Navigating Difficult Conversations in Children’s GI Healthcare

Recently, Dr. Laurie Jacobs from CHOA’s palliative care team gave our group a provocative update on communication strategies in children with severe illness. My notes below may contain errors in transcription and in omission. Along with my notes, I have included many of her slides.

Having a pre-meeting with other members of health care team is a key part in setting up an effective meeting with parents
Delivering news: 1) Provide a straightforward Headline: ‘We are here to discuss xyz’ 2)Be clear. ‘To be clear is to be kind’ 3) Then STOP TALKING. This let’s the family process
Sometimes even delivering bad news can be met with relief by families who have been waiting for a diagnosis
Respond to emotion with NURSE mnemonic: Name, Understand, Respect, Support, Explore
What if the ‘family doesn’t get it?’ Do they understand (can they repeat back)? Most often the family has a different perspective; they may think we are wrong
Be careful to avoid offering decisions where there are not actual decisions to be made
Our own values/beliefs are often introduced even though quality of life is in the eye of the beholder
Tube feeds can be considered forms of ‘artificial nutrition.’ There are situations in which families need to know that it is not always required
Parenteral nutrition is more invasive and associated with more active parental decision-making
Decisions may change based on change in patient circumstances
There is not a single right answer with difficult decisions. There are trade-offs between longevity and QOL
Anything that we would allow parents not to start, can be stopped at any time from an ethical standpoint