Dr. Terri Major-Kincade notes that physicians shouldn’t evaluate a child’s quality of life when they are at their sickest in the hospital. She gives an example of how she teaches this to students – sometimes the smallest, simplest things make a good day.

Neonatologist and palliative care physician Dr. Terri Major-Kincade notes that inpatient intensivists know nothing about the lives of the children in their homes and communities, talking with families about “How they do life with their kid.” Families want resources to DO LIFE with their kid.

Dr. Terri Major-Kincade describes how she talks with parents and caregivers of children whose baseline is declining. She talks about how it is OK to revisit goals, which can be an especially big change for those families who have previously chosen interventions. “A lot of times family have said, this is my line. And we try to remember where their line is. But I wanted to be able to circle back and say, how are you feeling today? How are you feeling about today’s plan? If this plan is not consistent with your values, what would it be? What are you wishing for now? … We need to kind of explore that because people have to be safe enough to talk about, I love my child. And today, love for my child does not look like ….” (There is so much good instruction in here: hopes, worries.)

Dr. Terri Major-Kincade talks about how a palliative care consult and team or family liasion can help parents who feel they aren’t being heard or are being judged.

This is long but worth the full listen: the hardest part of the job is not communicating about the tough stuff but about helping families find resources when they are discharged and are no longer surrounded by a team with hospital resources. “We live in a system that does not prioritize continuity of care and coordination of care.” She describes all the ways families are burdened: arguing with insurance about DME, parking at the clinic, the Medicaid waiver waiting list. She stresses the importance of preparing families, forecasting, including about the nursing shortage, and getting families on the Waiver waitlist asap.

Pediatric palliative care physician Terri Major-Kincade describes why this question gets to the heart of what matters.

Pediatric palliative care MD Terri Major-Kincade talks about she stresses to the medical team that it is the parents who are always going to remember this day, this baby, and they have to be OK with their decision. “Parents are not coming to the hospital going, let me see how I can make my child suffer today.” She also explains why she hates the word used about parents: Denial

Dr. Terri Major-Kincade describes many of the ways that parents are not in the same place and medical teams aren’t in the same place, and gives concrete examples of how she talks to families to help them embrace the Now while attending to what may happen in the future, including demands. “A decision today does not preclude a decision for the future. Sometimes those decisions come up sooner than you think. You will have opportunities to continue to have this conversation and meet in the middle about what’s most important to your family.”

Dr. Terri Major-Kincade shares a personal story about how her relationship with a family she had known since the baby was born very prematurely complicated the parents’ decision later to transition to comfort-care only. The family was afraid they were going to let her down because she saved their baby. “I’ve had such guilt about them feeling like they didn’t have permission. How many shunt infections have been treated? How many things have this baby gone through?” (This was a big learning moment for Terri.)

Palliative care physician Dr. Terri Major-Kincade describes what she has learned about how and why families may change their minds from day to day. There are so many reasons this can happen – subtle shifts, emotional, logical, practical. She describes how she communicates with and supports caregivers to try to minimize their regrets, and how important it is to honor what they say they want. (So much good teaching in here.)