eISSN 2097-6046
ISSN 2096-7446
CN 10-1655/R
Responsible Institution:China Association for Science and Technology
Sponsor:Chinese Nursing Association
Special Planning: Improving Nursing Care Quality for ICU

A qualitative study on barriers to participation in advance care planning among ICU surrogate decision-makers

  • XIA Lianzi ,
  • YU Fei ,
  • FENG Bo ,
  • ZHOU Hui ,
  • JI Kangling ,
  • WANG Qing
Expand
  • 1. Department of Intensive Care UnitNanjing Drum Tower Hospital Clinical College of Jiangsu UniversityNanjing 210000, China
    2. Department of Intensive Care UnitNanjing Drum Tower Hospital Affiliated Hospital of Medical SchoolNanjing 210000, China
    3. Department of NursingYunnan Mental HospitalKunming 650224, China
    4. Nursing DepartmentNanjing Drum Tower Hospital Affiliated Hospital of Medical SchoolNanjing 210000, China

Received date: 2025-03-07

  Online published: 2026-02-02

Supported by

Nanjing Drum Tower Hospital Average Project(2023-H516)

Abstract

Objective To explore the barriers to participation in advance care planning(ACP) decision-making among surrogate decision-makers in the ICU,and to provide a basis for developing decision support tools. Methods From October 2024 to December 2024,an interview guide was developed based on the Theoretical Domains Framework(TDF). Face-to-face interviews were conducted with 18 surrogate decision-makers of ICU patients in a tertiary hospital in Nanjing. The transcribed texts were analyzed according to the relevant domains of the TDF. Results Based on the TDF,the barriers to ACP decision-making among ICU surrogate decision-makers were categorized into 5 themes and 13 sub-themes: ①Execution barriers under ambiguous patient preferences; ②Breakdown in the procedural mechanisms of ACP participation;③Constraints from sociocultural norms and public discourse; ④Blurred role recognition of the decision-making surrogate; ⑤Irrational decision-making driven by emotions. Conclusion The ACP decision-making of ICU surrogate decision-makers is influenced by multiple factors. Cognitive restructuring,improved communication,emotional support,and reconstruction of the medical-social network are needed to reduce negative experiences during the decision-making process.

Cite this article

XIA Lianzi , YU Fei , FENG Bo , ZHOU Hui , JI Kangling , WANG Qing . A qualitative study on barriers to participation in advance care planning among ICU surrogate decision-makers[J]. Chinese Journal of Emergency and Critical Care Nursing, 2026 , 7(2) : 155 -161 . DOI: 10.3761/j.issn.2096-7446.2026.02.004

References

[1] Cai XM, Robinson J, Muehlschlegel S, et al. Patient preferences and surrogate decision making in neuroscience intensive care units[J]. Neurocrit Care, 2015, 23(1):131-141.
[2] Muehlschlegel S, Shutter L, Col N, et al. Decision aids and shared decision-making in neurocritical care:an unmet need in our NeuroICUs[J]. Neurocrit Care, 2015, 23(1):127-130.
[3] Krutsinger DC, Maloney SI, Courtright KR, et al. Barriers and facilitators of surrogates providing consent for critically ill patients in clinical trials:a qualitative study[J]. Chest, 2024, 166(2):304-310.
[4] Alfheim HB, Hofs? K, Sm?stuen MC, et al. Post-traumatic stress symptoms in family caregivers of intensive care unit patients:a longitudinal study[J]. Intensive Crit Care Nurs, 2019, 50:5-10.
[5] Rietjens JAC, Sudore RL, Connolly M, et al. Definition and recommendations for advance care planning:an international consensus supported by the European Association for Palliative Care[J]. Lancet Oncol, 2017, 18(9):e543-e551.
[6] 周军, 王莎莎, 孙璇. 预立医疗照护计划在重症医学科中的应用研究进展[J]. 医学与哲学, 2020, 41(2):14-17.
  Zhou J, Wang SS, Sun X. Research progress of the advance care planning in intensive care unit[J]. Med Philos, 2020, 41(2):14-17.
[7] 韩知浩, 方勇, 蔡燕吉, 等. 晚期癌症患者主要照顾者参与预立医疗照护计划障碍的质性研究[J]. 中华护理杂志, 2023, 58(21):2624-2630.
  Han ZH, Fang Y, Cai YJ, et al. Qualitative research on the barriers of surrogate decision-makers participating in advanced care planning of patients with advanced cancer[J]. Chin J Nurs, 2023, 58(21):2624-2630.
[8] 张立文, 魏贞艳, 梁海珍, 等. 家庭共同决策模式下危重症患者预立医疗照护计划沟通方案的构建[J]. 中华急危重症护理杂志, 2024, 5(6):506-512.
  Zhang LW, Wei ZY, Liang HZ, et al. Construction of communication plan of advance care planning for critically ill patients under family codecision model[J]. Chin J Emerg Crit Care Nurs, 2024, 5(6):506-512.
[9] 丁新波, 胡芬, 马晶, 等. 重症监护病房患者预立医疗照护计划接受程度的现状及相关因素研究[J]. 中国卫生统计, 2020, 37(6):932-934,937.
  Ding XB, Hu F, Ma J, et al. Study on the current situation and related factors of patients’ acceptance of pre-established medical care plan in intensive care unit[J]. Chin J Health Stat, 2020, 37(6):932-934,937.
[10] Michie S, Johnston M, Abraham C, et al. Making psychological theory useful for implementing evidence based practice:a consensus approach[J]. Qual Saf Health Care, 2005, 14(1):26-33.
[11] Kerr C, Nixon A, Wild D. Assessing and demonstrating data saturation in qualitative inquiry supporting patient-reported outcomes research[J]. Expert Rev Pharmacoecon Outcomes Res, 2010, 10(3):269-281.
[12] Cane J, O’Connor D, Michie S. Validation of the theoretical domains framework for use in behaviour change and implementation research[J]. Implement Sci, 2012, 7:37.
[13] Hsieh HF, Shannon SE. Three approaches to qualitative content analysis[J]. Qual Health Res, 2005, 15(9):1277-1288.
[14] Zier LS, Sottile PD, Hong SY, et al. Surrogate decision makers’ interpretation of prognostic information:a mixed-methods study[J]. Ann Intern Med, 2012, 156(5):360-366.
[15] 崔佳颖, 刘源. 医患沟通过程模式中的障碍与对策研究[J]. 首都经济贸易大学学报, 2014, 16(3):78-83.
  Cui JY, Liu Y. Communication obstacles between doctors and patients from communication process model[J]. J Cap Univ Econ Bus, 2014, 16(3):78-83.
[16] Candrian C, Lasker Hertz S, Matlock D, et al. Development of a community advance care planning guides program and the RELATE model of communication[J]. Am J Hosp Palliat Care, 2020, 37(1):5-11.
[17] Bouleuc C, Savignoni A, Chevrier M, et al. A question prompt list for advanced cancer patients promoting advance care planning:a French randomized trial[J]. J Pain Symptom Manage, 2021, 61(2):331-341.e8.
[18] Sui WJ, Gong XY, Qiao XT, et al. Family members’ perceptions of surrogate decision-making in the intensive care unit:a systematic review[J]. Int J Nurs Stud, 2023, 137:104391.
[19] 安晓, 薛雅婷, 夏雨, 等. ICU患者替代决策者决策疲劳现状及影响因素分析[J]. 中华护理杂志, 2023, 58(8):949-955.
  An X, Xue YT, Xia Y, et al. Current status of decision fatigue among substitutive decision makers of ICU patients and its influencing factors[J]. Chin J Nurs, 2023, 58(8):949-955.
[20] 王乐. 儒家文化背景下医疗决策中的自主问题[J]. 医学与社会, 2022, 35(1):26-30,35.
  Wang L. Autonomy in medical decision-making under the background of Confucian culture[J]. Med Soc, 2022, 35(1):26-30,35.
[21] 朱明兰, 刘丹丹, 崔伟. 中国文化背景预立医疗照护计划实施现状浅析[J]. 中国卫生标准管理, 2021, 12(9):31-33.
  Zhu ML, Liu DD, Cui W. The current situation and analysis of the implementation of advance care planning in the context of Chinese culture[J]. China Health Stand Manag, 2021, 12(9):31-33.
Outlines

/