Advance care planning in Veterans with kidney disease

描述(由申请人提供)： 越来越多的老年退伍军人开始进行慢性透析。这些患者有很高的共病负担，而且透析开始后的预期寿命非常有限。随着他们接近生命的尽头，许多人将遵循一种不断上升的医疗保健利用率和成本的模式。 在生命的最后一个月，美国老年透析患者平均在医院呆近10天，近一半住进重症监护病房，近三分之一接受旨在延长生命的密集手术，如插管、放置喂养管或心肺复苏。这些高度密集的临终关怀模式似乎更多地是由医生的做法推动的，而不是患者的偏好：现有数据表明，大多数晚期肾脏疾病患者不希望接受延长死亡过程的干预措施，他们更愿意死在家里或临终关怀院，而不是医院。因此，当代老年透析患者的临终护理模式可能与患者的偏好和价值观不同步。高级护理计划(ACP)是患者在发生严重威胁生命的疾病时，与家人和提供者讨论他们的治疗偏好的过程。以前对肾病患者的ACP的大多数研究都集中在预先指导(这只是ACP过程的一个方面)，是在透析设施的水平上进行的(因此只包括透析患者)，而且是横断面的(因此没有提供关于结果的信息)。已经为慢性病患者提出了一种促进针对特定疾病的ACP的方法，并已被证明在包括接受慢性透析的患者在内的特定人群中促进更符合患者偏好的临终护理。据我们所知，便利的以患者为中心的提前护理计划尚未应用于肾病早期患者，他们正在接近慢性透析的需要。在这些患者中，可能有一个重要的机会在高级护理计划和慢性疾病管理之间进行协同：在ACP的更广泛的背景下制定与透析启动相关的决定，同时将关于ACP的抽象讨论置于晚期肾脏疾病过程中出现的现实治疗决定的基础上。在患有晚期肾脏疾病的老年退伍军人中，促进针对特定疾病的ACP方法可以有效地使临终关怀实践与患者的目标和偏好保持一致。这项建议的目标将是收集定量和定性数据，用于为患有晚期肾脏疾病的老年退伍军人量身定做以患者为中心的简化ACP模型。我们提出了三个研究目标：1)开发一个关于70岁及以上患有晚期肾脏疾病的退伍军人的综合国家数据库，该数据库将提供关于这一人群的临床结果和当代ACP实践的信息。这一量化目标将提供退伍军人系统内患有晚期肾脏疾病的老年退伍军人中ACP实践的现状及其与下游临终关怀模式的关系；2)在70岁及以上患有晚期肾脏疾病的退伍军人、他们的家人和4个不同退伍军人医疗中心的提供者中进行定性研究，以征求他们对在这一人群中治疗ACP的最佳方法的看法；3)基于这些形成性研究目标的结果，我们将调整以患者为中心的ACP模式，以适应患有晚期肾脏疾病的老年退伍军人。我们将在退伍军人事务部普吉特湾医疗系统进行一项试点试验，以评估干预措施对参与机场核心计划的准备情况的影响。试点数据将被用来支持在患有晚期肾脏疾病的退伍军人中进行更大规模随机试验的可行性，以确定干预是否导致患者偏好与生命末期接受的护理之间更大的一致性。

DESCRIPTION (provided by applicant): A growing number of older Veterans are initiating chronic dialysis. These patients have a high burden of co-morbidity and very limited life expectancy after dialysis initiation. As they approac the end of their lives, many will follow a pattern of escalating healthcare utilization and costs. During the final month of life, elderly US dialysis patients spend an average of almost 10 days in the hospital, almost half are admitted to the intensive care unit and almost one third undergo an intensive procedure intended to prolong life such as intubation, feeding tube placement or cardiopulmonary resuscitation. These highly intensive patterns of end-of-life care seem to be driven much more by physician practices than by patient preferences: available data suggest that most patients with advanced kidney disease do not wish to receive interventions that prolong the dying process and would prefer to die at home or in a hospice rather than in the hospital. Thus contemporary patterns of end-of-life care among older dialysis patients may be out of step with patient preferences and values. Advance care planning (ACP) is the process whereby patients engage in discussions with their families and providers about their treatment preferences in the event of a serious life-threatening illness. Most prior studies of ACP in patients with kidney disease have focused on advance directives (which are only one aspect the ACP process), have been conducted at the level of the dialysis facility (and thus have included only dialysis patients), and have been cross-sectional in nature (and thus have not provided information on outcomes). A facilitated disease-specific approach to ACP has been proposed for patients with chronic illness, and has been shown to promote end-of-life care that is more congruent with patient preferences in select populations, including patients receiving chronic dialysis. To our knowledge facilitated patient-centered advance care planning has not been applied to patients with earlier stages of kidney disease who are approaching the need for chronic dialysis. In these patients, there might be an important opportunity for synergy between advance care planning and chronic disease management: framing decisions related to dialysis initiation within a broader context of ACP while grounding abstract discussions about ACP in real-world treatment decisions that arise in the course of advanced kidney disease. A facilitated disease-specific approach to ACP among elderly Veterans with advanced kidney disease could be effective in aligning end-of-life care practices with patient goals and preferences. The goal o this proposal will be to collect quantitative and qualitative data that will be used to tailor a facilitated patient-centered model of ACP to older Veterans with advanced kidney disease. We propose three study aims: 1) to develop a comprehensive national database of Veterans aged 70 years and older with advanced kidney disease that will provide information on clinical outcomes and contemporary ACP practices in this population. This quantitative aim will provide information on contemporary ACP practices among older Veterans with advanced kidney disease within the VA system and their relationship with downstream patterns of end-of-life care; 2) to conduct a qualitative study among Veterans aged 70 years and older with advanced kidney disease, their family members and providers at 4 different VA medical centers to elicit their perspectives about the optimal approach toward ACP in this population; 3) based on the results of these formative study aims, we will adapt a patient-centered model of facilitated ACP to older veterans with advanced kidney disease. We will conduct a pilot trial at the VA Puget Sound Healthcare System to evaluate the impact of the intervention on readiness to engage in ACP. Pilot data will be used to support the feasibility of a larger randomized trial in Veterans with advanced kidney disease to determine whether the intervention leads to greater alignment between patient preferences and care received at the end of life.