Teno Joan M, Clarridge Brian R, Casey Virginia, Welch Lisa C, Wetle Terrie, Shield Renee, Mor Vincent
Center for Gerontology and Health Care Research, Brown Medical School, Providence, RI, USA.
JAMA. 2004 Jan 7;291(1):88-93. doi: 10.1001/jama.291.1.88.
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.
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.
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.
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<.001).
Many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect. Family members of decedents who received care at home with hospice services were more likely to report a favorable dying experience.
在过去的一个世纪里，养老院和医院越来越成为死亡的场所，但与在家中死亡相比，尚无全国性研究考察机构环境下临终关怀的充分性或质量。
评估美国在家中和机构环境中的临终体验。
设计、设置和参与者：对代表1578名死者的家庭成员或其他知情者进行死亡率随访调查，采用两阶段概率抽样来估计2000年美国197万例慢性病死亡的临终关怀结果。通过电话询问知情者关于患者在其最后接受护理超过48小时的场所的体验。
以患者和家庭为中心的临终关怀结果，包括医护人员是否(1)为临终患者提供了所需的身体舒适和情感支持，(2)支持共同决策，(3)尊重临终患者，(4)关注患者家庭的情感需求，以及(5)提供协调的护理。
1578名死者中有1059名(67.1%)最后接受护理的场所是机构。在该样本所代表的519名(32.9%)在家中死亡的患者中，198名(38.2%)未接受护理服务；65名(12.5%)接受了家庭护理服务，256名(49.3%)接受了家庭临终关怀服务。所有疼痛或呼吸困难患者中约四分之一未得到充分治疗，四分之一报告对与医生沟通存在担忧。与接受家庭临终关怀服务的患者中约五分之一相比，接受家庭健康机构、养老院或医院护理的受访者中有超过三分之一报告患者情感支持不足和/或对家庭情感支持存在一个或多个担忧。养老院居民在生命末期始终受到尊重的可能性低于在医院接受护理或接受家庭临终关怀服务的居民(分别为68.2%、79.6%和96.2%)。接受临终关怀服务患者的家庭成员对总体护理质量更满意：70.7%将护理评为“优秀”，而在机构环境中死亡或接受家庭健康服务的患者中这一比例不到50%(P<0.001)。
许多在机构中死亡的人在症状缓解、与医生沟通、情感支持和受到尊重方面存在未满足的需求。在家中接受临终关怀服务的死者家庭成员更有可能报告良好的临终体验。
