Inclusion Criteria:  Child inclusion criteria are  ≥1.0 years and <18.0 years at enrollment;e unable to participate in end-of-life care decision-making; have a rare disease as operationally defined (See Human Subjects); not under a Do Not Resuscitate Order or Allow a Natural Death Order; and not in the Intensive Care Unit.  Family caregiver inclusion criteria are:  ≥ 18.0 years at enrollment; legal guardian of child and child's caregiver; can speak and understand English; and not known to be developmentally delayed.  Exclusion Criteria:  (1) Family caregiver is actively homicidal, suicidal, or psychotic at the time of enrollment.