Bringing social context into the conversation about pediatric long-term ventilation

Bringing social context into the conversation about pediatric long-term ventilation

Henderson CM; Wilfond BS; Boss RD

Hospital Pediatrics

2018

artificial ventilation; Ventilators; long term care; Child; Home Care Services; Long-Term Care; Only Child; Patient-Centered Care; home care; hospital patient; life sustaining treatment; personal experience; quality of life; tracheostomy; child; human; pediatrics; article; decision support system; family decision making; social environment; home environment; medical information; practice gap; Mechanical

Decisions to initiate long-term ventilation (LTV) for children with medical complexities often involve unclear risk/benefit ratios. Although the technology may prolong a child's life, the added months to years could largely be spent in the hospital, a long-term care facility, or medical foster care, as well as at home. Clinicians who counsel families about initiating LTV must help them make value-based decisions that account for each child's medical needs and the predicted experience with the technology. That experience depends substantially on how well the family can manage daily care at home: How well they can learn the necessary skills, dedicate the required time, and garner adequate support. Because the success of long-term technologies rests on home care provided by families, each family's social context is relevant to the decision to initiate pediatric LTV. Social context (the physical, geographic, economic, and cultural circumstances in which children and their families live) will impact the child's outcome; those children with medical complexity combined with adverse social factors have the poorest health among all children.1 A recent study showed that ~2% of PICU patients across the United States received a tracheostomy and LTV; almost all of these children had chronic medical conditions.2 Substantial variability was noted in the postdischarge support systems provided to these medically complex patients and their families. Regional resources, such as home nursing, medical day care, and medical transportation, can reduce burdens for this population, but they receive inconsistent local, state, and federal support. Considerable caregiving demands for families managing home medical equipment are well described and can entail employment changes, geographic relocation, or disruption of family structure.3 Clinicians striving to individualize decisions about LTV generally have a limited window into the social context that shapes what it will be like for this child to go home with this family. Similarly, families faced with decisions about LTV for their children may not know how to think through the implications for changes to life at home. Evidence for how to consistently, meaningfully, and fairly incorporate family social contexts into decisions about LTV has not kept pace with the availability of pediatric home medical equipment. The essential question is can this family provide the necessary home care if LTV is initiated for the child? And, if not, what would the alternatives look like, and are they acceptable to the family? These decisions require frank consideration of the child's and the family's potential experience of the treatment alternatives: Complex home care, indefinite inpatient care, medical foster care, or limiting life-sustaining therapies. Reviewing potential home care demands and alternative placements during decisions about initiating LTV may not be helpful for every family, but consistently offering tangible discussions of child and family quality of life with LTV legitimizes and explores these concerns for any.

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April 2018 List