PediPal

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...

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...

"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...

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) 
[W...

It's 2024! As PediPal enters its fourth year, we want to take a moment to look back on what we've learned over the last three years. So for the first time (and hopefully the last), we have no guests, just the reflections, opinions, and bad jokes of the two pedi pals ourselves.

How and where do we draw the boundaries between ourselves and our patients and families? What other boundaries do we draw--or not draw so well--in pediatric palliative care? Here to discuss these questions and more are Stacy Remke, MSW, and Rev. Bentley Stewart.

Death. Dying. Simple words, but often hard to say, and even harder to say to a child. In this episode, Sarah and Dan turn to some experts on saying difficult things to children, Certified Child Life Specialists Kelley Gavel and Nicole MackDiaz. Find out why Child Life is particularly adept at helping kids grapple with the toughest questions, and then stick around for a special guest who tries his best to stump Kelley and Nicole...

Books mentioned by our guests:
All About the Intensive Care Unit -  Alexandria Friesen
Lifetimes - Bryan Mellonie 

Turn on, tune in, and drop your preconceptions, because in this episode, Sarah and Dan are your guides on a trip into the realm of psychedelics in pediatric palliative care. We join Dingle Spence, Chris Adrian, and Elisha Waldman to learn about how they came to do this work, how psilocybin is helping some bereaved parents on their journeys of grief, and what the future might hold for psychedelic therapies in pediatrics.

Interdisciplinary teams are so vital to the practice of palliative care, and in today's episode, the PediPal team explores a new kind of team member: What has four paws, has mastered the art of being present, and is guaranteed to increase the popularity of your palliative care team? A therapy dog!

Join Sarah and Dan as they hear two tales of wagging tails who are dedicated members of Peds Palliative teams in British Columbia (Gaia) and Michigan (Fawn). We hear mostly from the humans who work closely with them, but if you listen extra carefully, you can...

Get psyched because PediPal is back! In this episode, Sarah and Dan interview two psychologists, Amanda Thompson and Rachel Kentor, about creating competencies for pediatric palliative psychology and how we can bring more psychology into the world of pediatric palliative care.

You can read their recent paper here:
https://pubmed.ncbi.nlm.nih.gov/37141582/

And if you're interested in contacting them for more information about how to involve psychology in your pediatric palliative care practice, our guests have graciously shared their contact information:

If you're working in pediatric palliative care and you haven't heard of Courageous Parents Network, put down this podcast immediately and go make yourself familiar with the amazing resource that is CPN. Sarah and Dan are thrilled to have three courageous parents - Blyth Lord, Amy Graver, and Liz Morris - discuss how their children's stories intersected with palliative care.

And if you haven't heard the CPN podcast, make sure to check it out here: https://courageousparentsnetwork.org/podcasts/ 

Welcome to a special "Best of" PediPal episode! The notion, concept, and implementation of silence is integral to the practice of pediatric palliative care. Perhaps even more important than what we say is what we don't say, and how we don't say it, and when it isn't said. Join Sarah and Dan for an exploration of this truly golden feature of our specialty.

"Even a fool is thought wise if he keeps silent, and discerning if he holds his tongue." Proverbs 17:28

A social worker, a nurse practitioner, and three physicians walk into a podcast... There's no punchline, just the latest episode of PediPal, where Dan and Sarah interview three of the interprofessional fellows from the Boston Children's interprofessional fellowship program--Jennifer Donovan, Amy Porter, and Thomas Haire--and challenge ourselves to say the word "interprofessional" as many times as possible. We also include some clips from past episodes that resonate with the themes from the interview, so listen up for some old familiar voices from PediPal history.

How do you talk to a child about illness and death? For a field that deals with these challenging topics every day, we don't always feel comfortable helping our young patients and their families engage with them.  For guidance, Dan and Sarah turn to Elena Lister (@elenalistermd1) and Michael Schwartzman (@schwartzmanma), authors of Giving Hope: Conversations with Children About Illness, Death, and Loss.


Links to buy Giving Hope here at Indie Bound and Penguin Random House; available in hardcover, ebook, and audiobook formats.

The holiday season is ending and boy are we stuffed... with educational and entertaining content about one of pediatric palliative care's more misunderstood and controversial topics: overfeeding. Sarah and Dan round out 2022 talking with skeletal dysplasia expert Ricki Carroll (@RickiCarroll), hospice guru Glen Komatsu, and the inimitable Julie Hauer about those times when our patients are getting too much nutrition and all the problems that can cause. 

Does practicing pediatric palliation promote positive parenting? Does parenthood put palliative practitioners in a preferable position? Dan and Sarah partner up to ponder these profound puzzles and palaver with Jessica Casas and Daniel Mahoney (@DanielMahoneyMD),  and Claire Crawford (@PalliativClaire), all from the Pediatric Advanced Care Team at Texas Children's Hospital.

(CN: This episode deals with the topic of pregnancy loss.)

In our final international episode, Sarah and Dan speak with Doctora Rut Kiman (@KimanRut) about pediatric palliative care in Argentina and throughout Latin America.

Curative therapy and hospice... at the same time?! Since the Affordable Care Act, pediatric patients don't have to give up one to benefit from the other. But does this model really work, and does it make sense for the realities of pediatric palliative care and hospice as in 2022? To figure it all out, Sarah and Dan have a concurrent conversation with Steven Smith (@stevenmsmith913) and Conrad Williams (@conradw4) about Cadillacs, cookies, and #PedPC's biggest Twitter rivalry.

Where in the world is PediPal? South Africa! Sarah and Dan interview Julia Ambler (@AmblerJulia), the pediatric palliative care physician for Umduduzi Hospice Care for Children (https://umduduzi.co.za/) in Durban, KwaZulu-Natal.

How do medical marijuana and pediatric palliative care fit together? In this episode, Sarah and Dan seek some clarity about cannabis, interviewing two experts on the topic, Dr. Bonni Goldstein and Dr. Dustin Sulak. Listen to learn more about the endocannabinoid system and the impact that this much-maligned medicine has on it and on patients, often in ways we're only beginning to understand.


Resources mentioned in the episode and recommended by the guests:
Society of Cannabis Clinicians: https://www.cannabisclinicians.org
Dr. Sulak's book: https://wwnorton.com/books/9780393714180
Dr. Goldstein's book...

PediPal International steams onward, and we now find ourselves in Tokyo, Japan. In this episode, Sarah and Dan interview Nobuyuki Yotani 余谷 暢之, Head of the Department of Palliative Medicine at the National Center for Child Health and Development.

Welcome to Pediatrics. The first rule is, "Children are not just Little Adults." The second rule is also, "Children are not just Little Adults." But how does this trope fit into Pediatric Palliative Care? And is it possible that, instead, Adults are actually just Big Children??

In this episode, Sarah and Dan explore this idea with three different guests. Nimmy Simon (@palliativebear), a fellow who recently completed her pediatrics rotation, shares her reflections on the lessons learned. Sarah Keating, who had largely adult training but now works in pediatrics, shares the lessons she brought over and the...

Our world tour continues with this next stop in Wellington, New Zealand.  Dan and Sarah interview paediatric palliative care specialist Amanda Evans (@amaevans), who teaches them a bit of New Zealand history, some Maori concepts of health and illness, and a lesson on just how cool Jacinda Ardern really is.

As Sarah and Dan continue their international tour in 2022, they find themselves surprisingly close to home in Phoenix, Arizona... by way of England, and by way of an inspiring story of community, advocacy, and ingenuity.

In this Episode your PediPal crew hears the story of the Cottor family and the founding of Ryan House, as well as the hopes for the future of pediatric hospice houses in the USA. And they learn some of the logistical challenges on the other side of their common "If I won the lottery..." fantasy.

PediPal is going international! In this inaugural episode of our new series, Dan and Sarah interview Dr. Spandana Rayala (@SpandanaRayala), a pediatric palliative care physician in Hyderabad, India.

Webster's dictionary defines "liminality" as... Just kidding. But not really.
In this episode, Dan and Sarah put on novice anthropologist hats and start to explore the role that ritual plays in Pediatric Palliative Care: in bereavement, in the day to day flow of the team, and in things as mundane as stapling your morning list. Social worker Caitlin Scanlon (@caitlin_scanlon) and music therapist Kristen O'Grady (@KOGrady_MTBC) join us to talk about the ways they participate in ritual, witness ritual, and think about the concept of liminality.

"So, what kind of work do you do?" When you're in pediatric palliative care, what answer do you give? And how do you respond to the inevitable follow-ups? "That's so sad," "You must be so special," "I could never do that..." We've all been there. So in this final episode of 2021, Dan and Sarah interview three peds palliative physicians—Allison Silverstein (@agsils), Jared Rubenstein (@DrJRubenstein), and Chris Adrian—about their responses to the dreaded cocktail party questions, as well as their insights on what these questions and answers teach us about very the nature palliative care and its practitioners.
...

Music therapy, art therapy, child life, and pediatric palliative care resonate with each other in a lot of important ways. In this episode, Dan and Sarah chat with.... Dan and Sarah?! Yep, that's music therapist Dan Stafford and art therapist and child life specialist Sarah Yazdian Rubin. The Dans and Sarahs discuss creativity and loss, the roles expressive therapies can play in pediatric palliative care, and just how similar our respective fields can be. 

If there's something long-acting that targets multiple receptors and has a variable equianalgesic dose ratio in your neighborhood, who you gonna call?
Eduardo Bruera (@edubru) and Kevin Madden (@madden_kevin), of MD Anderson Cancer Center!
Get ready for chills and thrills as they take Sarah and Dan on a haunted tour of that spooky old opioid, methadone, and bust some of the myths about dosing, QT prolongation, and more.

Was starting this podcast academic suicide for Sarah and Dan? That remains to be seen, but interviewing Joanne Wolfe (@WolfePPC) and Chris Feudtner was definitely a good choice!  In this episode, hear two of the founding figures of pediatric palliative care in the USA discuss the rocky roads they traveled, individually and together, to establish themselves in a specialty that they were creating as they went. What's changed the most since the early days? What prognostications do they have for the future? Is Dan angling for a musical gig on GeriPal? Listen to Episode 7 to f...

Do you like my hat? No? How about this one?
In this episode, Sarah and Dan talk with three physicians who each wear two hats: palliative care and another specialty.
Wynne Morrison (Children's Hospital of Philadelphia) dons and doffs a PICU chapeau, Natasha Henner (Lurie Children's Hospital) wears a NICU cap, and Elisabeth Dellon (UNC Children's Hospital) is ready to switch from palliative to pulmonology and back at the drop of a... well, you get it.
So what's it like to practice two specialties concurrently? And is this millinery metaphor...

Hola, somos el equipo de cuidados paliativos!

نحن مجموعة من الأطباء والممرضات والأخصائيين الاجتماعيين والقساوسة ، هنا لتقديم ...

...wait, how do you say "extra layer of support" in Arabic? And can I scan this POLST form into Google Translate?

Welcome to Episode 5, in which Sarah and Dan interview two medical interpreters about the challenges and joys of interpreting in the pediatric palliative care setting. Daniela Obregón (@GetConnCare) is an independent Spanish language interpreter, translator, and cultural consultant, and Amani Zaki is an Arabic interpreter at Children's Hospital Los Angeles. What habits of clinicians drive interpreters crazy? What's it like to be the conduit for so much emotionally-charged language in family

How lovely it would be if everyone were as thoughtful and palliative-minded as we are! Palliative care providers are meticulous about language when talking to patients and families, but are we as thoughtful about the words we use to talk about our patients and families?

In Episode 4, Sarah and Dan talk to Gitanjli Arora, MD (@pedsworld), and Rachel Rusch, LCSW, MA (@RuschRachel), from the CHLA Comfort and Palliative Care Team. Inspired by Dr. Arora's essay, "A Lovely Family," in the Journal of Palliative Medicine (@PalliativeMed_j), we discuss how even the most lovely of words can prevent...

As Pediatric Palliative Care grows, new programs are started and restarted, often by recent fellowship graduates. This leaves the landscape of PPC dotted with islands of solo providers or tiny teams in various stages of growing pains.

In this third episode of Pedipal, Sarah and Dan indulge their pandemic-thwarted wanderlust, island hopping among three different palliative islands, each with its own unique history:
Our first stop is with Dr. Ami Mehta, founder of the first dedicated Palliative Care service at Children's Hospital of the King's Daughters in Norfolk, Virginia.
Then we visit ...