Tough choices: the experience of family members of critically ill patients participating in ECMO treatment decision-making: a descriptive qualitative study
Open accessAbstract
BACKGROUND: ECMO treatment for critically ill patients mostly requires family members to make surrogate decisions. However, the process and experience of family members' participation in decision making have not been well described. PURPOSE: To explore the experience of family members of critically ill patients who were asked to consent to ECMO treatment and to gain insight into the factors that promote and hinder their decision-making. METHODS: A descriptive qualitative study. Data were collected using a semi-structured interview method and analysed using traditional content analysis approaches. The cohort included nineteen family members of critically ill ICU patients from a general hospital in China. RESULTS: Eleven family members consented to ECMO treatment, and 8 refused. 4 themes and 10 subthemes emerged: (1) tough choices: the dilemma in the emergency situation, the guilt and remorse after giving up; (2) rationalisation of decision-making: ethics and morality guide decision-making, expected efficacy influences decision making, and past experience promotes decision making; (3) decision-making methods: independent decision-making, group decision-making, decision making based on patient preferences; (4) influencing factors of decision making: information and communication, social support. CONCLUSION: The findings provide insights and a basis for promoting efficient ECMO decision-making in clinical practice. It may be difficult to improve the time it takes to make the decision without sacrificing the quality of the decision. Healthcare professionals should provide timely emotional support, informational support, and comprehensive social support to assist them in making efficient decisions while respecting the treatment preferences of the decision-makers.
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Qualitative studies reveal that families often experience information overload, emotional distress, and value conflicts when confronted with ECMO decisions.
“Qualitative studies reveal that families often experience information overload, emotional distress, and value conflicts when confronted with ECMO decisions12, conditions that may exacerbate decisional conflict, delay initiation, or complicate clinician–family communication13.”
From Decisional conflict among Chinese family caregivers prior to ECMO initiation: a cross-sectional study (2025) · cites this paper as [12]
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Xiao, S., Liu, H., Tang, L., Xiong, Q., Jiang, R., & Hong, D. (2025) · Scientific Reports · doi:10.1038/s41598-025-28709-9 · Cited by 1 · see citing works
“Qualitative studies reveal that families often experience information overload, emotional distress, and value conflicts when confronted with ECMO decisions 12 , conditions that may exacerbate decisional conflict, delay initiation, or complicate clinician–family communication 13 .”
- Authors
- Yang, X., Lin, Y., Tang, A., Zeng, X., Dai, W., Zhang, Q., & Ning, L.
- Affiliations
- Westlake University (CN)
- Affiliated Hangzhou First People's Hospital, Westlake University, School of Medicine (CN)
- Corresponding author
- Ning, Li
- Venue
- BMC Medical Informatics and Decision Making
- Published
- 2025-02-07
- Volume
- 25
- Issue
- 1
- Pages
- 65-65
- ISSN
- 1472-6947 (ISSN-L)
- PMC
- PMC11806576
- OpenAlex
- W4407252746
- Cited by
- 12
- References
- 1
- Citations by year
- 2026: 7 · 2025: 5
- FWCI
- 10.25
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- BMC Medical Informatics and Decision Making (publishedVersion, cc-by-nc-nd)
- PubMed Central (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
- Funders
- Medical and Health Science and Technology Project of Zhejiang Province (2023KY945)
- Construction Fund of Key medical disciplines of Hangzhou-Nursing (0020200265)
- Topics
- Health Sciences › Health Professions › Radiological and Ultrasound Technology › Family and Patient Care in Intensive Care Units
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Ethics and Legal Issues in Pediatric Healthcare
- Keywords
- extracorporeal membrane oxygenation, family decision-making, surrogate decision-making, family members of critically ill patients, treatment refusal, guilt and remorse, social support, emotional support, information and communication, patient preferences, intensive care unit
- MeSH terms
- Adult, Aged, China, Decision Making, Family, Female, Humans, Intensive Care Units, Male, Middle Aged, Extracorporeal Membrane Oxygenation, Critical Illness, Qualitative Research
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