Bringing Social Context Into the Conversation About Pediatric Long-term Ventilation

Abstract

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 exp...

The importance of advance care planning for children with chronic respiratory failure

“…Families who choose home mechanical ventilation need to acquire skills and social support to care for their child and be able to devote significant time to their care. Regional differences in available resources (home nursing, medical transportation, etc) lead to variability in families’ ability to care for their children at home 6 . The financial burden of supporting a child on home mechanical ventilation should also be disclosed.…”

Development and validation of a novel informational booklet for pediatric long‐term ventilation decision support

“…In addition, initiation of LTV and tracheotomy were the most commonly identified clinical risk factors for adverse psychological outcomes in families following the discharge of their child from the PICU 7 . Therefore, commentators have called for clearer, broader, unbiased, timelier discussions of the burdens, risks, and benefits of LTV and standardized decision‐making processes, including the use of written resources 7‐9,31,32 …”

“…Even when families believe there is no “decision” to be made, it can help ensure uniform information and anticipatory guidance are offered. It may be especially useful in settings where there are limited institutional resources, such as formal home ventilation programs or organized decision‐making processes, 32 to assist families during their decision‐making. It also can be helpful in educating providers‐in‐training about what information should be conveyed to families.…”

Shared decision making for children with chronic respiratory failure—It takes a village and a process

“…However, these children have some of the most complex 9 and expensive care needs of all children with special health care needs in terms of inpatient hospitalizations, 10 home nursing, 11 durable medical equipment 12 and caregiving requirements for parents 13,14 . In children with CRF, the decision regarding whether or not to place a nonurgent tracheostomy has a large impact on the life of children and families 15,16 . The decision process is challenging for patients/families 16 as well as health care professionals 17–19 .…”

“…In children with CRF, the decision regarding whether or not to place a nonurgent tracheostomy has a large impact on the life of children and families 15,16 . The decision process is challenging for patients/families 16 as well as health care professionals 17–19 . No prior studies examine the systems and organizational factors that influence how such a difficult decision is reached.…”