Perspectives of People with Non-Cancer Illnesses about Care at the End of Life

描述（由申请人提供）：尽管在过去十年中，临终关怀的使用急剧增长，但我们对美国大多数死亡的了解甚少。本研究的目的是描述患有选定的非癌症疾病的人对生命末期护理的看法。具体而言，本研究旨在探讨他们目前和未来的护理目标，了解临终护理的选择以及医疗保健提供者的期望。美国国立卫生研究院（National Institutes of Health）建议，有必要更好地了解不同亚群体的人的临终经历，比如那些患有癌症以外的限制生命的疾病的人。这些人很少使用临终关怀，他们对临终关怀的看法是未知的。人们对患有限制生命的疾病的人以及他们在接近生命尽头时的需求的大部分了解都是在癌症诊断患者中进行的。虽然患有非癌症疾病的患者确实将临终关怀作为一种护理选择，但许多人没有，他们对临终关怀的看法和对提供者的期望知之甚少。这个定性描述性设计将描述20名在社区家庭护理机构登记的非癌症生活限制疾病患者的观点。具体目标包括：1)描述患有选定的非癌症疾病的接近生命尽头的人对他们当前和未来护理目标的看法；2)探讨他们对临终关怀选择的理解；3)描述他们在病情发展过程中对医疗服务提供者的期望。非癌症限制生命疾病患者的第一手经验是增加现有临终关怀知识体系的重要因素。从这项研究中获得的信息可以为未来的研究活动提供信息，这些研究活动的重点是获得更深层次的理论观点或开发干预措施，以改善对这一群体的护理。心力衰竭、慢性阻塞性肺病和中风是影响大量美国人的常见慢性疾病，是导致死亡的四大主要原因之一。患有这些疾病的人通常不被认为是绝症患者，他们得到临终关怀的支持远远少于晚期癌症患者。在改善非癌症疾病患者的临终关怀之前，了解他们对健康、疾病的看法以及对临终关怀的期望是很重要的。

DESCRIPTION (provided by applicant): Although the use of hospice at the end of life has dramatically grown over the past decade, we understand very little about the majority of deaths in the US. The purpose of this study is to describe the perspectives of people living with selected non-cancer illnesses about care at the end of life. Specifically, this study aims to explore their current and future goals for care, understanding about options for care at the end of life and expectations from health care providers. The National Institutes of Health suggested the need for a better understanding about the end of life experiences of people comprising various sub-groups, such as those living with life-limiting illnesses other than cancer. Hospice care is seldom used by these people and their perspectives regarding care at the end of life are unknown. Much of what is known about people with life-limiting illnesses and what they want as they near the end of life has been studied in patients with cancer diagnoses. Although patients with non- cancer illnesses do enroll in hospice as one option for care, many do not, and their perspectives on end of life care and expectations from providers are poorly understood. This qualitative descriptive design will describe the perspective of 20 participants with non-cancer life- limiting illnesses who reside at home enrolled in a community home care agency. The specific aims include: 1) To describe the perspectives of people with selected non-cancer illnesses nearing the end of life about their current and future goals for care; 2) To explore their understanding about options for care at the end of life; and 3) To describe what they expect from health care providers as their illness progresses. The first-hand experiences of people living with non-cancer life-limiting illnesses are important elements to add to the existing body of knowledge on end-of-life care. The information learned from this study can inform future research initiatives that focus on deriving deeper theoretical perspectives or in the development of interventions to improve care for this group of people. Heart failure, chronic obstructive pulmonary disease, and stroke are common chronic illnesses that affect a vast number of people in the United States, and are among the top four leading causes of death. People who live with these illnesses are not often considered terminally ill and are supported by hospice care far less than people who have advanced cancer. Before care at the end of life can be improved for people with non-cancer illnesses, it is important to understand their perspectives about health, illness and expectations related to care at the end of life.