Family perspectives on end-of-life care at the last place of care
Family perspectives on end-of-life care at the last place of care
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DOI：
10.1001/jama.291.1.88
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发表时间：
2004-01-07
影响因子：
120.7
通讯作者：
Mor, V
中科院分区：
文献类型：
--
作者：
Teno, JM;Clarridge, BR;Mor, V
背景 在过去的一个世纪中，疗养院和医院越来越多地成为死亡场所，但没有任何国家研究检验机构环境中临终关怀与在家中死亡相比的充分性或质量。目的 评估美国在家中和机构环境中的临终经历。设计、环境和参与者 对代表 1578 名死者的家庭成员或其他知识丰富的知情人进行死亡率跟踪调查，并使用两阶段概率样本来估计临终关怀结果2000 年，美国有 197 万人死于慢性病。通过电话向受访者询问患者在最后一个护理地点的经历，患者在该护理场所停留超过 48 小时。主要结果衡量以患者和家庭为中心的临终护理结果，包括医护人员是否 (1) 为临终者提供所需的身体舒适和情感支持，(2) 支持共同决策，(3) 尊重临终者，(4)照顾家庭的情感需求，(5)提供协调的照顾。结果 1578 名死者中的 1059 名 (67.1%)，最后的照顾地点是机构。在该样本所代表的 519 名（32.9%）在家死亡患者中，198 名（38.2%）没有接受护理服务； 65 人（12.5%）有家庭护理服务，256 人（49.3%）有家庭临终关怀服务。大约四分之一的疼痛或呼吸困难患者没有得到充分的治疗，四分之一的患者表示对医生沟通存在担忧。在家庭保健机构、疗养院或医院接受护理的受访者中，超过三分之一的人表示对患者的情感支持不足和/或对家庭情感支持有一种或多种担忧，而接受家庭临终关怀服务的受访者中约有五分之一。与在医院或家庭临终关怀服务机构接受护理的居民相比，疗养院居民在临终时始终受到尊重的可能性较小（分别为 68.2%、79.6% 和 96.2%）。接受临终关怀服务的患者家属对整体护理质量更加满意：70.7% 的患者将护理评价为“优秀”，而在机构环境或家庭医疗服务中死亡的患者比例不到 50%（P
Context Over the past century, nursing homes and hospitals increasingly have become the site of death, yet no national studies have examined the adequacy or quality of end-of-life care in institutional settings compared with deaths at home.Objective To evaluate the US dying experience at home and in institutional settings.Design, Setting, and Participants Mortality follow-back survey of family members or other knowledgeable informants representing 1578 decedents, with a 2-stage probability sample used to estimate end-of-life care outcomes for 1.97 million deaths from chronic illness in the United States in 2000. Informants were asked via telephone about the patient's experience at the last place of care at which the patient spent more than 48 hours.Main Outcome Measures Patient- and family-centered end-of-life care outcomes, including whether health care workers (1) provided the desired physical comfort and emotional support to the dying person, (2) supported shared decision making, (3) treated the dying person with respect, (4) attended to the emotional needs of the family, and (5) provided coordinated care.Results For 1059 of 1578 decedents (67.1%), the last place of care was an institution. Of 519 (32.9%) patients dying at home represented by this sample, 198 (38.2%) did not receive nursing services; 65 (12.5%) had home nursing services, and 256 (49.3%) had home hospice services. About one quarter of all patients with pain or dyspnea did not receive adequate treatment, and one quarter reported concerns with physician communication. More than one third of respondents cared for by a home health agency, nursing home, or hospital reported insufficient emotional support for the patient and/or 1 or more concerns with family emotional support, compared with about one fifth of those receiving home hospice services. Nursing home residents were less likely than those cared for in a hospital or by home hospice services to always have been treated with respect at the end of life (68.2% vs 79.6% and 96.2%, respectively). Family members of patients receiving hospice services were more satisfied with overall quality of care: 70.7% rated care as "excellent" compared with less than 50% of those dying in an institutional setting or with home health services (P