Bretscher M, Rummans T, Sloan J, Kaur J, Bartlett A, Borkenhagen L, Loprinzi C
Department of Psychiatry, Mayo Clinic, Rochester, Minnesota 55905, USA.
Psychosomatics. 1999 Jul-Aug;40(4):309-13. doi: 10.1016/S0033-3182(99)71224-7.
The general public and the medical community often perceive dying patients' quality of life (QOL) as rapidly deteriorating before death. However, with appropriate palliative services, this effect may be positively modified. Objective data are lacking on the true experience of dying from the point of view of the patient that this pilot study begins to address. Patients caregivers, and staff in our hospice program completed questionnaires evaluating the patient's QOL every 2 weeks until the patient's death. This pilot study found that patients QOL was relatively high and stable over time. Primary caregivers rated the patient's QOL lower than patient self-ratings, whereas the hospice staff evaluated the patient's QOL similarly to the patient. Many dying patients suffer and are perceived as having no QOL in the final days by their caregivers. This perception may be modified to maintain one's QOL with the help of palliative medical services, thereby relieving the suffering of those who are actively facing death.
公众和医学界通常认为临终患者的生活质量（QOL）在死亡前会迅速恶化。然而，通过适当的姑息治疗服务，这种影响可能会得到积极改善。从患者角度出发，关于临终真实体验的客观数据较为缺乏，而这项初步研究开始着手解决这一问题。我们临终关怀项目中的患者、护理人员和工作人员每两周完成一次评估患者生活质量的问卷调查，直至患者死亡。这项初步研究发现，患者的生活质量随时间推移相对较高且稳定。主要护理人员对患者生活质量的评分低于患者自评，而临终关怀工作人员对患者生活质量的评估与患者类似。许多临终患者遭受痛苦，且在其护理人员看来，他们在生命的最后几天没有生活质量。借助姑息医疗服务，这种观念可能会得到改变，从而维持患者的生活质量，进而减轻那些积极面对死亡者的痛苦。
