The pediatric cardiac intensive care unit (CICU) is a high-complexity and high-acuity environment, with patients of all ages having undergone a variety of palliations involving long interventional cases sometimes requiring cardiopulmonary bypass. A significant proportion of congenital heart disease is palliated and not corrected, and as the field of pediatric heart failure and transplantation makes strides of progress, patients are asking the question – what is next? We are learning more about how the survival gets incrementally complex, and how additional organ systems are affected, and how the simple index of 30-day mortality may not be adequate to assess the quality of care and support the patients and their families receive. Furthermore, the pendulum has shifted from talking about whether patients will survive a diagnosis, to how they will survive, how the family will deal with the complexities of their survival, and the value of each intervention they undergo. There is also an oft-encountered gray zone between pushing the envelope of scientific progress and pursuing an intervention because it can be done – but should it?
Dr. Moynihan and Dr. Blume (10.1542/peds.2019-0160), in an article being released this week in our journal, provide us with a phenomenal framework for incorporating pediatric palliative care into the CICU in a seamless fashion, by educating and empowering providers in the CICU and without overburdening existing pediatric palliative care infrastructure. In this comprehensive and sophisticated narrative, the authors describe the current landscape of palliative care for the pediatric cardiac patient, the unique challenges in the pediatric CICU, and the search for the perfect way to introduce the valuable expertise and perspective of an additional consult team without further complicating a kitchen that already has several cooks. The authors propose a plan (and it is wonderful to read about its implementation in some pediatric CICUs already) that involves integrating aspects of palliative care in the pediatric CICU at the level of each provider in that unit from physician to nurse to other supportive providers such as physical therapists – i.e. anyone who would be caring for patients and their families in the CICU. These providers, with their knowledge of the pediatric CICU patient, additionally equipped with pediatric palliative care expertise, become the perfect ambassadors to introduce a patient’s family to what palliative care might offer that patient. They can provide the patient/family unit the support they need, and, in the spirit of critical care, ‘ask for help’ when they think the pediatric palliative care specialist is needed. The proposed model of care is thorough, fine-tuned, and likely to receive much support from providers (and hopefully administration as well!). It will help catalyze this growing interest and help in an adoption of pediatric palliative care principles into the everyday care of our patients (and staff) in the pediatric CICU.
