Toce Suzanne, Collins Mary Ann
Saint Louis University School of Medicine, Medical Director and Primary Investigator FOOTPRINTS, SSM Cardinal Glennon Children's Hospital, St. Louis, Missouri 63104-1095, USA.
J Palliat Med. 2003 Dec;6(6):989-1000. doi: 10.1089/109662103322654910.
Little is known about the optimal context in which to provide care for the more than 53,000 children who die each year in the United States. Poor training in pediatric palliative care contributes to care that is often fragmented and may neglect the physical, psychosocial, and spiritual needs of the child and family. Pediatric hospice care is frequently not available or not chosen by the family or health care providers. In response to a critical need to move beyond the disease oriented, hospital-based model with a lack of continuity between hospital and community-based medical services, we developed FOOTPRINTS, an innovative program of advanced care planning and care coordination. A continuity physician directs the treatment plan regardless of site of care. Staff members coordinate follow up and communication among hospital and community-based care providers. Spiritual support continues through bereavement. Education in the hospital and community supports provision of excellent palliative care by current providers. Satisfaction with this model of care has been high. More than 90% of health care providers and families perceived that the child and family needs as well as the health care provider needs were met by the advanced care planning process and written care plan. All continuity providers would refer another patient. The FOOTPRINTS program promotes quality of care and family and health care provider satisfaction with care. It has been developed to serve as a "best practice" model for care at life's end.
对于在美国每年死亡的53000多名儿童而言，关于提供护理的最佳环境我们知之甚少。儿科姑息治疗方面培训不足导致护理往往支离破碎，可能忽视儿童及其家庭的身体、心理社会和精神需求。儿科临终关怀服务常常无法获得，或者未被家庭或医疗服务提供者所选择。为了应对迫切需要超越以疾病为导向、基于医院的模式（这种模式在医院和社区医疗服务之间缺乏连续性），我们开发了“足迹”项目，这是一个先进的护理计划和护理协调创新项目。无论护理地点在哪里，都由一名连续性医生指导治疗方案。工作人员协调医院和社区护理提供者之间的后续跟进和沟通。哀伤期间会持续提供精神支持。在医院和社区开展的教育活动支持当前护理人员提供优质的姑息治疗。对这种护理模式的满意度很高。超过90%的医疗服务提供者和家庭认为，先进的护理计划流程和书面护理计划满足了儿童及其家庭的需求以及医疗服务提供者的需求。所有连续性护理提供者都会推荐其他患者。“足迹”项目提高了护理质量以及家庭和医疗服务提供者对护理的满意度。它已被开发成为临终护理的“最佳实践”模式。
