Sahler O J, Frager G, Levetown M, Cohn F G, Lipson M A
Departments of Pediatrics, Psychiatry, Medical Humanities, and Oncology, University of Rochester Medical Center, Rochester, NY 14642-8777, USA.
Pediatrics. 2000 Mar;105(3 Pt 1):575-84. doi: 10.1542/peds.105.3.575.
To identify the opportunities for and barriers to medical education about end-of-life (EOL) care in the pediatric setting.
A working group of pediatric specialists and ethicists was convened at the National Consensus Conference on Medical Education for Care Near the End-of-Life sponsored by the Open Society Institute's Project Death in America and the Robert Wood Johnson Foundation. The charge to the working group was to consider the unique aspects of death in childhood, identify critical educational issues and effective instructional strategies, and recommend institutional changes needed to facilitate teaching about EOL care for children.
Although providing EOL care can be challenging, the cognitive and psychologic skills needed can be taught effectively through well-planned and focused learning experiences. The ultimate goals of such instruction are to provide more humane care to very sick children, enhance bereavement outcomes for their survivors, and develop more confident clinicians. Six specific principles regarding EOL care in the pediatric setting emerged as essential curricular elements that should be taught to all medical care providers to ensure competent patient-centered care. 1) Cognitively and developmentally appropriate communication is most effective. 2) Sharing information with patients helps avoid feelings of isolation and abandonment. 3) The needs of the patient are served when the ethical principles of self-determination and best interests are central to the decision-making process. 4) Minimization of physical and emotional pain and other symptoms requires prompt recognition, careful assessment, and comprehensive treatment. 5) Developing partnerships with families supports them in their caregiving efforts. 6) The personal and professional challenges faced by providers of EOL care deserve to be addressed. These principles actually transcend patient age and can be used to inform medical education about the care of any terminally ill patient. Similarly, these principles of effective communication, ethical decision-making, and attention to the quality of life of patients, families, and providers apply to the care of all children regardless of diagnosis and prognosis. With this in mind, teaching about EOL care does not require a new and separate curriculum, but rather taking better advantage of the many teachable moments provided by caring for a dying patient.
确定儿科临终关怀医学教育的机遇与障碍。
由开放社会研究所的美国死亡项目和罗伯特·伍德·约翰逊基金会主办的全国临终关怀医学教育共识会议召集了一个由儿科专家和伦理学家组成的工作组。工作组的任务是考虑儿童死亡的独特方面，确定关键的教育问题和有效的教学策略，并建议为促进儿童临终关怀教学所需的机构变革。
尽管提供临终关怀具有挑战性，但通过精心规划和有针对性的学习体验，可以有效地教授所需的认知和心理技能。此类教学的最终目标是为重病儿童提供更人道的护理，改善其幸存者的哀伤结局，并培养更自信的临床医生。儿科临终关怀的六项具体原则成为应向所有医疗服务提供者传授的基本课程要素，以确保以患者为中心的胜任护理。1）认知和发育上适当的沟通最有效。2）与患者分享信息有助于避免孤立感和被遗弃感。3）当自决和最大利益等伦理原则成为决策过程的核心时，患者的需求就能得到满足。4）将身体和情感疼痛及其他症状降至最低需要迅速识别、仔细评估和全面治疗。5）与家庭建立伙伴关系有助于他们的护理工作。6）临终关怀提供者面临的个人和职业挑战值得关注。这些原则实际上超越了患者年龄，可用于为任何绝症患者的护理医学教育提供信息。同样，这些有效的沟通、伦理决策以及关注患者、家庭和提供者生活质量的原则适用于所有儿童，无论其诊断和预后如何。考虑到这一点，临终关怀教学不需要全新的单独课程，而是更好地利用照顾临终患者所提供的许多可用于教学的时机。
