You should know that we’re talking about very hard things today. However, death is part of life, and (just like adults), children are not excluded. But logic doesn’t ease the blow when a child passes. Keith was only 6 months old. He left behind 2 loving parents who have now dedicated their lives to creating special programs, support groups and educating medical professionals on best practices when faced with a family going through this kind of a life altering chapter. Dr. Gaggino talks with Rachel and Aaron Lewis about their journey with their son Keith. They’re also joined by Dr. Lisa Humphrey, Director of the Division of Hospice and Palliative Medicine at Nationwide Children’s Hospital. Together, they’ll tell you about the effect that Keith’s life and death have had on the practice of children in palliative and end of life care. Oh, by the way……Grab your tissues, this will be a tough one.
[00:33 -20:16] Opening Segment
- We’re introduced to Dr. Lisa Humphrey and we hear about how her passion for palliative care was born
- We meet Rachel and Aaron Lewis who talk about their son Keith’s journey
- The myths about palliative care
- The difference between Palliative Care and Hospice
- Being Decisionally Agnostic is a key factor in Palliative Care
[20:17- 35:48] Hope for the Best, Prepare for the Worst
- The importance of respecting the decisions of the family
- There is active communication between team members to “keep themselves in check”
- Is it okay to talk about death with the parents and how do we do that in a helpful way?
- Reading the room is a valuable skill set
[35:49 -48:43] Preconceived Notion
- Important to have the families in the room (if they want to be there)
- Parents actually watching the team work to save their child with dignity, intellect and intent can be helpful for the bereavement process
- The magic of the first breath and the last breath
[48:44 1:05:05] Get out of your comfort zone
- Biggest fear is that the child’s name will be forgotten
- Encourage the family sitting out in the waiting room to be a part of the care
- For team members: show your validation of the child by showing up, being there saying the child’s name, push your humanity forth.
[1:06:06 – 1:11:25] Closing segment Takeaway
You can reach Rachel Lewis
Facebook: Rachel Houser Lewis | Facebook
Instagram: @rachel_lewis21.12
You can reach Aaron Lewis
Facebook: Aaron Lewis | Facebook
Links to resources mentioned on the show
You can learn more about Keith’s story at https://www.keithscomfortblankets.org/home
Courageous Parent Network: https://courageousparentsnetwork.org
AAP Section on Hospice and Palliative Medicine (SOHPM): https://www.aap.org/en/community/aap-sections/hospice-and-palliative-medicine/
National Coalition for Hospice and Palliative Care Medicine Palliative Care Guidelines: https://www.nationalcoalitionhpc.org/ncp/
AAP 2022 Clinical Report – Guidance for Pediatric End-of-life Care: https://publications.aap.org/pediatrics/article/149/5/e2022057011/186860/Guidance-for-Pediatric-End-of-Life-Care
Other episodes you may like:
Episode #46
Moral Dilemmas: Where Medicine & Ethics Meet
Key quotes for Twitter:
“I have some trauma attached to that day, but not one part of me would want to leave that room. There is no better way to love my child than to save his life”….Keith’s Mom, Rachel Lewis
“There’s no destination to this grief journey, it’s a lifetime event”.. Keith’s Dad, Aaron Lewis
THANK YOU FOR YOUR SUPPORT!
Pediatric Meltdown was listed as a Top 20 Pediatric Podcast on FeedSpot.
If you’d like to connect with me, you can find me on LinkedIn, Facebook, Instagram, and Twitter, or email me at [email protected] or [email protected]. To learn more about me visit https://www.medicalbhs.com/
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