【在线速递】入住ICU的精神结局：帮助患者及家属

来源：中华医学会重症医学分会

For most patients and their families, admission to the intensive care unit (ICU) is an unanticipated event that causes substantial psychological distress. For patients, short- and long-term consequences include delirium, anxiety, depression, and acute and post traumatic stress disorder (PTSD).1 Psychological consequences may be exacerbated by delusions experienced during delirium, 2 which is common among critically ill patients and has adverse effects on physical and cognitive function and leads to increased health care use and costs. 3 For families, anxiety and acute stress arise from concern and uncertainty regarding the prognosis of their family member. Long-term psychological effects in family members appear similar to those experienced by patients. 4 Mitigating these effects is increasingly recognized as a core objective of critical care, along with managing and preventing organ failure and providing timely prognostic information and compassionate end-of-life care when appropriate.

对大多数患者和他们的家人来说，进入重症监护室(ICU)是一件意想不到的事情，会造成巨大的精神压力。对患者来说，短期和长期的结局包括谵妄、焦虑、抑郁、急性和创伤后应激障碍(PTSD)。1谵妄在危重症患者中很常见，它产生的幻觉可能会加重精神结局，2对身体和认知功能产生不良影响，并导致医疗资源使用和费用增加。3对于家人来说，焦虑和急性应激来源于对家庭成员预后的担忧和不确定性。家庭成员的长期精神影响与患者的经历相似。4减轻这些影响越来越被认为是重症治疗的核心目标，同时管理和预防器官衰竭，并在适当的时机提供及时的预后信息和临终关怀。

In preceding decades, clinicians conceptualized the ICU as psychologically disturbing and stressful. Limiting exposure of family members (via restricted visiting hours) and patients (via heavy sedation) to this environment was thought to be beneficial for both, and clinicians likely perceived benefits to uninterrupted workflow. This concept led to actions, now viewed as paternalistic, of locked doors, limitations on visiting hours and on the number and type of bedside visitors (eg, 2 at any time and only immediate family), and removal of visitors from the bedside during medical procedures, nursing care, and rounds.

在过去临床医生认为ICU可以带来精神上的不安和压力。限制家人(通过限制探视时间)和患者(通过使用大量镇静药物)暴露于这种环境被认为是有益的，而且临床医生可能认为不间断的工作流程有好处。这种观念落实在具体的行为中这些行为现在被视为家长式作风，包括锁门、限制探视时间、限制探视人数和探视类型(例如，任何时候只能2人而且必须是直系亲属)，以及在医疗操作、护理和查房期间探视者不能待在患者床边。

Alternative approaches that may improve psychological outcomes for patients and families in the ICU are unrestricted family visits to the patient’s bedside and recording details of the patient’s ICU admission using plain language and images in a diary format. Visiting family members may provide patients with psychological and cognitive support by grounding them in their life before critical illness and participate in care activities to relieve pain and mobilize the patient. In doing so, visitors may also benefit from decreased separation anxiety and less uncertainty and distress relating to prognosis and the treatment plan, and may engage more with the ICU team, facilitating a trusting relationship. Similarly, ICU diaries allow family members to document the patient’s experience of the ICU admission and serve as a real-time record of events that can be reviewed during admission and after discharge. These functions may decrease anxiety and PTSD symptoms associated with poor or absent recall of the ICU admission in both patients and family members. 5

另一种可能改善ICU患者和家属精神状况的替代方案是不限制他们到患者床边探视，并在每天的日志中以简单明了的语言和图像记录患者入住ICU的详细情况。探视的家人可以在患者病情危重前就为患者提供精神和认知上的支持，而且家人也可以参与到减轻患者疼痛和鼓励患者活动的医疗照护中。这样做，探视者也可以从减少分离焦虑、减少对预后和治疗计划的不确定性中获益，并可以更多地与ICU团队合作，促进彼此的信任。同样，ICU日志允许家属记录患者入住ICU的经历，并作为事件的实时记录，可以在入院和出院后进行查看。这些方法可能会减少患者和家属由于入住ICU的不良记忆或缺失而造成的焦虑和创伤后应激障碍症状。5

In this issue of JAMA, 2 reports focus on the psychological well-being of patients in the ICU and their families. Rosa and colleagues 6 report findings from a cluster crossover randomized clinical trial in 36 Brazilian ICUs that examined the effect of a flexible family visiting model (up to 12 h/d) compared with usual practice of a restrictive visiting model (median of 1.5 h/d) on the incidence of delirium. During the intervention phase, family members also attended a structured meeting and were provided education on the ICU environment, common procedures, the multidisciplinary team, and delirium; received an informational brochure; and were given access to a website that provides information about critical illness, care processes, and bedside visits. Patients in the flexible visiting model group had a median duration of family visiting of 4.8 hours per day vs 1.4 hours per day in the restricted visiting group (P < .001), but the number of visitors per day was not affected. Despite this increase in visitor time, there were no differences in the primary outcome of incident delirium (18.9% of patients in the flexible visiting model vs 20.1% in the restricted visiting model; P = .44) or any of the patient-related secondary outcomes.

在这一期的JAMA杂志上，有两篇关注于ICU患者及其家属的心理健康状况的报道。Rosa和他的同事6报告了在巴西36个ICU中进行的一项群组交叉随机临床试验的结果，该试验研究了弹性的家属探视模式(最多12小时/天)与常规的限制性探视模型(中位数为1.5小时/天)对谵妄发生率的影响。在干预阶段，家庭成员还参加了一个有组织的会议，并接受了关于ICU环境、常规的诊疗程序、多学科诊疗团队和谵妄的教育；收到一份资料小册子；并被允许访问一个网站，该网站提供了关于危重疾病、照护流程和床旁探视的信息。弹性探视模式组患者的家庭探视时间中位数为每天4.8小时，而限制探视组患者的家庭探视时间中位数为每天1.4小时(P < .001)，但每天探视的人数没有受到影响。尽管探视时间增加，但主要结局谵妄的发生没有差异(弹性探视模式18.9% vs 限制探视模式20.1%；P = .44)；而且与患者相关的次要结局也没有差异。

However, the flexible visiting model reduced the level of psychological distress of family members, measured by the Hospital Anxiety and Depression Scale (HADS) scale, and increased family satisfaction. Because the intervention included several components, as is often the case with biobehavioral interventions, it cannot be determined if the positive effects for family members were due to flexible visiting hours and improved adaptation to the ICU environment or whether the mechanism involved greater engagement in shared decision-making. The benefit for family members did not come at the expense of clinician distress or dissatisfaction, as assessed by the Maslach Burnout Inventory.

然而，弹性探视模式通过医院焦虑抑郁量表(HADS)测量，降低了家庭成员的精神压力水平，提高了家属满意度。因为干预包括几个部分，就像生物行为干预经常发生的情况一样，我们无法确定对家庭成员的积极影响是由于弹性的探视时间和对ICU环境的更好适应，还是使更多的人参与了共同决策的原因。正如工作倦怠感量表（ Maslach Burnout Inventory）所评估的那样，家庭成员的获益并不是以临床医生的痛苦或不满为代价的。

Despite the high ICU-level adherence to flexible visiting hours, the intervention may not have increased family members’ presence or involvement in bedside care sufficiently to influence patient-level outcomes. Family members enrolled in the study spent less than half of the maximum possible visiting time at the bedside, likely because of competing commitments. Additionally, even though the intervention group received additional education about the ICU environment, no specific instruction about strategies to reduce delirium was reported. Although family members’ self-reported involvement in patient care was a tertiary outcome, the trial did not document bedside activities by family members and analyses did not consider associations between family involvement in care and patient-level outcomes. Arguably, the quality and not the quantity of family visits may influence patient outcomes, and the intervention may have only allowed the presence of the family without enabling them to direct and participate in the delivery of care in a family-centered approach. 7 In addition, there was a suggestion that the flexible model may reduce delirium more in patients with greater illness severity (P value for interaction of intervention with severity of illness, .09), but additional research is needed to evaluate this observation.

尽管ICU高度遵守弹性的探视时间，但这些干预措施并没有增加家庭成员在床旁照护中的参与，不足以影响患者的结局。参与这项研究的家庭成员待在床旁的时间不到最大可以探视时间的一半，这可能是由于医护人员进行操作、查房、护理时需要家属离开的承诺，这种时间上的竞争关系有关。此外，即使干预组接受了额外的关于ICU环境的教育，但没有接受关于减少谵妄策略的具体指导。虽然家庭成员自我报告的参与患者照护是第三个结局，但该试验没有记录家庭成员的床旁活动，分析也没有纳入家庭参与照护与患者结局之间的关系。大概可以说，家属探视的质量而不是数量可能影响患者的预后，这些干预措施可能只允许了家属的存在，而没有使他们能够以家庭为中心的方式指导和参与提供照护。7此外，有一种观点认为，弹性的探视模式对于病情更危重的患者可能更能减少谵妄的发生(干预措施与病情严重程度交互作用的P值为0.09)，但是还需要更多的研究来论证这一观察结果。

Also in this issue of JAMA, Garrouste-Orgeas and colleagues 8 report the results of a multicenter (35FrenchICUs) randomized clinical trial that examined use of an ICU diary completed by both clinicians and family members. In the intervention group, the diary was provided to the patient, or the family member if the patient was confused, on or close to the day of ICU discharge. If the patient died, the diary and a condolence letter were mailed to the family. Unlike in other trials, 9,10 routine use of  a diary was uncommon in participating centers and distribution of the diary was not linked to a post discharge follow-up visit to provide context and support. The control group received usual care without a diary.

同样在这一期的JAMA杂志上，Garrouste-Orgeas和他的同事报告了一项多中心(35个法国ICUs)随机临床试验的结果，8该试验检查了临床医生和家属完成的ICU日志的使用情况。干预组在转出ICU当天或临近转出ICU时，将日志提供给患者，如果患者意识不清的话，则提供给家属。如果病人死亡，这些日志和一封哀悼信就会寄给家属。与其他试验不同的是，9,10在参与的中心不常规使用日志而且日志的分发不是只提供事件经过的出院后随访。对照组是接受没有日志的常规治疗。

The trial recruited 657 patients and their family members and found no between-group difference in the primary outcome of PTSD symptoms in ICU survivors (29.9% of patients in the ICU diary group vs 34.3% in the control group; P = .39), measured 90 days after ICU discharge by a blinded psychologist and defined by a score on the Impact of Events Scale-Revised (IES-R) scale greater than 22 (range, 0-88; higher scores indicate more severe symptoms). There were also no differences in secondary outcomes of PTSD in family members, anxiety or depression symptoms (measured with HADS scores) of patients or family members, or patient recall of memories (factual or delusional) of the ICU. Moreover, and for unclear reasons, the risk of mortality in the ICU among patients in the intervention group was higher than in the control group (P >.01), although the difference was attenuated at hospital discharge (P values not reported).

本试验招募了657例患者及其家属，发现PTSD症状这一主要结局在ICU幸存者中无组间差异(ICU日志组占29.9%，对照组占34.3%;P = .39)，由施盲的心理学家在转出ICU后90天进行测量，通过事件影响量表修订版(IES-R)评分定义为大于22分(范围为0-88；分数越高表明症状越严重)。两组间的次要结局也没有差异，比如家属的PTSD、患者或家属的焦虑或抑郁症状(用HADS评分衡量)以及患者对ICU的记忆(事实的或妄想的)。此外，由于不明原因，干预组ICU患者的死亡风险高于对照组(P >.01)，但差异在出院时有所减弱(P值未报道)。

As found with other studies that examined the effect of ICU diaries on PTSD 11 and anticipated in the study design, loss to follow-up at 90 days among patient participants was almost 50%; in family member participants, loss to follow-up was only 14.6%. Notably, 46.4% of family members had PTSD symptoms compared with 32.2% of patients. These risks of PTSD may be underestimated because participants with PTSD may be more avoidant of follow-up that reminds them of the ICU. A high prevalence of PTSD in family members of patients in the ICU in France has been reported 12 and attributed to a more paternalistic medical decision-making style that can create discordance with the preferences of family members. 13 The findings of this trial underscore the need for effective psychological support for patient survivors of the ICU and their family members.

和其他研究发现的一样，研究人员检查了ICU日志对PTSD的影响11，发现患者在90天随访中的失访率接近50%；而在家属参与者中，失访率仅为14.6%。值得注意的是，46.4%的家属有PTSD症状，而患者仅有32.2%。这些PTSD的风险可能被低估了，因为创伤后应激障碍的患者可能会更回避那些让他们想起ICU的随访。据报道，法国ICU患者家属中PTSD患病率很高，12这要归因于他们采用一种更家长式的医疗决策风格，这会导致家庭成员之间的决策不一致。13这项试验的结果强调了对ICU幸存者及其家属进行有效心理支持的必要性。

This study found no evidence of harm from ICU diaries, and therefore provides no reason for ICUs that provide them to stop using them, particularly if their implementation includes other plausibly effective cointerventions, such as mental health support during a structured follow-up visit. However, ICUs that do not provide diaries will find no compelling reason to adopt them. Because Garrouste-Orgeas and colleagues tested the intervention in predominantly diary-naive ICUs, it is possible that the content and instructions to participants were not sufficiently detailed, at least in the beginning of the trial. An analysis that considers the order of patient enrollment in each center to reflect experience in delivering the intervention would be informative, as done for other complex interventions. 14

本研究没有发现ICU日志有害的任何证据，因此ICUs没有理由要求他们停止使用日志，特别是如果日志的实施包括其他貌似有效的共同干预措施，例如在随访期间提供心理健康支持。然而，不提供日志的ICU也发现没有找到令人信服的理由来采用它们。因为Garrouste-Orgeas和他的同事在初步使用日志的ICU中测试了干预措施，所以很可能内容和对于参与者的指导不够详细，至少在试验开始时是这样。与其他复杂的干预措施一样，在实施干预的过程中考虑每个中心患者的纳入顺序以反馈经验的分析将提供有用的信息。14

Perhaps it should come as no surprise that improving psychological outcomes of critically ill patients and their family members may be as challenging as improving survival in patients with acute respiratory distress syndrome, sepsis, or cardiac arrest. The interventions depend on context; for example, the flexible visitation intervention tested by Rosa et al 6 in Brazil was standard in most ICUs in the study conducted by Garrouste-Orgeas et al in France, 8 and the effect of diaries that require written language commonly understood by the patients, family members, and health care team may depend on cultural and geographic factors. Future research may require a precision framework to risk-stratify patients and family members for post discharge anxiety, depression, or PTSD symptoms and a tailored ladder of interventions to prevent these outcomes. These interventions may include lower-intensity approaches, such as flexible visiting hours with family participation in patient care and- a patient diary and telephone follow-up, and more intensive approaches that include frequent meetings with ICU clinicians and follow-up after ICU discharge with mental health professionals. Although it would be easy to be dismissive of these 2 trials to improve post-ICU outcomes in patients and families 6,8 because of the statistically nonsignificant primary outcome findings, their results highlight the high risk of poor psychological outcomes and the heterogeneity of the patients and families at risk.

改善危重症患者及其家属的心理状况，可能与改善急性呼吸窘迫综合征、脓毒症或心脏骤停患者的生存一样具有挑战性，这或许并不令人意外。干预措施也取决于具体的环境；例如，Rosa等人6在巴西测试的弹性的探视干预措施是Garrouste-Orgeas等人8在法国进行的研究中大多数ICU的标准，使用患者、家属和医疗团队都能够理解的书面语言的日志，可能取决于文化和地理差异。未来的研究可能需要一个精细的设计，对出院后有焦虑、抑郁或创伤后应激障碍(PTSD)症状的患者及其家属进行风险分层，并为预防这些结果制定一系列个体化的干预措施。这些干预措施可能包括较低强度的方法，如弹性的探视时间，让家属参与到患者照护和患者日志中以及电话随访，还包括高强度的方法，包括与ICU临床医生频繁见面和转出ICU后精神健康专家进行随访。由于主要结局在统计学上差异不显著，6,8因此很容易忽视这两项研究改善患者及其家属转出ICU后的结局，尽管如此，他们的结果突出了不良精神结局的高风险以及处于风险中的患者和家属的异质性。

翻译

宋  璇  副主任医师

医学博士，美国MPA硕士，现任聊城市心脏病医院重症医学科主任/国际部主任，美国Cleveland Clinic访问学者；兼任山东省卫健委重症监护质量控制中心委员兼秘书，山东省医师协会重症医学医师分会重症远程分会副主委。

在线速递

翻译：宋   璇

编辑：马丹丹

审校：张继承/王春亭

原文章权限归原作者所有，以上译文版权归译者所有，如需转载请于云ICU后台留言。

备注：

宋   璇：聊城市心脏病医院

王春亭：山东省立医院

张继承：山东省立医院

马丹丹：济宁市第一人民医院