The Duty of the Physician to Care for the Family in Pediatric Palliative Care: Context, Communication, and Caring

Abstract

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. Pediatrics 2014;133:S8-S15

Talking With Parents About End-of-Life Decisions for Their Children

“…Most of them also find it helpful to share in decisions to withhold or withdraw lifesustaining treatment (LST), decisions that often precede a child's death. 2,3,5,9,11,[16][17][18][19][20] Parents' perception of a shared approach may even lower their grief in the long term. 21 The extent to which parents want to share in the decision-making process differs from parent to parent.…”

In Whose Best Interests? Critiquing the “Family-as-Unit” Myth in Pediatric Ethics

“…Parents (and their families) will live with the consequences of their decision for months, even years. For example, Jones and colleagues note that "Bereaved parents are at risk for anxiety, depression, suicidal ideation, prolonged grief, decreased quality of life, relationship struggles, and social decline" [8]. In addition to the vulnerability inherent in being a patient, the vulnerability of parents, too, is significant and should be addressed.…”

“…But this does not apply to Konstantin and his brother; they do not have duties analogous to their parents at this time-although they will one day. And yet, whereas very young children cannot be made martyrs for their parents' causes, adult patients may choose to sacrifice themselves in this way for their families as a final gesture of love.⁹ 8 This example is modified from Hardwig [27]. 9 A not infrequent example concerns the adult patient who retains decision-making capacity.…”

“…By contrast, if Option A were known to be ineffective and Option B effective, the Rusin family might need to make further sacrifices. And if Option B were almost prohibitively expensive, but the only treatment known to reverse Konstantin's seizures and prevent significant neurological ¹⁰ However, compare with Jones et al [8]: "because the family is the greatest influence in the life of the child, and the well-being of the child and family are intrinsically linked, care for the child must include care for the family. Physicians are ethically bound to care for the family along with the child."…”

A Parent’s Journey: Incorporating Principles of Palliative Care into Practice for Children with Chronic Neurologic Diseases

“…Listening preserves the parent-child relationship, promotes the parental role as advocates for their child, helps parents retain a sense of control under uncertain circumstances, and is essential for parents to be reassured that their concerns and wishes are not ignored. 3,16,17 Through active listening and acknowledging the value system and preferences of the patient and family, health care providers and families may arrive at similar conclusions. As described by Glyn-Pickett, a mother of a chronically ill infant, -Put simply, we were listening, together, in the explained that if we can get the seizures to stop, at some point Hannah's brain will think it no longer needs to have the seizure activity, and will naturally prune away some/all of the defects that are causing seizure.…”