Pousset Geert, Bilsen Johan, De Wilde Joke, Benoit Yves, Verlooy Joris, Bomans An, Deliens Luc, Mortier Freddy
Bioethics Institute Ghent, Ghent University Hospital, Ghent University, Ghent, Belgium.
Pediatrics. 2009 Dec;124(6):e1142-8. doi: 10.1542/peds.2009-0621.
The present study aimed to investigate the attitudes of adolescent cancer survivors toward end-of-life decisions with life-shortening effects, including nontreatment decisions (NTDs), intensified alleviation of pain and symptoms (APS), and euthanasia, and the influence of illness experience on these attitudes.
Adolescent cancer survivors were interviewed with a structured questionnaire using hypothetical case descriptions. The results were compared with a study of 1769 adolescents without experience of chronic illness.
Eighty-three adolescents, 11 to 18 years of age, were interviewed. In terminal situations, 70% to 90% found requests for NTDs acceptable, 84% requests for APS, and 57% to 64% requests for euthanasia. Requests for end-of-life decisions were less acceptable in nonterminal situations, where 28% found requests for NTDs acceptable, 39% to 47% requests for APS, and 11% to 21% requests for euthanasia. Frequently cited reasons for holding back physicians from administering a lethal drug to a child were the child not being well informed about his or her condition (92%) and the parents' opinion not being asked (92%). Compared with adolescents without experience with chronic illness, cancer survivors were more accepting toward requests for NTDs and APS in terminal situations.
Adolescent cancer survivors, like other adolescents, want to be involved in medical decision-making at the end of life. They value autonomous decision-making, without excluding parents from the process. The experience of living through a life-threatening illness can alter adolescents' attitudes toward requests for NTDs and APS.
本研究旨在调查青少年癌症幸存者对具有缩短生命效果的临终决策的态度，包括不治疗决策（NTDs）、强化疼痛和症状缓解（APS）以及安乐死，以及疾病经历对这些态度的影响。
采用结构化问卷，通过假设病例描述对青少年癌症幸存者进行访谈。将结果与一项针对1769名无慢性病经历青少年的研究进行比较。
对83名11至18岁的青少年进行了访谈。在终末期情况下，70%至90%的人认为NTDs请求是可以接受的，84%的人认为APS请求可以接受，57%至64%的人认为安乐死请求可以接受。在非终末期情况下，临终决策请求的可接受性较低，其中28%的人认为NTDs请求可以接受，39%至47%的人认为APS请求可以接受，11%至21%的人认为安乐死请求可以接受。经常被提及的阻碍医生给儿童使用致命药物的原因是儿童对自己的病情了解不足（92%）以及未征求父母的意见（92%）。与无慢性病经历的青少年相比，癌症幸存者在终末期情况下对NTDs和APS请求的接受度更高。
青少年癌症幸存者与其他青少年一样，希望参与临终医疗决策。他们重视自主决策，并不排除父母参与这一过程。经历危及生命的疾病可以改变青少年对NTDs和APS请求的态度。
