field of PPC.45
comfort, such as introduction of self-hypnosis for easing anxiety related to dyspnoea. At Research into the child’s perspective has been especially
the same time, there was continued attention to Garrett’s underlying disease, and he was neglected, presumably related to numerous concerns
listed for a lung transplant. His condition continued to worsen, and several months later such as developmental differences, emotional fragility,
the PPC team facilitated the decision that a DNAR (do not attempt resuscitation) order and an overwhelming sense of not wanting to upset the
be written on his behalf, and recommended opioid dosing to improve his comfort. child.46 Despite these concerns, Hinds and colleagues47
Several days later, as the family was gathered to be present with Garrett during this phase have shown that when asked in a sensitive manner,
of his life, word came that he would receive a lung transplant. The surgery was successful, children as young as 10 years are able and willing to talk
and the PPC team continued to follow-up Garrett and his family closely, despite the about their experiences and end-of-life decisions.
shifting focus of care, to ensure his overall wellbeing. For the next 2 years, he was in and Data and clinical experience indicate there are several
out of the hospital, including a stay of several weeks in the intensive care unit, and the barriers to the ideal delivery of PPC (table).25,29,35,48–53
PPC team visited him both at home and while in the hospital. He was subsequently Emerging models of PPC strive to overcome barriers
readmitted, with a respiratory exacerbation and eventually intubated. With time, while incorporating recommendations from international
disseminated aspergillus was diagnosed, and though efforts were made to begin PPC initiatives.5,8,54,55 In wealthier countries, where
treatment, Garrett’s condition continued to decline. After extensive conversations curative treatments are available to most children, PPC
between his family, members of Garrett’s primary-care team, and the PPC team, a decision often translates to an interdisciplinary team of health-care
was made to discontinue ventilatory support. Garrett received appropriate pain relief and professionals identified as having expertise in addressing
died 20 minutes after extubation. The PPC team is providing ongoing bereavement the needs of children with a life-threatening illness, and
support to his family. their loved ones.56,57 This specialised PPC team offers
expertise and services to other health-care professionals
(eg, the oncology team treating a child with refractory
research in PPC has only been recognised in the past few leukaemia) or directly to the child and family.1 In some
years.22 Despite the limitations of research-derived data to large paediatric health-care centres, PPC teams assign
date, there have been some important findings. First, a staff who respond to a significant number of consultations
substantial number of children have pain and other and provide direct care to children with advanced
distressing symptoms, and data suggest that these illnesses, both within the hospital and in the child’s
symptoms are not well managed.19,23–32 home. In settings with lower numbers of children, the
Second, most children die in hospital,23,27,28,33,34 several of PPC team may consist of members with a primary link to
these in intensive care units.24,25,29,30,35 Moreover, although other services. For example such a PPC team might

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consist of a neurology nurse, an oncology social worker, a

Consequence
paediatric psychologist, and a paediatrician with expertise
in pain control, who are all available to respond when the General barriers48

need arises.58 Outside the hospital setting, there are a Emotional considerations Avoidance

small number of freestanding paediatric hospices that Defiance of the natural order when children die
are staffed by personnel with PPC expertise.59–62 Provider’s sense of failure when a child dies
The most common form of home-based palliative care Immeasurable parental distress at loss of child
in the USA is provided by hospice programmes, most of Prognostic uncertainty Delayed focus on palliative care
which are reimbursed through a “hospice benefit” with Diversity of illnesses, rarity of death in childhood, and little formal Inexperienced providers, and
education of caregivers thus poor quality of care
very precise specifications.63 Many children, however, are
Absence of developmentally appropriate assessment tools, and no Poor assessment and palliation
not referred to a hospice because their illness experience
pharmacokinetic data for children taking symptom-relieving medications of symptoms
is inconsistent with hospice specifications—ie, prognosis
Poor reimbursement for time and labour-intensive, bio-behavioural Under provision of services
is uncertain, there are mixed goals (which can result in palliative care
more costly health care), and providers lack paediatric Lack of universal health-care coverage for all children Lack of access to palliative care
expertise. In a survey of 632 paediatric oncologists, Community barriers48
Fowler and colleagues64 showed that continued Geographic diversity and lack of reimbursement for critical services such Underserviced populations
disease-directed therapy was cited as the most common as in home psychosocial support
reason for not making a referral, especially when the Hospice-specific limitations (USA) Delayed involvement of hospice
hospice did not admit children receiving chemotherapy. Requirement of life-expectancy fewer than 6 months Inexperienced providers, and
thus poor quality of care
Thus, in most settings, there is no specific focus on PPC Lack of experienced paediatric clinicians Underprovision of palliative
in hospital or community, and this leaves children with Low daily reimbursement rates (US$120 per day) care
advanced illnesses and conditions to be cared for on an Not offered if “extended-hour nursing” already supports the child at
ad hoc basis by less experienced practitioners.1 home
To overcome barriers to PPC and enhance comfort for Hospital barriers25,29,35
children with advanced illness, it is important to be May require emergency department visit Disruption in continuity of care
creative and resourceful in how palliative care principles Caregiver team Poor assessment and palliation
might be applied in different settings. For example, in a New, less familiar Inexperienced providers
Underprovision of services
resource-poor country where a newborn with a severe Varying levels of experience Conflict
chromosomal abnormality and subsequent respiratory Frequent changes
failure has no access to neonatal intensive care, local Differing values
health-care workers would benefit from training about Stay might be extended and care can be intensive even if patient has Added cost
the principles of PPC including the provision of comfort declined intensive care
and counselling bereaved families. In a wealthier country, Barriers specific to developing nations49–53
an adolescent with end-stage cystic fibrosis who is on a Unmet basic needs of children and families, including food and shelter Palliative care is not prioritised
waiting list for a lung transplant in a tertiary-care Increasing orphan population with advanced illnesses such as HIV Limited availability of family
paediatric hospital, could have their suffering reduced caregivers
through symptom management and counselling or Limited access to pain-relieving medications Poor palliation of symptoms
guidance on the high possibility of death, regardless of Table: Effect of barriers to provision of adequate palliative care
whether the final outcome is a successful transplant.

Challenge 3: Integrating culture and spirituality their life. Nevertheless, children are encouraged to openly
into palliative care voice their feelings, concerns, and desires and, whenever
There are serious concerns about whether the core assessed as developmentally mature, they are invited in
principles of palliative care, initially developed in the UK decisions concerning their care.6,47,67–70
and USA as a response to an increased institutionalisation The question remains as to whether such prevailing
of the dying, represent the values of different cultures.65 principles are relevant to children and families of
Core principles involve: (1) open disclosure and honesty; different cultural origins. Medical research is replete with
(2) patients’ autonomy through their active participation recommendations about how physicians should break
in decision-making; and (3) open expression of feelings, bad news to parents,71–75 and how to address such topics
concerns, and needs to be able to work through with children.73,76–78 In some cultures however, children
unfinished business, ensure quality of life, and achieve a are not included in discussions of disease diagnosis and
“good death” for the dying and enabling the bereaved to death.79 Studies in China,80 Japan,81,82 and Greece83 describe
cope with the death.66 These principles, formulated for a protective approach towards the sick child that prohibits
the care of adults, are also important in the care of such communication, and limits the child’s involvement
children in some Western cultures, even though minors in decisions about care. In China, for example, talking
(younger than 18 years) are not legally considered about the possibility of death in front of a sick person is
competent to make decisions that may irreversibly affect often viewed as cursing them or hastening death.

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Panel 4: A hypothetical example of culturally sensitive Moreover, the display of emotions or discussions of
palliative care family issues with non-family members is discouraged,
while the use of subtle and non-verbal ways of expressing
Sumalee was a 4-month old female when she was admitted emotions (such as body language and eye contact), is
to the hospital with a profound failure to thrive. A magnetic encouraged.84 In some of these cultures, honesty about
resonance image (MRI) showed a hypothalamic brain tumour dying is perceived as a brutal invasion that deprives the
with spinal metastases. The clinical presentation and findings patient of a protective cocoon against adversity, and
were consistent with diencephalic syndrome, a rare disorder threatens the culturally prescribed roles and functions
characterised by emaciation, emesis and euphoria in the normally assumed by parents.
context of a hypothalamic brain tumour.93 The lack of disclosure in these cultures, however, does
Sumalee was the only child of a young Thai couple living not necessarily imply lack of communication. Findings
temporarily in the USA while her father pursued graduate suggest that the ill child and family members engage in
studies. Her parents expressed their hope that Sumalee would behaviours, practices, and rituals that indirectly
be cured of her tumour, despite the medical prognosis that acknowledge the threat of death or impending separation,
this would be unlikely. Her parents also made it clear that but avoid directly addressing topics which are considered
they were not concerned with their child’s cognitive taboo.83 Children adapt to the values and rules that govern
outcome, but rather with her long-term survival. Sumalee interactions in their immediate environment. They use
had chemotherapy, but not surgical resection since this codes and indirect channels of communication to direct
would have been associated with high morbidity. However, questions and concerns to parents, care providers, and
when she was about 9 months old, still showing no peers with the same disease.85,86 In this way they develop
improvement, her parents asked about re-addressing the culturally appropriate ways to express their concerns to
possibility of surgical debulking. Since there was little support staff members and are able to maintain the rules of
for this intervention from her primary clinical team, the mutual pretence with their family.
family sought out another neurosurgeon who agreed to McKinley and Blackford87 illustrated this clash of
proceed with surgical resection. Despite an uncomplicated values in their assessment of the PPC services that
operation, Sumalee was in a coma afterwards, but was able to were offered in an Australian paediatric intensive care
breathe without assistance. A gastrostomy tube was inserted, unit to families of people of non-English speaking
she began to gain substantial amounts of weight, and was background. They noted that nurses unconsciously
discharged home. imposed their own cultural constructs of what
Sumalee’s primary oncology team were advised that further constituted a meaningful death on these children and
neurological recovery would be unlikely. On several occasions, parents, and used controlling practices to ensure that
her primary oncologist wanted to provide the parents with families conformed to the values and rules of their
anticipatory guidance about potential life-threatening unit. For example, the nurses’ normative practice
events. She explained the risk of aspiration pneumonia that aiming to ensure privacy for parents and opportunities
might lead to death, especially without ventilatory for intimate contact with their child by restricting the
support. Despite what felt like a good therapeutic number of people allowed at the patient’s bedside, was
relationship and the parents’ previous willingness to speak in conflict with some families’ need for a communal
openly, throughout these conversations they always approach towards their dying child. Offering care based
remained silent. They would not agree or disagree with the on assumptions from their own personal and ethnic
recommendation to write a DNAR order. Their only clearly backgrounds, these health-care professionals misunder-
expressed hope was that she should not ever be readmitted stood the needs of children and families, and enforced
to the hospital. Given their desire to keep Sumalee at home, privacy and exclusive decision-making on parents who
she was referred to home-based hospice care. There was still had other preferences and priorities. Rebagliato and
no explicit DNAR order, and her home-care providers were colleagues88 explored doctors’ attitudes towards
concerned about what her parents would choose for Sumalee neonatal end-of-life decision-making in ten European
in the event of a life-threatening emergency. countries, concluded that different cultures, legal
systems, and religious contexts influenced physicians’
One evening, her primary oncologist received a page that
attitudes towards end-of-life care.
Sumalee seemed ill. She made a home visit, saw that she was
Spiritual issues are central to the family’s experience
in substantial respiratory distress and cyanotic, and told her
and narrative. Robinson and colleagues89 reviewed
parents that she would probably die without transfer to the
qualitative data from a survey of parents of 56 children
hospital. The child remained at home, an act that was
who died in three paediatric intensive care units in
non-verbally approved by her parents, since they did not
Boston, Massachusetts, USA. They recorded that spiritual
request for an ambulance to be called. Her primary oncologist
or religious themes emerged in 73% of responses to
sent DNAR and morphine orders to the staff of the hospice
questions about what had helped them most during the
agency who provided symptom-relieving support at home.
child’s last phase of life and what advice they would offer
Sumalee died in the early morning hours.
to other parents whose children are dying. The themes

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that emerged included: prayer, faith, access to and care Challenge 4: Reducing suffering, and promoting
from clergy, and belief that the parent-child relationship hope and healing
transcends death. In another qualitative study of Adult palliative care research on suffering,94,95 hope,96 and
36 children aged 8–15 years with cancer, one of the most healing97 has much to offer both in how to better care for
common themes that emerged as essential to quality of children and their families as well as in how to support
life was “the meaning of being ill”, validating the notion and sustain PPC health-care professionals in their work.
that children also have existential needs.44 Health-care
professionals untrained in how to address the religious Suffering
and spiritual concerns of their patients, often feel The definition of palliative care4 espouses the prevention
uncomfortable with these issues and may inadvertently and relief of suffering by addressing pain and other
neglect an important aspect of care. Barnes and others90 physical, psychosocial, and spiritual problems. Cassell98
have proposed general guidelines for appropriate defined the concept of suffering as an experience that
integration of spiritual and religious resources in their results from a threat to any part of an individual’s
practice, and Davies and colleagues91 have developed an personhood, wherein personhood refers in part to
assessment tool to help professionals assess the spiritual personality traits and character, life experiences, cultural
needs of children with life-threatening conditions, and background, and the individual’s inner life (eg, dreams
their families. for the future). Aspects of personhood might also be
To adequately respond to the vast cultural and threatened in children and adolescents, however
spiritual variation in disclosure, decisionmaking, and emphasis is primarily placed upon suffering caused by
quality of life issues, clinicians should ask parents and the loss of life as yet unlived. While suffering in children,
children about their preferences and beliefs before and especially in the very young, remains poorly
confronting them with bad news and critical decisions understood, work that uses non-verbal means of
regarding end-of-life care. Gatrad and colleagues92 expression such as in drawings (eg, mandala technique)
suggest that a culturally sensitive approach requires indicates the depth and complexity of cognition and
fundamental changes on at least three fronts: emotion in even very young children.86 Suffering and
(1) tackling institutional discrimination in the provision anticipatory grief can also be expressed verbally in the
of palliative care; (2) incorporating cultural issues in context of a therapeutic relationship as described here
the medical and nursing curricula; and (3) embracing between Sourkes—a psychotherapist—and an ill-child.86
complexity and developing a richer appreciation of how Therapist: Are you in any pain? Does anything hurt?
minority communities achieve a dignified end of life. Child: My heart.
We believe that anthropological and sociological Therapist: Your heart?
perspectives on the experiences of being ill and dying Child: My heart is broken…I miss everybody.
can broaden understanding of the multiple personal,
familial, social, and cultural dimensions that caregivers Hope
attach to illness, suffering, and death. The hypothetical “Don’t give up hope.” “The parents have false hope.”
case in panel 4 highlights an individualised approach “The child’s condition is hopeless.” These frequently
to caregiving. used statements suggest that, although the concept of
In this theoretical example, when discussions were hope is poorly defined and the subject of ongoing debate,
about “curative therapies” Sumalee’s parents were the notion is pervasive in health care, and especially in
vocal, however, when it came to discussing the palliative care. That hope has become a clinical entity
possibility that she would die, they remained silent. that might be altered by therapeutic intervention seems
For the medical team, this communication style was to be represented in the striking increase in the number
extremely distressing, since it was not the team’s of articles investigating its role in health care in the
practice to rely on indirect communication when PubMed database from 1970 onwards.96 Although the
establishing goals of care. The family’s approach to word has multiple connotations, hope is broadly defined
end-of-life care, which was affected by cultural, ethnic, as a subjective belief state that combines expectation with
and religious factors, differed greatly from that of the desire and imbues living with meaning and sense of
medical team’s. However, by embracing the need to purpose.94,96
individualise communication and to respect the Adults aware of their impending death might maintain
parents’ approach to end-of-life care, Sumalee and her hope by shifting from a hope for cure to hope for what
family received compassionate care. they define as a good death (eg, as pain free and
The challenge for care providers who work with families comfortable as possible) and with a focus on leaving a
of different ethnic origins is to understand both how and legacy. How to support hope for children with
why patients and families create their own “stories” and life-threatening illness is less clear. An additional
attribute meanings to illness, suffering, and death, while challenge is the struggle for parents and other loved ones
situating each story into a broader cultural and social to maintain hope. What remains unexamined is the role
context. of “healthy denial” in maintaining hope for cure despite a

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very poor prognosis. It is possible that for some children re-frame their experience, to find some meaning in a part
and parents “unrealistic hope” in the face of overwhelming of what they are going through—re-framing involves
disease is a functional coping mechanism that does not helping children and parents consider alternative views
necessarily signify pathological denial. At times, people and narratives for their own experience (eg, by creating a
might hold beliefs that although seemingly discordant legacy).
with each other (eg, the knowledge that one is about to To feel whole again, to be healed, need not be the only
die at the same time as maintaining hope for a last-minute goal in PPC, but rather provides a frame of reference as
reprieve from death) could instead represent healthy to what may be possible, even if only partially realised.
coping. Quality of life can be seen as varying on a spectrum from
In the documentary Making Every Moment Count,99 a suffering on one end to being healed or feeling whole on
paediatric hospice nurse talks about a 17-year-old girl the other end. The task in PPC is to help the child and
called Rachel who underwent lung transplantation for their loved ones find their way as far as they can along
cystic fibrosis and who was very likely to die in the next this continuum from suffering to wholeness.
few years from chronic rejection of the transplant.
According to the nurse, “Rachel said very seriously that Challenge 5: Acknowledging professionals’
when she is to die, she wanted to be here in Canuck Place responses and need for support
(paediatric hospice facility), in a hospice surrounded by Caring for children with life-limiting conditions, their
friends and family, and surrounded by people that knew family, friends, and peers, is highly stressful, yet can also
how to take care of her…and she was talking about the be very rewarding.102–106 Even though little is known about
nurses and the doctors that can help her not feel scared. how health-care professionals cope with the challenges
And then she said: ‘But I have another way that I’d like to of PPC, studies suggest that they are at risk for developing
die…I would like to be sitting on my front porch, wrapped compassion fatigue and burnout.102–111 Some common
in an afgan in a rocking chair and my husband holding stressors, reported by American, Canadian, Greek,
my hand.’” Chinese, and Israeli health-care providers103,105,107,111–113
Hopelessness, the opposite of hope, is highly correlated include exposure to childhood suffering and death,
with depression and is not expected in the dying.94 For communication difficulties with young patients and
adults nearing death, hopelessness was not tied to parents, team conflicts, and the inadequacy of support
knowledge of their condition but rather to loss of systems for care providers. These stressors are often
meaning and purpose. For parents who know that their aggravated by high workloads and staff shortages.
children will soon die, hope may be fostered by helping Of particular interest are qualitative studies that go
to find meaning in their child’s life. Clinicians that ask beyond the investigation of stress and burnout, and
questions such as “what are you most proud of about explore the ethical challenges that professionals
your child?” may encourage child and parent meaning experience in end-of-life care. Davies103 described the
making.100 “moral distress” that Canadian nurses underwent when
curative efforts meant that they were unable to provide a
Healing comfortable death to a child. Their findings are supported
Healing is the process of moving from suffering towards by Olson104 who pointed out the dissonance that American
a sense of wholeness or integrity that depends neither care providers experience when the child’s needs for
upon the functioning of organ systems or homeostasis, palliative care conflict with the continued provision of
nor on the cure of disease. According to Kearney97 healing active treatment imposed by institutional regulations and
is dependent on an innate potential within the ill person. by the family’s or team’s goals of care. Along similar
Healing is not the result of external action upon the lines, De Graves and Aranda114 have described how the
disease (eg, radiotherapy to a tumour site), but rather prognostic uncertainty of most childhood life-threatening
comes from within the ill person to establish wholeness conditions, and the continued hope for survival, make
even in the face of persistent disease. Healing can be decisions to shift from cure to palliation difficult and
fostered, or hindered, by the actions of health-care distressing for Australian pediatricians, nurses, and
professionals. Actions that health-care providers may social workers.
take to create the possibility of healing include:101 Other researchers have explored the emotional
(1) accompanying those in suffering—to be present in impact that the dying process and death of a child has
the face of suffering, to stay with the sufferer and listen, on care providers, and have identified a wide variety of
is an act that reduces suffering; (2) reducing physical grief responses.103,105,112,115–117 Grieving of health-care
pain and other distressing symptoms—with pain professionals remains hidden and disenfranchised,
alleviated and symptoms controlled, a space is created in however, because society expects them to remain strong
which healing may begin; (3) supporting the sufferer as and stoic in the face of death, while institutional regu-
they seek hope in the face of a probable early death—this lations strongly discourage the appearance of vulner-
can include a shift from hope for cure to other hopes (eg, ability through the expression of grief. According to
to enjoy more time at home); and (4) helping sufferers to Doka,118 disenfranchised grief is when people cannot

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openly acknowledge their loss because the importance prevent burnout and to be able to cope with the challenges
of the relationship is not socially recognised; therefore, and grief they encounter when providing end-of-life
they cannot publicly mourn and are, consequently, care. However, comprehensive interventions that aim to
deprived of social support. prevent compassion fatigue and burnout, or to support
Care providers’ grieving process, according to professionals through their grieving process, are rarely
Papadatou and colleagues, has unique characteristics documented in medical reports.113,116,123 Moreover, their
that are common to clinicians even thought they may long-term outcomes remain unknown, which suggests
work in different environments and cultures.105,117,119 The that this is an important area of future investigation.
process is triggered by the loss that professionals feel
when their young patients die. Some health-care Challenge 6: Integrating knowledge of PPC into
professionals might grieve over the loss of a personal basic curricula and training programmes
bond they have developed with a child, some over the A major challenge in PPC is to integrate growing
non-realisation of their efforts to cure or control the knowledge into educational programmes in medicine,
disease, and others over unresolved personal loss that nursing, and allied disciplines. Surveys undertaken in
surfaces with the death of child. Characteristic of the the USA, Canada, and the UK and other countries in
health professionals’ grieving process is an ongoing western Europe124–132 indicate that education in palliative
fluctuation between experiencing grief by focusing on care, especially in bereavement care, remains sporadic
the loss, and avoiding or repressing grief by moving away and fragmented.133 Faculty members say they feel
from it. Such fluctuation is healthy and adaptive and unprepared to teach key components of end-of-life care,
helps professionals attribute meaning to the death of while medical students report a lack of role models and
their patient, as well as to their contribution to the care of mentors who offer feedback and support when they care
the child and their family. Complications occur when for dying patients.125 Residents and practising
care providers do not have fluctuating feelings and are paediatricians also report feeling unprepared to cope
either submerged in their grief, or systematically with end-of-life issues134–136 and tend to avoid or withdraw
suppress and deny it. from situations in which they feel uncomfortable.129,137
A variety of coping strategies have been described to They disregard what Jellinek and colleagues138 have
help professionals manage the stress of caring for referred to as “the dark side” of working with seriously ill
seriously ill children who eventually die. Some coping children. While distancing themselves from stressful
strategies are personal and beneficial in the short term situations, they concurrently report difficulties in their
(eg, engaging in self-care activities such as exercise, communication and interactions with dying children and
meditation, or journal-writing) or beneficial in the long parents.
term (eg, developing a personal philosophy of care, Clinicians are aware, however, of these difficulties and
engaging in self-reflection and self-awareness, often request education and training in PPC as a way of
committing to taking care of one’s self). Other coping coping with the stress that accompanies caring for dying
strategies are work-related, with the most important children and bereaved families.20,137,139,140 In a large survey
being the development of supportive professional of 228 paediatric oncologists from the USA, Canada, and
relationships that promote debriefing and enhance the UK, respondents reported a lack of formal courses in
mutual support;107 health professionals seem to rely more PPC, with 92% admitting that they had learned to apply
on their colleagues, than family and friends, for support. palliative principles of care by trial and error in clinical
The nature of this support differs, and includes the practice. Some, however, seemed to benefit by observing
exchange of information (informational support); the colleagues or other role models during their fellowship
clinical collaboration to meet patient needs (clinical or training and residency.20 This finding underscores the
instrumental support); the sharing of personal feelings urgency to develop alternative models of training and
and experiences (emotional support); and the reflection education, and highlights the importance of providing
and attribution of meaning to one’s work experiences role models in this field. Equally important is allowing
(meaning-making support). Opportunities for formal undergraduate students to come into contact with dying
support (eg, participation in support groups, people, since it helps them learn how to develop a
stress-debriefing sessions, or supervision meetings) and meaningful connection through reflective practice, and
informal support (eg, time-out for discussions) are how to develop a humane approach towards their
encouraged in different work settings, depending on the patients.141–143 Gaining experience in caring for the dying
philosophy and goals of care as well as on rules and can help young doctors learn to tolerate the degree of
regulations with regard to the team’s functioning in the intimacy and personal engagement that other aspects of
face of their patients’ death.120 medical training may subvert or undermine.144 Sahler and
According to the basic principles of PPC121 and her colleagues3 emphasise expanding on “teachable
recommendations proposed by the International Society moments” (spontaneous opportunities that arise in day-
of Paediatric Oncology,122 professionals who provide PPC to-day caring of patients that reveal important lessons) as
services should receive formal and informal support to an effective PPC educational strategy. Learning

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theoretical knowledge, practical skills, and a moral

Panel 5: Educational strategies for paediatric palliative care attitude that comprises a capacity to respond to others
Courses or lectures offered through undergraduate curricula141–143 humanely. Moral attitudes reflect the personal motivation
Corr and co-workers describe to undergraduates two decades of experience with children and commitment of the health-care provider to act in the
and death.146,147 Block and Billings have been co-directing a course for first and second year interest of others and requires a commitment to the
medical students entitled “Living with life-threatening illness” for over 10 years. caring process. It is therefore important that educational
Volunteer patients, all with life-threatening illnesses and several of whom are children, curricula offer structured opportunities for a process of
serve as teachers in the course, teaching the medical students important lessons about reflection and exploration of personal experiences,
the power of listening and bearing with suffering.144 attitudes and responses to death, dying, and bereavement.
Some innovative learning approaches that encourage
Postgraduate education and specialist training programmes140,148–150 trainees to spend time with dying patients and families,
In a longitudinal study, Vazinari and colleagues140 identified that while paediatric house and later reflect on, record, and discuss their experiences,
officers begin their training feeling uncomfortable with death and dying issues, it takes have proved promising in palliative care education and
4 years before they change their attitude and feel comfortable with coping with issues in training.142,144 Browning and Solomon21 argue that because
PPC. The authors suggest that even though training programmes might inform and educational initiatives in PPC must always be grounded
familiarise participants with end-of life issues, it is supervised clinical practice and within the context of relationships between children,
increased professional and personal experience that contribute to the paediatricians’ their families, and practitioners, what is needed is a
preparedness and comfort. relational learning approach. They encourage educators
Postgraduate longitudinal training to involve patients and families in the educational process
Paediatric palliative care is becoming a specialty in its own right, recognised by the Royal and allow their voices to be heard through videos, the
College of Paediatrics and Child Health, and the Royal College of Nursing.151,152 sharing of personal stories, or the discussion of research
Subspecialisation is also under way in the USA.153,154 There are specialist registrar findings that illuminate their needs and experiences.
programmes in the UK, in London and Cardiff, for paediatricians who wish to specialise in While such learning approaches seem promising, there
PPC, and a paediatric component of the distance learning postgraduate course in remains a need to pay more attention to personal attitudes
palliative care at Cardiff University. There are year-long paediatric palliative medicine and responses to the care of dying children and bereaved
fellowship programmes in the USA.155 families as well as to the interdisciplinary dimension of
teamwork to meet the varied and complex needs of
Workshops, seminars, or training programmes for skilled professionals children, siblings, parents, close friends, and peers at an
Most seminars or workshops last a few days and focus on various issues of PPC.123,156,157 institutional and community level.131,138, 167,148
Even though informative, their long-term effects upon the clinical practice of participants Assessment tools to evaluate palliative care curricula168–170
are hardly ever assessed. The Harvard Medical School Center for Palliative Care course and alternative methods of teaching that facilitate
“Palliative Care Education and Practice” is an exception, consisting of 2 weeks of intensive learning in this field are only starting to be
training in large and small groups, with some PPC content. Impact of this training developed.141,142
opportunity has been highly positive.158,159
Curriculum Conclusion
Examples include: The ChiPPS Project (Children’s Project on Palliative/Hospice Services) There remain many more questions than answers about
sponsored by the National Hospice and Palliative Care Association (www.nhpco160); IPPC how to best care for children who will probably die before
(The Initiative for Pediatric Palliative Care) sponsored by the Education Development adulthood. An example of such basic questions include:
Center, Inc (www.IPPCweb.org);161 End of Life Education for Nurses—Pediatric Palliative how to best control physical symptoms such as pain and
Care (www.aacn.nche.edu/ELNEC/Pediatric.htm).162 fatigue; how to communicate with children and
appropriately involve them in decisionmaking; how to
Textbooks ensure that invasive efforts to prolong life in intensive-care
There are several comprehensive PPC textbooks currently in print or press.1,163–166 units do not inadvertently increase suffering and prolong
dying instead of living; and how to provide care that
experiences that occur outside the context of a course or reduces the suffering of the bereaved. While recognising
training programme, offer valuable opportunities for the challenges that remain, we believe that PPC is a
students in health care to develop the competencies holistic field that has much to contribute to the care of
required to be fully present and accompany a patient and seriously ill children and their families. The knowledge
family throughout the illness.145 already exists to improve the implementation of PPC at
A review of medical articles reveals a strikingly small the clinical, educational, institutional, and research levels,
number of publications on the education and training of that can help children with life-threatening illnesses and
professionals in PPC (panel 5). Comprehensive training their families live meaningfully and support professionals
in PPC cannot be aimed solely at the acquisition of in offering quality services and derive satisfaction from
knowledge and skills that will enable professionals to act their work. No single organisation can promote the needs
effectively; it must also address moral beliefs and of children with life-limiting conditions and their families
attitudes. As Olthius and Dekkers141 suggest, effective worldwide. Over the past decade, several organisations
medical education has three interrelated aspects: and international projects have contributed to the

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improvement and development of PPC within their host 15 Fins JJ, Schiff ND. The afterlife of Terri Schiavo.
countries and, more recently, across the world. These Hastings Center Report 2005; 35: 8.
16 Wolfe J, Klar N, Grier HE, et al. Understanding of prognosis
include Children’s Hospice International; The Association among parents of children who died of cancer: impact on For more on Children’s
for the Care of Children with Life-Threatening Diseases treatment goals and integration of palliative care. JAMA 2000; 284: Hospice International see
2469–75. http://www.chionline.org
and their Families;6 the National Hospice and Palliative
17 Meyer EC, Burns JP, Griffith JL, Truog RD. Parental perspectives For more on The Association
Care Organization through its ChiPPS Project;160 and The on end-of-life care in the pediatric intensive care unit. for the Care of Children with
Association of Children’s Hospices. The collaboration of Crit Care Med 2002; 30: 226–31. Life-Threatening Diseases
some of these and other palliative care organisations led to 18 Meyer EC, Ritholz MD, Burns JP, Truog RD. Improving the quality and their Families see
of end-of-life care in the pediatric intensive care unit: parents’
the formation of the International Children’s Palliative priorities and recommendations. Pediatrics 2006; 117: 649–57.
http://www.act.org.uk
Care Network (ICPCN) that aims to promote and facilitate 19 Contro NA, Larson J, Scofield S, Sourkes B, Cohen HJ. Hospital
For more on the National
Hospice and Palliative
communication and co-operation between all individuals staff and family perspectives regarding quality of pediatric
palliative care. Pediatrics 2004; 114: 1248–52. Care Organization see
and organisations throughout the world that are providing www.nhpco.org
20 Hilden JM, Emanuel EJ, Fairclough DL, et al. Attitudes and
or supporting care to children with life-threatening practices among pediatric oncologists regarding end-of-life care: For more on The Association
conditions. Through these and other collaborative results of the 1998 American society of clinical oncology survey. of Children’s Hospices see
initiatives, we are confident that the field of PPC will J Clin Oncol 2001; 19: 205–12. www.childhospice.org.uk
21 Browning DM, Solomon MZ. Relational learning in pediatric
continue to advance and improve the care for children palliative care: transformative education and the culture of
For more on the ICPCN see
with life-threatening illnesses and their families. medicine. Child Adolesc Psychiatr Clin N Am 2006; 15: 795–815. (http://www.icpcn.org)

Contributors 22 Hinds PS, Schum L, Baker J, Wolfe J. Key factors affecting dying
children and their families. J Palliat Med 2005; 8: 70-S8.
All authors contributed to the literature review, writing, and editing of
the manuscript. 23 Dangel T. Poland: the status of pediatric palliative care.
J Pain Symptom Manage 2002; 24: 222–24.
Conflict of interest statement 24 Drake R, Frost J, Collins JJ. The symptoms of dying children.
We declare that we have no conflict of interest. J Pain Symptom Manage 2003; 26: 594–603.
Acknowledgments 25 McCallum DE, Byrne P, Bruera E. How children die in hospital.
J Pain Symptom Manage 2000; 20: 417–23.
We thank the families who shared their children’s stories. J Wolfe is
supported by a grant from the National Cancer Institute (NCI 5 K07 CA 26 Henley LD. End of life care in HIV-infected children who died in
hospital. Dev World Bioeth 2002; 2: 38–54.
096746) and a Child Health Research Grant from the Charles H Hood
Foundation. 27 Kreicbergs U, Valdimarsdottir U, Onelov E, Bjork O, Steineck G,
Henter JI. Care-related distress: a nationwide study of parents who
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