34
Članek prispel / Received
13. 8. 2020
Članek sprejet / Accepted
19. 3. 2021
Abstract
Purpose: In Slovenia, palliative me-
dicine and care are developing more 
intensively in the last years. Appraisal 
of the existing evidence on, expectations 
in, and awareness about palliative care 
(PC) in Slovenia is essential to inform 
the emerging practice and future rese-
arch. 
Methods: A cross–sectional survey of 
2000 individuals aged over 18 years 
old was performed. Information was col-
lected using a structured questionnaire 
consisting of 18 items. Analysis of the 
questions is presented using descriptive 
statistics. The significance level was set 
at p ≤0.05 in all analyses.
Results: 58.6% of participants report 
having little awareness of PC, with most 
information received via media (radio, 
TV, internet) and experience obtained 
directly or through family and friends. In 
Izvleček
Namen: Paliativna oskrba in palia-
tivna medicina se v Sloveniji  v zadnjih 
letih intenzivneje  razvijata.  Podatki 
o osveščenosti prebivalcev in njihovih 
pričakovanjih glede paliativne oskrbe 
(PO), so pomembne informacije za na-
daljnji razvoj in raziskovanje na podro-
čju paliativne oskrbe.
Metode: Izvedena je bila presečna 
raziskava, v katero smo povabili 2000 
posameznikov, starejših od 18 let. Infor-
macije so bile zbrane z uporabo struk-
turiranega vprašalnika, sestavljenega iz 
18 vprašanj. Za analizo smo  uporabili 
opisno statistiko. Stopnja statistične 
značilnosti je bila določena s p≤0.05.
Rezultati: 58,6% udeležencev razi-
skave je menilo, da so slabo osveščeni o 
PO. Večino informacij so dobili s preko 
medijev (radio, televizija, internet) in 
neposredno iz izkušenj v družini in prija-
Ključne besede: 
paliativna oskrba, osveščenost 
javnosti, pričakovanja
Key words: 
palliative care, public awareness, 
expectations
Osveščenost in pričakovanja obiskovalcev 
ambulant družinske medicine o paliativni 
oskrbi v Sloveniji 
Awareness and expectations of visitors to family 
medicine practices about palliative care in Slovenia
Avtor / Author Erika Zelko1,2, Dorotea Gašpar1, Estera Gjuras1, Nevenka Krčevski 
Škvarč1,3
Ustanova / Institute 1Univerza v Mariboru, Medicinska fakulteta, Katedra za družinsko medicino, Maribor, 
Slovenija; 1Zdravstveni dom Ljubljana,  Slovenija; 3Univerza V Mariboru, Medicinska fakulteta, 
Inštitut za paliativno medicino in oskrbo, Maribor, Slovenija;
1University of Maribor, Faculty of Medicine, Department of Family Medicine, Maribor, 
Slovenia, 2Public Health Centre Ljubljana, Ljubljana, Slovenia, 3University of Maribor, Faculty 
of Medicine, Institute for palliative medicine and care, Maribor, Slovenia;
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INTRODUCTION
Palliative care uses a holistic approach for improving 
the quality of life of patients and their families who face 
problems associated with life–limiting illnesses. It helps 
prevent and relieve suffering (1). In 2019, the European 
Forum for Primary Care (EFPC) published a position 
paper about palliative care in primary care. Among 
other important conclusions, it highlighted that 
educating the public and organising public advocacy 
campaigns for palliative care are important factors for 
improving the provision of palliative care (2). Awareness 
of palliative care is important for overcoming the taboo 
associated with death and dying in the society. A 
previous study reported the lowest level of awareness 
in the United States, where 70.2% of the participants 
had not heard of palliative care (3). In Sweden, 43% 
of the participants reported having some awareness, 
while in Italy, 59.4% of the survey participants reported 
having heard of palliative care (4–5). Similar results 
are reported from a Canadian survey (6). The greatest 
awareness of palliative care was reported in Northern 
Ireland (7), where 83% of the participants had heard 
of palliative care. 
Until 2003, palliative care was not developed in the 
Slovenian healthcare system (8). However, it has been 
developing more intensively in recent years (9–10). 
In the next 10 years, the population of Slovenia is 
predicted to be two million, with the highest percentage 
of increase occurring in individuals aged ≥65 years (11). 
In total, 20,485 people died in Slovenia in 2018; of 
these, 17.2% (3,527) died in nursing homes, 51.61% 
(10,573) died in medical institutions, 24.77% (5,076) 
died at home and 6.4% (1,309) died elsewhere. Thus, 
the present annual mortality rate of ~1.09% of the 
population is also expected to increase (12). The 
teljskem krogu. Bolje osveščene o PO  so 
bile  ženske, udeleženci z višjo izobrazbo 
in višjo starostjo. 69,6% udeležencev 
naše raziskave bi rado umrlo doma. Bol-
nik v domačem okolju potrebuje dober 
nadzor telesnih simptomov (93,8%), 
zdravstveno nego in oskrbo (65,9%) ter 
podporo s strani prostovoljnih negoval-
cev (41,4%). Izpostavili so tudi potre-
bo po telefonski konzultaciji svojcev in 
bolnikov v primeru zapletov (55,4%). 
Obrazec vnaprej izražene volje pozna 
28,4% udeležencev raziskave.
Zaklju~ek: Predstavljeni podatki raz-
iskave zagotavljajo empirično podlago, 
ki lahko predstavlja izhodišče razprave o 
smrti, umiranju in vnaprejšnjem načrto-
vanju oskrbe v družbi. Soočanje z vpra-
šanji ob koncu življenja je nenazadnje 
neizogibno za vse nas. Vsi pacienti ima-
jo pravico do človeškega dostojanstva in 
miru v zadnjem življenjskem obdobju.
this sample, increasing age, being female 
and higher levels of education were rela-
ted to higher reported levels of awareness 
of PC. 69.6% of our participants said 
they wish to die at home. According to 
our participants, patients at home need, 
their physical symptoms be well control-
led (93.8%), followed by medical and 
health care (65.9%), and support from 
voluntary carers (41.4%) and they also 
highlighted the wish of relatives and pa-
tients to be consulted via telephone by a 
health care providers in case of problems 
(55.4%). 28.4% confirmed they know 
the advance healthcare directive form.
Conclusion: The survey data presented 
here provides an empirical basis from whi-
ch we can begin stimulating discussions 
about death, dying and support empowe-
red decision–making, as confronting end 
of life issues is inevitable for us all. All pa-
tients have the right to dignity and peace 
through their last stages of life.
Naslov za dopisovanje /  
Correspondence
doc. dr. Erika Zelko, dr. med.
Medvedova 10, 1000 Ljubljana, 
Slovenia
Telefon +386 31510496
E–pošta: erika.zelko@um.si;  
erikazelko@gmail.com
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aging society will need some long–term end–of–life 
(EoL) care (13). Meeting patients’ EoL preferences 
forms an important part of EoL  care  (14). However, 
for this purpose, it is important to know the needs 
and preferences of the overall population and of each 
individual. Surveys conducted over the last decade 
have suggested that the general population has a lack of 
knowledge of palliative care and a negative perception 
towards it (4,7,14,15). A review of the existing evidence 
on  palliative care  needs, palliative care preferences 
and awareness of palliative care in Slovenia is essential 
to guide emerging practice and future research. The 
present study aimed to assess the public awareness of 
and expectations about palliative care in Slovenia.
METHODS 
Type of study and settings
In the present study, a cross–sectional survey was 
conducted to assess the public awareness of palliative 
care in Slovenia. The survey was conducted after 
receiving approval from the relevant research ethics 
committee on 10.7.2019 (No.: 10 UKC–MB–KME–
67/19). 
Participants
We aimed to obtain 2,000 responses (representing 
approximately 1% of the population) from individuals 
aged between 18 and 80 years in Slovenia.
Translation and pilot testing
For the first family medicine–based survey on palliative 
care awareness and expectations in Slovenia, we used a 
Swedish questionnaire (4). Before that, the questionnaire 
was translated, validated and adapted to our needs. We 
were in contact with the Swedish research team during 
the translation process, as we aimed for a valid survey 
that not only allowed for international comparison 
but also was culturally and linguistically relevant in 
Slovenia. The initial translation was performed by a 
native Swedish speaker who was fluent in Slovenian. 
Then, this translation was commented on and further 
adapted by a native Slovenian speaker who was fluent 
in Swedish. Translating an existing instrument into 
a second language requires more interpretation and 
adaptation than a naive translation (16). Therefore, 
after receiving initial comments from our national 
collaborators, we used a convenience sample and 
conducted a think–aloud session in order to revise the 
items that were unclear, in line with the approach used 
by Klarare et al. (16). Following this, we sent the online 
survey to 20 people; their responses were controlled to 
ascertain the functioning of the survey with reasonable 
variance.
Data collection
The randomized sample of participants was taken among 
coincidentally chosen patients from 40 family medicine 
practices. We included practices that cooperated with 
the medical faculty in the pedagogical process. The 
potential participants received the invitation via an e–
letter, which contained a link to the online survey or 
to a paper version of the survey to be administered at 
the practice. All participants willing participate in the 
survey were included in the study until a predetermined 
number of responses per practice was obtained. 
The first page of the survey contained information 
about the survey (a short description of the project 
aims and the voluntary nature of participation) and 
an option to continue or decline participation. The 
survey contained two sections and was estimated to 
take 10 min to complete. Section 1 consisted of 14 
multiple–choice questions that aimed to gather specific 
information about the respondent’s awareness of and 
expectations about palliative care. Section 2 contained 
four demographical questions. 
Data analysis
The analysis of the responses is presented using 
descriptive statistics. Differences in the responses 
based on gender, age and education were assessed 
using chi–square tests. Differences in age distribution 
were assessed using the Mann–Whitney U–test. The 
significance level was set at ≤0.05 in all analyses.
RESULTS 
We distributed 2,000 surveys in total. A total of 
1,168 people responded to the surveys. Of these, 153 
responses were incomplete and were therefore excluded 
from further analysis. Thus, 1,015 respondents aged 
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between 18 and 80 years were included in the analyses. 
The response rate was 65% and the mean age of the 
respondents was 44.6 (± 12.8) years. The 153 excluded 
responses were from the online survey; the respondents 
finished only the first page of the survey. Analysis of 49 
(32%) non–respondents revealed that younger people 
were less likely to complete the survey than older 
people. Moreover, there was a significant difference in 
the non–response rate between men and women. 
Awareness of palliative care
Only 34 (4%) men were willing to participate in the 
survey. The paper version of the survey was more 
frequently used by the elderly generation. Table 
1 provides the most important findings regarding 
awareness of palliative care. In total, 43.1% of the 
respondents obtained information about palliative care 
via the TV, radio or newspaper. The internet and social 
Table 1. Demographic background of respondents, in relation to self-assessed awareness of palliative care.
Awareness about palliative care p*
Never heard I heard something I know something or I know a lot
Gender p<0.001
Woman 112 (16.8) 385 (57.9) 168 (25.3)
Man 95 (27.3) 209 (60.1) 44 (12.6)
Age p<0.001
18-29 78 (32.9) 108 (45.6) 51 (21.5)
30-49 73 (19.9) 219 (59.8) 74 (20.2)
50-59 23 (10.4) 142 (64.3) 56 (25.3)
60 or more 33 (17.5) 125 (66.1) 31 (16.4)
Education p<0.001
Primary school and less 17 (34.7) 31 (63.3) 1 (2.0)
Secondary school 97 (23.8) 230 (56.4) 81 (19.9)
University 83 (17.6) 287 (60.8) 102 (21.6)
Postgraduate qualification (PhD, MSc) 10 (11.9) 46 (54.8) 28 (33.3)
* chi-square test
media (35.6%) were the second most important sources 
of information, followed by friends and relatives 
(21.0%). The respondents’ knowledge of the aim of 
palliative care was assessed by asking them to choose a 
relevant response from a list of six items (Table 2).
Needs of patients and relatives
Based on the needs of patients and relatives, we noted 
some differences in the responses (Table 3). A slightly 
higher number of men recognised hospice housing as 
important support centres for providing palliative care 
to their relatives. Women expected more bereavement 
support than men. When asked to choose a preferred 
site for receiving palliative care, most respondents, 
regardless of their age and gender, chose their own 
home as the preferred site. Respondents with lower 
reported levels of education more commonly chose the 
hospital as their preferred site for receiving palliative care 
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Table 2. Aim of palliative care according to gender, age and education of the study participants.
Aims of palliative care p*
Accelerates 
dying and 
death
Postpone 
death
It allows the 
patient to 
continue an 
active life
Soothes the 
patient
Improve the 
quality of life I do not know
Gender p<0.001
Woman 6 (0.6) 16 (2.4) 39 (5.9) 133 (20.0) 388 (58.3) 83 (12.5)
Man 3 (0.9) 10 (2.9) 31 (8.9) 85(24.4) 165 (47.4) 54 (15.5)
Age p<0.001
18-29 4 (1.7) 6 (2.5) 14 (5.9) 45 (19.0) 123(51.9) 45 (19.0)
30-49 1 (0.3) 9 (2.5) 27 (7.4) 45 (19.0) 210 (57.4) 45 (12.3)
50-59 0 (0.0) 8 (3.6) 15 (6.8) 45 (19.0) 129 (58.4) 20 (9.0)
60 or more 4 (2.1) 3 (1.6) 14 (7.4) 50 (26.5) 91 (48.1) 27 (14.3)
Education p<0.001
Primary school and less 2 (4.1) 4 (8.2) 5 (10.2) 14 (28.6) 10 (20.4) 14 (28.6)
Secondary school 7 (1.7) 14 (3.4) 34 (8.3) 86 (21.1) 194 (47.5) 73 (17.9)
University 0 (0.0) 7 (1.5) 3 (3.6) 86 (21.1) 292 (61.9) 46 (9.7)
Postgraduate 
qualification (PhD, MSc) 0 (0.0) 1 (1.2) 3 (3.6) 19 (22.6) 57 (67.9) 4 (4.8)
(28.6%), while those with postgraduate education more 
commonly choose hospice housing (31%) (p<0.001). 
Both these findings were statistically significant. 
In total, 65% of the respondents mentioned that 
cancer patients should receive palliative care, 48.6% 
mentioned stroke patients, 48% mentioned dementia 
patients, 46.6% mentioned multiple sclerosis patients, 
45.2% mentioned amyotrophic lateral sclerosis (ALS) 
patients and 45% mentioned heart failure patients. 
Only 26.6% of the respondents mentioned patients 
with (human immunodeficiency virus) HIV infection. 
Preferences regarding palliative care and place of EoL 
care
The respondents’ views on what optimal palliative care 
should include are represented in Table 4.
Younger people (p<0.001) and women (p<0.001) 
expected more information about financial issues. 
Moreover, younger age (p<0.001), female gender 
(p=0.002) and higher reported levels of education 
(p<0.001) were found to be significantly correlated 
with a higher expectation of help related to mental 
health issues. In addition, women more commonly 
asked for care at night (p=0.002) and younger people 
more commonly expected hospital care (p=0.002). 
Respondents with higher reported levels of education 
expected the provision of more frequent care throughout 
the day (p=0.003), the availability of someone on the 
phone to answer their and their relatives’ questions 
in the case of any issue (p=0.003) and the provision of 
hospice care (p<0.001).
More than 60% of the participants from all age 
groups thought that the topic of death and dying is 
not discussed enough within the society. In particular, 
women (p<0.001) and respondents with higher 
reported levels of education (p<0.001) wanted to speak 
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Table 3. What do you think the most important needs of the patients and relatives according to palliative care are?
Needs of the patients
(ranking 1-3 of importance) n=1013 (%)
Needs of the relatives
(ranking 1-3 of importance) N=1013 (%)
Relieve physical suffering 950 (93.8) Home care 762 (75.3)
Medical and nursing home care 667 (65.9) Psychologist support 621 (61.3)
Support of the informal caregivers 419 (41.4) Accessibility of volunteer carers 483 (47.6)
Spiritual care 401 (39.6) Hospice housing centres 430 (42.5)
Specialist medical care 335 (35.0) 24-hours specialist medical care 394 (38.9)
Psychologist support 227 (22.4) Support for relatives during bereavement 324 (32.0)
Table 4. What should be offered to patients and their families included in palliative care?
Needs of the patients
(ranking 1-3 of importance) N=1013 (%)
Relief of physical symptoms at home 779 (76.9)
Patient care at home during the day 561 (55.4)
Someone to help to relieves mental distress (e.g., helplessness, anxiety, fear, depression ...) 476 (47.0)
Someone who could be reached over phone for advice to patients and relatives 432 (42.6)
Care for caregivers
Medical care at Hospice 363 (35.8)
Patient care at home during the night 355 (35.0)
Medical care at hospital
In-home support (cleaning, shopping, driving…) 305 (30.1)
Someone who relieves spiritual distress (e.g. spirituality, spiritual help, religiosity) 255 (25.2)
Information and counselling about financial assistance 254 (25.1)
Alternative therapy like aromatherapy, reflexology… 253 (25.0)
more about dying (p<0.001). Moreover, 71% of the 
respondents thought that information about palliative 
care should be readily available in the society. 
Table 5 presents data about the preferred place of care 
in the last days of life.
Women (32.3%) (p<0.001) and respondents with higher 
reported levels of education (p=0.005) had significantly 
greater awareness of advance care directives. 
DISCUSSION 
This is the first family medicine–based survey of family 
practice visitors aged between 18 and 80 years in 
Slovenia. We found that 58.6% of the respondents had 
little awareness of palliative care, with most information 
being received via media (the radio, TV and/or internet) 
and experience being obtained directly or through family 
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Table 5. Preferred place of last days of life and dying
End-of-life care and dying p*
 Home Hospital Nursing home I don’t know
Gender P=0.001
Woman 475 (71.4) 37 (5.6) 23 (3.5) 130 (19.5)
Man 230 (66.1) 39 (11.2) 12 (3.4) 67 (19.3)
Age p<0.001
18-29 195 (82.3) 4 (1.7) 4 (1.7) 34 (14.3)
30-49 261 (71.3) 16 (4.4) 6 (1.6) 83 (22.7)
50-59 140 (63.3) 23 (10.4) 9 (4.1) 49 (22.2)
60 or more 109 (57.7) 33 (17.5) 16 (8.5) 31 (16.4)
Education p<0.005
Primary school and less 29 (59.2) 10 (20.4) 1 (2.0) 9 (18.4)
Secondary school 305 (74.8) 28 (6.9) 11 (2.7) 64 (15.7)
University 315 (66.7) 35 (7.4) 19 (4.0) 103 (21.8)
Postgraduate qualification (PhD, MSc) 56 (66.7) 3 (3.6) 3 (3.6) 21 (25)
and friends. In the present sample, increasing age, female 
gender and higher reported levels of education were 
related to an increased awareness of palliative care. In 
the case of relatives, the greatest cause of stress was the 
organisation of home care (75.3%). Moreover, 28.4% of 
the respondents confirmed that they knew of advance 
care directives.
Awareness of palliative care
Similar surveys have been conducted in different countries 
(3–7,17). Slovenian respondents reported receiving 
information about palliative care mainly through the 
media and internet. Communication and planning 
could help prevent some distress associated with death 
and bereavement (18). We were interested not only in 
palliative care awareness but also in the participants’ 
views on the factors associated with palliative care. In 
total, 54.6% of the respondents associated palliative care 
with the concept of improvement in a patient’s quality 
of life; some international studies also support this 
(7,17,19–20). 
Needs associated with palliative care
There has been an ongoing debate in Slovenia about 
the adoption of an act regulating long–term care and 
home care, which also reflected in the responses of our 
respondents. For relatives, the greatest cause of stress 
was the organisation of home care (75.3%). In addition 
to the aforementioned needs, which correspond to the 
expectations addressed in palliative care, our respondents 
highlighted the wish of relatives and patients to be 
consulted via phone calls by a healthcare provider in 
the case of any issue (55.4%). Researchers from other 
countries have arrived at similar conclusions (3–7,21–
26). Furthermore, 30.1% of our respondents expressed 
a great need for assistance in resolving social concerns, 
e.g. in regulating their situation at home, their finances 
(25.1%) and their future. The respondents responded 
that palliative care should primarily be provided to 
cancer patients (65%) and patients suffering from other 
chronic diseases (less than 50%). Similar results have also 
been reported in previous studies (27–29,30–31). 
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Preferences regarding palliative care
The knowledge of peoples preferred place of death is an 
important indicator of where pressures in the healthcare 
system may arise in future years (32). 
In total, 69.6% of our participants responded that they 
wished to die at home; this corresponds to the findings of 
most international studies (3–5,7,17,20–21,33–34). The 
gap between wishes and reality is evident in some other 
studies (20,33–35). Martinez found that the cause of 
death had a stronger association with the place of death 
than with sociodemographic variables (36). Moreover, 
Gomes found that patients dying at home were calmer 
and their relatives’ mourning process was less intensive 
(35). Only 15% of deaths occurred at home in Japan 
in 2015, and more men wished to die at home (37). In 
our study population, significantly higher numbers of 
men (p=0.001), participants with low reported levels of 
education (p<0.005) and participants older than 60 years 
(p<0.001) wished to die in a hospital. Further research 
is necessary to determine the factors that have a major 
impact on this decision.
The Slovenian Patients’ Rights Act 2008 includes the 
right to respect advance care directives (38). Only 28.4% 
of the participants confirmed that they know of advance 
care directives; women (p<0.001) and participants with 
higher reported levels of education (p=0.005) were more 
aware of it. In 2018, Vilper at al. conducted a study in 
Switzerland to investigate the awareness and use of 
advance care directives; they found that 78.7% of adults 
aged 55 years and older had heard of it prior to the 
survey, while 24% reported having completed one (39). 
In the present survey, we were unable to confirm the 
hypothesis that older people are more aware of advance 
care directives. 
Strengths and limitations
We would like to highlight that our survey was the first 
in Slovenia to involve 1,013 respondents. In addition 
to the online survey, paper versions of the survey were 
prepared, which were preferred by the elderly.  
The limitations of our study include the choice of 
methodology. We chose family medicine practices to 
recruit participants in the summer, when it was more 
difficult to include participants from some places 
than others; this also reflected in the lower number of 
male participants. We also identified the need to add 
open–ended questions to our survey, which would give 
respondents the chance to answer in their own words, 
as was done in similar surveys conducted in other 
countries (4,6–7). The survey may be biased because it 
was administered via the internet, where the participants 
could find answers and help during the answering 
process. 
CONCLUSION
The results of our survey showed that we have to improve 
the awareness and education on palliative care to widely 
implement palliative care in Slovenian population. 
Although the present findings cannot be generalised 
to the entire Slovenian population, we are confident 
that our results will assist in planning activities in the 
community. We hope that our findings form a solid 
basis for future discussions about death, palliative care 
and mourning.
ACKNOWLEDGMENT
We are grateful to all the respondents of this first 
Slovenian family medicine–based survey on palliative 
care for their time.
CONFLICTS OF INTEREST
The authors declare that no conflicts of interest exist.
FUNDING
No funding has been received for the conduct of this 
study and/or preparation of this manuscript.
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