NIH Consens State Sci Statements. 2004;21(3):1-26.
To provide health care providers, patients, and the general public with a responsible assessment of currently available data on improving end-of-life care.
A non-DHHS, non-advocate ten-member panel representing the fields of geriatrics, psychiatry, economics, health policy, nursing, philosophy, epidemiology, and oncology. In addition, 19 experts from fields related to the subject matter of the conference presented data to the panel and to the conference audience.
Presentations by experts and a systematic review of the medical literature prepared by the Southern California Evidence-based Practice Center, through the Agency for Healthcare Research and Quality's Evidence-based Practice Centers Program. Scientific evidence was given precedence over clinical anecdotal experience.
Answering pre-determined questions, the panel drafted its statement based on scientific evidence presented in open forum and on the published scientific literature. The draft statement was read in its entirety on the final day of the conference and circulated to the audience for comment. The panel then met in executive session to consider the comments received, and released a revised statement later that day at http://www.consensus.nih.gov. This statement is an independent report of the panel and is not a policy statement of the NIH or the Federal Government. A final copy of this statement is available, along with other recent conference statements, at the same web address of http://www.consensus.nih.gov.
(1) Circumstances surrounding end of life are poorly understood, leaving many Americans to struggle through this life event. (2) The dramatic increase in the number of older adults facing the need for end-of-life care warrants development of a research infrastructure and resources to enhance that care for patients and their families. (3) Ambiguity surrounding the definition of end-of-life hinders the development of science, delivery of care, and communications between patients and providers. (4) Current end-of-life care includes some untested interventions that need to be validated. (5) Subgroups of race, ethnicity, culture, gender, age, and disease states experience end-of-life care differently, and these differences remain poorly understood. (6) Valid measures exist for some aspects of end of life; however, measures have not been used consistently or validated in diverse settings or with diverse groups. (7) End-of-life care is often fragmented among providers and provider settings, leading to a lack of continuity of care and impeding the ability to provide high-quality, interdisciplinary care. (8) Enhanced communication among patients, families, and providers is crucial to high-quality end-of-life care. (9) The design of the current Medicare hospice benefit limits the availability of the full range of interventions needed by many persons at the end of life.
为医疗保健提供者、患者及普通公众提供对当前有关改善临终关怀的现有数据的负责任评估。
一个由非美国卫生与公众服务部（DHHS）、非倡导者组成的十名成员小组，代表老年医学、精神病学、经济学、卫生政策、护理、哲学、流行病学和肿瘤学领域。此外，来自与会议主题相关领域的19位专家向小组和会议听众提供了数据。
专家的陈述以及南加州循证实践中心通过医疗保健研究与质量局的循证实践中心计划编写的医学文献系统综述。科学证据优先于临床轶事经验。
小组回答预先确定的问题，根据公开论坛上提出的科学证据和已发表的科学文献起草其声明。声明草案在会议的最后一天全文宣读，并分发给听众征求意见。然后，小组举行执行会议审议收到的意见，并于当天晚些时候在http://www.consensus.nih.gov上发布了一份修订声明。本声明是小组的独立报告，并非美国国立卫生研究院（NIH）或联邦政府的政策声明。本声明的最终副本以及其他近期会议声明可在同一网址http://www.consensus.nih.gov上获取。
（1）人们对临终时的情况了解不足，导致许多美国人在这一人生事件中苦苦挣扎。（2）面临临终关怀需求的老年人数量急剧增加，这就需要发展研究基础设施和资源，以加强对患者及其家人的关怀。（3）临终定义的模糊性阻碍了科学发展、护理提供以及患者与提供者之间的沟通。（4）当前的临终关怀包括一些未经检验的干预措施，需要进行验证。（5）种族、民族、文化、性别、年龄和疾病状态等亚组在临终关怀方面的体验各不相同，而这些差异仍未得到充分理解。（6）对于临终的某些方面存在有效的衡量标准；然而，这些标准在不同环境或不同群体中并未得到一致使用或验证。（7）临终关怀在提供者和提供者环境之间往往分散，导致缺乏护理连续性，并妨碍提供高质量的跨学科护理。（8）加强患者、家庭和提供者之间的沟通对于高质量的临终关怀至关重要。（9）当前医疗保险临终关怀福利的设计限制了许多人在生命末期所需的全方位干预措施的可及性。
