Annual Report 2022

In 2022 the group were able to have physical meetings again. During the meetings topics to continue to work with arouse, for example: A Nordic study on moral distress and the ethical climate; Guidelines on ethical collaboration/teamwork; Ethics programme at the NOPHO/NOBOS meeting in Lund 2023; Patients on social media and Palliative sedation.

Members have been working on the homepage and have continued to update and maintain it to spread information about ethics and be a resource for healthcare professionals on where to find information and who to contact. The group has also participated in policymaking and CESS through serving as members of national, regional or local committees/societies/working groups.

Furthermore, members have been working in a national group in Sweden to develop an improved evaluation questionnaire focusing on outcomes of CESS. The developed version “Ethically difficult situations in care” is inspired by the Euro-MCD questionnaire (de Snoo-Trimp JC, 2020), established in the European Clinical Ethics Network (ECEN). Members of ECEN are collaborators. The development of the questionnaire and the content are currently in manuscript. When published it will be disseminated to all facilitators and used to evaluate CESS.

Members have also initiated a research project with the aim to explore patients, parents and healthcare professionals’ views on patient/parent participation in CESS. Separate funding has been granted for the research. WGE have been involved in planning and conducting workshops about patient and parent participation in CESS. CESS methods identified during the workshops will be piloted, tested and further developed. The WGE will then function as a reference group.

Completed meetings of the WGE, 2022

13-15 Mar 2022, Sweden

9-12 Oct 2022, Norway

Upcoming meetings of the WGE, 2023

The group plans to have one 3-day meeting in Sweden the 26-28 of March and one 4-day meeting 12-15 of November 2023 (Country to be decided).

Completed course arranged by the WGE

Since the group started to give the course in “Guiding Ethics Case Reflection Rounds” we have had 2 cohorts of the course. Approximately 50 persons have attended the coursewith an equal spread among physicians and nurses. Part II of the second cohort were held in April 2022. Additional to the course the group arranged an extra day with lectures and workshops regarding patients and parents’ participation in clinical ethics support.

Upcoming course arranged by the WGE

27-29 September 2023, Guiding Ethics Case Reflection Rounds, Cohort III, part I.

13-15 March 2024, Guiding Ethics Case Reflection Rounds, Cohort III, part II.

Funding

Wesenberg Rognlien received funding from the Norwegian Childhood Cancer Foundation for the meeting held in Oslo in September, 2022. Bartholdson (co-applicant: Pergert) has received a grant for the WGE for 2023-2025 (PL2022-0004) from the Swedish Childhood Cancer Foundation.

Presentations on ethics at international conferences from the group or with group members as co-authors during 2022

• Weiner, C., Pergert, P. & Bartholdson, C. Parents perspectives on important values and ethically difficult situations when their child is treated for cancer: A qualitative interview study. (SIOP Meeting Abstract) Pediatric Blood & Cancer, 2022;69(Suppl. 5), p.S53.https://doi.org/10.1002/pbc.29952
• Ventovaara, P., af Sandeberg, M., Petersen, G., Blomgren, K. & Pergert, P. Nurses’ perceptions of situations in paediatric oncology care that involve children’s voices – A cross-sectional survey of ethical climate and moral distress. (SIOP Meeting Abstract) Pediatric Blood & Cancer, 2022;69(Suppl. 5), p.S47. https://doi.org/10.1002/pbc.29952
• Pergert, P., Bartholdson, C. & af Sandeberg. Context-specific situations important to capture moral distress – A national cross-sectional study in paediatric oncology. (Proceedings of ICCEC 2021) Journal of Hospital Ethics, 2022;8(1), p. 34–35

Publications on ethics from the group or with group members as co-authors, Original articles 2022

• Bartholdson, C., Billstein, I., Molewijk B. & Pergert P. What outcomes of moral case deliberations are perceived important for healthcare professionals to handle moral challenges? A national cross-sectional study in paediatric oncology. BMC Medical Ethics. 2022; 23:108 DOI: 10.1186/s12910-022-00851-3
• Weiner, C., Pergert, P., Castor, A., Molewijk, B. & Bartholdson, C. Difficult situations and moral questions raised during moral case deliberations in Swedish childhood cancer care – A qualitative nationwide study.  European Journal of Oncology Nursing. 2022; 60:102189. DOI: 10.1016/j.ejon.2022.102189.
• Ventovaara, P., af Sandeberg, M., Petersen, G., Blomgren, K. & Pergert, P.   A cross-sectional survey of moral distress and ethical climate – Situations in paediatric oncology care that involve children’s voices. Nursing Open. 2022 Jul;9(4):2108-2116. DOI: 10.1002/nop2.1221; PMID: 35441803 
• Bartholdson C, Kreicbergs U, Sveen J, Lövgren M, Pohlkamp L. Communication about diagnosis and prognosis-A population-based survey among bereaved parents in pediatric oncology. Psychooncology. 2022 Dec;31(12):2149-2158. doi: 10.1002/pon.6058. Epub 2022 Nov 4. PMID: 36307935.

References

de Snoo-Trimp JC, de Vet HCW, Widdershoven GAM, Molewijk AC, Svantesson M. Moral competence, moral teamwork and moral action – the European Moral Case Deliberation Outcomes (Euro-MCD) Instrument 2.0 and its revision process. BMC Med Ethics. 2020 Jul 2;21(1):53. doi: 10.1186/s12910-020-00493-3. PMID: 32616048; PMCID: PMC7331166.