End-of Life Care Research Group (B.Q., T.S., K.C., L.V.B., L.D., L.S., J.C.), Vrije Universiteit Brussel and Ghent University, Brussels, Belgium; Compassionate Community Centre of Expertise (COCO) (B.Q., K.C., L.D., J.C.), Vrije Universiteit Brussel, Brussels, Belgium.
End-of Life Care Research Group (B.Q., T.S., K.C., L.V.B., L.D., L.S., J.C.), Vrije Universiteit Brussel and Ghent University, Brussels, Belgium.
J Pain Symptom Manage. 2023 Nov;66(5):529-540.e6. doi: 10.1016/j.jpainsymman.2023.07.003. Epub 2023 Jul 10.
Death and the process of dying have become increasingly medicalized and professionalized. The associated cultural estrangement from death may affect how comfortable we feel about death and dying. This study examines the general public's discomfort with another person's suffering and dying, and whether these feelings are associated with specific personal characteristics or experiences.
Cross-sectional survey in a random sample of people aged 16 or older in four municipalities in Flanders, Belgium (N=4400). We used the self-developed construct Discomfort with someone's suffering and dying. A directed acyclic graph guided the development of a multivariable regression model which explored the effect of different variables on the main outcome measure.
A total of 2008 completed questionnaires were returned (response rate: 45.6%). Average discomfort with someone's suffering and dying was 3.74 (SD = 0.89). Being female or currently mourning a loss were associated with more discomfort. Not being religious, having better knowledge about palliative care, having worked in healthcare, having been with someone else at the time of their death and having been culturally exposed to death and dying were associated with less discomfort.
A considerable level of discomfort is present within the general public about the suffering and dying of others and this may increase social stigma and a tendency to avoid seriously ill people and their social surroundings. Our findings suggest that interventions may help shift this societal discomfort if they incorporate a focus on cultural and experiential exposure and increasing knowledge about palliative care.
死亡和临终过程变得越来越医学化和专业化。与死亡相关的文化疏远可能会影响我们对死亡和临终的舒适感。本研究考察了公众对他人痛苦和死亡的不适，以及这些感受是否与特定的个人特征或经历有关。
在比利时佛兰德斯的四个城市中，对年龄在 16 岁及以上的随机人群（N=4400）进行横断面调查。我们使用自行开发的“对他人痛苦和死亡的不适”构建来进行研究。有向无环图指导了多变量回归模型的开发，该模型探讨了不同变量对主要结果测量的影响。
共收回 2008 份完整的问卷（应答率：45.6%）。平均对他人痛苦和死亡的不适程度为 3.74（SD=0.89）。女性或正在哀悼的人更感到不适。不信仰宗教、对姑息治疗有更好的了解、在医疗保健行业工作、在他人死亡时陪伴他们以及在文化上接触过死亡和临终的人则感到不适的程度较低。
公众对他人的痛苦和死亡存在相当程度的不适，这可能会增加社会污名化和避免重病患者及其社交环境的倾向。我们的研究结果表明，如果干预措施包括关注文化和经验接触以及增加对姑息治疗的了解，那么可能会改变这种社会不适。
