Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients
Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients
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DOI：
10.1056/nejm199909233411306
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发表时间：
1999-09-23
影响因子：
158.5
通讯作者：
Emanuel, LL
中科院分区：
文献类型：
--
作者：
Emanuel, EJ;Fairclough, DL;Emanuel, LL
除了医疗护理外，临终病人通常需要多种类型的帮助，包括交通帮助、护理、家政服务和个人护理。我们在美国随机选择的六个地区采访了身患绝症的成年人和他们的照顾者（五个大都市地区和一个农村县），以确定他们的援助需求是如何得到满足的，以及他们从家庭成员和有偿和志愿护理人员那里获得此类援助的频率。医生估计他们的寿命不到六个月，并且患有除人体免疫缺陷病毒感染或获得性免疫缺陷综合症以外的临床上严重的疾病，都是由他们的医生介绍来参加这项研究的。在1131名合格患者中，988名（87.4%）同意用英语进行详细的面对面访谈，915名合格的初级保健提供者中有893人同意结果988例临终病人中，65岁以上者占59.4%，51.5%为女性;最常见的晚期疾病是癌症（51.8%的患者），其次是心脏病（18.0%）和慢性阻塞性肺病（10.9%）。4%的患者住在疗养院、住院临终关怀医院或医院等机构中;其余的住在私人住宅中。86.8%的病人需要帮助;他们需要交通帮助（62.0%），家政服务（55.2%），护理（28.7%）和个人护理（26.0%）。在护理人员中，72.1%是妇女。96.0%的病例中，初级护理人员是家庭成员;只有4.0%的病例与家庭成员无关。大多数患者完全依赖家人和朋友的帮助。总共有15.5%的病人只依靠有偿援助来获得他们所需的一半以上的护理。志愿者（也就是说，无偿帮助谁不是家庭成员或朋友）提供了不到3%的所有care.Conclusions在我们的调查中的绝症患者，家庭成员，通常是妇女，提供了大部分的援助与非医疗护理。虽然许多人得到了有偿护理人员的帮助，但很少有人得到志愿者的帮助;（N Engl J Med 1999;341：956-63）。(C)1999年，马萨诸塞州医学会。
Background In addition to medical care, dying patients often need many types of assistance, including help with transportation, nursing care, homemaking services, and personal care. We interviewed terminally ill adults and their care givers in six randomly selected areas of the United States (five metropolitan areas and one rural county) to determine how their needs for assistance were met and the frequency with which they received such assistance from family members and paid and volunteer care givers.Methods The patients, whose physicians estimated them to have less than six months to live and who had clinically significant illness other than human immunodeficiency virus infection or the acquired immunodeficiency syndrome, were referred to the study by their physicians. Of the 1131 eligible patients, 988 (87.4 percent) consented to a detailed in-person interview conducted in English, as did 893 of the 915 eligible primary care givers (97.6 percent).Results Of the 988 terminally ill patients, 59.4 percent: were over the age of 65 years, and 51.5 percent were women; The most frequent terminal illness was cancer (in 51.8 percent of the patients), followed by heart disease (18.0 percent) and chronic obstructive pulmonary disease (10.9 percent). Four percent of the patients were in an institution, such as a nursing home, residential hospice, or hospital; the rest were living in a private residence. A need for assistance was reported by 86.8 percent of the patients; they required help with transportation (reported by 62.0 percent), homemaking services (55.2 percent), nursing care (28.7 percent), and personal care (26.0 percent). Of the care givers, 72.1 percent were women. Primary care givers were family members in 96.0 percent of cases; only 4.0 percent were unrelated. Most patients relied completely on family members and friends for assistance. A total of 15.5 percent of patients relied only on paid assistance for more than half of the types of care that they needed. Volunteers (that is, unpaid helpers who were not family members or friends) provided less than 3 percent of all care.Conclusions In our survey of terminally ill patients, family members, usually women, provided the majority of assistance with nonmedical care. Although many people received assistance from paid care givers, very few had assistance from volunteers; (N Engl J Med 1999;341:956-63.) (C) 1999, Massachusetts Medical Society.