Department of Medicine, Johns Hopkins Bayview Medical Center, Baltimore, MD.
Departments of Medicine and Anesthesia & Critical Care Medicine, Memorial Sloan Kettering Cancer Center, Weill Cornell Medical College, New York, NY.
Crit Care Med. 2018 May;46(5):699-704. doi: 10.1097/CCM.0000000000003035.
Family members commonly make medical decision for patients with chronic critical illness. This study examines how family members approach this decision-making role in real time.
Qualitative analysis of interviews with family members in the intervention arm of a randomized controlled communication trial.
Medical ICUs at four U.S. hospitals.
Family members of patients with chronic critical illness (adults mechanically ventilated for ≥ 7 d and expected to remain ventilated and survive for ≥ 72 hr) who participated in the active arm of a communication intervention study.
Family members participated in at least two content-guided, informational, and emotional support meetings led by a palliative care physician and nurse practitioner.
Grounded theory was used for qualitative analysis of 66 audio recordings of meetings with 51 family members. Family members perceived their role in four main ways: voice of the patient, advocate for the patient, advocate for others, and advocate for oneself. Their decision-making was characterized by balancing goals, sharing their role, keeping perspective, remembering previous experiences, finding sources of strength, and coping with various burdens.
Family members take a multifaceted approach as they participate in decision-making. Understanding how surrogates perceive and act in their roles may facilitate shared decision-making among clinicians and families during critical care.
患者患有慢性危重病时，其家属通常会代其做出医疗决策。本研究实时考察了家属如何在这种情况下开展决策工作。
对随机对照沟通试验干预组中家属进行访谈的定性分析。
美国四家医院的重症监护病房。
参与沟通干预研究主动组的慢性危重病患者家属（患者接受机械通气治疗时间超过 7 天，预计需要通气和生存时间超过 72 小时）。
家属至少参加了两次由姑息治疗医生和护士从业者主导的内容指导、信息和情感支持会议。
对 51 名家属参加的 66 次会议的音频记录进行了扎根理论的定性分析。家属主要通过以下四种方式感知自己的角色：患者代言人、患者的倡导者、他人的倡导者和自身的倡导者。他们的决策特点是平衡目标、分享角色、保持客观、牢记以往经验、寻找力量来源以及应对各种负担。
家属在参与决策时采取了多方面的方法。了解代理人如何感知和发挥作用，可能有助于在重症监护期间促进临床医生和家属之间的共同决策。
