A part of the team: The changing role of palliative care in congenital heart disease

Palliative care teams have historically not been involved in the treatment of children with congenital heart disease. When palliative care is involved, most consults occur too late during “crisis” situations when patients are already critically ill, and most had no prenatal involvement of the palliative care team. Early involvement of palliative care teams can reduce patient and family stress as well as allow palliative care to participate in longitudinal care planning and decision making. Palliative care teams should be introduced as part of the larger heart center team to avoid misperceptions that families may have involvement of palliative care is making a judgement on the prognosis of their child. Consideration should be given to developing “triggers” for palliative care consultation to ensure that all patients have access to early palliative care as standard practice, and to help reassure families that a palliative care referral is not synonymous with giving up on their child.