接受家庭肠外营养患者预先指示的普及程度和内容
家庭肠外营养在许多疾病状态中被用于维持生命的治疗，包括短肠综合征、肠外瘘和运动障碍。患者接受家庭肠外营养及其整体健康状态有改变时，伦理问题可能随之出现。
预先指示（又称：生前预嘱、预立医嘱、预设医疗指示、医护事前指示、个人意愿）是指有决定能力的个人事先书写的文书，在其中说明若丧失自我表达能力时希望接受什么样的医疗护理，包括是否接受镇痛药、抗生素治疗、饲管进食、肠外营养、心肺复苏、气管插管、透析等。通常与一系列相关法律文书（如遗嘱、财务安排、授权书、指定代理人等）共同拟定签署，并授权指定代理人在自身丧失表达意愿能力（如昏迷、植物人状态、阿尔茨海默病、重度精神分裂等）的情况下，全权对财务、医护、衣食住行、后事等做出安排。
为了确定接受家庭肠外营养患者的预先医疗计划程度和预先指示应用，美国梅奥医院（位于明尼苏达州罗彻斯特市）对2003年1月1日～2012年12月31日初次接受家庭肠外营养的成年患者病例进行了回顾性调查，从而明确这些患者进行预先指示的普及程度及内容。
结果发现，共有537例患者符合纳入标准。接受家庭肠外营养的平均起始年龄为52.8±15.2岁，其中210例（39%）为男性患者。共有159例（30%）患者有预先指示。许多病例都提到了具体的延长生命方法：心肺复苏术44例（28%），机械通气43例（27%）以及血液透析19例（12%）。几乎一半病例提到了疼痛控制、舒缓措施、家庭肠外营养终末期措施，分别为78例（49%）、65例（41%）、76例（48%）。许多病例中还提到了关于终末期护理概述（不要“孤注一掷的措施”）。明确强调终末期措施的家庭肠外营养患者比例（48%）高于进行其他生命支持如心脏装置的患者。主要诊断或家庭肠外营养适应证与患者是否有预先指示无相关性（P=0.07和0.46）。
因此，虽然几乎三分之一的患者有预先指示，但是其中不到一半明确提到家庭肠外营养，提示应该鼓励这类患者进行明确强调家庭肠外营养终末期措施的预先指示。
JPEN J Parenter Enteral Nutr. 2016;40(3):399-404.
Prevalence and Contents of Advance Directives in Patients Receiving Home Parenteral Nutrition.
Mayo Clinic, Rochester, Minnesota.
BACKGROUND: Ethical issues may arise with patients who receive home parenteral nutrition (HPN) and have a change in their overall health status. We sought to determine the extent of advance care planning and the use of advance directives (ADs) by patients receiving HPN.
MATERIALS AND METHODS: Retrospective review of the medical records of adult patients newly started on HPN at the Mayo Clinic, Rochester, Minnesota, between January 1, 2003, and December 31, 2012, to determine the prevalence and contents of their ADs.
RESULTS: A total of 537 patients met the inclusion criteria. Mean (SD) age at commencement of HPN was 52.8 (15.2) years, and 39% (n = 210) were men. Overall, 159 patients (30%) had ADs. Many mentioned specific life-prolonging treatments: cardiopulmonary resuscitation (44 [28%]), mechanical ventilation (43 [27%]), and hemodialysis (19 [12%]). Almost half mentioned pain control (78 [49%]), comfort measures (65 [41%]), and end-of-life management of HPN (76 [48%]). Many also contained general statements about end-of-life care (no "heroic measures"). The proportion specifically addressing end-of-life management of HPN (48%) was much higher than that previously reported in other populations with other life-supporting care such as cardiac devices. The primary diagnosis or the indication for HPN was not correlated with whether or not the patient had an AD (P = .07 and .46, respectively).
CONCLUSION: Although almost one-third of the patients had an AD, less than half specifically mentioned HPN in it, which suggests that such patients should be encouraged to execute an AD that specifically addresses end-of-life management of HPN.
KEYWORDS: advance directives; end-of-life care; ethics; parenteral nutrition
PMID: 25096547
DOI: 10.1177/0148607114544323
