Saint Louis University Hospital, Intensive Care Unit, Famiréa Research Group, Assistance Publique-Hôpitaux de Paris, 1 Avenue Claude Vellefaux, 75010, Paris, France.
Department of Social and Behavioral Sciences, College of Public Health, Temple University, Philadelphia, PA, USA.
Intensive Care Med. 2019 Mar;45(3):331-342. doi: 10.1007/s00134-019-05575-4. Epub 2019 Mar 6.
Family members of critically ill patients suffer from high levels of anxiety and depression in the ICU, and are at risk of developing post-ICU syndrome following ICU discharge. In the case of brain death, and potential organ donation, the family is at the center of the decision process: within a limited time frame, the family will be informed that the patient is brain-dead and will be approached about potential organ donation.
Family experience with organ donation has been the topic of several research papers allowing one to gain knowledge about family members' experience of organ donation, emphasizing specific needs, adequate support, and pointing out gaps in current delivery of family-centered care. In this narrative review, experts, clinicians, and researchers present the various legal systems regarding family implication in organ donation decisions; describe factors that influence the decision-making process; highlight family perspectives of care and respect for potential donors in the ICU environment; describe the impact of organ donation discussions and decisions on post-ICU syndrome; and suggest communication skills and support to be developed in the future. A research agenda for the next decade is also encouraged.
Overall, challenges remain and concern all persons involved in the process, ICU doctors and nurses, the organ procurement organization, family members, and, in some cases, the patients themselves. Looking at the big picture will provide opportunities for further improvements.
重症监护病房（ICU）中患者的家属经历着高水平的焦虑和抑郁，并且在 ICU 出院后有发生 ICU 后综合征的风险。在脑死亡的情况下，以及潜在的器官捐献，家庭处于决策过程的中心：在有限的时间内，家属将被告知患者脑死亡，并被询问潜在的器官捐献。
器官捐献的家庭体验已成为几篇研究论文的主题，使人们能够了解家属对器官捐献的体验，强调特定需求、充分支持，并指出目前以家庭为中心的护理服务中的差距。在这篇叙述性综述中，专家、临床医生和研究人员介绍了涉及家庭参与器官捐献决策的各种法律制度；描述影响决策过程的因素；强调 ICU 环境中家庭对潜在供者的关怀和尊重；描述器官捐献讨论和决策对 ICU 后综合征的影响；并建议在未来发展沟通技巧和支持。还鼓励制定未来十年的研究议程。
总体而言，挑战仍然存在，涉及到所有参与该过程的人员，包括 ICU 医生和护士、器官获取组织、家属，在某些情况下还包括患者本人。从大局来看，将为进一步改进提供机会。
