How Palliative Care Helps – Courageous Parents Network

Courageous Parents Network

“I don’t use the terminology of quality of life. It labels something that is very difficult to label.” A perinatal doctor on listening to what is in the parents’ heart and hearing where they are headed.

A perinatal palliative care and neonatalogist, Dr. Natasha Henner, describes how guiding a family following a fetal diagnosis involves many conversations over time. She describes her process. She doesn’t like the term ‘quality of life’ because it labels something that is too particular to each family. She listens for what parents care about and what they suggest quality means to them. She asks what they already know about the condition. She asks where they get their information. She asks what types of stories they tend to gravitate towards — do they focus on the babies who die or the babies who survive? – and asks them questions about what they are curious about. “How do you feel when you read those stories?” You start to get these notes about what the family wants.