Department of Neurology, University Medical Centre Utrecht, Utrecht, The Netherlands.
J Neurol. 2010 Jul;257(7):1192-8. doi: 10.1007/s00415-010-5474-y. Epub 2010 Feb 11.
In The Netherlands, relatively more patients (20%) with amyotrophic lateral sclerosis (ALS) die due to euthanasia or physician-assisted suicide (EAS) compared with patients with cancer (5%) or heart failure (0.5%). We wanted to gain insight into the reasons for ALS patients requesting EAS and compare these with the reasons of cancer and heart failure patients. Knowing disease-specific reasons for requesting EAS may improve palliative care in these vulnerable patients. The data used in the present study were derived from the Support and Consultation in Euthanasia in The Netherlands (SCEN) evaluation study. This study provided consultation reports and questionnaires filled out by the attending physicians from 3,337 consultations conducted by SCEN physicians in situations where a patient requested EAS. For this study we selected data on all ALS patients (n = 51), all heart failure patients (n = 61), and a random sample of 73 cancer patients. The most frequently reported reasons for unbearable suffering were: fear of suffocation (45%) and dependency (29%) in ALS patients, pain (46%) and fatigue (28%) in cancer patients, and dyspnea (52%) and dependency (37%) in heart failure patients. Somatic complaints were reported more frequently as a reason for EAS by cancer patients [odds ratio (OR) 0.20, 95% confidence interval (CI) 0.09-0.46] and heart failure patients [OR 0.16, 95% CI 0.05-0.46] than by ALS patients. ALS patients should be helped in a timely fashion to cope with psychosocial symptoms, e.g., by informing them about the low risk of suffocation in the terminal phase and the possible means of preventing this.
在荷兰,与癌症(5%)或心力衰竭(0.5%)患者相比,患有肌萎缩侧索硬化症(ALS)的患者中相对更多的患者(20%)因安乐死或医生协助自杀(EAS)而死亡。我们希望深入了解 ALS 患者要求 EAS 的原因,并将其与癌症和心力衰竭患者的原因进行比较。了解 EAS 请求的特定疾病原因可能会改善这些脆弱患者的姑息治疗。本研究中使用的数据来自荷兰安乐死支持和咨询(SCEN)评估研究。该研究提供了由 SCEN 医生进行的 3337 次咨询中的患者请求 EAS 时主治医生填写的咨询报告和问卷。为了这项研究,我们选择了所有 ALS 患者(n=51),所有心力衰竭患者(n=61)和随机抽取的 73 名癌症患者的数据。无法忍受的痛苦的最常见报告原因包括:ALS 患者的窒息恐惧(45%)和依赖(29%),癌症患者的疼痛(46%)和疲劳(28%),心力衰竭患者的呼吸困难(52%)和依赖(37%)。癌症患者[比值比(OR)0.20,95%置信区间(CI)0.09-0.46]和心力衰竭患者[OR 0.16,95% CI 0.05-0.46]报告 EAS 的躯体症状比 ALS 患者更频繁。应及时帮助 ALS 患者应对心理社会症状,例如,告知他们在终末期窒息的风险较低以及可能的预防措施。