Episode 38: About Suffering

Dr. Tasha Faruqui is a pediatrician. Tasha Faruqui is the mother of Soraya, a child with medical complexity who is enrolled in pediatric hospice. For many years, Tasha tried to live two separate lives, worrying about how her identities would conflict with each other. In this episode, she talks with Sarah and Dan about learning to unify herself and how that ultimately made her a better physician and parent.Learn more about Tasha, Soraya, and their family on Instagram at https://www.instagram.com/thefaruqui5/.Order Dr. Faruqui's new book, Keep Your Head Up, on her website, https://www.tashafaruqui.com/book or at a bookshop near you.100% of book proceeds will be donated to Cincinnati Children’s Hospital and the Make-A-Wish Foundation.

Guiding patients and families in complex, high-stakes medical decisions, can we clinicians ever be truly neutral, or are we doomed to always nudge toward our own preferences and biases? How does the architecture of the decisions we present shape the choices that others make? Sarah and Dan tackle these questions and more with three nudging experts: Dr. Aliza Olive (Cleveland Clinic), Dr. Laura Miller-Smith (OHSU), and Dr. Joanna Hart (UPenn).

When all our best attempts fail to relieve suffering, we sometimes turn to palliative sedation to the point of unconsciousness. But how do we know if and when such a drastic intervention is the right choice? Sarah and Dan chat with Justin Baker and Tyler Tate about practical and ethical approaches to communicating about and implementing sedation for pediatric patients facing refractory symptoms at the end of life.

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):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. 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.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.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.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.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.Really all the AAP Bioethics Guidelines are helpful to know about: https://publications.aap.org/pediatrics/collection/528/Committee-on-BioethicsAnd, 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 YouProceeds 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!MaterialsThe 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!