Limburg S D, Pols J, Limburg M
Academisch Medisch Centrum-Universiteit van Amsterdam, afd. Huisartsgeneeskunde, sectie Medische Ethiek, Amsterdam.
Ned Tijdschr Geneeskd. 2018;161:D2048.
A 57-year-old man developed a locked-in state due to a brain stem stroke. He communicated through eye movements. The team suggested treatment should be discontinued, as there was no perspective of improvement. The family was very upset because they experienced sufficient quality of life. We investigated what 'quality of life' means. The literature shows that severely ill and completely care-dependent patients may experience high quality of life; this is called the disability paradox. Patients and families evaluate quality of life by looking for positive things to live for. Some quality-of-life tests, however, understand quality of life as 'functionality'. Healthy people evaluate the situation of people living with handicaps more negatively than the handicapped themselves do. Practitioners may overlook the instability of patients' evaluations: responses and situations may shift. Quality of life as an outcome in clinical trials may be different for individual patients. These insights may improve communication.
一名57岁男性因脑干中风陷入闭锁状态。他通过眼球运动进行交流。由于没有改善的希望，医疗团队建议停止治疗。患者家属非常难过，因为他们认为患者仍有足够的生活质量。我们调查了“生活质量”的含义。文献表明，重症且完全依赖护理的患者可能拥有较高的生活质量；这被称为残疾悖论。患者及其家属通过寻找生活中的积极事物来评估生活质量。然而，一些生活质量测试将生活质量理解为“功能状态”。健康人对残疾人生活状况的评价比残疾人自身更为负面。医生可能会忽视患者评价的不稳定性：反应和情况可能会发生变化。临床试验中作为结果的生活质量对于个体患者可能有所不同。这些见解可能会改善沟通。
