Trends in Pediatric Palliative Care 2018; Issue #6

By Dr. Meaghann Shaw Weaver, MD, MPH

Feature Article:Randall, D. C. (2017). Two Futures: Financial and Practical Realities for Parents of Living With a Life Limited Child. Comprehensive Child and Adolescent Nursing

Other Articles Referenced: Wiener, L., Rosenberg, A., Lichtenthal, W., Tager, J., & Weaver, M. (2018). Personalized and yet standardized: An informed approach to the integration of bereavement care in pediatric oncology settings. Palliative and Supportive Care, 1-6. doi:10.1017/S1478951517001249

Weaver,M.S. (2018). Growing symbiotic Local Partnerships to Nurture Quality Pediatric Hospice Care in Rural Regions: Companion Planting. JAMA Pediatrics.

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Commentary: Trends in Pediatric Palliative Care Citation List 2018; Issue #6

Family caregivers are an under-recognized and systematically under-appreciated workforce. DC Randall utilizes qualitative methodology to explore the reality of caring for a child with complex, chronic healthcare needs. Recent work has quantified metrics of parental hands-on medical care for children with palliative care needs. Our colleagues in Italy (Lazzarin et al 2017) reported findings from 33 families of children receiving palliative care services: “Parents providing palliative care for children with life-limiting diseases spent an average of nine hours a day caring for them each day and had to maintain an average of five medical appliances.” Our local pediatric palliative care program in Omaha, Nebraska strove to quantify home nursing duties carried by 38 families of children receiving palliative care (Weaver et al 2018). We discovered a forty-hour gap in average number of home nursing hours allotted versus received, primarily during evening hours. Parents in our study missed an average of 23 hours of employment/week to provide hands-on nursing care at home, ranking stress regarding personal employment due to nursing shortage at 6.2/10. In this paper, DC Randall recognizes that a sustained childhood for medically fragile children often requires the full-time participation of parental figures as care providers. This paper acknowledges the ways family members restructure life in order to offer a child a childhood. This restructuring is described as loss of employment and shift from parental to medicalized role. DC Randall’s paper acknowledges the ongoing care of a child with complex, chronic medical conditions as a loving, selfless parental action while further calling for the palliative care community’s care for family caregivers as a form of moral action.

Through shared stories and navigated narrative, DC Randall “discusses the tensions between parental and state’s responsibility for children, carers and the political and cultural rights and responsibilities pertaining to children’s care.” In applying Walker’s principle of expressive-collaborative morality, this article reminds us that moral understanding occurs not with theory but within a lived, social context. Walker recognizes that morality is embodied in “practices of responsibility” that express our identities, values, and connections to others in socially patterned ways. Thus, when we meet an exhausted mother in our palliative care clinic who keeps vigil providing full-time trach/vent supervision for her sleeping child all night every night and who has left her own employment as a bank manager to become her child’s full-time care provider by day, we recognize there is a certain moral call to care not only for this child but also for this child’s care-providing mother.

This paper was refreshing because through shared story and reviewed narrative, we are reminded that acts of access to support for caregivers (whether in the forms of filled respite hours; social support groups; neighborhood play group inclusion; home nursing coverage) are necessary actions to honor community interdependence. Caring well for a child means active care of the child’s family caregivers.

DC Randall extends relational, interdependence ethics to care of the bereaved caregiver. Bereavement is described in this paper as “a covenant to assist parents and siblings when a child dies to recover and adjust to their loss, in recognition of the work they have performed in caring for the child during their child’s life and their death.” We know from prior literature that the death of a child results in “a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being” in parents (Wiener et al 2018). Quite compelling in DC Randall’s paper was the recognition of bereavement care as an actual community contract and not just a casual responsibility.

As recent papers have quantified the hours of sleep lost and the employment missed by parental caregivers of children receiving palliative care, this timely paper qualifies the moral action of caregiving. Family caregivers who are engaged in the under-recognized tasks of hands-on care provision for children receiving palliative care services deserve caregiving in the form of not just attentiveness but actual actions of community solidarity and tangible support.