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The challenges of modern Slovenian paediatric palliative care
Copyright (c) 2022 Slovenian Medical Journal. This work is licensed under a
Creative Commons Attribution-NonCommercial 4.0 International License.
The challenges of modern Slovenian paediatric palliative care
Izzivi sodobne slovenske pediatrične paliativne oskrbe
Anamarija Meglič
Abstract
Paediatric palliative care is specialized palliative care thatdiffers from palliative care for adults. Equating the principles of 
modern palliative care of a child with protocols of restrictions or discontinuation of treatment is a reflection of ignorance 
and is completely wrong. A multidisciplinary team for palliative care of children, consisting of the child’s treating subspe-
cialists, nurses, psychologist and, if necessary, other health professionals, including those with additional knowledge of 
palliative medicine and nursing, develops a plan for further treatment and constantly adjusts care procedures to growth 
and child development, disease progression, deterioration of the patient’s condition and the emergence of new problems. 
The content of the palliative care plan depends on the moment of the patient’s and his family’s involvement, the type of 
disease and the identified and expressed needs. In pediatrics, the need to introduce a palliative approach by health pro-
fessionals is often recognized too late or not at all. By spreading knowledge and awareness of the benefits of modern pae-
diatric palliative care for patients and their relatives, we try to make the palliative approach in sick children with advanced 
incurable diseases a part of everyday clinical practice. It is not only one of the inalienable rights of the most seriously ill 
children, but it is also a matter of working by following a code of ethics.
Izvleček
Paliativna oskrba otrok je specializirana paliativna oskrba z določenimi posebnostmi v primerjavi s paliativno oskrbo odra-
slih. Enačenje načel sodobne paliativne oskrbe otroka s protokoli opustitve in odtegnitve zdravljenja je odraz nepoučenosti 
in je povsem napačno. Multidisciplinarni tim za paliativno oskrbo otrok na terciarni ravni sestavljajo otrokovi lečeči sub-
specialisti, medicinske sestre, psiholog in po potrebi drugi zdravstveni sodelavci, med njimi tudi tisti z dodatnim znanjem 
iz paliativne medicine in zdravstvene nege. Tim oblikuje načrt nadaljnjega zdravljenja ter postopke oskrbe nenehno prila-
gaja rasti in razvoju otroka, napredovanju bolezni, slabšanju bolnikovega stanja in pojavljanju novih težav. Vsebina načrta 
paliativne oskrbe je odvisna od trenutka vključitve bolnika in njegove družine, vrste bolezni ter prepoznanih in izraženih 
potreb. V pediatriji se potreba po uvedbi paliativnega pristopa pri zdravstvenih delavcih pogosto prepozna prepozno ali 
pa se sploh ne. S širjenjem znanja in zavedanja koristi sodobne pediatrične paliativne oskrbe za bolnike in njihove svojce 
poskušamo doseči, da postane paliativni pristop pri bolnih otrocih z neozdravljivo napredujočo boleznijo del vsakodnevne 
Pediatric Palliative care Team, University Children’s Hospital, University Medical Center Ljubljana, Ljubljana, Slovenia
Correspondence / Korespondenca: Anamarija Meglič, e: anamarija.meglic@mf.uni-lj.si
Key words: palliative care; a life limiting condition; suffering; child
Ključne besede: paliativna oskrba; življenje omejujoče stanje; trpljenje; otrok
Received / Prispelo: 3. 11. 2020 | Accepted / Sprejeto: 14. 1. 2021
Cite as / Citirajte kot: Meglič A. The challenges of modern Slovenian paediatric palliative care. Zdrav Vestn. 2022;91(7–8):285–95. DOI: 
https://doi.org/10.6016/ZdravVestn.3189
eng slo element
en article-lang
10.6016/ZdravVestn.3189 doi
3.11.2020 date-received
14.1.2021 date-accepted
Pediatrics Pediatrija discipline
Review article Pregledni znanstveni članek article-type
The challenges of modern Slovenian paediat-
ric palliative care
Izzivi sodobne slovenske pediatrične paliativne 
oskrbe article-title
The challenges of modern Slovenian paediat-
ric palliative care
Izzivi sodobne slovenske pediatrične paliativne 
oskrbe alt-title
palliative care, a life limiting condition, suffer-
ing, child
paliativna oskrba, življenje omejujoče stanje, 
trpljenje, otrok kwd-group
The authors declare that there are no conflicts 
of interest present.
Avtorji so izjavili, da ne obstajajo nobeni 
konkurenčni interesi. conflict
year volume first month last month first page last page
2022 91 7 8 285 295
name surname aff email
Anamarija Meglič 1 anamarija.meglic@mf.uni-lj.si
name surname aff
eng slo aff-id
Pediatric Palliative care Team, 
University Children's Hospital, 
University Medical Center 
Ljubljana, Ljubljana, Slovenia
Tim za paliativno oskrbo otrok, 
Pediatrična klinika, Univerzitetni 
klinični center Ljubljana, 
Ljubljana, Slovenija
1
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1 Introduction
Palliative care includes active holistic treatment of 
patients with an incurable disease and support for their 
close relatives. The term “palliative” comes from the Lat-
in word “palliare”, which means “covered with a cloak, 
to shield”. In a figurative sense, therefore, the patient is 
“provided with relief ”. According to the World Health 
Organisation (WHO), palliative care is an approach that 
improves the quality of life of patients and their fami-
lies while facing problems related to incurable disease. It 
includes prevention and alleviation of suffering through 
early detection, professional judgement and the treat-
ment of pain and other problems, both physical and so-
cial, and mental and spiritual (1,2). Palliative medicine 
and palliative care are integral parts of the palliative 
care service. Supportive care means relieving symptoms 
when treating a patient with any disease, while the term 
palliative care is used exclusively for patients with an in-
curable disease. Palliative care is a fundamental right of 
every terminally ill person, as stated in the Declaration 
of Helsinki, the Code of Medical Ethics, the Patients’ 
Rights Act, and other documents. Numerous untruths 
are spreading among the modern lay and professional 
public, which are the consequences of ignorance, and 
limit the exercising of the right of the terminally ill pa-
tient to palliative care (Table 1).
2 Historical overview of the development 
of paediatric palliative care
The development of paediatric palliative care began 
in the United States with the work of Professor Ida Mar-
tinson of the University of Minnesota School of Nurs-
ing, who, after caring for a dying patient at home, began 
providing care for dying children. Together with other 
nurses, she cared for eight dying children in the home 
environment. The first children’s hospice was founded 
in Suffolk, Virginia, in 1977 by Allan and Joan Hogge, 
the parents of a boy named Marcus, who was dying of a 
rare, progressive neurological disease. Dr. L. Joseph But-
terfield founded the first neonatal hospice program in 
1979 in Denver.
After a painful personal experience, Ann Arm-
strong-Dailey founded the Children’s Hospice Interna-
tional (CHI) in 1983 with the vision that palliative care 
klinične prakse. Ne gre le za eno neodtujljivih pravic najtežje bolnih otrok, gre tudi za delo zdravstvenih delavcev v skladu 
z etičnim kodeksom, da zdravljenje, ki je bolniku bolj v breme kot v korist, etično ni utemeljeno.
should be an integral part of paediatric treatment and 
not a separate activity in special institutions. In San 
Francisco, they started a series of annual internation-
al conferences to bring together everyone involved in 
children’s hospice and palliative care. The first palliative 
care unit in the United States was opened in 1984 at St. 
Mary’s Hospital in New York.
UK- and world-recognised professor Dr. Myra Blue-
bond-Langner published the first, but very influential 
research into The Private Worlds of Dying Children back 
in 1978. Until 2010, when she took on the position of the 
chair of The True Colours Trust, established at the Louis 
Dundas Centre for Children’s Palliative Care under the 
auspices of Great Ormond Street Hospital (GOSH) and 
the UCL (Institute of Child Health), she had published 
a number of studies and important contributions in the 
treatment of pain and other symptoms and neonatal pal-
liative care and paediatric palliative care education.
The development of paediatric palliative care in the 
UK, however, began with the support for children and 
families facing childhood cancer. The first children’s 
hospice, Helen House, was set up in Oxford in 1982 by 
Frances Dominica Ritchie, a nun and nurse, when she 
met a girl with a brain tumour who had suffered a severe 
brain injury during surgery. In 1986, Dr. Ann Goldman 
recognised the need for a hospital team of palliative care 
professionals at London’s Great Ormond Street Hospi-
tal for Children. In addition to numerous professional 
publications, she is also the co-editor of the Oxford Text-
book of Palliative Care for Children (10,11).
Organised education on paediatric palliative care 
was introduced by Dr. Charles A. Corr, who founded the 
first American-accredited course on children and dying 
in 1984. He is the co-editor of the CHiPPS E-Journal 
(Children’s Project on Palliative/Hospice Services) web 
portal, released in collaboration with the American Na-
tional Hospice and Palliative Care Organisation (11).
Prof. Susan Fowler-Kerry and Dr. Pat McGrath de-
veloped the first guidelines on paediatric palliative care 
in 1998, namely, guidelines for helping children with 
cancer. Early innovative guidelines on basic symptom 
control in paediatric palliative care were developed by 
Dr. Satbir Jassal from Rainbows Children’s Hospice in 
the UK and first published in 1999 (12). In 2000, the first 
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Table 1: Misconceptions and truths about paediatric palliative care. Adapted from the International Children’s Palliative 
Care Network, ICPCN (3).
Misconception Truth
Palliative care for adults and children is the 
same, only slightly adjusted for children.
Although there are similarities and the basic principles of palliative care for adults 
and children do not differ, palliative care for children has certain peculiarities.
Paediatric palliative care is only for children 
with cancer.
Every child with an advanced incurable disease has the right to palliative care.
Palliative care is necessary and appropriate 
only at the end of life.
Palliative care begins depending on the needs of the child and the family: 
at the time of diagnosing the disease as incurable and progressive or at 
any time during the progression of the disease. It can last for several years, 
simultaneously with the treatment of the underlying disease, and continue for 
the rest of the child’s life.
Paediatric palliative care can only be provided 
in well-equipped environments.
Palliative care can be provided in different settings and at all levels of healthcare 
(primary, secondary and tertiary). The levels are interconnected in the care of 
the child and work together.
Palliative care is a plan to discontinue 
treatment.
Palliative care is a continuation of treatment that benefits the patient. In the 
absence of unnecessary laborious investigations, referrals and procedures, 
a number of additional measures are introduced to ensure the best possible 
quality of life until death.
Working in palliative care is sad and depressing. In addition to the grief that healthcare professionals face in palliative care, there 
is also joy and satisfaction. It alleviates the suffering of the child and the family 
and improves the last period of life.
The introduction of palliative care means giving 
up hope and stopping treatment.
Not true. Treatment is not stopped, but adjusted. Despite the fact that the child 
will not recover, the child and the family are supported in finding new and 
different goals that can be achieved through additional palliative care measures.
Children must always be protected from the 
awareness that they are dying.
Children over the age of three intuitively know they are ill and dying, so they 
want to know the truth. If the truth is concealed, they are in distress. To reduce 
distress, it is beneficial to offer them the opportunity to express their thoughts 
and ask questions that need to be answered with clear but personalised answers.
Children do not want to talk about their death. Children do not talk about their death in front of their parents because they want 
to protect them from grief. That doesn’t mean they don’t want to talk about it.
American guidelines on paediatric palliative care were 
published (4). In 2006, a group of health professionals 
from Europe, Canada, Lebanon and the United States 
met in Trento, Italy, to discuss the state of paediatric 
palliative care in Europe at the time. Based on the find-
ings and conclusions of the International Meeting for 
Palliative Care in Children, Trento (IMPaCCT), the first 
European guidelines for paediatric palliative care were 
developed and published in German in 2008 (13).
In our country, the principles of paediatric pallia-
tive care in the Division of Paediatrics in Ljubljana were 
introduced in patients with cancer more than 20 years 
ago by paediatric haematologists and oncologists Prim. 
Jožica Anžič and Prim. Majda Dolničar. Prim. Dolničar 
and her colleagues expanded their knowledge of pallia-
tive care to other subspecialist fields, such as neonatol-
ogy, neurology and pulmonology. It began with pallia-
tive care being provided to a dying child with advanced 
cancer at home in the form of visits by a mobile palliative 
team consisting of a paediatrician and a nurse from the 
Department of Oncology of the Paediatric Clinic and, if 
necessary, a psychologist of the department (14). At the 
end of 2018, a multidisciplinary team was formed at the 
Paediatric Clinic in Ljubljana, which started providing 
tertiary level paediatric palliative care and began edu-
cating health professionals in paediatrics at all levels of 
healthcare.
3 Characteristics of paediatric palliative 
care
Palliative care:
1. Provides the patient with relief from physical, men-
tal, spiritual and social symptoms and problems 
caused by incurable disease. At the same time, it nei-
ther accelerates nor delays death, but offers a system 
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of support with procedures and measures that help 
the patient to live as actively as possible until death. 
It is essential that it takes into account the patient’s 
wishes. It improves the quality of life, has a beneficial 
effect on the course of the disease and can even pro-
long life.
2. Offers a support system that also helps the patient’s 
family cope with a relative’s illness and with accom-
panying grief.
3. Uses a team approach to address the needs of patients 
and their families.
4. Makes sense in the early stages of the disease while 
implementing other types of treatment intended to 
prolong life.
Regardless of when and where the patient is cared for, 
the treatment should be continuous. The palliative ap-
proach in the treatment of the patient should begin early 
after the diagnosis of an incurable disease and should 
initially intertwine with treatment aimed at slowing the 
progression of the underlying disease. As the underlying 
disease progresses, palliative care gradually prevails and 
treatment continues in the process of dying, death, and 
mourning. Providing care for a dying patient is only part 
of a holistic palliative care regime (2).
Specificities of paediatric palliative care compared to 
palliative care for adults:
1. These patients are fewer in number, but they are mo-
re complex than most adult patients.
2. The spectrum of diseases that cause the death of a 
child before adulthood is very wide, many of which 
are rare diseases.
3. Some genetic diseases can also affect more than one 
child in the family.
4. As a child develops during the course of the disea-
se, physically, emotionally and cognitively, his health 
and social needs also change, as does his understan-
ding of illness and death.
5. Child care takes place in different environments, in-
cluding school, for example. Despite the incurable di-
sease, the provision of education for an ill child is also 
his/her basic right and continues in the form adapted 
to his/her abilities.
Similar to the process of palliative care for adult pa-
tients, palliative care for children is family-oriented and 
includes siblings and grandparents, possibly friends. It 
takes place in accordance with family values, traditions, 
and culture. The period of illness until the death of a child 
can be long and can last several years. Care is appropri-
ate at any stage of the disease and may be accompanied 
by treatment of the underlying disease if it is not bur-
densome and is beneficial to the child. Although formal 
training on palliative care for children is not yet widely 
available, the staff providing palliative care must be spe-
cially trained and experienced in child care (3,4,5).
The most common medical conditions in paediatrics 
that require palliative care are divided into four groups 
(adapted from 6,7):
1. Diseases for which targeted treatment is possible but 
may fail:
• advanced or progressive cancer or cancer with poor 
prognosis;
• complex and severe congenital or acquired heart dis-
ease.
2. Chronically ongoing potentially progressive disease 
conditions that require intensive and long-term tre-
atment to maintain quality of life:
• severe epidermolysis bullosa;
• severe forms of immune deficiency;
• renal failure if dialysis and/or kidney transplant is not 
possible;
• chronic severe respiratory failure;
• spinal muscular atrophy type 1;
• cystic fibrosis;
• severe inoperable gastrointestinal malformations, 
severe gastrointestinal conditions (e.g. short bowel 
syndrome).
3. Progressive diseases for which targeted treatment is 
not possible:
• progressive metabolic disorders;
• certain chromosomal abnormalities (e.g. Trisomy 13 
or Trisomy 18);
• severe forms of osteogenesis imperfecta.
4. Non-progressive but irreversible conditions with a 
high probability of health complications:
• severe cerebral palsy and other conditions with se-
vere developmental disorders;
• conditions with severe neurological consequences 
due to infectious diseases, extensive hypoxic brain 
damage, severe brain malformations.
Case report:
At the age of 12 hours, the third child of healthy par-
ents, born on due date after a normal pregnancy, was 
transferred from the regional maternity hospital to the Di-
vision of Paediatrics due to hypotonia and pallor, where 
he was then dealt with by various subspecialists. The fol-
lowing was found: macrocytic non-haemolytic anaemia, 
lactic acidosis and low-grade proteinuria, small cysts in 
the renal cortex revealed by ultrasound, feeding problems. 
At 4 months of age, suspicion of mitochondrial disease 
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with predicted multiorgan dysfunction was confirmed in a 
provenly known but rare mutation. This was a case of an 
incurable progressive disease that the parents were made 
aware of.
By the age of five months, when the child overcame 
pneumococcal sepsis, he had already needed an eryth-
rocyte transfusion three times. Proteinuria increased, 
hypoproteinaemia and oedema occurred. In addition to 
vitamin supplements, he needed immunoglobulin replace-
ment. At the age of six months, he was given a nasogastric 
tube due to growth failure, through which he received a 
hypercaloric diet. There was a marked developmental de-
lay and the head grew insufficiently. At the age of eight 
months, tonic spasms of the upper limbs began to appear 
as infantile spasms, and several antiepileptic drugs were 
introduced. As a side effect, hyperglycaemia developed, so 
insulin was introduced. In the following months, recurrent 
urinary retention, electrolyte disorders and an increase in 
nitrogen retention, myocardial hypertrophy, and hyper-
tension occurred. A gastrostomy tube was inserted. The 
child needed a prokinetic; he often vomited. Chronic kid-
ney disease progressed to their final shut-down at the age 
of one year. 
By that time, he had been treated in hospital several 
times a month, occasionally for longer periods. The moth-
er confided her concerns about dialysis to his doctor. The 
medical team of all subspecialists weighed the burdens 
and benefits and included the child’s parents in the con-
sideration. They concluded that with the multiorgan pro-
gression of the disease the need for dialysis would not be 
limited to the transitional period until kidney transplan-
tation, and that it would not result in a mirracle a cure, 
and therefore does not benefit the child. A diuretic, electro-
lyte replacement, and frequent monitoring of laboratory 
results were prescribed instead. During the check-ups, the 
parents reported restlessness and pain. 
A palliative care plan was developed together with 
the parents and the visiting healthcare team. A number 
of drugs that were not necessary and that caused vomit-
ing were discontinued. Regular painkiller treatment was 
introduced. The parents wanted as few stressful hospital 
visits as possible, so the boy’s condition was monitored 
in the home environment regularly by phone. Parents 
learned to catheterise the bladder and all the measures for 
faecal elimination. They were acquainted with the symp-
toms of dying, measures for alleviating respiratory distress, 
convulsions and pain, and the necessary procedures after 
death. The child died peacefully after about three weeks in 
the arms of his parents and in the presence of both siblings.
Later, during one of the supportive psychological inter-
ventions for siblings, the family visited the hospital ward 
where the child was treated most often. The parents ex-
pressed their gratitude for the period of the last month, 
when all members of the family, closely connected with 
each other, spent time together with the youngest child. 
They described it as one of the most beautiful periods in 
the life of their family.
4 Treating a child with palliative needs in 
our country
4.1 Patient identification and approach
The beginning of palliative care, which takes place at 
all levels of a patient’s medical treatment, can be initiat-
ed by a healthcare professional at any level. Basic care is 
provided by the child’s personal paediatrician in cooper-
ation with the visiting nursing service at the primary lev-
el. Secondary and tertiary care with a multidisciplinary 
approach can make an important contribution to the 
holistic treatment of complex patients with multiorgan 
dysfunction. The multidisciplinary team for paediatric 
palliative care at the tertiary level consists of the sub-
specialists, nurses, psychologists and, if necessary, other 
health professionals, treating the child, including those 
with additional knowledge of palliative medicine and 
healthcare.
Palliative care is effective if it is included into the 
treatment early enough. It is beneficial that physical, 
mental, spiritual and social problems are anticipat-
ed in advance in order to prevent them and thus even 
prolong the child’s life (3,5,6). A positive answer to the 
question “Would the survival of a child for more than a 
year surprise you?” is a “call” for health professionals to 
introduce palliative care as soon as possible. End-of-life 
palliative care should be introduced at least six months 
before expected death (13). In practice, we manage to 
introduce palliative care in paediatrics as soon as the dis-
ease is diagnosed as incurable and progressive, mostly 
only in new-borns or in the event of a sudden onset of 
the disease, e.g. in severe injury in a previously healthy 
child. More often it is initiated when the physical prob-
lems are already severe or even only when the child’s 
parents start questioning the benefits of the many mea-
sures for improving the condition.
The authors Bergstraesser et al. named the list of cri-
teria that determine whether a child would benefit from 
palliative care the Paediatric Palliative Screening Scale 
(PaPaS Scale). It is useful for children older than one 
year (19). Patients in the neonatal period and up to one 
year of age are classified according to specially tailored 
criteria (20,21).
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The paediatric palliative screening scale of the au-
thors Bergstraesser et al. includes questions about the 
duration of expected survival, the expected outcome of 
treatment of the underlying disease, and the child’s clin-
ical condition. The patient falls into one of four possible 
groups (listed in the “Introduction” section). Impair-
ment of normal life activities, frequency and duration of 
necessary hospitalisations, frequency of deteriorations 
without the condition returning to its previous level, 
severity and duration of symptoms and problems, and 
mental distress of the patient and family members are 
assessed. The priorities of the patient and the family are 
also evaluated. The intention is to always try to identify, 
determine and take into account all the side effects of the 
treatment of the underlying disease from the perspective 
of the patient and the family (19).
Many authors state that even in environments with 
an otherwise developed healthcare system, the need for 
palliative care is recognised too late (15-17). There are 
many reasons for this. It is a matter of not knowing the 
basics of palliative care with the prevailing opinion that 
it is unnecessary in one way or another, equating palli-
ative care with “treatment failure” and thus avoiding its 
introduction. The term “palliative” is often interpreted as 
the fact that a child will soon die. There is often a general 
opinion that a child and family do not want palliative 
care. At the same time, the equating of the principles of 
modern paediatric palliative care with protocols of aban-
donment and withdrawal of treatment are often encoun-
tered, which is a reflection of ignorance and therefore 
completely wrong. The patient is still actively treated for 
the rest of his/her life, but only with those procedures 
that are exclusively for his/her benefit, but do not bur-
den him/her unnecessarily in accordance with the pro-
fessional recommendation by palliative medicine.
In adult patients with incurable disease, health pro-
fessionals have fewer reservations about open palliative 
measures than in paediatrics. Younger adult and young 
senior patients are more likely to need a clear prognosis 
of the outcome of the disease due to a number of social 
factors (e.g. concerns for the survival of the children). 
In paediatrics, most healthcare professionals avoid unfa-
vourable information for parents if at all possible. They 
want to instil hope in the parents for their child’s recov-
ery and therefore refuse to provide open information 
about the child’s actual condition, but at the same time 
to include them in palliative care. With an emotional at-
tachment to a chronically ill child who is being treated 
for a long time in a particular ward, the staff are reluc-
tant to admit that treatment is no longer beneficial to 
the child. Nevertheless, the patient and relatives become 
aware of the poor condition sooner or later and feel dis-
tressed. As they are not given the opportunity to ask 
questions about further deterioration, dying and death, 
they do not get any answers. The professional approach 
of aware and educated staff is therefore extremely im-
portant (15-17).
In clinical practice, it is a healthcare professional in 
the team treating the child, such as a doctor, nurse or 
psychologist, who brings up the discussion about chang-
ing the treatment in the case of terminally ill patients 
who are not treated in the intensive care unit. The plan 
of further treatment is rightly first drawn up by a profes-
sional team, then, through a conversation, presented to 
the child’s parents in an appropriate way by the attend-
ing physician. It is best if a good relationship has already 
been established between the patient, relatives and the 
doctor, if the parents trust the medical team, are kept in-
formed of the child’s condition and if the doctor knows 
the family. The doctor listens to the parents and coor-
dinates the ultimate goals of healthcare in accordance 
with the goals of the parents and the child. It is always 
necessary to reach a consensus with relatives, and not 
leave the decision to them, e.g. in intensive care in case 
of deterioration and resuscitation. If, at the first conver-
sation about the change of treatment, the medical team 
and the parents are not coordinated, the treatment that 
burdens the child as little as possible is continued, and at 
the same time the team regularly communicates with the 
parents in a proper manner about the burden and ben-
efits of all measures. The members of the medical team 
always represent a unified professional position and co-
operate with the palliative care team, whose members 
are additionally trained in this field. In paediatrics, a 
psychologist is involved in the medical team from the 
very beginning, providing psychological support to the 
child and relatives and helping them communicate with 
the medical team.
In older children with a serious illness from birth, at 
least one parent often completely adjusts their life to the 
care of the child and finds it most difficult to accept the 
gradual deterioration of the condition. In these cases, it 
usually takes more time to coordinate the plan if it also 
contains, for example, limiting invasive treatment in the 
intensive care unit in case of respiratory failure, which 
would not benefit the child. The most suitable and ef-
fective approach is to establish an appropriate, respect-
ful, non-judgmental and non-patronising attitude of the 
doctor towards the parents, the ability to listen to the 
parents and understand their distress, and to build trust 
and take enough time for numerous conversations. In 
practice, it is in these cases that we see great relief and 
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The challenges of modern Slovenian paediatric palliative care
satisfaction from parents when they realise that we are 
not stopping the treatment of their child, but are offering 
him/her individually tailored care that makes him/her 
feel better and suffer less.
In patients with a life expectancy of less than a year 
and with a number of associated diseases that are still be-
ing treated, basic measures are immediately introduced 
to alleviate the symptoms, while emerging problems are 
resolved gradually. With an expected survival of less 
than 6 months and many and varied physical, mental, 
spiritual, and social symptoms and problems brought on 
by incurable disease, palliative care is essential. There-
fore, not providing it in Slovenian regions is wrong, re-
gardless of the differences in the healthcare conditions.
4.2 Creating a plan for further treatment
After identifying the patient and their needs, further 
treatment is planned.
The goal of palliative care is to improve the quality of 
life of patients and their families. It is about adapting the 
entire medical treatment to the child’s benefits, both by 
abandoning useless burdensome medications, tests or re-
ferrals and by introducing various measures to improve 
the quality of life of the child and family while treating 
an otherwise incurable underlying disease that leads to 
earlier death than if the child was healthy. It is not just 
about humanity that some healthcare professionals dis-
play more and others less of; it is the ethical profession-
al work of the physician who decides when the burden 
of further treatment outweighs its likely usefulness and 
effectiveness, and a change in treatment should be con-
sidered (18). The burdens and benefits of treatment for 
an individual patient are assessed in accordance with the 
family’s life so far and their goals, which also define the 
quality of the child’s life. This is not called a withdraw-
al or abandonment of treatment, but an adjustment or 
change of a patient’s treatment.
Healthcare professionals from various fields are in-
volved in the development of the plan. In practice, it is 
common for those with additional knowledge of pallia-
tive care to guide a medical team consisting of the child’s 
treating subspecialists, nurses, psychologists, and other 
staff members from the primary, secondary, and tertiary 
levels. The patient will be treated in the home environ-
ment, in the regional hospital and the tertiary hospital, 
so all levels cooperate with each other, know the patient 
and work according to a single plan.
First, the patient’s health, physical and mental devel-
opment, and understanding of the disease are assessed. 
In paediatrics, these children mostly suffer from with 
multiorgan dysfunction, a developmental disorder, pos-
sible visual and hearing impairment, and often an eating 
disorder. It is necessary to anticipate the development of 
the disease, possible expected and unexpected compli-
cations and deteriorations, and the most likely period 
of survival. The child’s parents are the ones who know 
the child best and present to us their vision of the sit-
uation, fear of deterioration and distress regarding the 
future. It often happens that with an open conversation 
we open up areas that they could not or did not dare 
talk about until that moment. What they want most for 
their child and what they would like to protect him from 
becomes clearer. Their greatest distress is often caused 
by problems in treatment, which are easy to solve, e.g. 
condensed treatment, discontinuation of many drugs 
that do not benefit him/her, adjustment of the time of 
unpleasant interventions, and the like. All parents want 
their child not to suffer and not to be in pain. When their 
perception of their child’s suffering is subjective and our 
judgement is different, we try to respectfully understand 
them, relieve them of the burden and focus their atten-
tion on areas that are undoubtedly the most important 
for the child.
Criteria for quality of life vary greatly with age: it 
is important for the new-born and the infant not to be 
hungry or in pain, to be warm in the safe shelter of his/
her parents; for a small child, an additional opportunity 
to play and be in the company of peers is important, as 
well as, still, the presence of parents; adolescents need 
to socialise with peers and talk about the hardships they 
experience. We cannot cure a child, but we can achieve 
various goals that make the family happy and are im-
portant to them.
To facilitate the development of the plan, the areas 
are divided into prevention and resolution of physical 
problems (physical symptoms), addressing mental dis-
tress and social problems, while taking into account the 
spiritual orientation of the family.
4.2.1 Treatment of physical symptoms
Physical symptoms treated in palliative care include 
pain, nausea and vomiting, feeding disorders, digestive 
problems with constipation or diarrhoea, dyspnoea, ep-
ileptic seizures, and other symptoms associated with a 
specific medical condition (e.g. recurrent lower respira-
tory tract infections due to recurrent aspirations with sa-
liva and mucus entering the respiratory tract). Knowing 
the clinical picture of the disease, we predict the most 
likely deteriorations. By introducing certain measures, 
these can be prevented and life can be prolonged (e.g. 
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the introduction of intensive chest physiotherapy, ex-
pectorants, saliva and mucus removal, medicines to 
reduce drooling). The already planned invasive inter-
ventions are considered from all aspects and the burden 
and benefits are assessed, e.g. scoliosis surgery. The types 
of treatments that do not improve the child’s condition 
are considered, e.g. frequent hearing or vision tests. If 
frequent neurophysiotherapy sessions are stressful, they 
can be limited and adjusted. We never discontinue care 
as long as it keeps parents hopeful of improvement. With 
further cooperation, most parents see for themselves 
when certain procedures are not useful and they them-
selves suggest phasing out, e.g. frequent blood draws for 
laboratory tests.
As the disease progresses, the physical symptoms 
change, so the plan is adjusted. With a good knowledge 
of the patient’s health condition and professional knowl-
edge of doctors and the nursing staff, the final period of 
life is recognised. Some parents of young children want 
their child to die at home, others, fearing that they will 
not be able to provide optimal care for their child, want 
to stay in hospital. We discuss how the child’s respiratory 
distress, restlessness, nausea, and pain will be alleviat-
ed. For older children and adolescents, we listen to the 
child’s wishes and support the family to be able to pro-
vide adequate care at home. The mobile palliative team 
conducts a home visit to administer a subcutaneous in-
fusion of painkiller mixture, change the urinary catheter 
or feeding tube, and is constantly available by phone.
In cases where a chronically ill child is dying in hos-
pital, the space is adjusted and the staff are informed. 
The family is provided with the possibility of staying to-
gether or relatives visiting, such as grandparents; devices 
that emit alarm sounds are turned off, only people they 
know enter the room, etc. Palliative care team members 
also provide support to the staff members.
4.2.2 Psychological care
In practice, it is best if the emotional distress of an 
ill child and the family members is addressed by a psy-
chologist who is involved in the team and trained in pal-
liative care. However, certain concerns of a child can be 
well recognised by other team members and the paedi-
atrician or nurse with many years of experience in pae-
diatrics, especially if they take enough time to directly 
connect with the patient, parents and siblings. It is im-
portant for them to be aware that psychological care is 
not only to comfort the parents, and that its content is 
much broader in the treatment and conversation with 
the child at different stages of development, which, for 
the most part, only a psychologist is skilled at. The psy-
chologist involved in the team also advises less experi-
enced colleagues on how to communicate with the child 
and parents. Together, they plan psychotherapeutic steps 
to alleviate physical symptoms. The distress of siblings 
is often not recognised and is ignored, although they 
are also significantly involved in caring for the ill child, 
they communicate with him/her every day and are sig-
nificantly disadvantaged in their leisure activities due to 
lack of parental time as a result of their parents’ devotion 
to the ill child. Therefore, we always include them in our 
care.
4.2.3 Social care
Severely ill children have the right to education, so-
cialising with peers and the activities they would engage 
in if they were healthy. Home schooling, occasional vis-
its to the school library and meetings with classmates or 
just a visit from a teacher at home are easy to arrange, as 
school staff are usually very open to this. Encouraging 
parents to take their children to various leisure activi-
ties despite the illness and obstacles (e.g. subcutaneous 
infusion pump for pain control, recommendations to 
avoid infection, etc.) can make an important contribu-
tion to improving the well-being of the child and par-
ents. Parents of children with advanced disease mostly 
opt to continuously stay together and care for the child 
during treatment in hospital and at home. Therefore, the 
financial support of the family must also be taken care of 
in the event of the loss of the regular income of at least 
one of the parents, and they should be informed in time 
about their possibilities and social rights and helped 
during the execution of the necessary procedures.
4.2.4 Spiritual care
Perception of illness, challenges regarding health 
and, above all, death, vary from religion to religion. The 
palliative care team therefore plans activities in accor-
dance with the religious beliefs of the patient and his/her 
relatives and regardless of the team members’ own be-
liefs (6,13). Everyone needs spiritual support, even those 
who identify themselves as non-believers. We adapt to 
the family in the way we talk about death, which we have 
to inform them of, talk openly about, and, of course, un-
derstand their views, although they may be completely 
different from ours. A visit from a priest can be wel-
comed earlier and not just before death if that is what 
the family wishes.
The multidisciplinary team, which develops a plan 
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Table 2: Contents of a paediatric palliative care plan. Adapted from 6,13,24-31.
Levels of care Measures
Treatment 
of physical 
symptoms
Identifying pain and other symptoms:
• planning medications and drug doses, non-pharmacological treatment;
• discontinuing medication that does not work.
Anticipating deterioration and measures, medications:
• preparation of medication intended for emergencies at home.
Providing measures to prevent deterioration:
• giving a subcutaneous infusion with an analgesic mixture.
Psychological 
support
Recognising the fears and worries of the child, parents, siblings:
• having an open and honest conversation with the child and family members; 
• ensuring that the family in distress is not abandoned; agreement on how to communicate in case of distress.
Identifying the child’s way of expressing distress and coping with it:
• adapting the plan to the child’s perception of and coping with distress;
• communicating with the child in an age and developmentally appropriate manner;
• explaining death to the child in an appropriate way, but clearly and openly.
Talking about difficult life experiences, disappointments, sorrows they’ve had so far:
• adjusting the plan on the basis of information on past experiences;
• providing the child with psychotherapeutic or psychiatric treatment.
Dealing with mourning:
• developing a plan for monitoring the family after the child’s death;
• assuring the parents that they will not feel abandoned after the death of the child.
Social care Identifying the child’s social needs:
• making arrangements with the school, enabling participation in leisure activities that the child can handle, 
socialising with friends.
Identify the social needs of parents and siblings:
• informing the family of the possibilities and rights related to sick leave, financial care;
• enabling the perhaps overlooked needs of siblings for various activities, socialising;
• connecting the family with volunteers if useful and appropriate.
Spiritual care Getting to know the religion of the family:
• talking to the child and family about death in a way that is appropriate for their religion;
• allowing visits by the priest if this is what the family wishes;
• respecting the differences between the attitudes of the family and the team members.
Important in 
developing a 
follow-up plan
Designating care decision-makers, main planners:
• including the necessary staff in the team;
• transferring agreements to the entire team;
• providing necessary and comprehensible information on the course of the disease.
Talking about the course of the disease:
• talking about useful healthcare, agreement with parents;
• identifying the impact of the disease on a child’s quality of life;
• predicting the outcome of the disease and the time of death if possible.
Defining goals of care:
• determining measures for treatment, to prevent deterioration, to ensure the comfort of the child;
• acquainting team members with goals and measures, determining their roles.
Identifying end-of-life needs:
• developing a plan according to the anticipated state of health (including the omission of resuscitation, if 
necessary);
• identifying significant changes in the child’s condition just before death, informing parents in an appropriate 
way, taking action;
• identifying parents’ wishes regarding the place of death (at home, in hospital);
• providing parents with appropriate contact with team members in the event of distress upon the child’s death;
• informing the appropriate family member with the procedures after the child’s death..
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5 Conclusion
Palliative care for children with incurable and pro-
gressive disease is provided by paediatricians, paediat-
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psychologists, at all levels of healthcare. In Slovenia, a 
broader general identification of needs and additional 
knowledge in this field is needed. Regardless of the gen-
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the lack of understanding of those who we believe are 
obliged to regulate working conditions, it is right that 
palliative care in our environment becomes an integral 
part of care for all seriously ill children with advanced 
incurable diseases.
Conflict of interest
None declared.
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