Palliative Care and Legal Aspects of Treatment Limitation Decisions in ICU: A Survey of Clinicians' Perceptions
Conditions: End of Life
Sponsor: University of Athens

OFFICIAL STUDY TITLE: PALLIATIVE CARE AND LEGAL 
ASPECTS OF TREATMENT LIMITATION DECISIONS IN ICU: A 
SURVEY OF CLINICIANS’ PERCEPTIONS   
 
 
PROTOCOL SUBMITTED FOR IRB APPROVAL: Scientific 
Council, Ethics and Deontology Committee of Evaggelismos 
General Hospital, Athens, Greece; Protocol Submission Date: 
December 15, 2023; Protocol Approval Date: December 19, 
2023 (14th Regular Session of the Committee); Protocol 
ID/Approval No.: 606-20/12/23. 
 
 

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SURVEY ON PALLIATIVE CARE AND LAW PERCEPTION 
 
Investigators: Spyros D. Mentzelopoulos, MD, PhD, DEAA, EDIC (Professor of 
Intensive Care Medicine, NKUA) [Principal Investigator], Victoria Metaxa, MD, PhD 
(Consultant in Intensive Care Medicine, King’s College NHS trust, London) 
[Principal Investigator], Hanne Irene Jensen, PhD, CCN (Professor, Lillebaelt 
hospital, University of Southern Denmark), Christiane Hartog, MD, PhD (Professor 
of Intensive Care Medicine, CHARITE University Berlin) [Project Coordinator].   
 
INTRODUCTION 
 
In countries with patient/family autonomy-oriented end-of-life (EOL) legislation (1-
8), published data indicate variation of healthcare professionals’ awareness of the 
specific legal provisions and/or regulations enabling limitation of life-sustaining 
treatments (4, 5, 8). Furthermore, communication difficulties and/or uncertainties 
about the validity of previously recorded patient preferences (e.g. in the form of 
advance directives) may result in heterogenous application of pertinent EOL 
laws/regulations (9-12). This may include cases of poor compliance with, or even 
opposition to new laws (10, 12).      
 
The absence of accurate and in-depth EOL legal knowledge of clinicians (4) may 
be associated with perceptions that applicable laws/regulations are either too 
restrictive (10) or excessively ″liberal″ for the patient (12). Furthermore, critical care 
physicians and/or nurses may lack specific knowledge about palliative care (13, 
14). Accordingly, physicians/nurses may also not be aware of the palliative nature 
of their everyday practice or have a clear understanding of primary and specialist 
palliative care. 
 
Given the above-mentioned knowledge gaps of healthcare professionals caring for 
critically ill patients, we propose to conduct a Europewide, descriptive survey for 
intensive care unit (ICU) clinicians, primarily aimed at addressing the following 
questions: 1) “How much of ICU everyday practice is palliative care and how is it 
practiced?”; and 2) ″How do clinicians perceive the medico-legal framework 
around therapy limitations, patient autonomy and prognostication discussions with 
patients and families?″ In addition, this survey will enable us to comparatively 
assess the perceived extent of ICU palliative care practice in the presence vs. 
absence of EOL legislation. 
 
 
METHODS 
 
Study participants and protocol approval 
 
The target population of this descriptive, open survey will include ICU physicians 
and nurses working in at least 100 ICUs across at least 20 European countries. 
Each one of participating ICUs will be represented by one or more healthcare 

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professionals, and the target convenience-sample size will amount to at least 500 
respondents (see also below-provided statistical analysis plan). This survey study 
is part of the European Union-funded Enhancing Palliative Care in ICU (EPIC) 
project (Proposal number: 101137221; HORIZON-HLTH-2023-DISEASE-03-01). 
The study protocol will be submitted for approval to the Scientific Council of 
Evaggelismos Hospital, Athens, Greece. 
 
Informed consent and data protection  
 
A similar methodology has been recently described (15). According to the Helsinki 
declaration, participation in research requires informed consent of the participant. 
According to Regulation 679/2016 {or General Data Protection regulation (GDPR) 
of the European Parliament and of the Council, ʺconsentʺ of the data subject 
means any freely given, specific, informed and unambiguous indication of the data 
subject's wishes by which he or she, by a statement or by a clear affirmative action, 
signifies agreement to the processing of personal data relating to him or her.ʺ 
 
Participation in and completion of the current survey means that the participant 
accepts to share their knowledge on palliative care practice, EOL legislation and 
EOL practice in their country. The estimated time for survey completion is between 
30 and 60 min.  
 
The procedure for ″pseudonymisation″ is detailed below. 
A set of 20 consecutive random numbers (range, 10-29) will be generated using 
ʺResearch Randomizer (www.randomizer.org). Each one of the aforementioned 
numbers will be assigned to a European country (country code) drawn according 
to alphabetic order from the list of participating countries. Next to the 2 digits of the 
country code, a one-to-three-digit number will be placed to represent each 
participant’s temporal order of participation relative to other participants from the 
same country. The country-specific, temporal order of participants will be 
determined according to the exact time of submission of the completed study 
questionnaire. This will form the personal, three-to-five digit code for each study 
participant.  
The survey database will be hosted by the CHARITE Berlin Simulation and 
Training Centre. Data on questionnaire domains will be stored next to the 
participant’s personal code in Microsoft Excel format. This electronic Masterfile will 
be stored onto the password-protected hard disk of a personal computer. In 
addition, next to the participant’s personal code, we will enter the following 
personal data 1) age; 2) gender; 3) religion; 4 and 5) country and center/city of 
professional activity; 6) characteristics of the participant’s ICU (e.g. general, 
medical, surgical, etc.); 7) the participant’s professional focus (e.g. clinical, 
research, etc.); and 8 and 9) the participant’s professional grade (e.g. consultant, 
professor, etc.) and ICU experience (in years of work). There will be no 
collection/recording of participants’ names or electronic mail addresses. Therefore, 
the Masterfile will fulfill the criterion of ʺpseudonymization.ʺ  
 

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Development and testing of the questionnaire 
 
The final version of the questionnaire is presented in the Appendix of the current 
protocol. The questionnaire was developed based on published, relevant literature 
(16-23), investigator consensus and comments collected by preliminary testing; 
the latter comprised administration of the questionnaire to a total of 30 Danish, 
British and Greek ICU clinicians (10 from each country). Danish and British 
clinicians were asked to qualitatively assess the readability and understandability 
of the survey questions and provide comments for improvement as regards content 
and clarity. Greek clinicians were asked to first respond to the questionnaire, in 
order to obtain an estimate of the actual time required for survey completion, and 
subsequently also provide their comments on content and clarity.   
 
In its finalized form, the survey consists of an introduction and 4 sections. The 
introduction includes core definitions concerning advance directives and shared 
decision making (16), palliative care (https://www.who.int/europe/news-room/fact-
sheets/item/palliative-care), treatment limitation (17), active shortening of the dying 
process (or euthanasia) (17), and family (18). The first section aims at collecting 
data on participant characteristics, including age, gender, religion, location of 
professional activity (including hospital name), professional focus, grade and 
experience. The second section includes questions on patient-level, family-level 
and healthcare-level domains of palliative care (19-21), as well as participant-
rating (5-point scale) of the importance of domain elements; these elements 
pertain to physical and psychosocial aspects of care, communication, family 
support and system-level support (19-21). The third section includes questions 
(and rating by 5-point scale wherever appropriate) about EOL legislation and 
practices such as and applicability of and clinician-compliance with advance 
directives, treatment limitation (i.e. withholding or withdrawing of life-sustaining 
treatments), euthanasia, terminal analgesia/sedation, EOL decision-making and 
family presence during cardiopulmonary resuscitation (17, 21). Lastly, the fourth 
section includes 12 questions with two-choice answers (i.e. yes/no) in the context 
of a recently introduced EOL practice score (17, 22) (with definitions of score 
subcomponents appended), and an additional 3 general questions about palliative 
care practice in the participant’s ICU.      
 
Website, survey promotion and access to the questionnaire 
 
The electronic version of the questionnaire will be set up at a dedicated website 
using LimeSurvey. Invitation links for this mandatory survey (meaning: all website 
visitors are expected to fill the survey) will be sent Europe-wide by EPIC partner 
European Society of Anaesthesiology and Intensive Care (ESAIC) with the use of 
social media and email channels; ESAIC has approximately 18.000 followers. 
Additional invitation links will be emailed by the investigators to their networks of 
research associates; the latter will also be encouraged to share the invitation links 
with their own networks of colleagues/associates.  
 

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Additional protocol features 
 
There are no planned incentives for participants. Data collection will be performed 
once from each participating center, within January 1st to July 30, 2024.  
 
The questionnaire will be administered over a total of 22 electronic pages. The 
items (i.e. subsection questions) per page will range from 1 (open-ended 
questions) to 9 (multiple-choice questions). Options for responses such as "do not 
know" or "not applicable" are provided for all questions of sections 2 and 3 and 
question 25.1 of section 4. In addition, adaptive questioning (i.e. "do not know" or 
"not applicable" responses to the first question of a subsection triggering 
cancellation of all subsequent questions of that particular subsection) is used from 
question 15.1 through question 21.1 of section 3; this is aimed at reducing the 
number of questions in cases of 1) lack of participants’ knowledge about whether 
certain EOL practices are legally allowed; or 2) participant awareness of absence 
of any preceding/current, local legalization of an EOL practice. In section 4, EOL 
practice score questions have by original protocol only 2 possible answers (17, 
23), whereas questions 25.2, 25.3 and 25.4 are open ended.  
 
The completeness of participants’ responsiveness (i.e. ″all survey questions 
answered″) will be checked before questionnaire submission, and participants will 
be prompted through a "pop-up" dialog box to provide any missing responses, or 
indicate that they do not wish to respond to a specific question. Furthermore, just 
prior to questionnaire submission, another "pop-up" dialog box will display a pre-
submission prompt to review (and revise if needed) the originally provided 
responses.  
 
Internet protocol (IP) address data will be used to ensure the uniqueness of survey 
participants. More specifically, unlimited, repetitive access to the questionnaire will 
be allowed from an IP address of a client computer until survey submission. 
However, following submission of the filled questionnaire through an IP address, 
will result in discontinuation of survey accessibility through that particular IP 
address.  
  
 
Due to the use of snowballing dissemination and sharing of invitation links, it will 
not be possible to calculate the survey response rate. However, survey completion 
rate will actually be calculated by dividing the total number of submitted 
questionnaires to the number of first-survey page visitors. Furthermore, 
questionnaire completeness rate will be calculated by dividing the number of 
questionnaires without any missing response to the total number of submitted 
questionnaires. Missing responses will correspond to questions to which 
participants will have indicated that they do not wish to answer (see also above). 
Mutually contradictory responses from participants originating from the same study 
center, or the same city, or the same country constitute a possibility, especially for 
the third and fourth section of the survey (15, 17, 22-24). For example, two or more 

5 
 
participants from the same center/city/country may respond differently as regards 
the legal bindingness of advance directives. In such cases, mutually contradictory  
responses will be used to estimate the extent of country-specific variation in the 
perception of law and/or local palliative care practice. 
 
  
Study outcomes 
 
The primary outcomes will be the absolute numbers of positive (i.e. yes) responses  
to question groups 10 through 14 of survey section 2, 15 through 23 of section 3, 
and 24 and 25 of section 4.  
Secondary outcomes will include 1) the absolute numbers of positive (i.e. yes) 
responses to question groups 10 through 14 of section 2 in the presence vs. 
absence of a positive response to question 24.12 of section 4.  
  
 
Statistical analysis plan 
 
Statistical analyses will include 1) descriptive statistics; 2) assessment of 
distribution normality (by Kolmogorov Smirnov test); 3) assessment of European 
country-/region-level heterogeneity in the responses; and 4) region-level 
comparisons of responses (17). 
 
We expect to determine substantial heterogeneity in the responses, primarily 
between northern and southern Europe and central and southern Europe, and 
generally between countries with high vs low palliative care service integration.   
 
High palliative care score will be defined as presence of at least 16 positive 
responses (out of 24 possible positive responses) to question groups 10 through 
14 of survey section 2.     
  
Generalized estimating equations (GEE) models with robust SEs and 
exchangeable working correlation structure accounting for the factor center (24) 
will be applied to examine associations between a high palliative care score, the 9 
clinician demographic variables of survey section 1 [with ″country″ stratified 
according to ″northern, central or southern European region″ (17,23,24)], and the 
EOL practice score and/or its subcomponent EOL practice variables listed in 
question group 24 of survey section 4. The dependent variable in this analysis will 
be high palliative care score, yes or no. Reference category for region will be 
"southern Europe" (17). The maximum number of GEE explanatory variables will 
be 21. Consequently, our target sample size of 500 participants is expected to 
result in approximately 24 observations (i.e. response data-points) per variable; 
this exceeds the recommended threshold of 20 observations per variable 
(17,23,24,25) by 20% and establishes an adequate safety margin, aimed at 
addressing the possibility of missing responses.  
 

6 
 
Significance will be set at two-sided P <0.05. Analyses will be conducted using the 
latest versions of SSPS or R software. 
 
Expected general benefits from the current study 
 
Survey results will likely serve to refine the EPIC harmonized practice model of 
palliative care, further clarifying the concepts of primary versus specialist palliative 
care and ICU clinicians’ role in the practice concept. Results from the survey on 
legal issues are expected to inform stakeholders involved in policy and legislation, 
and improve security for ICU clinicians in the respective countries and Europewide. 
 
Expected benefits for the conduct of the EPIC trial  
 
A factsheet on legal issues will be developed as tool for the EPIC intervention. 
Accordingly, work collecting information on the legal ambiguity around therapy 
limiting decisions in participating countries is already underway. This information 
will be incorporated into factsheets on legal aspects tailored to each country 
participating in EPIC, based on published evidence and expert opinion from the 
respective national centers. The factsheets are expected to achieve 1) improved 
awareness about national laws and regulations on therapy limitations; 2) legal 
constraints or deficits regarding EOL care and 3) applicability of the law to palliative 
care in ICU.  These factsheets will be handed out during the EPIC crossover period 
to every ICU clinician in participating ICUs.  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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APPENDIX. THE STUDY QUESTIONNAIRE 
 
Palliative care and legal aspects of treatment limitation decisions in ICU 
A survey of clinicians’ perceptions  
 
The primary objective of the current survey study is to obtain detailed information about 
European ICU clinicians’ awareness of palliative care and relevant, local end-of-life (EoL) 
legislation. 
    
Please note that by completing the following survey, you consent to participate in the 
study. 
 
 
Definitions 
Advance directive is an instrument that relays information concerning an individual's 
preferences and goals regarding medical procedures and treatments, especially those used 
for end-of-life care. 
 
Advance care planning: A process that enables individuals to  
 define goals and preferences for future medical treatment and care,  
 thoroughly discuss these goals and preferences with family and health-care 
professionals 
 record and review these preferences if appropriate.  
The main objective of advance care planning is to help ensure that people receive medical 
care that is consistent with their values, goals and preferences during serious, chronic 
and/or acute/life-threatening illness. 
  
Shared decision-making: shared decision-making is a collaborative process that allows 
patients, or their surrogates, and a possibly/preferably multidisciplinary team of healthcare 
professionals to reach consensus on which treatment strategies and interventions - 
including life-support limitation and palliative care- accord with the patient's values, goals, 
and preferences. [Adopted from Resuscitation. 2021;161:408-432]. 
 
Palliative care: is an approach that improves the quality of life of patients (adults and 
children) and their families who are facing problems associated with life-threatening 
illness. It prevents and relieves suffering through the early identification, correct 
assessment and treatment of pain and other problems, whether physical, psychosocial or 
spiritual (adopted from the WHO 2014 definition). 
 
Treatment limitation/euthanasia: Treatment limitation in the form of withholding or 
withdrawing life-prolonging treatments should NOT be confused with euthanasia, which 
means active, intentional, and painless termination of a person’s life by another person 

11 
 
acting at the request of the dying person. 
 
Family: is defined by the patient or, in the case of minors or those without decision-making 
capacity, by their surrogates. In this context, the family may be related or unrelated to the 
patient. They are individuals who provide support and with whom the patient has a 
significant relationship. 
 
Clinician Demographics 
 
1. Age 
(number) 
 
2. Gender  
Male, Female, Other  
 
3. Religion 
Buddhist, Catholic, Christian, Greek Orthodox, Hindu, Jewish, Muslim, Protestant, 
Other, None 
 
4. Country of your professional activity 
Austria, Belgium, Bosnia and Herzegovina, Bulgaria, Croatia, Cyprus, Czech Republic,  
Denmark, Finland, France, Georgia, Germany, Greece, Hungary, Iceland, Ireland, Israel, 
Italy, Kosovo, Montenegro, Netherlands, Norway, Poland, Portugal, Romania, Serbia, 
Slovakia, Slovenia, Spain, Sweden, Switzerland, United Kingdom, Other (please specify) 
 
5. Name of hospital/healthcare facility and city of your professional activity 
(free text) 
 
6. Characteristics of your intensive care unit (ICU) 
6.1 General/mixed, Medical, Surgical, Other 
6.2 University-affiliated, Not University-affiliated 
6.3 Number of ICU beds (number) 
 
7. Your professional focus (please choose all that apply) 
Clinical, Education, Research, Management, Other (please specify) 
 
8. Your grade (please choose all that apply) 
Nurse, Trainee / non-specialist, Consultant / specialist,  
University-related (Lecturer/Professor), Other (please specify) 
 
9. Your professional intensive care experience 
Less than 5 years, 5 to less than 10 years, 10 to 20 years, More than 20 years 
 
 
 
 
 

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Perceptions about provision of care for end of life / treatment 
limitation decisions 
 
Please use the following 5-point scale to rate the level of importance (regarding 
routine/usual/standard practice) of the following domains of end-of-life patient 
care. Please note that the term ″importance″ corresponds to what the clinician 
considers as important for the care of ICU patients who are nearing end-of-life 
and have a documented poor prognosis.    
 
1=unimportant 
2=low importance 
3=average importance 
4=high importance 
5=maximum importance 
 
At the end of each domain, it is possible to clarify your responses and/or add other 
comments 
 
 
 
10. Physical aspects of care   
 
10.1. The patient’s pain is assessed at least once daily, depending on their individual 
needs 
10.1.1. Is this part of your routine practice? Yes, No, Don’t know 
10.1.2. Importance rating. 1,2,3,4,5 
 
10.2. Pain relief is part of the daily ward round goals 
10.2.1. Is this part of your routine practice? Yes, No, Don’t know 
10.2.2. Importance rating. 1,2,3,4,5 
 
10.3. The patient’s breathing/dyspnea is assessed at least once daily, depending on 
their individual needs 
10.3.1. Is this part of your routine practice? Yes, No, Don’t know 
10.3.2. Importance rating. 1,2,3,4,5 
 
10.4. Relief of dyspnea is part of the daily ward round goals 
10.4.1. Is this part of your routine practice? Yes, No, Don’t know 
10.4.2. Importance rating. 1,2,3,4,5 
 
10.5. The patient’s other symptoms are assessed at least once daily, depending on 

13 
 
their individual needs. 
10.5.1. Is this part of your routine practice? Yes, No, Don’t know 
10.5.2. Importance rating. 1,2,3,4,5 
 
10.6. Optimizing symptom control is part of the daily ward round goals 
10.6.1. Is this part of your routine practice? Yes, No, Don’t know 
10.6.2. Importance rating. 1,2,3,4,5 
 
10.7. Comments (free text) 
 
 
11. Psychosocial aspects of care  
  
11.1. Various aspects of the patient’s life are considered in their daily care 
[For example: psychological (such as anxiety), Social, Spiritual, Existential, 
Financial] 
11.1.1. Is this part of your routine practice? Yes, No, Don’t know 
11.1.2. Importance rating. 1,2,3,4,5 
 
11.2. The patient is encouraged to participate in daily activities when able 
11.2.1. Is this part of your routine practice? Yes, No, Don’t know 
11.2.2. Importance rating. 1,2,3,4,5 
 
11.3. The patient’s treatment preferences are considered in their daily care  
11.3.1. Is this part of your routine practice? Yes, No, Don’t know 
11.3.2. Importance rating. 1,2,3,4,5 
 
11.4. Comments (free text) 
 
 
 
12. Communication and EoL care planning with the patient / family in 
ICU 
 
12.1. Comprehensive and understandable information about the patient’s diagnosis 
is provided. 
12.1.1. Is this part of your routine practice? Yes, No, Don’t know 
12.1.2. Importance rating. 1,2,3,4,5 
 
12.2. Comprehensive and understandable information about the patient’s projected 
disease course is provided 
12.2.1. Is this part of your routine practice? Yes, No, Don’t know 
12.2.2. Importance rating. 1,2,3,4,5 
 
12.3. Comprehensive and understandable information about available treatment 

14 
 
options is provided  
12.3.1. Is this part of your routine practice? Yes, No, Don’t know 
12.3.2. Importance rating. 1,2,3,4,5 
 
12.4. Comprehensive and understandable information around of end-of-life care is 
provided 
12.4.1. Is this part of your routine practice? Yes, No, Don’t know 
12.4.2. Importance rating. 1,2,3,4,5 
 
12.5. The patient is involved in end-of-life decision-making (e.g. 
withholding/withdrawing life-sustaining treatments) when able. 
12.5.1. Is this part of your routine practice? Yes, No, Don’t know 
12.5.2. Importance rating. 1,2,3,4,5 
 
12.6. The family is involved in end-of-life decision-making (e.g. 
withholding/withdrawing life-sustaining treatments) 
12.6.1. Is this part of your routine practice? Yes, No, Don’t know 
12.6.2. Importance rating. 1,2,3,4,5 
 
12.7. Comments (free text) 
 
 
 
13. The role of and support for the family    
 
13.1. The family’s role in care is recognized and supported 
13.1.1. Is this part of your routine practice? Yes, No, Don’t know 
13.1.2. Importance rating. 1,2,3,4,5 
 
 
13.2. The family’s expert knowledge of the patient and advocating for patient needs 
are valued 
13.2.1. Is this part of your routine practice? Yes, No, Don’t know 
13.2.2. Importance rating. 1,2,3,4,5 
 
 
13.3. The family is being supported to prepare for the patient’s death; an opportunity 
to say goodbye is ensured if feasible. 
13.3.1. Is this part of your routine practice? Yes, No, Don’t know 
13.3.2. Importance rating. 1,2,3,4,5 
 
 
13.4. Care is extended to the family after the patient’s death: family members are 
followed up after the patient’s ICU death 
13.4.1. Is this part of your routine practice? Yes, No, Don’t know 
13.4.2. Importance rating. 1,2,3,4,5 

15 
 
 
13.5. Comments (free text) 
14. System-level multidisciplinary support 
 
14.1. Is there effective cooperation among members of the treating team? Yes, No, 
Don’t know 
14.1.1. Importance rating. 1,2,3,4,5      
 
 
14.2. Do you think that end-of-life decisions should include an interdisciplinary team 
of healthcare professionals? Yes, No, Don’t know 
14.2.1. Importance rating. 1,2,3,4,5      
 
 
14.3. Do you think that end-of-life decisions should include the patient (if  feasible)? 
Yes, No, Don’t know 
14.3.1. Importance rating. 1,2,3,4,5      
 
 
14.4. Do you think that end-of-life decisions should include the family? Yes, No, 
Don’t know 
14.4.1. Importance rating. 1,2,3,4,5      
  
 
14.5. Do you think that end-of-life decisions should include others? Yes, No, Don’t 
know 
14.5.1. If yes, please specify who? 
14.5.2. Importance rating. 1,2,3,4,5      
 
 
14.6. Comments (free text) 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

16 
 
 
 
 
 
Perceptions about legal framework for end of life/ treatment 
limitation decisions 
 
Please use the following 5-point scale to rate the importance of the following elements 
of treatment limitation decisions; please note that ″your country″ = ″the country in which 
you work″ 
 
1=unimportant 
2=low importance 
3=average importance 
4=high importance 
5=maximum importance 
 
At the end of each domain, it is possible to clarify your responses and/or add other 
comments 
 
15. Regarding Do-not-attempt cardiopulmonary resuscitation 
(DNACPR) orders   
 
15.1. Are they legally allowed in your country?   Yes, No, Don’t know (if no/Don’t 
know – move on to question 16.1.) 
  
15.2.  Do you feel comfortable with existing legislation?  Yes, No, Don’t know, Not 
applicable (NA) 
15.2.1. Importance rating. 1,2,3,4,5      
 
15.3. Do you feel empowered to apply the existing legislation? Yes, No, Don’t know, 
NA 
15.3.1. Importance rating. 1,2,3,4,5      
 
15.4. Do you feel empowered to document DNACPR?  Yes, No, Don’t know, NA 
15.4.1. Importance rating. 1,2,3,4,5      
 
15.5. Is the treating team involved in the decision for DNACPR   Yes, No, Don’t 
know, NA 
15.5.1. Importance rating. 1,2,3,4,5      
 
15.6. Is the patient involved in the decision for DNACPR (if feasible)?  Yes, No, 
Don’t know, NA 
15.6.1. Importance rating. 1,2,3,4,5      
 
15.7. Is the family involved in the decision for DNACPR? Yes, No, Don’t know, NA 

17 
 
15.7.1. Importance rating. 1,2,3,4,5      
 
15.8. Are other persons (e.g. religious leader) involved in the decision for DNACPR? 
Yes, No, Don’t know, Not applicable (NA) 
15.8.1. If yes, please specify (free text) 
15.8.2. Importance rating. 1,2,3,4,5   
 
15.9. Comments (free text)    
 
       
                                   
16. Regarding advance directives 
  
16.1. Do they exist in your country?   Yes, No, Don’t know, Not applicable (NA) (if 
no/Don’t know/NA – move on to question 17.1.) 
 
16.2. Are they legally binding in your country?  Yes, No, Don’t know, NA  
  
16.3.  Do you feel comfortable with existing legislation?  Yes, No, Don’t know, NA 
16.3.1. Importance rating. 1,2,3,4,5      
 
16.4. Do you feel empowered to apply them? Yes, No, Don’t know, NA 
16.4.1. Importance rating. 1,2,3,4,5    
 
16.5. Do you feel empowered to document them? Yes, No, Don’t know, NA 
16.5.1. Importance rating. 1,2,3,4,5      
   
16.6. Are they regularly reviewed (e.g. every 5 years)?  Yes, No, Don’t know, NA 
16.6.1. Importance rating. 1,2,3,4,5   
 
16.7. Comments (free text)       
 
 
17. Terminal analgesia / sedation 
(the use of analgesics and sedatives in dying patients until the point of death)    
 
17.1. Is it legally allowed in your country?   Yes, No, Don’t know, Not applicable (NA) 
(if no/Don’t know/NA – move on to question 18.1.) 
  
17.2.  Do you feel comfortable with existing legislation?  Yes, No, Don’t know, Not 
applicable (NA) 
17.2.1. Importance rating. 1,2,3,4,5      
 
17.3. Do you feel empowered to apply it? Yes, No, Don’t know, NA 
17.3.1. Importance rating. 1,2,3,4,5      
 
17.4. Do you feel empowered to document it?  Yes, No, Don’t know, NA 

18 
 
17.4.1. Importance rating. 1,2,3,4,5      
 
17.5. Is the treating team involved in the decision for terminal sedation?   Yes, No, 
Don’t know, NA 
17.5.1. Importance rating. 1,2,3,4,5      
 
17.6. Is the patient involved in the decision for terminal sedation?   (if feasible)?  
Yes, No, Don’t know, NA 
17.6.1. Importance rating. 1,2,3,4,5      
 
17.7. Is the family involved in the decision for terminal sedation?   Yes, No, Don’t 
know, NA 
17.7.1. Importance rating. 1,2,3,4,5 
 
17.8. Comments (free text)    
 
 
18. Withholding of treatment (i.e. avoiding escalation of an already 
administered treatment or avoiding to add a new treatment)  
 
18.1. Is it legally allowed in your country?   Yes, No, Don’t know, Not applicable (NA) 
(if no/Don’t know/NA – move on to question 19.1.) 
  
18.2.  Do you feel comfortable with existing legislation?  Yes, No, Don’t know, Not 
applicable (NA) 
18.2.1. Importance rating. 1,2,3,4,5      
 
18.3. Do you feel empowered to apply it? Yes, No, Don’t know, NA 
18.3.1. Importance rating. 1,2,3,4,5      
 
18.4. Do you feel empowered to document it?  Yes, No, Don’t know, NA 
18.4.1. Importance rating. 1,2,3,4,5      
 
18.5. Does it include feeding? Yes, No, Don’t know, NA                                         
18.5.1. Importance rating. 1,2,3,4,5 
 
18.6. Does it include hydration? Yes, No, Don’t know, NA                                        
18.6.1. Importance rating. 1,2,3,4,5 
 
18.7. Comments (free text)  
 
 
19. Withdrawing of treatment (i.e. stopping/removing an already 
prescribed/ongoing treatment)   
 
19.1. Is it legally allowed in your country?   Yes, No, Don’t know, Not applicable (NA) 

19 
 
(if no/Don’t know/NA – move on to question 20.1.) 
  
19.2.  Do you feel comfortable with existing legislation?  Yes, No, Don’t know, Not 
applicable (NA) 
19.2.1. Importance rating. 1,2,3,4,5      
 
19.3. Do you feel empowered to apply it? Yes, No, Don’t know, NA 
19.3.1. Importance rating. 1,2,3,4,5      
 
19.4. Do you feel empowered to document it?  Yes, No, Don’t know, NA 
19.4.1. Importance rating. 1,2,3,4,5      
 
19.5. Does it include feeding? Yes, No, Don’t know, NA                                         
19.5.1. Importance rating. 1,2,3,4,5 
 
19.6. Does it include hydration? Yes, No, Don’t know, NA                                        
19.6.1. Importance rating. 1,2,3,4,5 
 
19.7. Comments (free text)  
 
 
 
20. Euthanasia in adults 
 
20.1. Is it legally allowed in your country?   Yes, No, Don’t know, Not applicable (NA) 
(if no/Don’t know/NA – move on to question 22.1.) 
  
20.2.  Do you feel comfortable with existing legislation?  Yes, No, Don’t know, Not 
applicable (NA) 
20.2.1. Importance rating. 1,2,3,4,5      
 
20.3. Do you feel empowered to apply it? Yes, No, Don’t know, NA 
20.3.1. Importance rating. 1,2,3,4,5      
 
20.4. Do you feel empowered to document it?  Yes, No, Don’t know, NA 
20.4.1. Importance rating. 1,2,3,4,5      
 
20.5. Is the treating team involved in the euthanasia decisions?      
Yes, No, Don’t know, NA                                         
20.5.1. Importance rating. 1,2,3,4,5 
 
20.6. Comments (free text)  
 
 
21. Euthanasia in children 
 
21.1. Is it legally allowed in your country?   Yes, No, Don’t know, Not applicable (NA) 

20 
 
(if no/Don’t know/NA – move on to question 22.1.) 
  
21.2.  Do you feel comfortable with existing legislation?  Yes, No, Don’t know, Not 
applicable (NA) 
21.2.1. Importance rating. 1,2,3,4,5      
 
21.3. Do you feel empowered to apply it? Yes, No, Don’t know, NA 
21.3.1. Importance rating. 1,2,3,4,5      
 
21.4. Do you feel empowered to document it?  Yes, No, Don’t know, NA 
21.4.1. Importance rating. 1,2,3,4,5      
 
21.5. Is the treating team involved in the euthanasia decisions?      
Yes, No, Don’t know, NA                                         
21.5.1. Importance rating. 1,2,3,4,5 
 
21.6. Comments (free text)  
 
 
22. Regarding EoL decisions   
 
22.1. Do families participate in EoL decisions (adults)?  Yes, No, Don’t know 
22.1. Importance rating. 1,2,3,4,5 
 
22.2. Do families participate in EoL decisions (children)? Yes, No, Don’t know  
22.2.1. Importance rating. 1,2,3,4,5 
 
22.3. For adults: Are EoL decisions reached through shared decision making? Yes, 
No, Don’t know    
22.3.1. Importance rating. 1,2,3,4,5 
 
22.4. For children: Are EoL decisions reached through shared decision making? 
Yes, No, Don’t know 
22.4.1. Importance rating. 1,2,3,4,5 
 
22.5. Comments (free text)  
                                                                                                                                                            
 
23. Family presence during Cardiopulmonary resuscitation (CPR) 
 
23.1. For adults: is family presence allowed during CPR?  Yes, No, Don’t know    
23.1.1. Importance rating. 1,2,3,4,5 
 
23.2. For children: is family presence allowed during CPR?  Yes, No, Don’t know                              
23.2.1. Importance rating. 1,2,3,4,5 
 
23.3. Comments (free text)  

21 
 
 
 
 
24. In your daily practice in ICU, do you have:  
 
24.1. Intensive care unit (ICU) routine family meetings? Yes, No 
 
24.2. ICU daily deliberation for appropriate level of ICU care? Yes, No 
 
24.3. ICU end-of-life discussions during weekly meetings? Yes, No 
 
24.4. ICU written triggers for limitations? Yes, No 
 
24.5. ICU written end-of-life guidelines? Yes, No 
 
24.6. ICU end-of-life protocols? Yes, No 
 
24.7. ICU palliative care specialty consultations? Yes, No 
  
24.8. ICU ethics consultations? Yes, No 
 
24.9. ICU staff taking communication courses? Yes, No 
 
24.10. ICU staff taking Bioethics Courses? Yes, No 
 
24.11. Country end-of-life guidelines? Yes, No 
 
24.12. Country end-of-life legislation? Yes, No 
 
 
24.13. Any additional comments (free text) 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

22 
 
 
 
 
 
EOL Practice Variable 
Definition 
Routine family meetings 
 
 
 
 
 
Regular (i.e. on admission and at least twice a week) scheduled conferences of at least one member of an ICU 
patient’s family and at least one member of the treating team aimed at a) determining/clarifying the patient’s health 
status, and comorbidities, b) patient values, preferences, and goals concerning treatment options; and c) conveying 
honest, accurate, and evidence-based information about patient clinical status and current/updated prognosis. 
Daily 
deliberation 
for 
appropriate level of care 
 
 
Routine daily discussions among members of the ICU treating team aimed at confirming that medical/surgical 
interventions administered to a patient are not disproportionate and/or do not contradict his/her preferences. 
EOL discussions during family 
meetings 
 
 
 
Conferences (on admission, and followed up at least as appropriate/feasible) of at least one member of an ICU 
patient’s family and at least one member of the treating team aimed at determining and/or revising/adjusting EOL 
treatment goals according to the evolution of the patient’s clinical course and (particularly changes) of prognosis, 
and ʺpreviously clarifiedʺ EOL values/preferences. This variable focuses on a specific type of family meetings’ 
content aimed at achieving consistency between patient wishes and provided EOL care. 
Written 
ICU 
triggers 
for 
limitations 
 
 
 
 
A set of written, pre-specified medical and/or bioethical criteria for limiting LSTs in the ICU. Examples of such 
criteria may include: family request, presence of a pertinent living will that has to be respected, irreversible 
condition, un-survivable injury, severe brain injury with poor prognosis (e.g. minimally conscious state), high 
Sequential Organ Dysfunction Assessment Score plus ]poor response to acute illness treatment, multiple organ 
failure (≥3 organs), non-beneficial therapy, and terminal illness. 
Written ICU EOL guidelines 
 
 
 
 
 
Written ICU recommendations (e.g. shared decision making, or obligation to inform the family about poor patient 
response to treatment, and/or lack of expected benefit from available and/or ongoing LSTs), with a written 
expectation to be followed for EOL decision-making and application of EOL decisions. 
Written ICU EOL (symptom 
management) protocols 
 
 
 
 
 
 
A written set of ICU recommendations and standards aimed at preventing any kind of patient distress (e.g. pain, 
dyspnea, delirium) during the application of LST limitation decisions on withholding and/or withdrawing of LSTs); 
written ICU EOL protocols may be based on recent, pertinent recommendations on how to perform withdrawing 
of LSTs.  
 
Palliative care consultations 
 
 
 
 
 
 
 
Consultations and/or liaison with specialists from the hospital’s (specifically designated) palliative care service, 
focused on the treatment of symptoms (e.g. dyspnea, pain, or delirium), rather than the treatment of any underlying 
disease processes. Psychosocial and spiritual needs may also be attended to in patients who do not require sedation 
and are able to communicate. Such consultations may take place whenever LST limitation is considered, in the 
context of communication of available treatment options to the patient/family. An exception to the former 
requirement pertains to the presence of an intensivist with palliative care expertise in the ICU treating team.  
 
Ethics consultations 
 
 
 
Consultations and/or liaison with a specialist from the hospital’s (specifically designated) clinical ethics committee, 
focused on addressing of any ensuing ethical dilemmas and/or challenges, including disagreements (that cannot 
otherwise be resolved) between surrogate decision-makers, between the patient/family and the ICU treating team, 
health care professionals or others.   
 

23 
 
 
 
 
 
 
 
25.1. Do you believe that there is adequate focus on palliative care needs in 
your ICU? 
Yes, to a very high degree 
Yes, to a high degree 
Yes, to some degree 
Yes, but to a low degree 
No, not at all 
Do not know 
 
25.2. In your opinion, what facilitates provision of palliative care in your ICU?  
(free text comments) 
  
 
25.3. In your opinion, what are the barriers to the provision of palliative care in 
your ICU?  
(free text comments) 
 
25.4. Other comments regarding palliative care in ICU? (free text comments)  
 
EOL Practice Variable  
Definition 
 
Communication courses 
 
 
 
 
Lessons focused at developing or improving the capability of 1) expressing oneself clearly, honestly, and 
accurately (about available treatment options), and also in a way that is readily understood by the 
patient/family; and 2) providing psychological support, and showing empathy to the patient/family.  
 
Bioethics courses 
 
 
 
 
Lessons focused on improving the knowledge, understanding of the widely accepted four Principles of 
Bioethics, and/or the capability of effectively addressing ethical dilemmas and challenges of routine clinical 
practice.  
 
 
Country EOL guidelines 
Written recommendations by national medical societies, or statutory governing bodies, for EOL decision 
making and EOL practices (e.g. symptom control and/or procedure for withdrawal of mechanical ventilation) 
in the ICU.  
 
Country EOL legislation 
 
 
 
 
A set of laws aimed at addressing commonly ensuing ethical issues as part of routine clinical practice (e.g. 
Should advance directives always be followed? Are withholding or withdrawing of LSTs, or active shortening 
of the dying process legally allowed?, etc.). 
EOL practice score 
The sum of binary (i.e. 0 or 1) grading of the 12 EOL practice variables according to their absence (=0) or 
presence (=1); score range: 0-12. 

24 
 
 
Thank you very much for your help