Secondary Logo

Notes on the Development of the Slovenian Ethical Recommendations for Decision-Making on Treatment and Palliative Care of Patients at the End of Life in Intensive Care Medicine

Grosek, Stefan, MD, PhD1,,2; Orazem, Miha, MD, MSc3; Groselj, Urh, MD, PhD, MA4

Pediatric Critical Care Medicine: August 2018 - Volume 19 - Issue 8S - p S48–S52
doi: 10.1097/PCC.0000000000001606
Supplement
Free

Objectives: To describe the process of development of “Slovenian Ethical Recommendations for Decision-Making on Treatment and Palliative Care of Patients at the End of Life in Intensive Care Medicine” and its final outcomes.

Data Sources: Personal experience and reflection, complemented by published data.

Study Selection: Not applicable.

Data Extraction: Not applicable.

Data Synthesis: Narrative, experiential reflection, literature review.

Conclusions: Slovenian ethical recommendations bring a small piece to a long tradition of ethical practice in a small European country. Despite the availability of informative international guiding documents on the issue, there are several specific good reasons for a small country or a region to develop its own unique guidelines (i.e., lack of local directives and legislation, unique cultural and political situation, need for development of professional expertise and terminology, and to educate healthcare providers). The authors strongly believe that our recommendations positively impact practice and will support best possible integrated palliative and end-of-life quality care with the ICU.

1Department of Pediatric Surgery and Intensive Therapy, University Medical Centre Ljubljana, Ljubljana, Slovenia.

2Department of Pediatrics, Faculty of Medicine, University of Ljubljana, Ljubljana, Slovenia.

3Department of Radiation Oncology, Institute of Oncology Ljubljana, Ljubljana, Slovenia.

4Department of Endocrinology, Diabetes and Metabolic Diseases, University Children’s Hospital, University Medical Centre Ljubljana, Ljubljana, Slovenia.

The authors have disclosed that they do not have any potential conflicts of interest.

For information regarding this article, E-mail: stefan.grosek@kclj.si

In 1997, the Slovenian National Medical Ethics Committee (NMEC) and its then president Joze Trontelj (1, 2) (Professor Joze Trontelj [1939–2013] was a world-renowned neurophysiologist and bioethicist, a long standing president of NMEC and also president of Slovenian National Academy of Arts and Sciences. He crucially influenced the development of medical ethics field in Slovenia and within also an approach to end-of-life [EOL] dilemmas. He was among the core group authoring Oviedo convention) published the first National statement on death and dying “Care of the dying and questions on euthanasia.” For almost 2 decades, this statement marked out a path to Slovenian physicians and other healthcare providers taking care of the patients at the end of their lives. The NMEC paper forwarded the basic principle for physician to preserving life and preventing harm. It is acknowledged that when death is inevitable, physicians are duty bound to relieve suffering both mental and physical including withholding or withdrawing life-sustaining interventions as quoted “In principle, the doctor is obliged to help the patient with all reasonably available means to alleviate his suffering and possibly save lives. The doctor’s duty to preserve life ceases when the disease process appeared as irreversible path towards the patient’s death, and when the injuries are so severe that they are not compatible with life. In such case, the doctor has a duty to relieve symptoms and physical and mental suffering of the patient. Then the decision to withhold or withdraw life-sustaining treatments is justified” (1).

After joining the European Union in 2004, Slovenia harmonized its legislation with relevant European legislation. Nevertheless, there was still a lack of specific legislation and other regulations in Slovenia (and probably in many other—specially smaller—countries) that would provide a clear guidance in the very specific setting of EOL situations in the intensive care. In addition, there exist major differences among European countries, stemming from differing legal, political, and cultural contexts, influencing patient-doctor EOL decision-making in ICUs. This is notably demonstrated in The Ethicus Study (3). All these factors catalyze a need for unique guidance within each specific healthcare system to help the care providers to navigate these issues. Additionally, specific terminology in a national language is needed to enable not just patients and their families but also healthcare providers and other professionals to adequately grasp the concepts in play at EOL. Advances in intensive care and the development of palliative care led to recognition that changes of the 1997 Slovenian statements were also overdue.

After some preceding discussions and deliberations, designated members of the NMEC and the Slovenian Society of Intensive Medicine, in collaboration with palliative care providers, established a National working group endorsed by both bodies, to develop new Slovenian EOL care recommendations, complementary to and extending the other national and international guidance documents available (4–10). The purpose of this new work was to provide Slovenian healthcare providers in ICUs with an ethical and legal framework for managing patients at the EOL, aligned with the fundamental ethical principles and human rights and also with Slovenian legislation. The framework guides healthcare providers, in the context of ethical surety and dilemma, to provide quality care for all patients at the EOL and highlights the need for implementation of all necessary means in order to ensure comprehensive EOL palliative care. The working group was established in 2013. A crucial step in completing this process was to assemble an interdisciplinary workgroup composed of 23 professionals, encompassing broad range of possible backgrounds and perspectives. This step ensured that the scope and relevance of the recommendations were reflective of the practice of interprofessional teams in critical care. This project was carried out in collaboration with the Medical Ethics Committee at the University Medical Centre Ljubljana. Meetings of contributors took place between September 2013 and October 2014.

Beforehand, the authors of this article performed a study on attitudes and experiences with limitation of life-sustaining treatments among Slovenian adult and pediatric intensivists and also among Slovenian pediatricians in 2012 (11–13). The following year a prospective study of intensivists in all 34 ICUs in the country explored how these intensivists approach EOL decision-making in practice and which elements of this clinical situation were the most important to be prioritized and elucidated in the new recommendations and resulting documents (14).

Methodologically, the working group first explored and reviewed existing guidelines, recommendations, and applicable legislations and regulations on EOL ethical issues and decision-making, palliative care, and intensive care ethics. On that basis, four main domains within the landscape of EOL hospital care were iteratively elucidated. Each of these sections 1) definitions, 2) basic ethical principles, the 3) parties/stakeholders in decision-making, 4) the decision-making process were further reviewed in several group discussions (Table 1). These expert- and evidence- informed dialogues resulted in consensus of all the participants about the inclusion and organization of the guiding content. Emphasis within the recommendations is placed on the decision-making parties and the process. The imperative is that individual case decisions and planning are accomplished collectively and consensually by a medical council meeting, after family engagement and all the relevant medical facts have been considered.

TABLE 1

TABLE 1

The recommendations are applicable across both pediatric and adult patients’ populations and contexts. In line with the provisions of the Patient’s Right Act for pediatric patients below 15 years old, their parents or legal representatives have to take decisions for them. However, decision-making is led by the doctor and the healthcare team whereby a special attention has to be paid to the benefit of the patient. Both parents have to be in agreement in cases where discontinuation of treatment in EOL situation occurs. According to our policy, a shared decision-making procedure about the discontinuation of the treatment, which is not any more in the pediatric patient’s best interest, has to be performed. In order not to put additional psychologic burden on parents, their signatures are not needed, but they have to orally agree. In case of disagreement between the healthcare professionals and parents or legal representatives, a delay in decision is acceptable with new family meeting after certain amount of time has elapsed, for example, 24 hours or more. Palliative care is always offered and given to the pediatric patients after decision-making procedure led to the final decision and conclusion.

The recommendations were approved at the regular monthly meeting of the NMEC on January 13, 2015 and at the meeting of the Expanded Professional Collegium for Intensive Medicine on March 12, 2014 (Table 1). The guiding principles developed within the Slovenian ethical recommendations at the EOL are presented in Table 2. Our recommendations are comparable with other similar national and international documents (which briefly comparatively reviewed in Table 3) but also specifically address relevant national legislature and other regulations, provide definitions and novel terminology in our national language.

TABLE 2

TABLE 2

TABLE 3

TABLE 3

These recommendations were disseminated for use in a published pocket brochure, and recommendations were widely distributed to Slovenian physicians. Access was also available online (http://kme-nmec.si/files/2015/05/Eticna_priporocila_paliativa-v-intenzivni-medicini.pdf). They were presented at numerous professional and scientific meetings to Slovenian and international healthcare providers (15–20). In addition, a tool for guiding the decision-making process was developed by the working group and been widely implemented in practice. So far, it is available at intranet of University Medical Centre Ljubljana in section Unified Data System and can be retrieved only by its employees.

Our experience strongly indicates that not only the recommendations but also our research work among Slovenian intensivists impacted the everyday practice to promote best possible care for patients and emphasizing the role of palliative care and palliative care expertise as a means of improving the quality of life at the EOL already within the ICUs. The last important issue is that our neighboring state Croatia would like to follow the same process of research and preparing the ethical recommendation on the basis what we did, and we were invited to participate in their research on this matter.

In conclusion, Slovenian ethical recommendations for EOL care in intensive care add a pragmatic and functional support to a long tradition of ethical practice in this small European country. The national collaborative development process successfully addressed the lack of local directives and legislation and harmonized existing practice recommendations with the unique cultural and political context of Slovenia.

Engagement of local experts and inclusion of local data aided dissemination. We believe this use of this strongly nationally focused process increased the uptake and impact of the resulting national guidance documents as vehicles to improve the quality and outcomes of EOL care.

Back to Top | Article Outline

REFERENCES

1. Trontelj J. Statement of the national medical ethics committee on the treatment of the terminally-ill and euthanasia. Zdrav Vestn 1997; 66:269–270
2. Trontelj J. Addendum to the statement of the national medical ethics committee on the treatment of the terminally-ill and euthanasia. Zdrav Vestn 1997; 66:270–271
3. Sprung CL, Cohen SL, Sjokvist P, et al; Ethicus Study Group: End-of-life practices in European intensive care units: The Ethicus Study. JAMA 2003; 290:790–797
4. Truog RD, Campbell ML, Curtis JR, et al; American Academy of Critical Care Medicine: Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American College [corrected] of Critical Care Medicine. Crit Care Med 2008; 36:953–963
5. Curtis JR, Vincent JL. Ethics and end-of-life care for adults in the intensive care unit. Lancet 2010; 376:1347–1353
6. Berlinger N, Jennings B, Wolf SM. The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life: Revised and Expanded Second Edition. 2013New York, NY, Oxford University Press.
7. General Medical Council: Treatment and Care Towards the End of Life: Good Practice in Decision Making, 2010. Available at: https://www.gmc-uk.org/-/media/documents/Treatment_and_care_towards_the_end_of_life___English_1015.pdf_48902105.pdf. Accessed October 20, 2017
8. Valentin A, Druml W, Steltzer H, et al. Recommendations on therapy limitation and therapy discontinuation in intensive care units: Consensus Paper of the Austrian Associations of Intensive Care Medicine. Intensive Care Med 2008; 34:771–776
9. Giannini A, Messeri A, Aprile A, et al; SARNePI Bioethics Study Group: End-of-life decisions in pediatric intensive care. Recommendations of the Italian Society of Neonatal and Pediatric Anesthesia and Intensive Care (SARNePI). Paediatr Anaesth 2008; 18:1089–1095
10. Council of Europe: Guide on the Decision-Making Process Regarding Medical Treatment in End-of-Life Situations, 2014. Available at: https://edoc.coe.int/en/index.php?controller=get-file&freeid=6093. Accessed October 20, 2017
11. Groselj U, Orazem M, Trontelj J, et al. End-of-life ethical dilemmas in intensive care unit. Zdrav Vestn 2013; 82:589–601
12. Orazem M, Groselj U, Stojan M, et al. End-of-life decisions in 34 Slovene intensive care units: A nationwide prospective clinical study. Minerva Anestesiol 2017; 83:728–736
13. Grosek S, Orazem M, Kanic M, et al. Attitudes of Slovene paediatricians to end-of-life care. J Paediatr Child Health 2016; 52:278–283
14. Groselj U, Orazem M, Kanic M, et al. Experiences of Slovene ICU physicians with end-of-life decision making: aA nation-wide survey. Med Sci Monit 2014; 20:2007–2012
15. Pleterski-Rigler D, Grosek S. Flis V. Ethical recommendations on treatment in intensive care medicine – starting points for ethical recommendations for decision-making on treatment and palliative care patient at the end of life in intensive care medicine. In: Surgical Patient in Intensive Care Unit. 2014, pp Maribor, Slovenia, Clinic of Surgery, UMC Maribor: Department of Surgery, Faculty of Medicine, 37–46
16. Grosek Š. Grošelj U, Orazem M, Grosek Š. Synopsis of ethical recommendations for decision-making on treatment and palliative care of patients at the end of life in intensive care medicine. 2014, 2nd Symposium of Ethics in Medicine [with international participation, dedicated to memory of Academician Jože Trontelj], Suppl. 4, Ljubljana, Slovenia, Medicinski razgledi, S15–S19
17. Grosek S. Ethical Recommendations for Decision-Making on Treatment and Palliative Care of Patients at the End of Life in Intensive Care Medicine: Invited Lecture at the Assembly of the Slovenian Association for Intensive Care (SZIM). 2015Ljubljana, Slovenia, Slovenian Association for Intensive Care.
18. Grosek S. Ethics of Forgoing Life Supporting Treatment of Terminally Ill (Causing Suffering, Prolonging Agony And Financial Burden): Invited Lecture at the 152 Nd Regular Annual Assembly of The Slovenian Medical Association. 2015Moravske Toplice, Slovenia, Slovenian Medical Association.
19. Grosek S. Slovenian Ethical Principles on Treatment and Paliative Care at the End of Life: Invited Lecture at the 2nd International Paediatric Congress of the Paediatric Association of the Balkan. 2015Ljubljana, Slovenia, Paediatric Association of the Balkan.
20. Grosek S, Groselj U, Orazem M, et al. Grosek Š, Lopuh M. Etična priporočila za odločanje o zdravljenju in paliativni oskrbi bolnika ob koncu življenja v intenzivni medicini. In: 3rd Seminar on Ethics in Intensive Medicine. 2016, pp Ljubljana, Slovenia, University Medical Centre Ljubljana, 41–47
Keywords:

end of life; ethics; intensive care medicine; palliative care; recommendations

©2018The Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies