Cicero-Oneto Carlo Egysto, Valdez-Martinez Edith, Bedolla Miguel
Haemato-Oncology Department Hospital Infantil de Mexico "Federico Gómez", National Health Institute of the Secretariat of Health, Mexico City, Mexico.
Health Research Council of the Mexican Institute of Social Security, Centro Medico Nacional Siglo XXI, Av. Cuauhtemoc #330. Col. Doctores, C.P. 06720 Ciudad de Mexico, Mexico City, Mexico.
BMC Med Ethics. 2017 Dec 11;18(1):74. doi: 10.1186/s12910-017-0231-8.
The world literature shows that empirical research regarding the process of decision-making when cancer in adolescents is no longer curable has been conducted in High-income, English speaking countries. The objective of the current study was to explore in-depth and to explain the decision-making process from the perspective of Mexican oncologists, parents, and affected adolescents and to identify the ethical principles that guide such decision-making.
Purposive, qualitative design based on individual, fact-to-face, semi-structured, in-depth interviews. The participants were thirteen paediatric oncologists, 13 parents or primary carers, and six adolescents with incurable cancer. The participants were recruited from the paediatric oncology services of three national tertiary-care medical centres in Mexico City.
The oncologists stated that they broach the subject of palliative management when they have determined that curative treatment has failed. Respect for autonomy was understood as the assent of the parent/adolescent to what the oncologist determined to be in the best interest of the adolescent. The oncologists thought that the adolescent should be involved in the decision-making. They also identified the ability to count on a palliative care clinic or service as an urgent need. For the parents, it was essential that the oncologist be truly interested in their adolescent child. The parents did not consider it necessary to inform the child about impending death. The adolescents stated that the honesty of their oncologists was important; however, several of them opted for a passive role in the decision-making process.
The findings of this study evidence that to achieve good medical practice in low-middle income countries, like Mexico, it is urgent to begin effective implementation of palliative care, together with appropriate training and continuing education in the ethics of clinical practice.
世界文献表明,关于青少年癌症无法治愈时决策过程的实证研究是在高收入、讲英语的国家进行的。本研究的目的是从墨西哥肿瘤学家、父母和受影响青少年的角度深入探讨并解释决策过程,并确定指导此类决策的伦理原则。
基于个体面对面的半结构化深度访谈的目的抽样定性设计。参与者包括13名儿科肿瘤学家、13名父母或主要照顾者以及6名患有无法治愈癌症的青少年。参与者从墨西哥城三个国家三级医疗中心的儿科肿瘤服务部门招募。
肿瘤学家表示,当他们确定治愈性治疗失败时,会提出姑息治疗的话题。尊重自主权被理解为父母/青少年同意肿瘤学家认为符合青少年最佳利益的决定。肿瘤学家认为青少年应该参与决策。他们还确定迫切需要依靠姑息治疗诊所或服务。对父母来说,肿瘤学家真正关心他们的青少年孩子至关重要。父母认为没有必要告知孩子即将死亡的消息。青少年表示肿瘤学家的诚实很重要;然而,他们中的一些人在决策过程中选择了被动角色。
本研究结果证明,在墨西哥这样的中低收入国家,要实现良好的医疗实践,迫切需要开始有效实施姑息治疗,并开展临床实践伦理方面的适当培训和继续教育。