Working group flags low MOLST awareness, inconsistent referrals and respite gaps in pediatric palliative care

Members of the Champion Care Action Team spent the meeting reviewing barriers to pediatric palliative care and hospice and mapping next steps to meet an upcoming February 6 report deadline. Participants stressed that lack of clinician and family awareness of MOLST (Medical Orders for Life‑Sustaining Treatment), inconsistent referral processes, workforce capacity and licensing constraints around respite care are the largest practical obstacles to delivering timely, family‑centered care.

The group said greater education and clearer tools are essential. One participant summarized the problem with paperwork portability: "There really can't be enough copies in enough places," reflecting concerns that MOLST forms written in a hospital often do not travel with children who are mobile or who travel for family events. The advisory council reported plans to develop a consumer FAQ and a training deck to raise awareness among clinicians and families in 2026.

Participants described how gaps appear at multiple points: inpatient admission packets for young adults treated in pediatric settings do not routinely mention MOLST or explain…