Rabkin Judith G, Albert Steven M, Tider Toby, Del Bene Maura L, O'Sullivan Ita, Rowland Lewis P, Mitsumoto Hiroshi
Department of Psychiatry, Columbia University Medical Center, and New York State Psychiatric Institute, 1051 Riverside Drive, New York, NY 10032, USA.
Amyotroph Lateral Scler. 2006 Jun;7(2):86-95. doi: 10.1080/14660820500515021.
We sought to characterize ALS patients who opt for tracheostomy and long-term mechanical ventilation (LTMV) and compare them with respect to medical, psychiatric, and psychosocial measures to patients who declined tracheostomy and died. We studied 72 ALS patients who were identified as hospice-eligible. They were assessed monthly until the endpoint of death or tracheostomy. LTMV patients continued to be followed for up to 55 months. The spouse or other caregiver was similarly interviewed and followed. Medical and psychiatric evaluations were conducted, in addition to self-reported depressive symptoms, future orientation, attitudes about hastened death, religious beliefs, and quality of life. Global cognitive capacity was assessed by caregivers. Fourteen patients chose LTMV; 58 died without LTMV. At study entry, those who later chose LTMV were younger, more had young children, had more education, and higher household incomes on average. Although their physical conditions were similar, they reported higher levels of optimism including belief in imminent cure, and more positive appraisals of their ability to function in daily life, their physical health and overall life satisfaction. At study entry, none who later chose LTMV were clinically depressed, compared to 26% of those who later refused LTMV, and their mean scores on the Beck Depression Inventory were in the "not depressed" range while the mean for patients who later died was in the "probable depression" range. Fourteen percent of patients who later chose LTMV were reported by caregivers to have had at least mild cognitive problems, compared to 49% of those who later died. After an average of 33 months on LTMV, only about half retained high levels of optimism and enjoyment of daily life, independent of residence (home vs. facility). Two patients expressed interest in hastening death but none had asked to terminate ventilation despite disease progression. However, half identified future circumstances that would render life intolerable. At last contact with caregivers, only one LTMV patient was reported to have major cognitive impairment. While reporting substantial emotional burden after LTMV, most but not all spousal caregivers continued to express satisfaction with care-giving. Our findings suggest that the choice of LTMV was not about desperation (although it may involve unrealistic expectations of cure by some), ignorance, or inability to make wishes clear during a chaotic dying period. Rather, LTMV choice was consistent with a sustained sense that life was worth living in any way possible, at least for some time and within certain boundaries. ALS clinicians will need to recognize this motivation and provide appropriate clinical education to both patient and family.
我们试图对选择气管切开术和长期机械通气（LTMV）的肌萎缩侧索硬化症（ALS）患者进行特征描述，并在医学、精神和社会心理指标方面，将他们与拒绝气管切开术并已死亡的患者进行比较。我们研究了72名符合临终关怀条件的ALS患者。每月对他们进行评估，直至死亡或进行气管切开术这一终点。接受LTMV的患者持续随访长达55个月。对其配偶或其他照料者进行类似的访谈和随访。除了自我报告的抑郁症状、未来取向、对加速死亡的态度、宗教信仰和生活质量外，还进行了医学和精神评估。照料者对整体认知能力进行评估。14名患者选择了LTMV；58名未接受LTMV而死亡。在研究开始时，那些后来选择LTMV的患者更年轻，更多人有年幼子女，受教育程度更高，平均家庭收入也更高。尽管他们的身体状况相似，但他们报告的乐观程度更高，包括相信即将治愈，对自己在日常生活中的功能能力、身体健康和总体生活满意度有更积极的评价。在研究开始时，后来选择LTMV的患者中无人临床抑郁，而后来拒绝LTMV的患者中有26%临床抑郁，他们在贝克抑郁量表上的平均得分处于“未抑郁”范围，而后来死亡的患者的平均得分处于“可能抑郁”范围。照料者报告称，后来选择LTMV的患者中有14%至少有轻度认知问题，而后来死亡的患者中有49%有轻度认知问题。在接受LTMV平均33个月后，只有约一半的患者保持了高度的乐观情绪和对日常生活的享受，与居住地点（家中还是机构）无关。两名患者表示有加速死亡的意愿，但尽管疾病进展，无人要求终止通气。然而，有一半的患者指出了未来会使生活无法忍受的情况。在与照料者的最后一次接触中，据报告只有一名接受LTMV的患者有严重认知障碍。虽然大多数（但并非所有）配偶照料者报告在患者接受LTMV后有很大的情感负担，但他们仍继续表示对照料感到满意。我们的研究结果表明，选择LTMV并非出于绝望（尽管可能有一些患者对治愈抱有不切实际的期望）、无知或在混乱的临终阶段无法明确表达意愿。相反，选择LTMV与一种持续的感觉一致，即无论如何生活都是值得的，至少在一段时间内且在一定范围内是这样。ALS临床医生需要认识到这种动机，并为患者及其家人提供适当的临床教育。
