University of Texas at Austin School of Social Work, Austin, Texas; and.
Pediatrics. 2014 Feb;133 Suppl 1:S8-15. doi: 10.1542/peds.2013-3608C.
Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and (2) nonabandonment. Children exist in the context of a family and therefore excellent care for the child must include attention to the needs of the family, including siblings. The principle of nonabandonment is an important one in pediatric palliative care, as many families report being well cared for during their child's treatment, but feel as if the physicians and team members suddenly disappear after the death of the child. Family-centered care requires frequent, kind, and accurate communication with parents that leads to shared decision-making during treatment, care of parents and siblings during end-of-life, and assistance to the family in bereavement after death. Despite the challenges to this comprehensive care, physicians can support and be supported by their transdisciplinary palliative care team members in providing compassionate, ethical, and holistic care to the entire family when a child is ill.
儿科姑息治疗医生有道德义务通过治疗和丧亲来照顾患有危及生命疾病的儿童的家庭。这项义务基于两个重要因素:(1)儿童的最佳利益,以及(2)不放弃。儿童存在于家庭环境中,因此,对儿童的精心护理必须包括对家庭的需求的关注,包括兄弟姐妹。不放弃原则是儿科姑息治疗中的一个重要原则,因为许多家庭报告说在孩子治疗期间得到了很好的照顾,但在孩子去世后,他们觉得医生和团队成员突然消失了。以家庭为中心的护理需要与父母进行频繁、友善和准确的沟通,从而在治疗过程中共同做出决策,在临终关怀期间照顾父母和兄弟姐妹,并在孩子去世后为家庭提供丧亲援助。尽管这种全面护理存在挑战,但当孩子生病时,医生可以通过跨学科姑息治疗团队成员的支持,为整个家庭提供富有同情心、合乎道德且全面的护理。