Shared Decision-Making in End-Stage Heart & Lung Disease

描述（由申请人提供）：充血性心力衰竭（CHF）和慢性阻塞性肺疾病（COPD）是美国成年人最常见的死亡原因之一，但它们在临终关怀或姑息治疗文献中得到的关注相对较少。对慢性心力衰竭和慢性阻塞性肺病患者的临终关怀现已被医学研究所列为国家行动的优先领域之一。这两种疾病都有不确定的预后，这对共同决策和及时开始临终关怀构成了主要障碍。预先的护理计划在很大程度上未能改善这些疾病的临终关怀，因为患者不愿意或无法制定计划，而临床医生推迟实施这些计划。因此，考虑到患者对预后的不断发展的理解和他们考虑生命结束的意愿，另一种方法是必要的。在这个项目中，我们将采访终末期CHF和COPD患者及其配偶和临床医生，以形成预后理解对决策影响的“接地气理论”。我们将采用定性设计，分别对慢性心力衰竭或慢性阻塞性肺病住院后的患者、配偶和临床医生进行访谈。在我们的修订提案中，我们省略了后续访谈，以扩大我们的样本量并最大限度地提高我们研究对象的多样性。我们还扩大了对临床医生的访谈，以评估患者和临床医生对预后的理解是否一致，以及传递或遗漏预后信息的原因。与患者、配偶和临床医生的焦点小组也将用于评估我们理论的可信度，并验证在本研究期间开发和试点的需求评估工具和以患者为中心的访谈指南。

DESCRIPTION (provided by applicant): Congestive heart failure (CHF) and chronic obstructive pulmonary disease (COPD) are among the most common causes of death in U.S. adults, yet they have received relatively little attention in the hospice or palliative care literature. End of life care for those with CHF and COPD is now listed by the Institute of Medicine as one of its Priority Areas for National Action. Both illnesses have an uncertain prognosis that poses a major barrier to shared decision-making and the timely initiation of end of life care. Advance care planning has largely failed to improve end of life care in these illnesses because patients are unwilling or unable to formulate plans and clinicians delay implementing these plans. Therefore, an alternative approach is necessary that takes into account patients' evolving understanding of prognosis and their willingness to consider the end of their lives. In this project, we will interview patients with end-stage CHF and COPD and their spouses and clinicians to formulate a "grounded theory" of the effects of prognostic understanding on decision-making. We will utilize a qualitative design, separately interviewing patients and spouses and clinicians after a CHF or COPD hospitalization. In our revised proposal, we have omitted our follow-up interviews in order to expand our sample size and maximize the diversity of our subjects. We have also expanded our clinician interview to assess for congruence between patient and clinician understanding of prognosis and reasons for the transmission or omission of prognostic information. Focus groups with patients, spouses and clinicians will also be used to assess the trustworthiness of our theory and to validate a Needs Assessment Instrument and a Patient-Centered Interview Guide developed and piloted during this study. Specific Aims 1 To characterize the understanding of and adaptation to prognosis by patients with end stage heart disease (NYHA Class Ill-IV CHF) and end stage lung disease (COPD with FEV< 35%). A. What factors are associated with discordance between patient and clinician understanding of prognosis? How does the presence or absence of prognostic information from the patient's clinician affect patient decision-making? B. How does the spouse or significant other influence the understanding of prognosis and patient decision-making about end of life care? C. How does patient adaptation and decision-making evolve 6 months after a hospitalization? D. Are there significant differences] How does prognostic understanding and decision making differ between patients with CHF and those with COPD? 2] To generate a grounded theory of end of life clinical decision making by patients with CHF and COPD 3] To develop and pilot test a Patient-Centered Interview Guide to facilitate shared decision-making for patients with end stage CHF and COPD. This guide will be personalized based on a Needs Assessment Instrument (also developed during this study) that identifies patients' sense of readiness, importance and confidence in making end of life decisions. Feasibility and acceptability of this Instrument and Guide will be tested in the current study Distribution of these needs in the population and effectiveness of the Instrument and the Guide at improving end of life care will be tested in a future study.