Benefits of early referral to pediatric palliative care for a child with a rare disease

This case is described to provide a voice for families who are caring for a child with an undiagnosed or life-limiting illness and especially for the families who won’t consider PPC either out of fear or not knowing it exists. Policy and funding frameworks need to support the reality of PPC and our home care system needs to be flexible to the fluctuating needs of children or the reality will be that services are not there when required, and we could miss supporting a family at home when that had been their wish all along. Physicians owe it to their families to become educated about PPC. In the relationships physicians create with their patients and families, they should have a clear understanding of what the family needs in terms of support.⁶ If that is something better suited to the PPC team, it is important to offer the option.