Rushton Cynda Hylton
The Johns Hopkins University and Children's Center, Baltimore, MD 21250, USA.
J Pediatr Nurs. 2005 Oct;20(5):311-25. doi: 10.1016/j.pedn.2005.03.003.
Recent studies highlight the need for an integrated model for palliative and end-of-life pediatric care. About 55,000 children die each year in the United States and, on any given day, about 8,600 children could benefit from care that acknowledges their limited life expectancy and severity of illness. Two case studies of children illustrate different approaches-one that aggressively applies all possible technologies to maximize chances of survival and another that focuses on the patient's overall quality of life and on healing rather than curing. The cases highlight characteristics of an integrated model of palliative care to address clinical, moral, and ethical uncertainties. This model integrates being with doing, provides for developing attunement and presence as capacities for being with children and their parents, and addresses challenges in the healthcare environment. Strategies for integrating palliative care into pediatric practice include listening, fostering respect for the child and parents across the organization, nurturing collaborative connections, managing uncertainty, tolerating ambiguity, making peace with conflict, and committing to self-care. Every pediatric nurse can play a role in making the vision of palliative care a reality integrated into the fabric of pediatric practice.
近期研究强调了建立姑息治疗和儿童临终关怀综合模式的必要性。在美国，每年约有55000名儿童死亡，而且在任何一天，约有8600名儿童可以从承认其预期寿命有限和病情严重程度的护理中受益。两个儿童案例研究说明了不同的方法——一种是积极应用所有可能的技术以最大化生存机会，另一种则侧重于患者的整体生活质量以及治愈而非治疗。这些案例突出了姑息治疗综合模式的特点，以应对临床、道德和伦理上的不确定性。该模式将陪伴与行动相结合，培养陪伴能力和在场感作为陪伴儿童及其父母的能力，并应对医疗环境中的挑战。将姑息治疗融入儿科实践的策略包括倾听、在整个机构中培养对儿童及其父母的尊重、建立合作关系、应对不确定性、容忍模糊性、与冲突和解以及致力于自我关怀。每一位儿科护士都可以在使姑息治疗愿景成为融入儿科实践结构的现实中发挥作用。
