Contro Nancy A, Larson Judith, Scofield Sarah, Sourkes Barbara, Cohen Harvey J
Pediatric Palliative Care Program, Lucile Salter Packard Children's Hospital at Stanford, Stanford University Medical Center, 725 Welch Rd, Palo Alto, CA 94304, USA.
Pediatrics. 2004 Nov;114(5):1248-52. doi: 10.1542/peds.2003-0857-L.
Development of a pediatric palliative care program was preceded by a needs assessment that included a staff survey and family interviews regarding improving pediatric palliative care.
Four hundred forty-six staff members and community physicians responded to a written survey regarding comfort and expertise in delivering end of life care. Sixty-eight family members of 44 deceased children were interviewed regarding treatment, transition to palliative care, and bereavement follow-up contact. Frequencies were generated for responses to the staff survey. Five interviewers reviewed the families' narratives and identified frequently occurring themes.
Staff members reported feeling inexperienced in communicating with patients and families about end of life issues, transition to palliative care, and do not resuscitate status. Families reported distress caused by uncaring delivery of bad news and careless remarks made by staff members. Staff members reported feeling inexperienced in symptom and pain management and described occasions when pain could have been better managed. Families believed pain had been managed as well as possible despite observing their children suffer. Fifty-four percent of staff members reported that adequate support was not provided for those who treat dying children. Staff members and family members stated their desire for more support. Staff members who described their most difficult experiences caring for a dying child referenced personal pain and inadequate support most frequently.
Albeit from different perspectives, staff members and family members shared common concerns and experiences regarding pediatric palliative care. These experiences emphasize the need for additional systematic study, improved education and support for staff members, and continued development of more effective and compassionate delivery of pediatric palliative care.
在开展儿科姑息治疗项目之前，进行了一次需求评估，其中包括针对改善儿科姑息治疗的员工调查和家庭访谈。
446名工作人员和社区医生对一份关于提供临终关怀时的舒适度和专业知识的书面调查做出了回应。对44名已故儿童的68名家庭成员进行了访谈，内容涉及治疗、向姑息治疗的过渡以及丧亲后续联系。对员工调查的回复生成了频率数据。五名访谈员审查了家庭的叙述，并确定了经常出现的主题。
工作人员报告称，在与患者及家属就临终问题、向姑息治疗的过渡以及不进行心肺复苏状态进行沟通方面缺乏经验。家属报告称，工作人员传递坏消息时冷漠以及言语不慎会造成困扰。工作人员报告称，在症状和疼痛管理方面缺乏经验，并描述了一些本可更好控制疼痛的情况。尽管看到自己的孩子受苦，但家属认为疼痛已得到了尽可能好的控制。54%的工作人员报告称，没有为照顾濒死儿童的人员提供足够的支持。工作人员和家属均表示希望获得更多支持。那些描述照顾濒死儿童最困难经历的工作人员最常提到的是个人痛苦和支持不足。
尽管视角不同，但工作人员和家属在儿科姑息治疗方面有着共同的担忧和经历。这些经历强调了进行更多系统研究、改善对工作人员的教育和支持以及持续发展更有效且富有同情心的儿科姑息治疗服务的必要性。
