Department of Public and Occupational Health, Expertise Center for Palliative Care, VU University Medical Center, EMGO+Institute, van der Boechorststraat 7, 1081 BT Amsterdam, The Netherlands.
BMC Fam Pract. 2013 Dec 28;14:201. doi: 10.1186/1471-2296-14-201.
Primary care physicians provide palliative home care. In cancer patients dying at home in the Netherlands (45% of all cancer patients) euthanasia in about one out of every seven patients indicates unbearable suffering. Symptom prevalence, relationship between intensity of symptoms and unbearable suffering, evolvement of symptoms and unbearability over time and quality of unbearable suffering were studied in end-of-life cancer patients in primary care.
44 general practitioners during three years recruited cancer patients estimated to die within six months. Every two months patients quantified intensity as well as unbearability of 69 symptoms with the State-of-Suffering-V (SOS-V). Also overall unbearable suffering was quantified. The five-point rating scale ranged from 1 (not at all) to 5 (hardly can be worse). For symptoms assessed to be unbearable the nature of the suffering was additionally investigated with open-ended questions. The final interviews were analyzed; for longitudinal evolvement also the pre-final interviews were analyzed. Symptom intensity scores 4 and 5 were defined to indicate high intensity. Symptom unbearability scores 4 and 5 were defined to indicate unbearable suffering. Two raters categorized the qualitative descriptions of unbearable suffering.
Out of 148 requested patients 51% participated; 64 patients were followed up until death. The SOS-V was administered at least once in 60 patients (on average 30 days before death) and at least twice in 33 patients. Weakness was the most frequent unbearable symptom (57%). Pain was unbearable in 25%. Pain, loss of control over one's life and fear of future suffering frequently were unbearable (89-92%) when symptom intensity was high. Loss of control over one's life, vomiting and not being able to do important things frequently were unbearable (52-80%) when symptom intensity was low. Unbearable weakness significantly increased between pre-final and final interview. Physical suffering, loss of meaning, loss of autonomy, experiencing to be a burden, fear of future suffering and worrying more frequently occurred in patients suffering unbearably overall.
Weakness was the most prevalent unbearable symptom in an end-of-life primary care cancer population. Physical suffering, loss of meaning and loss of autonomy more frequently occurred in patients who suffered unbearably overall.
初级保健医生提供姑息性家庭护理。在荷兰，在家中死亡的癌症患者（占所有癌症患者的 45%）中，约每 7 名患者中就有 1 名接受安乐死，这表明他们承受着无法忍受的痛苦。本研究旨在探讨初级保健中临终癌症患者的症状普遍性、症状强度与无法忍受痛苦之间的关系、症状随时间的演变及其不可忍受性以及不可忍受痛苦的质量。
在三年期间，44 名全科医生招募了预计在六个月内死亡的癌症患者。每两个月，患者使用状态痛苦量表（SOS-V）评估 69 种症状的强度和不可忍受性。此外，还评估了整体不可忍受痛苦的程度。五级评分范围从 1（根本没有）到 5（几乎无法更糟）。对于被评估为无法忍受的症状，还使用开放式问题进一步调查了痛苦的性质。对最终访谈进行了分析；对于纵向演变，也对预最终访谈进行了分析。将症状强度评分 4 和 5 定义为高强度。将症状不可忍受性评分 4 和 5 定义为无法忍受的痛苦。两名评估者对无法忍受痛苦的定性描述进行了分类。
在 148 名要求的患者中，有 51%的患者参与；64 名患者随访至死亡。在至少 60 名患者（平均在死亡前 30 天）中进行了至少一次 SOS-V 评估，在至少 33 名患者中进行了两次评估。虚弱是最常见的无法忍受的症状（57%）。当疼痛强度高时，疼痛（25%）、对生活失去控制和对未来痛苦的恐惧（89-92%）经常是无法忍受的。当疼痛强度低时，对生活失去控制、呕吐和无法做重要事情经常是无法忍受的（52-80%）。无法忍受的虚弱在预最终和最终访谈之间显著增加。在总体上感到无法忍受痛苦的患者中，身体痛苦、失去意义、失去自主性、感到是负担、对未来痛苦的恐惧和更加担忧更频繁地出现。
虚弱是终末期初级保健癌症患者中最常见的无法忍受的症状。在总体上感到无法忍受痛苦的患者中，身体痛苦、失去意义和失去自主性更频繁地出现。
