JOURNAL OF PALLIATIVE MEDICINE

Volume XX, Number XX, 2018 Original Article

ª Mary Ann Liebert, Inc.
DOI: 10.1089/jpm.2017.0626

Pharmacological Management of Symptoms in Children

with Life-Limiting Conditions at the End of Life
in the Asia Pacific

Lee Ai Chong, MPaeds, Grad Cert Pall Care (Flinders),1 Poh Heng Chong, MBBS, MMed,2
and Joyce Chee, BAcc3

Abstract
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Background: The provision of pediatric palliative care in Asia Pacific varies between countries and availability
of essential medications for symptoms at the end of life in this region is unclear.
Objective: To determine medications available and used in the management of six symptoms at the end of life
among pediatric palliative care practitioners in Asia Pacific. To identify alternative pharmacological strategies
for these six symptoms if the oral route was no longer possible and injections are refused.
Design and Setting: An online survey of all Asia Pacific Hospice Palliative Care Network (APHN) members
was carried out to identify medications used for six symptoms (pain, dyspnea, excessive respiratory secretions,
nausea/vomiting, restlessness, seizures) in dying children. Two scenarios were of interest: (1) hours to days
before death and (2) when injectables were declined or refused.
Results: There were 54 responses from 18 countries. Majority (63.0%) of respondents were hospital based.
About half of all respondents were from specialist palliative care services and 55.6% were from high-income
countries. All respondents had access to essential analgesics. Several perceived that there were no available
drugs locally to treat the five other commonly encountered symptoms. There was a wide variation in preferred
drugs for treating each symptom that went beyond differences in drug availability or formulations.
Conclusion: Future studies are needed to explore barriers to medication access and possible knowledge gaps
among service providers in the region, so that advocacy and education endeavors by the APHN may be optimized.

Keywords: Asia Pacific; end of life; palliative care; pediatrics; symptoms; treatment

Introduction areas of education and advocacy, with a mission to improve

access to palliative care by patients and families. A pediatric

P ediatric palliative care for children with life-

limiting conditions is a growing movement around the
world, although in practice its development has been both
special interest group (Peds SIG) within APHN was formed
in 2013. A service directory of healthcare providers caring for
children was developed in 2015 using data collected through
challenging and complex. The spectrum of conditions that are an online survey. In the same survey, unique care models that
life limiting is broad, and palliative care needs for this group responded to local needs were described, yet similar learning
of patients that extends from neonates to adolescents and needs and challenges were shared by all providers. Symptom
even young adults are diverse.1–3 Trained pediatric palliative management including end-of-life care and medication ac-
care providers are still not widely available, and evidence to cess were among issues raised.7
inform clinical practice lags behind its adult counterpart.4,5 To date, there is no published data on medication use
In the Asia Pacific, the provision of pediatric palliative at the end of life for children in the Asia Pacific. It has been
care is inconsistent across settings.6 The Asia Pacific Hospice reported that there remains a significant symptom burden
Palliative Care Network (APHN) was officially registered in dying children elsewhere, although prevalence for this
back in 2001. It aims to unite countries within the region in varies between diagnoses.8 Some of the distressing symptoms
1
Department of Paediatrics, University of Malaya, Kuala Lumpur, Malaysia.
2
Star PALS, HCA Hospice Care, Singapore, Singapore.
3
Department of Palliative Medicine, Asia Pacific Hospice Palliative Care Network, National Cancer Centre Singapore, Singapore,
Singapore.
Accepted April 3, 2018.

1
 2 CHONG ET AL.

described include agitation, anxiety, loss of appetite, change
in behavior, constipation, cough, drowsiness, dyspnea, fa-
tigue, nausea/vomiting, and pain.8–14
The APHN Peds SIG aimed to explore pharmacological
practices among pediatric palliative care practitioners in the
Asia Pacific when treating distressing symptoms in children
at the end of life. Also of interest were possible novel ways
providers administered medications at end of life when in-
jectables were either unavailable or declined. Six symptoms
(pain, dyspnea, excessive respiratory secretions, nausea/
vomiting, restlessness, and seizures) were selected based on
literature reviews and the authors’ clinical experience.
Methods
A survey was conceptualized by the authors and eventually
launched on the APHN webpage. The questionnaire had two
sections. The first section asked participants for details of
themselves and the services they worked for. The second
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for completion. Within 2 months, there were 39 preliminary
responses received.
To maximize outreach, national pediatric groups and pal-
liative care associations referred by APHN members were
further approached between November 2015 and February
2016. An additional 15 responses were received in the en-
suing 2 months.
Study findings were tabulated on Microsoft Excel 2016,
where descriptive analyses of demographic data and re-
sponses to treatable symptoms were performed. Differential
abilities to treat symptoms between high- and middle-income
countries were compared using chi-square tests. Statistical
significance was set at a p value of <0.05. These analyses
were completed using IBM SPSS statistical software
version 21.
Ethical concerns
This study was a cross-sectional survey of healthcare
providers. All respondents were provided information about

section required respondents to list at least three medications

(including available preparations or formulation), which
were commonly used for each of the six symptoms in two
scenarios: near the end of life (measured in hours to days) and
when the patient was unable to take orally and injections were
refused. For pain, a list of seven widely available drugs was
listed with additional free-text space provided for respon-
dents to add any other medication they might use in their own
setting. It was anticipated that respondents would be able to
complete the whole survey in about 15 minutes.
All APHN members and those on APHN’s mailing list
were approached by the APHN secretariat through e-mail
between September 2015 and November 2015 for partici-
pation. The objectives of the study were shared and all who
provided care for dying children in the Asia Pacific were
invited to participate in the online survey. Those who had
limited Internet access were mailed hard copies of the survey
the survey and contact of study coordinators if clarification
was required. No incentives were given for participation.
This survey fulfilled the criteria of an audit with no clinical
intervention and ethics approval was not required. Consent
was deemed to have been obtained with survey completion.
Results
Characteristics of respondents
There were 54 respondents, comprising doctors, nurses,
and 1 child life coordinator from 18 countries. A majority of
34 (63.0%) participants were from hospital-based services.
Just over a quarter of respondents provided both hospital- and
home-based services (Table 1).
Of all respondents, 30 (55.6%) came from services in the
World Bank list of high-income countries.15 There were 28

Table 1. Characteristics of the Respondents from 18 Countries in the Asia Pacific Region (n = 54)
Respondent’s service
Number of respondents
Country from each country Hospital based Home based Hospital and home based
Australia (HI) 8 4 1 3
Bangladesh (LM) 3 2 0 1
China (UM) 1 1 0 0
Hong Kong (HI) 3 3 0 0
India (LM) 2 2 0 0
Indonesia (LM) 1 0 0 1
Japan (HI) 3 3 0 0
Korea (HI) 2 1 0 1
Malaysia (UM) 6 3 2 1
Mongolia (LM) 1 1 0 0
Myanmar (LM) 1 1 0 0
New Zealand (HI) 8 4 1 3
Philippines (LM) 5 2 1 2
Singapore (HI) 5 3 1 1
Sri Lanka (LM) 1 1 0 0
Taiwan (HI) 1 0 0 1
Thailand (UM) 2 2 0 0
Vietnam (LM) 1 1 0 0
54 34 6 14
HI, high-income country; LM, lower middle-income country; UM, upper middle-income country. (World Bank Economic Classification).
 MEDICATION AT EOL
Table 2. Ten Common Analgesics Used By Respondents (n = 54)
Drug Available to respondents, n (%)
Paracetamol/acetaminophen 54
Morphine 53
Fentanyl 52
Ibuprofen 50
Tramadol 49
Oxycodone 37
Codeine 39
Methadone 11
Gabapentin 8 (14.8)
Hydromorphone 7 (13.0)
(52%) respondents from specialist palliative care services,
inferring from their appointments (e.g., palliative care con-
sultant and palliative care doctor) or the names of their ser-
vices (e.g., hospice, pediatric palliative care service, and
pediatric palliative care program).
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Treatment of symptoms at end of life
(hours to days before death) using
any route of administration
Pain. All 54 respondents had paracetamol or acetamin-
ophen to treat pain, and the commonly available formulations
were tablets (49 respondents, 90.7%), syrup (48 respondents,
88.9%), and suppositories (39 respondents, 72.2%). The three
most common opioids available were morphine (53 respon-
dents, 98.1%), fentanyl (52 respondents, 96.3%), and tra-
madol (49 respondents, 90.7%). Other opioids used were
oxycodone, codeine, methadone, hydromorphone, and ta-
pentadol. The 10 commonly used analgesics were mostly in
tablet formulation with few having access to child-friendly
preparations (Table 2).
Adjuvants that were used in pain management included
antiepileptics, anti-inflammatories, benzodiazepines, antide-
pressants, antipsychotics, corticosteroids, and ketamine.
Dyspnea. There were five (9.3%) respondents (one from
high-income country and four from lower middle-income
countries) who claimed they had no available medication for
dyspnea. For respondents with treatment options, morphine
was the first drug chosen by 41 respondents (83.7%). Five
(10.2%) others used morphine as second-line or third-line
options. For instance, codeine was used before morphine by
one respondent. Other opioids that might be considered for
dyspnea included fentanyl (six respondents, 12.2%), oxyco-
done (seven respondents, 14.4%), codeine (two respondents,
4.1%), and hydromorphone (one respondent, 2%).
Benzodiazepines and corticosteroids were used to manage
breathlessness by 29 (59.2%) and 3 (6.1%) respondents, re-
spectively. The most common benzodiazepine mentioned was
midazolam. Three respondents (6.1%) from high-income coun-
tries had used only benzodiazepines for the treatment of dyspnea.
Inhalation therapies such as bronchodilators and oxygen
were used by six (12.2%) and four (8.2%) respondents, re-
spectively, alongside other pharmacological options.
Excessive respiratory secretions. Seven respondents
(13.0%) declared that they had no medication available to
3
Most common preparation (n)
(100) Tablet (49)
(98.1) Intravenous (50)
(96.3) Transdermal (48)
(92.6) Tablet (45)
(90.7) Tablet (48)
(68.5) Tablet (34)
(63.0) Tablet (34)
(20.4) Tablet (11)
Capsule (7)
Tablet (7) and injection (7)
treat excessive respiratory secretions and three (42.9%) of
whom were from high-income nations. A variety of musca-
rinic receptor antagonists were used by those who could treat
excessive respiratory secretions (Fig. 1).
The most common medication used was hyoscine and
available preparations included injections (21 respondents,
56.8%), tablets (21 respondents, 56.8%), transdermal (18
respondents, 48.6%), and syrup/drops (12 respondents,
32.4%). Other therapies or interventions used by one or two
respondents for excessive respiratory secretions included
anisodamine, ipratropium, trihexyphenidyl, octreotide, and
warm humidified air.
Restlessness. Five respondents (9.3%), all from
middle-income countries, reported having no existing drugs
to manage restlessness. The two most commonly used first-
line drugs by respondents who could treat restlessness at the
end of life were haloperidol (22 respondents, 44.9%) and
midazolam (21 respondents, 42.9%). Cumulatively, the two
most common classes of drugs used by all respondents for
restlessness were benzodiazepines (midazolam, clonazepam,
diazepam, and lorazepam) and antipsychotics (haloperidol,
levomepromazine, olanzepine, chlorpromazine, and risper-
idone). Antiepileptics (phenobarbital and phenytoin), chloral
hydrate, and morphine were rarely chosen for restlessness at
the end of life. (Fig. 2)
Nausea/vomiting. Four respondents (7.4%) declared
that they had no available pharmacological treatment options
for their patients with nausea and vomiting at the end of life.
Of the four respondents, one was from a high-income coun-
try. For the rest with treatment for nausea/vomiting,
FIG. 1. Number of services and medications used for
managing excessive respiratory secretions.
 4 CHONG ET AL.
FIG. 2. Classes of drugs used by services for restlessness
at end of life.
medications that would be used first were metoclopramide (16
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respondents, 32.0%), ondansetron (15 respondents, 30.0%),
domperidone (8 respondents, 16.0%), haloperidol (5 respon-
dents, 10.0%), and promethazine (3 respondents, 6.0%) as
well as granisetron, olanzepine, and levomepromazine. Other
drugs considered by smaller number of participants included
chlorpromazine, cyclizine, cinnarizine, dexamethasone, di-
phenhydramine, novamin, prochlorperazine, ranitidine, and
tropisetron.
Seizures. Six respondents (11.1%) perceived they had
nothing at their disposal to manage patients with seizures at
the end of life. Two respondents were from high-income
countries. Among the rest with treatment, the first choice
included diazepam (18 respondents, 37.5%), midazolam (15
respondents, 31.3%), clonazepam (5 respondents, 10.4%),
lorazepam (4 respondents, 8.3%), and carbamazepine, phe-
nobarbitone, and phenytoin (each cited by 2 respondents,
4.2%). For services using diazepam, preparations available
were injections (29 respondents, 78.4%), suppositories or
enemas (16 respondents, 43.2%), tablets (13 respondents,
35.1%), and syrup (3 respondents, 8.1%). Midazolam was
available as injections (30 respondents, 78.9%), tablets (10
respondents, 26.3%), syrup/drops (6 respondents, 15.8%),
nasal spray (5 respondents, 28.9%), and buccal formulation
(4 respondents, 10.5%). Other drugs that had been used for
seizures were sodium valproate and levetiracetam. (Fig. 3)
FIG. 3. Medications used for seizures at end of life.
Treatment of symptoms at the end of life
when the patient is not able to take
orally and injections are declined (Table 3)
Pain. There would not be any treatment available for
patients in the mentioned scenario for six respondents
(11.1%), one of whom is from a high-income country. The
three most common medications used for the rest were fen-
tanyl (35 respondents, 74.5%), morphine (26 respondents,
55.3%), and paracetamol (15 respondents, 31.9%). Other
opioids, benzodiazepines, and nonsteroidal anti-inflammatory
drugs were also used for analgesia.
Dyspnea. Ten respondents (18.5%) would not be able to
treat dyspnea in this situation. Three of whom are from high-
income countries. Alternatively, the common medications
used as first-line drug options in others were opioids (29
respondents, 65.9%) and benzodiazepines (12 respondents,
27.3%). Atrovent and salbutamol nebulization, as well as
oxygen, were used as first-line drugs by three different re-
spondents.
Excessive respiratory secretions. A large number of
respondents, 22 (40.7%), had no interventions to offer for
excessive respiratory secretions when patients could no
longer swallow and refused injections. Five of the respon-
dents were from high-income countries. The first drug to be
used by the rest was atropine (15 respondents, 46.9%) and
hyoscine (15 respondents, 46.9%). Other drugs mentioned
were fentanyl and ipratropium.
Restlessness. There were 13 respondents (24.1%), 5
from high-income countries, who reported that there would
be no available treatment here. In others, there were up to 12
different medications that potentially could be used from
drug classes that included benzodiazepines, antipsychotics,
antiepileptics, opioids, and other types of sedatives. The three
most common medications and formulations used for rest-
lessness were rectal diazepam (18 respondents, 43.9%),
buccal midazolam (16 respondents, 39.0%), and intranasal
midazolam (10 respondents, 24.4%).
Nausea/vomiting. There were 18 respondents (33.3%)
who felt they had no treatment for nausea or vomiting in the
instance when injectables were not an option. A third of these
respondents were from high-income countries. The medications
that would be used first were 5-hydroxytryptamine-3-receptor
(5HT3) antagonists (11 respondents, 30.6%), domperidone
(8 respondents, 22.2%), haloperidol (5 respondents, 13.9%),
metoclopramide (3 respondents, 8.3%), hyoscine (3 respon-
dents, 8.3%); dexamethasone, diazepam, promethazine,
lorazepam, and olanzapine were also used. The commonest
medications used were sublingual/buccal 5HT3 antagonist
and rectal domperidone (eight respondents, 22.2%, each),
and transdermal hyoscine (five respondents, 13.9%).
Seizures. There were 10 respondents (18.5%), 5 of
whom were from high-income countries, who would not be
able to offer any treatment for seizures when injections were
refused. Of those respondents with treatment options, the three
most common medications that were used for seizures were
rectal diazepam (31 respondents, 70.5%), buccal midazolam
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Table 3. Routes for Drug Administration for Symptoms at End of Life, when Unable to Swallow and Refused Injection
Excessive
respiratory
secretions Nausea/vomiting
Route Pain (n = 47) Dyspnea (n = 44) (n = 32) Restlessness (n = 41) (n = 36) Seizures (n = 44)
Sublingual/ Fentanyl Morphine Atropine Morphine Ondansetron Phenytoin
buccal Morphine Fentanyl Hyoscine Lorazepam Granisetron Clonazepam
Oxycodone Clonazepam Clonazepam Lorazepam Lorazepam
Methadone Diazepam Diazepam Domperidone Midazolam
Buprenorphine Lorazepam Midazolam Haloperidol
Midazolam Midazolam Olanzapine Levomepromazine
Clonazepam Risperidone Olanzapine
Ibuprofen
Transdermal Fentanyl Fentanyl Fentanyl Fentanyl Hyoscine Fentanyl
Buprenorphine Hyoscine Hyoscine

5
Per rectal Morphine Morphine Hyoscine Chloral hydrate Ondansetron Chloral hydrate
Oxycodone Oxycodone Phenobarbitone Granisetron Paraldehyde
Methadone Methadone Haloperidol Domperidone Phenobarbital
Buprenorphine Codeine Morphine Haloperidol Levetiracitam
Tramadol Haloperidol Diazepam Metoclopramide Chlorpromazine
Paracetamol Diazepam Midazolam Diazepam Haloperidol
Diclofenac Midazolam Prochlorperazine Diazepam
Promethazine Lorazepam
Midazolam
Intranasal Fentanyl Fentanyl Midazolam Midazolam
Oxycodone Morphine Clonazepam
Morphine Midazolam
Midazolam
Nebulization Salbutamol Ipratropium
Atrovent
Oxygen
 6 CHONG ET AL.
Table 4. Respondents with no Treatment Options at End of Life in Both Scenarios
High-income country,
Symptom n (%) (n = 30)
Any route
Shortness of breath 1 (3.3)
Respiratory secretions 3 (10.0)
Restlessness 0 5
Nausea/vomiting 1 (3.3)
Seizures 2 (6.7)
Nonparenteral options only
Pain 1 (3.3)
Shortness of breath 3 (10.0)
Respiratory secretions 5 (16.7)
Restlessness 5 (16.7)
Nausea/vomiting 6 (20.0)
Seizures 5 (16.7)
*p < 0.05.
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(18 respondents, 40.9%), and rectal midazolam (13 respon-
dents, 29.5%). However, antiepileptics (phenytoin, pheno-
barbital, levetiracetam, and paraldehyde), antipsychotics
(haloperidol and chlorpromazine), and hypnotics/sedatives
(chloral hydrate) were some of the other therapeutic options
offered.
Country-specific differences in terms
of availability of treatment options
Overall, almost half (42.6%) of all respondents have treat-
ment options for all symptoms in both end-of-life scenarios
(whether through any route or only nonparenteral options).
There were two respondents, (both from lower middle-income
countries), who only had treatment for pain at end of life. The
number of treatable symptoms is higher from respondents in
high-income countries (M 10, standard deviation [SD] 1.96)
than from those in middle-income countries (M 8, SD 3.59);
t(52) = 2.57, p = 0.013. These country income-related differ-
ences are also demonstrated among individual symptoms in a
few cases (Table 4).
Discussion
This is the first survey of medication use in dying children
within the Asia Pacific. Although it revealed differing prac-
tices, most healthcare professionals had at least some drug
treatment options to manage distressing symptoms in a dying
child within their own settings, particularly for the manage-
ment of pain. However, once the child loses the ability to
swallow or declines the use of parenteral treatment, thera-
peutic options can become limited.
There is representation from 18 of the 21 countries in the
APHN mailing list, providing a broad overview of the spec-
trum of available medications and their usage in practice. The
spread of respondents who operate at varying capacities re-
vealed contextual differences in practice between services.
Comparisons can also be made between geographical regions
with dissimilar healthcare resources.
Pharmacological pain management in different centers
around this region can adhere to the latest WHO recom-
mendations as majority of respondents have at their disposal
paracetamol (100%), ibuprofen (94.4%), and aqueous mor-
Middle-income
country, n (%) (n = 24) v2, p
4 (16.7) 2.82, p = 0.093
4 (16.7) 0.53, p = 0.469
(20.8) 6.89, p = 0.009*
3 (12.5) 1.64, p = 0.201
4 (16.7) 1.35, p = 0.245
5 (20.8) 4.13, p = 0.042*
7 (29.2) 3.25, p = 0.072
16 (66.7) 14.03, p = < 0.001*
8 (33.3) 2.03, p = 0.155
12 (50) 5.40, p = 0.020*
5 (20.8) 0.15, p = 0.695
phine (98.1%).16 The only respondent who did not have ac-
cess to aqueous morphine was from a setting where it is
obtainable from hospitals within the same country. A closer
collaboration between practitioners or centers within the
same healthcare system can in this instance potentially fa-
cilitate barrier-free access to vital medications.
In contrast to pain, some patients did not have readily avail-
able treatment for other symptoms at the end of life. The situ-
ation worsens as the patient becomes unable to swallow or
refuses injections. Of concern, there were two respondents from
two different lower middle-income countries who shared that
they had no treatment for all five other symptoms studied.
Practitioners in high-income countries seem more likely than
those in middle-income countries to have wider pharmacologi-
cal options in managing end-of-life symptoms. It is uncertain
whether this arises from actual barriers in drug access, or indi-
cates an underlying knowledge gap. Either way, it signals a
priority for closer examination by the Peds SIG that may yield
future plans for targeted advocacy or educational initiatives.
There were variances noticed in reported drug availability
and clinical practice between providers within one country,
irrespective of the country’s income level. Although it is easy
to understand how drug access can influence practice, given
limited data available from this survey, it is uncertain how
these discrepancies within each country may come about. It is
postulated that there could have been regional disparities in
healthcare funding or distribution of healthcare resources.
Limitations notwithstanding, raising competencies among all
providers on the proper use of available drugs might in some
way mitigate these inequities, fostering good end-of-life care
among dying children system wide. For example, despite the
availability of morphine in their services, five respondents
somehow felt they were not able to treat dyspnea. In addition,
medications administered for symptom management by some
at end of life were long acting. These may not be appropriate
when prognosis is short and rapid control of symptoms crit-
ical. Alternatively, variations in management among pro-
viders for similar symptoms may just reflect differential
responses to multiple etiologies for one symptom, or differ-
ing practice preferences among providers. In any case,
careful assessment and individualized management are al-
ways good practice, particularly in pediatric end-of-life care.
 MEDICATION AT EOL
Although nontube-fed children at the end of life who lose
their ability to swallow and refused injections may not be a
majority, alternative or novel methods of drug administration
can be beneficial here.17 Not only do these measures reduce
symptoms and bring comfort, they also allow children’s
wishes to be respected and give a sense of control to care-
givers in rendering loving care themselves, especially in the
home setting.18 The use of most of these drugs, including
suggested routes of administration, is out-of-license and lack
evidence base. Although controlled trials for efficacy and
safety are pending, practice findings shared here can serve as
a guide to healthcare professionals.
This survey is only exploratory and has several limitations.
First, despite including at least one provider from 18 coun-
tries, there may be centers with other practice patterns that
had not been recruited. For ease of completion, the design of
the questionnaire had not solicited reasons for individual drug
choices nor enclosed detailed clinical notes. Hence, as al-
luded to earlier, it is not possible to conclude with certainty
the underlying reasons for variations in practice between
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practitioners. Lastly, it is not possible to ascertain the most
preferred novel ways to treat a symptom, since routes of drug
administration were merely listed and not ranked.
Future studies should evaluate in-depth underlying reasons
for differing practice in end-of-life symptom control between
clinicians despite almost similar barriers by using another
research design. A country-specific approach may be able to
uncover nuances in policies and learning needs locally.
Conclusion
This survey to map drug availability and pharmacological
management in dying children is the first to provide an insight
into pediatric end-of-life care practices in the Asia Pacific.
There exist variations in medication availability and indi-
vidual management of symptoms within and between coun-
tries that transcend economic income status.
Author Disclosure Statement
No competing financial interests exist.
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Address correspondence to:
Lee Ai Chong, MPaeds, Grad Cert Pall Care (Flinders)
Hospis Malaysia
2 Jalan 4/96
Taman Sri Bahtera
Kuala Lumpur 56100
Malaysia
E-mail: leeailah@yahoo.com