儿童缓和医疗家庭会议中国专家共识

doi:10.12114/j.issn.1007-9572.2026.0139

中国全科医学 ›› 2026, Vol. 29 ›› Issue (33): 4833-4840.DOI: 10.12114/j.issn.1007-9572.2026.0139

• 指南·共识·解读 • 下一篇

儿童缓和医疗家庭会议中国专家共识

中华医学会儿科分会血液学组儿童舒缓治疗亚专业组

收稿日期:2026-07-02 修回日期:2026-08-06 出版日期:2026-11-20 发布日期:2026-10-21
基金资助:
国家自然科学基金青年基金项目(72204171); 2025年度雏菊学苑儿童安宁缓和医疗科研基金项目(DA-YB-202504)

Chinese Expert Consensus on Family Meetings in Pediatric Palliative Care

Subspecialty Group of Pediatric Palliative Care, Hematology Group, Pediatrics Society of Chinese Medical Association

Received:2026-07-02 Revised:2026-08-06 Published:2026-11-20 Online:2026-10-21

摘要/Abstract

摘要： 在儿童缓和医疗领域，家庭会议被广泛认为是促进医患沟通、提供情感支持、确保治疗方案个性化的重要环节。目前，我国儿童缓和医疗领域中的家庭会议仍处于探索阶段，标准化、系统化的实施流程与操作规范仍待完善。为推动标准化家庭会议的实施，本共识基于系统文献回顾与专家共识会议，围绕5个核心临床问题形成推荐意见，具体包括：召开家庭会议的时机与持续时间、家庭会议的参加人员、家庭会议的形式与场所、家庭会议的标准化流程，以及特殊家庭与特殊决策下的处理策略。在共识的制订过程中，需多学科专家不断评估、反馈及优化，确保家庭会议方案的个性化和全面性。本共识旨在为临床工作者提供结构化指导，提升我国儿童缓和医疗家庭会议的实施质量。

关键词: 家庭会议, 儿童缓和医疗, 医患沟通, 情感支持, 共同决策, 共识

Abstract:

Family meetings are widely recognized as an integral component of pediatric palliative care, facilitating effective communication between healthcare professionals and families, providing emotional support, and promoting individualized care planning. In China, however, their implementation remains at an early stage, and standardized procedures and operational guidelines have yet to be fully established. To support the systematic and standardized implementation of family meetings, this consensus statement was developed based on a systematic literature review and expert consensus meetings. Recommendations address five key clinical questions concerning the timing and duration of family meetings, participant composition, meeting format and setting, standardized procedures, and strategies for addressing special family circumstances and complex decision-making scenarios. Throughout the development process, a multidisciplinary expert panel undertook iterative evaluation and refinement, incorporating feedback to ensure that the recommended approach was comprehensive and adaptable to the needs of individual patients and families. This consensus statement aims to provide healthcare professionals with structured guidance to enhance the quality of family meetings in pediatric palliative care in China.

Key words: Family meetings, Pediatric palliative care, Healthcare provider-patient communication, Emotional support, Shared decision-making, Consensus

中华医学会儿科分会血液学组儿童舒缓治疗亚专业组. 儿童缓和医疗家庭会议中国专家共识[J]. 中国全科医学, 2026, 29(33): 4833-4840. DOI: 10.12114/j.issn.1007-9572.2026.0139.
Subspecialty Group of Pediatric Palliative Care, Hematology Group, Pediatrics Society of Chinese Medical Association. Chinese Expert Consensus on Family Meetings in Pediatric Palliative Care[J]. Chinese General Practice, 2026, 29(33): 4833-4840. DOI: 10.12114/j.issn.1007-9572.2026.0139.

图/表 1

参考文献 38

[1]	Together for Short Lives. Together for short lives definition of children's palliative care. Together for Short Lives Accessed 5th February 2021[EB/OL]. [2025-08-25].
[2]	Salins N, Hughes S, Preston N. Palliative care in paediatric oncology: an update[J]. Curr Oncol Rep, 2022, 24(2): 175-186. DOI: 10.1007/s11912-021-01170-3.
[3]	中华人民共和国国务院.《"健康中国2030"规划纲要》[EB/OL]. [2025-08-25].
[4]	Norris S, Minkowitz S, Scharbach K. Pediatric palliative care[J]. Prim Care Clin Off Pract, 2019, 46(3): 461-473. DOI: 10.1016/j.pop.2019.05.010.
[5]	中华护理学会安宁疗护专业委员会. 安宁疗护家庭会议专家共识[J]. 中华护理杂志, 2023, 58(13): 1541-1544. DOI: 10.3761/j.issn.0254-1769.2023.13.001.
[6]	Glajchen M, Goehring A, Johns H, et al. Family meetings in palliative care: benefits and barriers[J]. Curr Treat Options Oncol, 2022, 23(5): 658-667. DOI: 10.1007/s11864-022-00957-1.
[7]	徐婷, 王瑜婷, 李随, 等. 儿童安宁疗护中共同决策的研究进展[J]. 护理学杂志, 2025, 40(4): 115-119. DOI: 10.3870/j.issn.1001-4152.2025.04.115.
[8]	蔡思雨, 周翾, 成磊, 等. 儿科安宁疗护中共同决策的阻碍因素与应对策略的定性研究[J]. 护理学杂志, 2024, 39(20): 35-40. DOI: 10.3870/j.issn.1001-4152.2024.20.035.
[9]	Connor S R, Downing J, Marston J. Estimating the global need for palliative care for children: a cross-sectional analysis[J]. J Pain Symptom Manage, 2017, 53(2): 171-177. DOI: 10.1016/j.jpainsymman.2016.08.020.
[10]	Cai S Y, Peng X X, Guo Q H, et al. The development status and five-year evolution of pediatric palliative care in mainland China[J]. J Pain Symptom Manage, 2026, 71(2): 307-315.e1. DOI: 10.1016/j.jpainsymman.2025.10.030.
[11]	Semple A, Finlay M, Ali A, et al. Components of family meetings for hospitalized children with serious illness: a scoping review[J]. Hosp Pediatr, 2025, 15(8): e392-e403. DOI: 10.1542/hpeds.2024-008302.
[12]	World Health Organization. Integrating palliative care and symptom relief into paediatrics: a WHO guide for health care planners, implementers and managers [R/OL]. 2018-08-08.
[13]	National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care [M/OL]. 4th ed. Richmond, VA: National Coalition for Hospice and Palliative Care, 2018.
[14]	Bradford N, Rolfe M, Ekberg S, et al. Family meetings in paediatric palliative care: an integrative review[J]. BMJ Support Palliat Care, 2021, 11(3): 288-295. DOI: 10.1136/bmjspcare-2020-002333.
[15]	Radbruch L, De Lima L, Knaul F, et al. Redefining palliative care—a new consensus-based definition[J]. J Pain Symptom Manage, 2020, 60(4): 754-764. DOI: 10.1016/j.jpainsymman.2020.04.027.
[16]	Friebert S, Trujillo Rivera E A, Baker J N, et al. Pediatric advance care planning and adolescent preparedness and quality of life: an RCT[J]. Pediatrics, 2025, 155(2): e2024068699. DOI: 10.1542/peds.2024-068699.
[17]	张璐, 黄月霖, 伍晓琴, 等. 以家庭为中心的儿科预立医疗照护计划研究进展[J]. 中国护理管理, 2023, 23(8): 1233-1238. DOI: 10.3969/j.issn.1672-1756.2023.08.024.
[18]	Hudson P, Girgis A, Thomas K, et al. Do family meetings for hospitalised palliative care patients improve outcomes and reduce health care costs? A cluster randomised trial[J]. Palliat Med, 2021, 35(1): 188-199. DOI: 10.1177/0269216320967282.
[19]	Davidson J E, Aslakson R A, Long A C, et al. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU[J]. Crit Care Med, 2017, 45(1): 103-128. DOI: 10.1097/ccm.0000000000002169.
[20]	Widera E, Anderson W G, Santhosh L, et al. Family meetings on behalf of patients with serious illness[J]. N Engl J Med, 2020, 383(11): e71. DOI: 10.1056/nejmvcm1913056.
[21]	王灿, 张红娟. 安宁疗护家庭会议在终末期癌症患者病情告知中的探究[J]. 临床护理研究, 2025, 34(10): 221-222, 225.
[22]	Vendetta L, Vig E, Kross E, et al. The role of the palliative medicine clinician in the family conference[J]. Am J Hosp Palliat Care, 2023, 40(1): 5-9. DOI: 10.1177/10499091221093560.
[23]	Kawashima T, Kawakami A, Ashida K, et al. Development of the nursing practice scale for end-of-life family conferences in critical care[J]. Intensive Crit Care Nurs, 2021, 66: 103076. DOI: 10.1016/j.iccn.2021.103076.
[24]	Jonas D, Scanlon C, Schmidt L, et al. Creating a seat at the table: how family meetings elucidate the palliative care social work role[J]. J Palliat Med, 2020, 23(12): 1688-1691. DOI: 10.1089/jpm.2019.0645.
[25]	Taylor J, Murphy S, Chambers L, et al. Consulting with young people: informing guidelines for children's palliative care[J]. Arch Dis Child, 2021, 106(7): 693-697. DOI: 10.1136/archdischild-2020-320353.
[26]	Michiels E M, Joren C Y, Kars M C, et al. Shared decision-making in pediatric palliative care in the Netherlands[J]. Curr Probl Pediatr Adolesc Health Care, 2024, 54(1): 101549. DOI: 10.1016/j.cppeds.2023.101549.
[27]	Marie B, Cheville Andrea L, Marie M T, et al. Telehealth strategies to support patients and families across the cancer trajectory[J]. Am Soc Clin Oncol Educ Book Am Soc Clin Oncol Annu Meet, 41: 413-422.
[28]	Kuntz J G, Kavalieratos D, Esper G J, et al. Feasibility and acceptability of inpatient palliative care E-family meetings during COVID-19 pandemic[J]. J Pain Symptom Manage, 2020, 60(3): e28-e32. DOI: 10.1016/j.jpainsymman.2020.06.001.
[29]	Ferrell B R, Twaddle M L, Melnick A, et al. National consensus project clinical practice guidelines for quality palliative care guidelines, 4th edition[J]. J Palliat Med, 2018, 21(12): 1684-1689. DOI: 10.1089/jpm.2018.0431.
[30]	Cai S Y, Cheng L, Wang R X, et al. A shared decision-making model in pediatric palliative care: a qualitative study of healthcare providers[J]. BMC Palliat Care, 2023, 22(1): 190. DOI: 10.1186/s12904-023-01307-0.
[31]	Dreesens D, Veul L, Westermann J, et al. The clinical practice guideline palliative care for children and other strategies to enhance shared decision-making in pediatric palliative care; pediatricians' critical reflections[J]. BMC Pediatr, 2019, 19(1): 467. DOI: 10.1186/s12887-019-1849-0.
[32]	朱方园, 汤玉萍. 儿童行使医疗决定权利的困境与思考[J]. 中国医学伦理学, 2022, 35(1): 55-58. DOI: 10.12026/j.issn.1001-8565.2022.01.09.
[33]	蔡思雨, 郭巧红, 王瑞欣, 等. 儿童安宁疗护共同决策的本土化临床实践[J]. 医学与哲学, 2024, 45(12): 34-38. DOI: 10.12014/j.issn.1002-0772.2024.12.08.
[34]	Hudson P L, Girgis A, Mitchell G K, et al. Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol[J]. BMC Palliat Care, 2015, 14(1): 73. DOI: 10.1186/s12904-015-0071-6.
[35]	Kim E S, Kim S, Kim S, et al. Palliative care for infants in the neonatal intensive care unit: a scoping review[J]. J Hosp Palliat Nurs, 2024, 26(1): 14-20. DOI: 10.1097/njh.0000000000000985.
[36]	Wool C, Côté-Arsenault D, Perry Black B, et al. Provision of services in perinatal palliative care: a multicenter survey in the United States[J]. J Palliat Med, 2016, 19(3): 279-285. DOI: 10.1089/jpm.2015.0266.
[37]	Haug S, Dye A, Durrani S. End-of-life care for neonates: assessing and addressing pain and distressing symptoms[J]. Front Pediatr, 2020, 8: 574180. DOI: 10.3389/fped.2020.574180.
[38]	Carter B S. Pediatric palliative care in infants and neonates[J]. Children (Basel), 2018, 5(2): 21. DOI: 10.3390/children5020021.

儿童缓和医疗家庭会议中国专家共识

Chinese Expert Consensus on Family Meetings in Pediatric Palliative Care

RichHTML

PDF

可视化

摘要/Abstract

引用本文

使用本文

图/表 1

参考文献 38

相关文章 15

编辑推荐

Metrics

留言

[1]	易珊烨, 杨荣, 廖晓阳, 周伊恒, 刘力滴, 杨梓钰, 白佳欣, 贾禹, 张欣. 2024年《动脉压力、结构及功能评估》专家共识解读[J]. 中国全科医学, 2026, 29(32): 4690-4694.
[2]	匡莉, 丁欣欣, 马远珠. 动机式访谈在基层慢性病管理医患沟通中的应用：从原理到实践[J]. 中国全科医学, 2026, 29(31): 4536-4542.
[3]	沈碧玉, 路佳慧, 李馨, 李惠玲, 李春波, 樊盼玉, 凡帆, 马晨欢, 王广海. 《儿童姑息治疗中睡眠问题的国际共识：铺平道路》解读[J]. 中国全科医学, 2026, 29(28): 4047-4057.
[4]	广东省基层卫生协会精准营养应用分会. 基于医防融合的基层营养门诊建设与N-RCSP精准营养健康管理专家共识[J]. 中国全科医学, 2026, 29(28): 4033-4046.
[5]	瞿芙容, 金佳琪, 薛桂君, 吕庆国, 李治鹏, 李静, 李舍予. BMJ基于心肾事件预防与体质量管理的2型糖尿病治疗药物动态临床实践指南解读[J]. 中国全科医学, 2026, 29(27): 3873-3878.
[6]	南京大学医学院附属鼓楼医院, 中国康复科学所, 中国康复研究中心, 江苏省整合医学研究会整合营养管理专业委员会, 中国康复医学会康复工程与产业促进专业委员会, 广东省康复医学发展研究会再生修复与抗衰老分会. 青少年特发性脊柱侧凸营养康复管理专家共识[J]. 中国全科医学, 2026, 29(24): 3393-3408.
[7]	谢婉, 涂旭莲, 吴丽萍, 刘霞, 李晓燕, 冷明月, 杨雪青, 李莉. 子宫内膜异位症疼痛管理相关指南和专家共识的系统评价[J]. 中国全科医学, 2026, 29(23): 3351-3358.
[8]	瞿芙容, 赵黎君, 曾筱茜, 李静, 李舍予. BMJ《SGLT-2抑制剂用于成人慢性肾脏病患者临床实践指南》解读[J]. 中国全科医学, 2026, 29(22): 3079-3085.
[9]	中国药理学会药源性疾病专委会. 酸相关疾病药物治疗专家共识[J]. 中国全科医学, 2026, 29(19): 2593-2607.
[10]	海峡两岸医药卫生交流协会全科医学分会, 浙江省医学会全科医学分会, 浙江省数理医学学会全科未分化疾病专委会, 中国老年医学学会. 麻木诊治与管理专家共识（2025）[J]. 中国全科医学, 2026, 29(18): 2433-2449.
[11]	童敏, 王颖, 徐衍燊, 曾永渐, 文华, 刘学, 孙香娟, 张丰华. 功能性消化不良指南质量评价：基于AGREE Ⅱ和RIGHT工具[J]. 中国全科医学, 2026, 29(17): 2410-2417.
[12]	郭娇, 张高静, 刘新灿. 中医药临床实践指南/共识的质量评价：基于两种指南评价工具[J]. 中国全科医学, 2026, 29(15): 2100-2106.
[13]	中国康复医学会社区康复工作委员会. 认知障碍患者居家康复管理的中国专家共识（2026版）[J]. 中国全科医学, 2026, 29(14): 1793-1802.
[14]	张强, 赵文霞, 王子怡, 闫乐, 梁浩卫, 王金钒, 方进华, 卢存存. 结局测量工具系统评价的报告规范（PRISMA-COSMIN for OMIs 2024）解读[J]. 中国全科医学, 2026, 29(13): 1766-1775.
[15]	闫蓓蓓, 徐怀伏. 对儿童1型糖尿病特异性自我报告结局量表的测量属性评价：基于COSMIN指南[J]. 中国全科医学, 2026, 29(12): 1624-1632.