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.