One of my favorite Piece of My Mind essays in JAMA is by Rebecca Sudore, titled, “Can We Agree to Disagree?”  And today our guests agree to disagree.   And yet, and yet… They also agree across a whole range of issues, some of which surprised us. This is the latest in our series of podcasts on concerns about, and potential of advance care planning.  If you’re new to this discussion, don’t start with this podcast!  Start by reading this article by  Sean Morrison, Diane Meier, and Bob Arnold in JAMA, and this  response from Rebecca Sudore, Susan Hickman, and Anne Walling. Then listen to these prior podcasts with  Sean Morrison and  Rebecca Sudore about this issue, and we recently discussed differences between Advance Care Planning and Serious Illness Communication with  Juliet Jacobsen and Rachelle Bernacki.   On today’s podcast we ask our guests about areas in which there might be agreement or disagreement, including:   The Best New York style bagels are made in California. Assigning a surrogate decision maker is important for everyone, including those who don’t have serious illness. Where does POLST fit in with this debate? All decisions are made in advance, the question that we are debating is how far in advance and what to call it Completion of advance directives and billing codes for advance care planning as quality metrics  Among other topics.  I’m heartened that we could have this discussion as a field, as it shows that we’ve grown to the point where we can agree to disagree respectfully with each other.   We can work it out! Links to a few couple items mentioned on the podcast:  Objectives for Advance Care Planning 2018 Systematic Review of Systematic Reviews on ACP  -@AlexSmithMD

Advance Care Planning Discussion: Susan Hickman, Sean Morrison, Rebecca Sudore, and Bob Arnold

A geriatrics and palliative care podcast for every health care professional. 

We invite the brightest minds in geriatrics, hospice, and palliative care to talk about the topics that you care most about, ranging from recently published research in the field to controversies that keep us up at night.   You'll laugh, learn and maybe sing along.  Hosted by Eric Widera and Alex Smith. CME available!

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As Eric notes at the end of today’s podcast, we talk about many difficult issues with our patients.  How long they might have to live. Their declining cognitive abilities. What makes their lives meaningful, brings them joy, a sense of purpose.  But one issue we’re not as good at discussing with our patients is sexual health. On today’s podcast Areej El-Jawahri, oncologist specializing in blood cancers at MGH, says that sexual health is one of the top if not the top issue among cancer survivors.  Clearly this issue is important to patients.  Sharon Bober, clinical psychologist at DFCI, notes that clinicians can get caught in an anxiety cycle, in which they are afraid to ask, don’t ask, then have increased anxiety about not asking.  Like any other conversation, you have to start, and through experience learn what language is comfortable for you.  Don Dizon, oncologist specializing in pelvic malignancies at Brown, suggests speaking in plain language, starting by normalizing sexual health issues, to paraphrase, “Many of my patients experience issues with intimacy and sexual health. Is that an issue for you? I’m happy to talk about it at any time.”  All guests agree that clinicians feel they need to have something they can do if they open Pandora's box.  To that end, we talk about practical advice, including:   The importance of intimacy over and above physical sexual function for many patients   Common causes and differential diagnoses of sexual concerns in patients with cancer and survivors   Treatments for erectile dysfunction - first time the words “cock ring” have been uttered on the GeriPal Podcast - and discuss daily phosphodiesterase 5 inhibitor therapy vs prn   The importance of a pelvic exam for women experiencing pain   What is “pelvic physical therapy?”   Treatments for vaginal dryness and atrophy    ACS links, NCCN links, Cancersexnetwork, and a great handout that Areej created   And I get to sing Lady Gaga, also a first for GeriPal!  And let me tell you, there’s nothing like the first time (sorry, I couldn’t help it!).  

Sexual Function in Serious Illness: Areej El-Jawahri, Sharon Bober, and Don Dizon

The landscape of options for treating people with kidney failure is shifting.  It used to be that the “only” robust option in the US was dialysis.  You can listen to our prior podcast with  Keren Ladin talking about patients who viewed dialysis as their only option, and structural issues that led to this point (including this takedown of for profit dialysis companies by John Oliver).  One of the problems was a lack of an alternative robust option to offer patients.  As one of our guests says, you have to offer them something viable as an alternative to dialysis. Today we interviewed Sam Gelfand, dually trained in nephrology and palliative care, Kate Sciacca, a nurse practitioner (fellowship trained in palliative care), and Josh Lakin, palliative care doc, who together with a social worker and other team members started KidneyPal at DFCI/BWH, a palliative care consult service for people with advanced kidney disease.  As a team, they provide a robust alternative to dialysis for patients with kidney failure: conservative kidney management. And “conservative,” as they note, can mean not only a “conservative approach,” as in non-invasive/less aggressive, but also an effort to “conserve” what kidney function remains. We get right down to the nitty gritty of kidney supportive care techniques they incorporate in clinic, including:   Communication about the choice between dialysis and conservative kidney management: what are the tradeoffs?  Function often declines after initiating dialysis, at least among nursing home residents. Dialysis may extend life, but those “additional” days are often spent in the hospital or dialysis, away from home. Symptoms are common in both options, though more anxiety and cramping in dialysis, more pruritus and nausea in conservative kidney management..   Introducing the idea of hospice early, at the time of diagnosis with kidney failure. Listen also to our prior podcast with Melissa Wachterman on hospice and dialysis.   Approaches to treating fatigue   Approaches to treating pain - the second most common symptom (!) - and the answer isn’t tramadol (or tramadon’t) - rather think buprenorphine patch or methadone, and how to dose gabapentin and pregabalin. Also, don’t count out the NSAIDS!   Approaches to treating itching/pruritus   Approaches to treating nausea   Our guests were deeply grateful to their colleagues Dr. Frank Brennan, Dr. Mark Brown, and clinical nurse consultant Elizabeth Josland of the renal supportive care team at St. George Hospital in Sydney, Australia (down under) for teaching them the ropes of palliative care in kidney failure.  And we got to learn some new vocabulary, including the meaning of “chunder.”  Enjoy! -@AlexSmithMD  

Palliative Care for Kidney Failure: Sam Gelfand, Kate Sciacca, and Josh Lakin

Who gets to decide on what it means to have a disease? I posed this question a while  back in reference to Alzheimer's disease. I’ll save you from reading the article, but the main headline is that corporations are very much the “who” in who gets to define the nature of disease. They do this either through the invention of disease states or, more often, by redrawing the boundaries of what is considered a disease (think pre-diabetes). On today's podcast, we invite Adriane Fugh-Berman to discuss the influence of industry, whether it be pharma or device manufacturers, on healthcare. Adriane founded PharmedOut, a Georgetown University Medical Center project that “advances evidence-based prescribing and educates health care professionals and students about pharmaceutical and medical device marketing practices.” I’ve listened to a lot of Adriane’s talks. It is clear to me that she is not anti-medicine or even anti-pharma but is very much against both the visible and hidden influences that pharma and device manufacturers use to sell their products.  This could be through overt marketing like advertisements or drug rep visits, or more covert measures like unrestricted grants to advocacy organizations, funding of CME, paying “key opinion leaders,” or the development of “disease awareness campaigns.” So take a listen and dont worry, while GeriPal podcasts offer CME, we never take money from industry. By: Eric Widera      

How Pharma Invents Diseases: A Podcast with Adriane Fugh-Berman

On today’s podcast, we’ve invited four hospice and palliative care social media influencers (yes, that’s a thing!), all of whom focus their efforts on educating the general public about living and dying with a serious illness. Their work is pretty impressive in both reach (some of their posts are seen by millions of viewers) and breadth of work.  We’ve invited:   Julie McFadden (aka Hospice Nurse Julie): Julie is a social media superstar, with 1.5 million subscribers on TikTok, another 400,000 subscribers on her YouTube channel, and another 350k followers on Instagram. She covers topics on death, dying, and hospice from a hospice nurse perspective, and she also has a book coming out called “Nothing to Fear: Demystifying Death to Live More Fully,” which is now available for pre-order.     Matt Tyler (aka Pallidad for those on Twitter): Matt is the Hospice and Palliative care doctor who created How To Train Your Doctor, which helps patients living with serious illness find tips on “owning” their healthcare plan on his Instagram and  YouTube pages.  He was also the one who we have to thank for suggesting this podcast!   Hsien Seow & Samantha (“Sammy”) Winemaker: Hsein and Sammy's goal was to start a revolution with their podcast “The Waiting Room Revolution,” which is now in its 7th season! The hope was by going directly to those living with a life-changing illness, we could directly tackle the question that comes up so many times - “Why didn’t anyone tell me that sooner…”  They also just published a book,” Hope for the Best, Plan for the Rest,” and Sammy is a TikTok star in her own right, with some posts having over a million views.    We covered a lot of topics in the podcast from::    What motivated them to create public-facing social media channels?   Why focus on the public rather than other health care providers?   How do they deal with professional barriers and the barrage of comments?   Advice for others who might want to dabble in social media outreach     So, take a listen and check out their social media sites to get inspired. Just don't let Alex make me do another TikTok dance…   Eric Widera  

Public Facing Education via Social Media: A Podcast with Julie McFadden, Matt Tyler, Sammy Winemaker and Hsien Seow

As Betty Ferrell says on our podcast today, nurses play an essential role in care of people with serious illness.  Who spends the most time with the patient in the infusion center? Doing home care? Hospice visits? In the ICU at the bedside?  Nurses. ELNEC (End-of-Life Nursing Education Consortium) celebrates it’s 25th anniversary in 2025.  We talk today with Betty Ferrell, who has been a nurse for 47 years, and is the founder and PI of ELNEC. As I argue on the podcast, ELNEC has likely done more to lift the primary palliative care skills of clinicians than any other initiative.  Full stop.  Some numbers to back it up:   ELNEC has trained more than 48,000 providers in a train the trainer model   Over 1.5 million clinicians have been educated in ELNEC    ELNEC curricula are integrated int 1180 undergraduate and 394 graduate Schools of Nursing   ELNEC has been taught in over 100 countries   Today we talk about the origin story of ELNEC, the special role of nurses in palliative care, empowering as well as educating nurses, interprofessional ELNEC training, and opportunities and challenges ELNEC faces over the next 25 years. Enjoy! -@AlexSmithMD  

Advance Care Planning Discussion: Susan Hickman, Sean Morrison, Rebecca Sudore, and Bob Arnold

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