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American Academy of Pediatrics
Special Article

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

Carrie M. Henderson, Benjamin S. Wilfond and Renee D. Boss
Hospital Pediatrics February 2018, 8 (2) 102-108; DOI: https://doi.org/10.1542/hpeds.2016-0168
Carrie M. Henderson
aDivision of Pediatric Critical Care Medicine and Center for Bioethics and Medical Humanities, University of Mississippi Medical Center, Jackson, Mississippi;
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Benjamin S. Wilfond
bTreuman Katz Center for Pediatric Bioethics, Seattle Children’s Research Institute and Division of Bioethics, Department of Pediatrics, School of Medicine, University of Washington, Seattle, Washington; and
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Renee D. Boss
cDivision of Neonatology, Department of Pediatrics, and Berman Institute of Bioethics, School of Medicine, Johns Hopkins University, Baltimore, Maryland
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    FIGURE 1

    The technology decision support process.

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    FIGURE 2

    Degree of neurologic and respiratory morbidities as indications for technology decision support process.

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    TABLE 1

    TDSP Team: Potential Composition, Expertise, Tools, and Tasks

    Potential Team MemberaExpertiseTools and Tasks
    Child’s prognosis and treatment options
     FacilitatorLong-term medical and neurodevelopmental prognosis Likelihood of decannulation Alternatives to LTV Procedural considerationsIdentify key clinician and/or provider stakeholders in the child’s care Convene structured team meeting to reach a consensus about prognosis and treatment options before meeting with the family
     ICU clinician
     Surgical specialist (eg, ENT)
     Subspecialists
     Hospitalist
     Respiratory therapist
     Developmental pediatrician
     Speech therapy
    Lived experience of LTV
     FacilitatorUsual hospital course for child with LTV Practical skills and daily home care Outpatient care coordination and medical home Likely rehospitalizations Other parents’ experiences of choosing or declining LTVHome health team demonstrates equipment and care tasks parents would have to learn Pulmonologists describe potential sites of care Parents watch videos of other parents describing their decisions
     Pulmonologist
     Respiratory therapist
     Home health provider
     Primary care clinician
     Hospitalist
     Subspecialists
     Other parents
    Mapping child’s needs to family social context
     FacilitatorFamily supports (eg, extended family and respite) Health literacy and capabilities (eg, ability to learn LTV care) Conflicting obligations (eg, siblings and jobs) Community resources (eg, home nursing and medical day care) Financial considerations (eg, insurance, transportation, and housing)Psychosocial evaluation tool (eg, modified SIPAT6) Home visit Assess availability of and eligibility for home nursing Explore transportation options
     Social work
     Case management
     Home health provider
     Palliative care support
    Prepare family for role in serious decisions
     FacilitatorConsidering the child’s interests and quality of life Impact on the whole family Balancing benefits and burden Incorporating religious and/or spiritual values Emotional, grief supportFamily decision-making tool Map family values to treatment options
     Palliative care support
     Ethics consultant
     Chaplain
    • SIPAT, Stanford Integrated Psychosocial Assessment for Transplantation.

    • ↵a Individual team members will differ on the basis of local resources, and any 1 member may offer multiple areas of expertise.

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Hospital Pediatrics: 8 (2)
Hospital Pediatrics
Vol. 8, Issue 2
1 Feb 2018
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Bringing Social Context Into the Conversation About Pediatric Long-term Ventilation
Carrie M. Henderson, Benjamin S. Wilfond, Renee D. Boss
Hospital Pediatrics Feb 2018, 8 (2) 102-108; DOI: 10.1542/hpeds.2016-0168

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Bringing Social Context Into the Conversation About Pediatric Long-term Ventilation
Carrie M. Henderson, Benjamin S. Wilfond, Renee D. Boss
Hospital Pediatrics Feb 2018, 8 (2) 102-108; DOI: 10.1542/hpeds.2016-0168
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