Triggered Palliative Care for Advanced Dementia: A Pilot Study

 描述(由申请人提供) 痴呆症是导致三分之一死亡的原因之一，也是唯一没有有效预防或治疗的主要死亡原因。100万美国人患有晚期痴呆症，其特征是无法识别家人，说话稀少，所有活动都依赖于 日常生活。中位生存期为1.3年，6个月死亡率为25%。痴呆症的最后一年的特点是急性并发症--肺炎和其他感染、脱水、营养不良、跌倒和骨折--而住院。急性疾病会给患者带来症状困扰，给家庭照顾者带来情绪和经济上的压力。这些疾病还与明年的高死亡风险有关，并引发了关于医疗目标的伦理问题。姑息治疗咨询可以改善晚期癌症和危重疾病患者的预后，但从未经过严格的晚期痴呆症测试。需要针对痴呆症的姑息治疗，以解决与这种疾病相关的独特症状和治疗决定。因此，我们建议为因严重急性疾病住院而引发的晚期痴呆症患者开发和试行姑息治疗咨询模式。患者将与他们的家庭决策者(N=60个二元组)一起参加随机可行性试验。干预二人组将在入院期间接受专门的姑息治疗咨询，以及由他们的门诊初级保健提供者和一名姑息护理护士在出院后进行协作护理。控制二人组将接受通常的护理。我们的研究目标是为应用于NIA(PA-13-354推进老年姑息护理科学)的晚期痴呆症协作性姑息护理模型的大型多点随机对照试验(RCT)产生初步数据。我们对这一应用的具体目标是：目标1：为因严重急性疾病入院而引发的晚期痴呆症开发一种协作姑息治疗的最佳实践模式。目的2：对晚期痴呆患者进行一项协作性姑息治疗的先导性随机试验(与常规治疗相比)，以论证进行较大规模随机对照试验的可行性，并估计效应大小，以便为较大的随机对照试验提供信息。主要结果将是出院后30天内医院转院(急诊室或住院)的数量。在出院和30天随访时衡量的次要结果将包括护理计划中姑息治疗领域的数量、临终关怀转诊、完成POLST(维持生命治疗的医生订单)、决定不再住院以及繁重的治疗。

 DESCRIPTION (provided by applicant) Dementia is a contributing cause for 1 in 3 deaths, and is the only major cause of death with no effective prevention or treatment. One million Americans have advanced dementia, characterized by inability to recognize family, sparse speech, and dependency for all activities of daily living. Median survival is 1.3 years, and 6-month mortality is 25%. The final year of life wih dementia is characterized by hospitalizations for acute complications -- pneumonia and other infections, dehydration, malnutrition, falls and fractures. Acute illnesses cause symptom distress for patients, with emotional and financial strain for family caregivers. These illnesses are also associated with a high risk of death in the next year and raise ethical questions about goals of medical treatment. Palliative care consultation improves outcomes for patients with advanced cancer and critical illness, but has never been rigorously tested for advanced dementia. Dementia-specific palliative care is needed to address the unique symptoms and treatment decisions relevant to this disease. We therefore propose to develop and pilot test a model of palliative care consultation for advanced dementia patients, triggered by hospitalization for a serious acute illness. Patients will be enrolled with their family decision-makers (N=60 dyads) in a randomized feasibility trial. Intervention dyads will receive specialty palliative care consultaton during hospital admission, plus post-discharge collaborative care by their outpatient primary care provider and a palliative care nurse practitioner. Control dyads will receive usual care. Our research objective is to generate preliminary data for a large multi-site randomized controlled trial (RCT) of a model of collaborative palliative care for advanced dementia in an application to NIA (PA-13-354 Advancing the Science of Geriatric Palliative Care). Our specific aims for this application are: Aim 1: To develop a best-practice model of collaborative palliative care for advanced dementia triggered by hospital admission for serious acute illness. Aim 2: To conduct a pilot randomized trial of collaborative palliative care for advanced dementia (versus usual care) to demonstrate the feasibility of conducting a larger RCT and to estimate effect sizes to inform the larger RCT. The primary outcome will be number of hospital transfers (emergency room or hospital admission) in the 30 days post discharge. Secondary outcomes, measured at hospital discharge and 30 days follow-up, will include number of palliative care domains in the care plan, hospice referral, POLST (Physician Orders for Life- Sustaining Treatment) form completion, decision not to re-hospitalize, and burdensome treatments.