VOLUME 25 䡠 NUMBER 28 䡠 OCTOBER 1 2007

JOURNAL OF CLINICAL ONCOLOGY O R I G I N A L R E P O R T

Place and Provision of Palliative Care for Children With

From Oncology Outreach and Palliative
Care, Oncology Unit, Royal Liverpool
Children’s Hospital, Liverpool; Paediatric
Macmillan Unit, Children & Young
Peoples Cancer Unit, Royal Victoria
Infirmary, Newcastle; UK Children’s
Cancer Study Group, University of Leic-
ester, Leicester; and the Paediatric
Palliative Medicine, Department of
Child Health, Cardiff University School
of Medicine, Wales, United Kingdom.
Submitted April 4, 2007; accepted
July 10, 2007.
The UKCCSG is now known as the
Children’s Cancer and Leukaemia
Group.
Authors’ disclosures of potential con-
flicts of interest and author contribu-
tions are found at the end of this
article.
Address reprint requests to Richard
Hain, MBBS, MSc, MD, MRCP (UK),
FRCPCH, Dip Pall Med, Senior Lecturer
in Paediatric Palliative Medicine and
Oncology, Department of Child Health,
School of Medicine, Cardiff University,
Heath Park, Cardiff CF14 4XN, United
Kingdom; e-mail: hainrd@cardiff.ac.uk.
© 2007 by American Society of Clinical
Oncology
Progressive Cancer: A Study by the Paediatric Oncology
Nurses’ Forum/United Kingdom Children’s Cancer Study
Group Palliative Care Working Group
Jan Vickers, Anne Thompson, Gary S. Collins, Margaret Childs, and Richard Hain
A B S T R A C T
Purpose
The purpose of this study was to describe and show effectiveness of the outreach team model of
palliative care (PC) in allowing home death for children with incurable cancer.
Patients and Methods
Over 7 months, 185 children from 22 United Kingdom oncology centers were recruited to a
prospective questionnaire survey.
Results
One hundred sixty-four children from 22 centers died (median age, 8.7 years; 88 boys, 76 girls).
One hundred twenty-six families completed two or more questionnaires. One hundred twenty
(77%) of 155 with complete data died at home. Preference for home death was recorded in 90
(68%) of 164 and 132 (80%) 164 at study entry and last month of life, respectively. Death occurred
in preferred place for 84 (80%) of 105 with recorded preference at entry. Forty-one (25%) of 164
and 68 (41.5%) of 164 needed no outpatient or inpatient hospital visits, respectively. A named
individual provided on-call PC advice by phone or home visit in 22 (100%) and 18 (82%) of 22 oncology
centers, respectively. As PC progressed, involvement of oncologist and social worker appeared less,
whereas pediatric oncology outreach nurse specialists (POONSs) remained prominent.
Conclusion
Preference for home death expressed by families in our study is similar to others, but the
proportion of children actually able to die there is higher. Home death is facilitated by this model.
Key components are POONSs, pediatric palliative and/or oncology specialist, and general
practitioner. Professional roles change during PC and after death. An ongoing role for the oncology
team in bereavement support is highlighted.
J Clin Oncol 25:4472-4476. © 2007 by American Society of Clinical Oncology

0732-183X/07/2528-4472/$20.00
DOI: 10.1200/JCO.2007.12.0493 INTRODUCTION
Childhood cancer affects approximately one in 600
children in the United Kingdom (UK). Approximately
70% are now cured (unpublished data, United King-
domChildren’sCancerStudyGroup[UKCCSG]),but
this still leaves large numbers of deaths annually.
Children’s palliative care (PC) is a younger spe-
cialty than in adults. While some underlying philos-
ophies and even therapeutic principles can be
extrapolated to children, the pediatric specialty is
quite distinct. There is a comparative dearth of evi-
dence basis.1,2 Care is rarely hospice centered, but
typically provided at home, with support from a
hospital-based oncology team. Liaising between on-
cology center, primary health care team (PHCT)
and family is the responsibility of the pediatric on-
cology outreach nurse specialist (POONS). During
curative treatment, POONSs often give chemother-
apy or perform routine blood tests at home. After
cure is deemed impossible, this link role of POONSs
means that they are well-placed to coordinate PC at
home to keep hospital visits to the minimum conso-
nant with preferences of child and family.
At the time of the study, there was little access
to specialist pediatric palliative medicine (PPM).
Medical support for POONSs, particularly with
respect to prescribing medications such as opi-
oids, was provided by the oncologist and/or gen-
eral practitioner (GP), depending on distance
from the oncology center and clinician confi-
dence managing dying children.
This article describes a model of providing
broader PC for children with cancer, including

4472
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 Place and Provision of PC

complementary therapy (CT) and bereavement support, and dem-

Table 1. Characteristics of Study Patients (N ⫽ 164)
onstrates its effectiveness in allowing most children to be cared for,
and to die, at home. Characteristic No. %

Age
Median 8.9 years
PATIENTS AND METHODS Range 4 months-19 years
Sex
Male 88 53.7
Over a 7-month period, all UKCCSG centers registered children for whom, in
Female 76 46.3
the view of the treating oncologist, cure was no longer possible because of
Tumor type
recurrence/progression despite maximal therapy. Discontinuation of chemo-
CNS/brain tumor 59 36.0
or radiotherapy was not a criterion for study entry; either may be prescribed for
Other solid tumor
palliative or experimental indications. As with all prospective studies of a PC
Germ cell 5 3.0
population, there was an unavoidable element of subjectivity at study entry.
Liver 1 0.6
The point at which a patient’s care becomes palliative cannot be always be
Neuroblastoma 21 12.8
defined. This accurately reflects clinical practice.
Osteosarcoma 8 4.9
Data on symptoms, pharmacologic management, palliative treatment
Soft tissue 18 11.0
and service provision were collected using an instrument developed by the
Wilms’ 7 4.3
Paediatric Oncology Nurses’ Forum/UKCCSG PC working group. Minor
Other 4 2.4
layout modifications were made after a month-long pilot in three centers.
Leukemia 37 22.6
Every month, until death or a maximum of 20 months, data were collected by
Non-Hodgkin’s lymphoma 4 2.4
clinical staff and coordinated by an identified link person at each center, who
Overall survival, years
also completed a service provision questionnaire at study commencement.
CNS/brain
The study was carried out simultaneously with two other studies in this
Median 0.93
population.3,4 There is no duplication of data presented in this article.
95% CI 0.75 to 1.51
Other solid
Median 1.38
RESULTS
95% CI 1.16 to 1.72
Leukemia/lymphoma
Median 2.48
One hundred eighty-five children from 22 UKCCSG centers were
95% CI 1.74 to 3.26
registered. Twenty-one children remained alive at the end of the study
and were excluded. Data were analyzed for 164 (Table 1) from 20
UKCCSG centers (median of 8 patients per center). Thirty-eight died
within 4 weeks of entry, completing only one data form.
The age of children at study entry was 4 months to 19 years All 22 centers identified a specific oncology team member whose
(mean, 8.9 years). There were 88 boys (53.7%) and 76 girls (46.3%). role was to provide 24-hour on-call PC telephone advice. In 18 (82%)
Mean time from diagnosis was 2 years (range, 0 to 12.4 years). Median of 22, that individual also offered 24-hour home visits. Among pa-
survival time was 1.45 years from diagnosis (95% CI, 1.3 to 1.7 years). tients surviving 4 weeks or longer, at commencement of PC, core PC
Median duration of PC was 34 days (range, 0 to 354 days). providers from the oncology team were oncologist 105 of 126 (83%),
Sixty-eight (41.5%) of 164 families had no overnight hospital POONS 110 of 126 (87%), and social worker 77 of 126 (61%). These
stays. Forty-one (25%) of 164 needed no outpatient visits; 75% had at figures became 97 of 164 (59%), 137 of 164 (84%), and 79 of 164
least one. Blood, platelets, radiotherapy, and chemotherapy were the (48%), respectively in the month before death. Core involvement of
commonest reasons. During their last month, children with leukemia/ GPs and district nurses (DNs; ie, PHCT) was 64 of 126 (51%) and 35
lymphoma (17 of 41, 41%) were more likely to visit the hospital (Table of 126 (28%) at the start of PC and became 116 of 164 (71%) and 72 of
2) than those with CNS (16 of 59, 27%) or other solid tumors (23 of 164 (44%) respectively at the end. Children’s community nurses
64, 36%). These differences did not reach statistical significance. (CCNs) were core providers in 43 of 126 cases (34.1%) at the begin-
Of 155 children with complete records, 120 (77%) died at home. ning of PC and 59 of 164 (36%) at the time of death.
Eighty-four (80%) of 105 children whose family recorded a decision at One hundred nine of 164 (66%) used a CT (relaxation, 49 [30%];
the start of PC died in their preferred location. This rose to 87% among massage, 70 [43%]; physiotherapy, 50 [30.5%]; hypnosis, 4 [2.5%]).
those deciding in the last month. Among patients surviving at least 4 weeks, 41 of 126 (35%) were using
Ninety-eight (68%) of 164 families recorded a preference for more than one CT at study entry. At death, this had risen to 89 of 164
home death at the outset. By the last month of life, this had risen to 132 (54%). Fifty-five (34%) used no CT during PC, 57 (35%) used one
(80%) of 164, including 28 families whose children died within a CT, and 52 (32%) used two or more CTs.
month of beginning PC. Eighty-six percent 86% of children for whom Most UKCCSG centers provide immediate contact after a child’s
a preference for home death was recorded at any point (120 of 140) death, including funeral attendance, sending flowers, and bereave-
actually died at home (Table 3). There were six centers in which all ment support (Table 4). POONSs were the main contact with PHCT
registered children (n ⫽ 29) died at home. in 19 of 22 centers. Along with social workers, the POONSs were also
At the start of PC, 29 (18%) of 164 families recorded that they had the main providers of contact with families, including bereavement
yet to express a preference for place of death. By the last month of life, support, for parents and siblings. Contact immediately after death was
this had fallen to 17 (10%) of 164. Data were missing for 30 children at provided by POONSs (22 of 22), social workers (18 of 22), physicians
study entry and seven in the last month of life. (10 of 22) and ward nurses (eight of 22).

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 Vickers et al

Table 2. Invasive Interventions During Palliative Care by Tumor Type

Intervention
Antibioticsⴱ Chemotherapyⴱ Bloodⴱ Plateletsⴱ Radiotherapy Surgery
Tumor Type No. of Patients No. % No. % No. % No. % No. % No. %

CNS/brain 39 25 42 28 47 6 11 6 11 8 14 7 12
Leukemia/lymphoma 41 26 63 15 37 22 54 23 56 2 5 2 5
Other solid tumors 64 32 50 31 48 28 44 16 25 20 31 12 19
Total 164 83 51 74 45 56 34 45 27 30 18 21 13
ⴱ
Provided at home or in hospital.

these,7,8,10-12 but as end of life approaches, the needs of the family

DISCUSSION
Childhood cancer is rare, with the incidence in the 0- to 14-year age
range at 133.7 per million and 213.9 per million in the over-15-years
age group5 in the UK. Despite significant improvements in survival
over many decades, cancer remains the single largest cause of death
after accidents, with more than 400 deaths annually in the UK from
childhood malignancy. PC for children and young people with malig-
nancy has developed extensively in the UK during the last 20 years,
largely as a result of the development of the role of the POONS.6
Children’s PC is an emerging specialty rooted in a multidimen-
sional approach that addresses spiritual and psychosocial needs of
children as well as physical. This requires the skills of a variety of
professionals, trained to work with children and working as a team.7,8
Funding for health care in the UK is national, and always free at
the point of need. At the time of the study, commissioning of tertiary
pediatric oncology services was regional. Provision of PC was seen as
part of the oncology service and covered by the same commissioning
arrangements. No funding distinction was, or is, made between care
provided at home or in hospital. Both are subsumed in commissioned
oncology services. By avoiding financial penalties for home care, this
avoids one important potential barrier to providing flexible PC ser-
vices for children.
This study describes care for children in the palliative phase of
cancer in the UK. It complements other publications regarding
physical management of symptoms.3,9 The nature of PC in chil-
dren with cancer can be contrasted both with PC in adults with
cancer and with PC delivered to children with nonmalignant life-
limiting conditions. Children with cancer are few compared with
are intense, making heavy demands on the team caring for them.
This is particularly true if the preference of families for home death
is to be accommodated.
In contrast with an earlier study,13 all centers identified staff
whose role was specifically to provide a 24-hour on-call service in PC.
The data show a marked change in professional involvement between
the start of PC and the last month of life. At the beginning of PC, the
POONS and oncology consultants are seen as more or less equally
involved in providing palliation. By the last month of life, many
consultant oncologists have become less involved while POONSs are
more often seen as core providers. This recognizes changing priorities
of care during the palliative phase, when medical investigations and
medications become less important. Few oncology consultants in this
study withdrew entirely from the family’s care.
The importance of a key worker in coordinating PC for children
is emphasized in a number of authoritative publications.5,7,8,14 Our
study suggests that POONSs are well placed to take on this role for
most families. Their role has developed to address inexperience in
delivering pediatric palliative care within the PHCT.6,15 Such inexpe-
rience is inevitable, given the rarity of most life-limiting conditions,
including cancer, in children. The role of POONSs now encom-
passes empowering PCHT through advice and direct patient
care15; providing an interface between primary, secondary, and
tertiary care services; and coordinating services.6,16
More recently, there has been an expansion in the number of
physicians interested or specializing in palliative medicine in chil-
dren.17,18 The impact of this on quality of life for children dying from
cancer has yet to be evaluated.

Table 4. Staff Routinely Involved in Providing Bereavement Care

Table 3. Comparison of Planned and Actual Place of Death at Study Entry
and by the Time of Death Social Ward
Type of Care POONS Worker Physician Nurse Other
Died Within Intended at
Intended at 4 Weeks of Final Attend funeral 21 18 5 20 6
Location Entry Entry Month Actual Send flowers 8 4 1 10 5
Immediate contact 22 18 10 8 3
Home 70 28 132 120
Home visit 21 15 1 2 1
Local hospital 1 1 12
PHCT contact 19 1 8
UKCCSG center 3 3 19
PHCT visit 13 1
Undecided 24 5 17
Support for as long required 13 14 1 1
Hospice 4 7
Support for a set time 11 8 1
Other 3 1 Group bereavement (parents) 9 17 2 2 5
Unknown 29 1 7 9 Group bereavement (siblings) 7 9 1 6
Total 126 38 164 164
Abbreviations: POONS, pediatric oncology outreach nurse specialist; PHCT,
Abbreviation: UKCCSG, United Kingdom Children’s Cancer Study Group. primary health care team.

4474 JOURNAL OF CLINICAL ONCOLOGY

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 Place and Provision of PC
CCNs were involved in the care of approximately one third of
children, and this did not change over the course of PC. Access to this
potentially important resource remains limited in some areas, and it
may be that more families would choose to involve CCNs if the option
were available.
During PC, in contrast with earlier phases of treatment, home is
the principal location for care. Twenty-five percent of children did not
visit the hospital outpatient department at all, and 41.5% required no
hospital admission during the palliative phase.
Of 155 children with complete records, 120 (77%) died at home.
It is not known whether death at home is more or less likely to be
comfortable than death in hospital. What is clear, however, is that
most families prefer their child to die at home if possible.19-22 The
opportunity to choose place of care and death is emotionally impor-
tant.23,24 One of the most important discussions the oncology team
will have with the family of a dying child is where they would prefer
death to occur.25
The proportion of children able to die at home in the UK is
significantly greater than those indicated in studies in other coun-
tries9,26-32 (range, 49% to 60%). Many factors can affect parental
decision making,24,33 including cultural differences. Recent stud-
ies9,13,34 suggest that a country’s health care funding is a particularly
strong influence. The outreach-based model may allow families to
remain at home under circumstances that would make it impractical
were no such model in place.
Our results also contrast with studies in adults35 showing that
most die in hospital or hospice, although this trend may be slowing36
perhaps as a result of national initiatives aimed at facilitating choice in
the location of PC.35,37,38
At entry to our study, a significant minority (18%) of families
(Table 3) had not yet decided where they wished their child to die.
It is likely that this included some who had not yet been given the
opportunity to consider the question, underlining the importance
of proactively raising the issue early with families. In accordance
with earlier studies,19,20,22 those who had made a decision showed
an overwhelming preference for death to occur at home— 68% in
our study.
It might be anticipated that, as the child’s condition deterio-
rates and the end of life approaches, families would lose confidence
in their ability to care for the child at home. In our study, the
reverse was true. During the final month, the proportion of fami-
lies preferring home had risen to 80%. This suggests that families
felt empowered by the support given to them by the POONSs,
supported in turn by the oncologist and GP and respective tertiary
and community teams.
The palliative needs of children with cancer are different from
those with other life-limiting conditions, and it has been suggested
that children’s hospices may not be suitable locations.13,39 Most
oncology centers in the UK have an infrastructure in place for such
children to be cared for at home. In this study, only a small number
of children dying with cancer were reported to have spent time in a
children’s hospice. They may represent a more important resource
in the future, as their working links with oncology units become
closer.
A fundamental principle of PC is that interventions should be
offered only if their potential benefit outweighs their probable burden
to the patient. For a child close to the end of life, avoiding unwelcome
hospital visits should be considered a priority. Diagnosis and social
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class, as well as patient choice, have been identified as factors influenc-
ing how far this is possible in practice.28,36
Facilitating care at home inevitably means providing some
interventions there that are more traditionally carried out in hos-
pital. Transfusion of blood or platelets, for example, can confer
significant improvements in quality of life. Over the course of PC,
POONSs administered at-home interventions that included chem-
otherapy (32.3%), platelets (7.3%), and blood (1.8%). Facilitating
such interventions in the home allows children to experience
symptom benefits with smaller burden. Our data suggest that it was
most difficult to achieve in children with leukemia or neuroblas-
toma (Table 2), who were also children most likely to need blood
and/or platelet support.
During the palliative phase, CTs offer an important modality
for treatment for many families. CTs typically impose little burden:
most are painless and nontoxic in most patients. They can usually
be done at home and do not require uncomfortable trips to hospi-
tal. This makes many CTs ideal palliative interventions, indepen-
dently of any evidence of effectiveness.40 Most are not, however,
covered by the National Health Service and, in the UK, financial
costs must usually be borne by the family. The proportion of
families using CT rose from approximately one third at study entry
to more than half during the last month of life, emphasizing the
importance of acknowledging and discussing openly the use of CT
with families. In our study, massage and physiotherapy were the
two most popular therapies, with relaxation becoming increasingly
popular towards the end of life.
The family of a child who dies as a result of cancer will often
describe a sense that they have been multiply bereaved, losing not only
their child and any children he or she might have had but also the
routine of caring and relationships with those who have gathered
during the illness to provide support. Clearly, the relationship between
the family and the professionals caring for them must change at the
point of the child’s death. Involvement beyond a certain stage would
be unnecessary and intrusive as well as impractical.
Our study suggests that most members of the multidisci-
plinary team take some part in bereavement support (Table 4).
Again, it is the POONSs who tended to remain the most engaged
with families after death. Although some units provided support
for a specified period after death, others provided it for as long as
was required. POONSs, social workers, and ward nurses were
particularly proactive in the immediate period after death had
occurred, attending the funeral, sending flowers and making con-
tact with the family. The POONS often went on to engage proac-
tively with the family and with the PHCT. Group bereavement
support for parents and for siblings of the child was provided both
by the social workers and the POONSs. Interestingly, few physi-
cians engaged in this process (Table 4). Doctors can provide valu-
able support to such groups, because misunderstandings and lack
of information can be factors in complicated grief.
Our study describes a model for providing PC to children dying
as a result of cancer. A coordinated pediatric oncology network has
existed in the UK for many years, and the model has developed in that
context. It is characterized by a change as death approaches, both in
the professionals involved in providing PC and in the location
where care and ultimately death take place. Care led by physicians
in the tertiary center gives way to care coordinated by specialist
nurses in the home.
4475
 Vickers et al

Thus POONSs are pivotal in effecting a gradual transfer of care

AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS
for the family from the tertiary oncology center back to the GP, OF INTEREST
without sacrificing the specialist skills of either team. Together with
the social workers, POONSs are also well placed to provide ongoing The author(s) indicated no potential conflicts of interest.
bereavement support for the family, whom, by the time of death, they
typically know very well. AUTHOR CONTRIBUTIONS
Our study also confirms that the great majority of families would
prefer their child to die at home if possible. Our data suggest that the Conception and design: Jan Vickers, Anne Thompson
flexible model we describe here facilitates this. Furthermore, the pro- Provision of study materials or patients: Jan Vickers, Anne Thompson,
vision of specialist outreach nurses allows some palliative interven- Richard Hain
Collection and assembly of data: Jan Vickers, Ann Thompson, Gary
tions such as transfusion, which might otherwise require a hospital
Collins, Richard Hain
visit, to be administered at home. In this way, home care before and at Data analysis and interpretation: Jan Vickers, Anne Thompson, Gary S.
the time of death is made more likely. Collins, Richard Hain
Developments since this study that will influence, and potentially Manuscript writing: Jan Vickers, Anne Thompson, Gary S. Collins,
further improve the effectiveness of this model, include an expansion Richard Hain
in the number of specialist pediatricians in PC and a closer relation- Final approval of manuscript: Jan Vickers, Anne Thompson, Gary S.
ship with children’s hospices. Collins, Margaret Childs, Richard Hain

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