Where do ethics and palliative care overlap, and is there really no harm in doing both? Exercise your autonomy by choosing to listen to this episode, in which your beneficent hosts, Sarah and Dan, get ethical with Phoebe Winn and Bob Macauley, both palliative care physicians whose careers have also brought them to the realm of questions that sometimes just don't have answers. Thankfully, our expert guests are here to help us all understand. I mean, it would hardly be worth listening to if it were just us, right?

Phoebe Winn's recommended ethics readings (click the PMID's for links):

1. Diekema DS. Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theor Med Bioeth. 2004;25(4):243-64. doi: 10.1007/s11017-004-3146-6. PMID: 15637945. 
2. Kon AA. Informed non-dissent: a better option than slow codes when families cannot bear to say "let her die". Am J Bioeth. 2011 Nov;11(11):22-3. doi: 10.1080/15265161.2011.603796. PMID: 22047119.
3. Mercurio MR, Cummings CL. Critical decision-making in neonatology and pediatrics: the I-P-O framework. J Perinatol. 2021 Jan;41(1):173-178. doi: 10.1038/s41372-020-00841-6. Epub 2020 Sep 30. PMID: 32999448.
4. Diekema DS. Adolescent Brain Development and Medical Decision-making. Pediatrics. 2020 Aug;146(Suppl 1):S18-S24. doi: 10.1542/peds.2020-0818F. PMID: 32737228.
5. Diekema DS, Botkin JR; Committee on Bioethics. Clinical report--Forgoing medically provided nutrition and hydration in children. Pediatrics. 2009 Aug;124(2):813-22. doi: 10.1542/peds.2009-1299. Epub 2009 Jul 27. PMID: 19651596.
6. Taub S, Macauley R; COMMITTEE ON BIOETHICS. Responding to Parental Requests for Nondisclosure to Patients of Diagnostic and Prognostic Information in the Setting of Serious Disease. Pediatrics. 2023 Oct 1;152(4):e2023063754. doi: 10.1542/peds.2023-063754. PMID: 37743818.
7. Really all the AAP Bioethics Guidelines are helpful to know about: https://publications.aap.org/pediatrics/collection/528/Committee-on-Bioethics

And, in case you missed it in Episode 40, Bob Macauley's fabulous new book about his career in palliative care and ethics:  Because I Knew You

There's a member of the pediatric palliative care team we all love but rarely acknowledge: The children's books we share with families that help them cope and process the terrible situations they face. In this episode, Sarah and Dan talk with Joanna Rowland, author of The Memory Box, The Memory Book, and The Memory Tree; and Brennan Wood, author of A Kid's Book About Grief and Executive Director of Portland's Dougy Center (dougy.org).

Click on the links in the titles above to learn more and purchase their books!

Dan and Sarah welcome back to the podcast two previous guests, Dr. Bob Macauley and Dr. Chris Adrian, to discuss writing books about pediatric palliative care, as well as how our clinical practice, narratives, and personal trauma can all interact in sometimes unexpected ways.

Content warning: This episode includes discussion of child sexual abuse.

Click the link here to buy Dr. Macauley's new book: Because I Knew You

Proceeds from book sales benefit the OHSU Pediatric Palliative Care Team and Darkness to Light (https://www.d2l.org/), an organization dedicated to ending child sexual abuse.

We're back! Where did we go and why did we pause in the first place? You'll have to listen to the episode to find out all the details, but let's just say Dan conducted an extended and very personal investigation into the intersections of palliative care and bone marrow transplant. In this episode, Sarah interviews Dan about his experience as a patient and the take-home points he's bringing back to his practice.

(Apologies to Elisha Waldman for the episode title. Read his book; it's excellent.)

If you'd like to sign up to be a bone marrow donor in the US, you can do so at NMDP.org.

"About suffering they were never wrong, / the old Masters: how well they understood / Its human position..." wrote W.H. Auden. For all that suffering seems to be central to our practice, how do we in pediatric palliative care actually stack up against Brueghel et al when it comes to understanding it, though? Dan and Sarah dig deep with guests Erica Salter, PhD, and Lauren Draper, MD to explore what suffering really means for children, families, and the clinicians who care for them.

Even before heading homeward from the Annual Assembly, Dan and Sarah decided that we needed to do an episode about one of our favorite presentations, palliative home transports. So in this interview, Ashley Autrey from Children's Hospital New Orleans and Lindsay Ragsdale from Kentucky Children's Hospital bring it on home to you, our audience, sharing their wisdom and expertise about how to get some of our most complex and fragile patients out of the hospital, and what it means to honor death location preference.

This episode also features some exciting new AI integrations because... why not, right, I mean everything else has AI in it now, so... Will Sarah and Dan be replaced by robots? Have the robots learned anything about palliative care? Tune in to find out!


Materials
The Children's Hospital New Orleans home transport checklist, courtesy of Dr. Autrey

Perinatal Palliative Care! Thanks to a healthy dose of serendipity, PediPal finally wades into the ever-changing waters of palliative care before, during, and after birth. Sarah and Dan talk with Brian Carter, Kelstan Ellis, and Jenni Linebarger about their collaborative, creative work at the Children's Mercy Kansas City Fetal Health Center and beyond. So come for the birth planning, stay for the unrivaled power of narrative, everyone's favorite pediatric bioethical Zone, hot-button political issues, and 18th-century etymologies!

PediPal goes on the road! Dan brings his microphone to Phoenix, AZ, for the 2024 Annual Assembly of Hospice and Palliative Medicine, ambushing unsuspecting guests with that classic PediPal question, "What are your take-home points?" Sarah, unable to attend the conference, shares her take-homes from home.

Major thanks to AAHPM and all our enthusiastic participants: Tyler Badding, Gabe Daniels, Kelstan Ellis, Rachel Kentor, Jen Hwang, Matt McEvoy, Jennifer Salant, Alexis Santos, Meghna Singh, and Claire Slusarz, as well as #1 Fan Jared Rubenstein and #1 Fan Conrad Williams.

Where do the fields of Palliative Care, Neurology, and PM&R overlap? Where can we learn more about how to approach the dreaded uncertainty of neurologic prognostication? In this episode! Overcoming some technical difficulties, Dan (kinda) and Sarah discuss the field of Pediatric Neuropalliative Care with Marina Ma and Lauren Treat.

The episode we really wanted to call "2 Julie 2 Hauer."

Julie Hauer is back on PediPal! This time, she's here to discuss with Sarah and Dan what we do when we're beyond the guidelines, short on evidence, and way past the point of randomized control. What influences do culture and anecdote have on our prescribing? How much of pediatric palliative care is science and how much is art... and how much does the difference matter?

Julie's forthcoming book:
Childhood Onset Severe Neurological Impairment: Where Medical Complexity and Uncertainty Meet (Oxford University Press) 
[We'll update with a link when one becomes available!]

CPN NeuroJourney:
https://neurojourney.courageousparentsnetwork.org