CEO Amy Brin on the difference, new AAP guidelines, and what families and doctors should know about palliative care

In my years of experience working with children and families living with life-threatening or limiting conditions – first as a pediatric advanced practice nurse and now through my role at CNF – I have learned so much about resiliency. These families are making the best out of unexpected and difficult situations, and one thing I’ve learned to do is never to underestimate them. Especially when it comes to having difficult conversations, such as ones about palliative care or hospice care, what the differences between the two are, and how to arrange either type of care for their child.

Palliative care is a system of care that is designed to be an extra layer of support for families of children living with serious, complex medical conditions. Importantly, it is not the same as hospice care. 

Just last month, the American Academy of Pediatrics (AAP) published new clinical guideline for pediatric end-of-life care. Within this report, they very clearly define what end of life services, supports, conversations should be offered, and they also clearly differentiate what palliative care can offer their child earlier on the disease process.  

Too often, the line between the two types of care remains blurred because many healthcare professionals have a hard time discussing specific details of each type of care. Instead, palliative and hospice care are presented as a package, and families hear the word ‘hospice’ and think “my kid isn’t at end of life” and they deny the services altogether. 

But the reality is that many of our families do need more support services and symptom management upstream, which is what palliative care has to offer.  

Families can handle the duality of caring for their child AND knowing  they are living with a life-threatening condition. This publication helps clinicians understand the difference so they can help families set appropriate expectations on services. 

To learn more about what it’s like to arrange palliative care for you child, and how it can support your entire family, watch our conversation with Dr. Sarah Friebert, Director of Pediatric Palliative Care at Akron Children’s Hospital, which was designed as part of our Epilepsy Hub.

The publication of these new guidelines is very important and I hope will immensely help families who would greatly benefit from palliative care. While not comfortable, if we are here to really serve and care for our children, we need to be able to have these difficult conversations so that families are accessing the right service at the right time. Here, at CNF, know we stand with you and ready to help you navigate these conversations. You are not alone.  

For additional reading , check out the following resources: 

• For families: Courage Parents Network is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness. 
• For physicians: The National Hospice & Palliative Care Organization is a national organization for physicians who practice in pediatric palliative and hospice care.