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

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:

1. ELNEC has trained more than 48,000 providers in a train the trainer model

2. Over 1.5 million clinicians have been educated in ELNEC

3. ELNEC curricula are integrated int 1180 undergraduate and 394 graduate Schools of Nursing

4. 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

Eric asks the question that is on many of our minds - is the future of AI more Skynet from Terminator, in which AI takes over the world and drives humanity to the brink of extinction, or Wall-E, in which a benevolent and empathetic AI restores our humanity?

Our guest today is Bob Wachter, Chair of Medicine at UCSF and author of the Digital Doctor: Hope, Hype, and Harm at the Dawn of Medicine’s Computer Age. Bob recently wrote an essay in JAMA on AI and delivered a UCSF Grand Rounds on the same topic. We discuss, among other things:

• Findings that in several studies AI was rated by patients as more empathetic than human clinicians (not less, that isn’t a typo). Turns my concern about lack of empathy from AI on its head - the AI may be more empathetic than clinicians, not less.

• Skepticism on the ability of predictive models to transform healthcare

• Consolidation of EHR’s into the hands of a very few companies, and potential for the drug and device industry to influence care delivery by tweaking AI in ways that are not transparent and already a sort of magical black box.

• AI may de-skill clinicians in the same way that autopilot deskilled pilots, who no longer new how to fly the plane without autopilot

• A live demonstration of AI breaking a cancer diagnosis to a young adult with kids (VITAL Talk watch out)

• Use cases in healthcare: Bob predicts everyone will use digital scribes to chart within two years

• Concerns about bias and other anticipated and unanticipated issues

And a real treat- Bob plays the song for this one! Terrific rendition of Tomorrow from the musical Annie on piano (a strong hint there about Bob’s answer to Eric’s first question). Enjoy!

-@AlexSmithMD

Ambivalence is a tough concept when it comes to decision-making. On the one hand, when people have ambivalence but haven't explored why they are ambivalent, they are prone to bad, value-incongruent decisions. On the other hand, acknowledging and exploring ambivalence may lead to better, more ethical, and less biased decisions.

On today's podcast, Joshua Briscoe, Bryanna Moore, Jennifer Blumenthal-Barby, and Olubukunola Dwyer discuss the challenges of ambivalence and ways to address them. This podcast was initially sparked by Josh’s “Note From a Family Meeting” Substack post titled “Ambivalence in Clinical Decision-Making,” which discussed Bryanna’s and Jenny’s 2022 article titled “Two Minds, One Patient: Clearing up Confusion About Ambivalence."

Bryanna’s and Jenny’s article is particularly unique as it discusses these “ambivalent-related phenomena” and that these different kinds of “ambivalence” may call for different approaches with patients, surrogates (and health care providers):

In addition to defining these “ambivalent related phenomena” we ask our guests to cover some of these topics:

• Is ambivalence good, bad, or just a normal part of decision-making?

• Does being ambivalent mean you don’t care about the decision?

• What should we be more worried about in decision-making, ambivalence or the lack thereof?

• The concern about resolving ambivalence too quickly, as it might rush past important work that needs to be done to make a good decision.

• What about ambivalence on the part of the provider? How should we think about that?

• How do you resolve ambivalence?

Lastly, the one takeaway point from this podcast is that the next time I see ambiguity (or have it myself), I should ask the following question: “I see you are struggling with this decision. Tell me how you are feeling about it.”

In 1983, a 25 year old Nancy Cruzan was thrown from her car while driving home in Missouri, landing in a water filled ditch. She was resuscitated by EMS, but did not regain higher brain function, and was eventually diagnosed as being in a persistent vegetative state. In 1988, Cruzan’s parents requested that her feeding tube be removed, arguing that she would not want to continue in this state. The hospital refused without a court order, and the case eventually made its way to the Supreme Court. Arguing for the state of Missouri against the Cruzan’s was Ken Starr, who would later be assigned the role of special prosecutor in the investigation of the Clintons (Whitewater, Lewensky, etc).

In 1990 the Supreme Court ruled…for the state of Missouri. On the one hand, this was unfortunate, as it meant Nancy Cruzan could not be disconnected from the feeding tube immediately. On the other hand, the ruling allowed states to set their own evidentiary standards to refuse or withdraw life sustaining interventions. Missouri set a very high bar, explicit written documentation that applies to this specific circumstance, which the Cruzan’s eventually cleared. Other states set lower bars, including oral assignment of surrogate decision-makers. The Cruzan ruling led to a flood of interest in Advance Directives, and eventually to the Patient Self Determination Act, which mandates provision of information about advanced directives to all hospitalized patients.

Today, we talk with Bernie Lo, prominent bioethicist and practicing primary care internist, and Laurie Dornbrand, geriatrician at the IOA On Lok PACE, about the legacy of Nancy Curzan. We use Bernie’s NEJM Perspective as a springboard for discussion. We discuss, among other things:

• How and why in the 30 years since the Cruzan ruling the emphasis has shifted from advance directive forms to in-the-moment discussions

• And validating the importance of the advance directive forms in some circumstances, and in starting conversations

• The role of the clinician in engaging patients in advance care planning and in-the-moment serious illness conversation: what questions are important? What words to use?

• Is the POLST useful? How? Under what circumstances?

• Should we abandon the term, “comfort measures?”

In case you miss the introductions at the start of the podcast, Bernie and Laurie are married, and offer wonderful reminiscence of their clinical practice over the last several decades. So when Bernie says, “I’ve heard you take these phone calls in the middle of the night, Laurie…” Now you know why!

And great song choice: Both Sides Now by Joni Mitchell. Joni suffered a stroke and had to completely re-learn how to play guitar. Her comeback performances are inspirational, such as this one at the Newport Folk Festival, attended by another influential GeriPal couple, Sean Morrison and Diane Meier. You get to hear my stripped down Hawaiian slack key style version of Both Sides Now (easy to play with 2 fingers, still in rehab for broken hand, hoping to have full use again soon). Enjoy!

-@AlexSmithMD

One marker of the distance we’ve traveled in palliative care is the blossoming evidence base for the field. Ten years ago we would have been hard pressed to find 3 clinical trial abstracts submitted to the annual meeting, much less high quality randomized trials with robust measures, sample sizes, and analytics plans. Well, as a kick off to this year’s first in-person State of the Science plenary, held in conjunction with the closing Saturday session of the AAHPM/HPNA Annual Assembly, 3 randomized clinical trials were presented.

Today we interview the authors of these 3 abstracts about their findings:

• Tom LeBlanc about a multisite trial of palliative care for patients undergoing Stem Cell Transplant for blood cancers (outcomes = quality of life, depression, anxiety)

• Kate Courtright about a pragmatic trial of electronic nudges to prognosticate and/or offer comfort-focused treatment to mechanically ventilated ICU patients/surrogates (outcomes = lengths of stay, hospice, time to discontinuation of life-support)

• Corita Grudzen on a pragmatic trial of two palliative care approaches for patients with advanced cancer or organ failure discharged from the ED: a nurse-led telephone intervention or outpatient specialty palliative care clinic (outcomes = quality of life, symptom burden, loneliness, healthcare utilization)

Wow! I’m just stunned even writing that! We’ve come so far as a field. This isn’t to say we’ve “made it” - more to say that we’ve reached a new stage of maturation of the field - in which the evidence we are discussing is frequently high quality randomized trial level data.

We recorded this on Friday during the annual assembly, and Eric and I were a littttttle off our game due to the residual effects of the GeriPal pub crawl the night before, which were only compounded by technical difficulties. I believe these issues were more than made up for by our guests' forced accompaniment to the song “Feel Like Making Science.” (Credit to the Beeson singing crew for coming up with that one).

Enjoy! -@AlexSmithMD

Almost a decade ago, our hospice and palliative care team decided to do a “Thickened Liquid Challenge.” This simple challenge was focused on putting ourselves in the shoes of our patients with dysphagia who are prescribed thickened liquids. The rules of the challenge were simple: fluids must be thickened to “honey consistency” using a beverage thickener for a 12-hour contiguous period.

All of us failed the challenge. We then decided to challenge others and asked them to post their videos online using the hashtag #thickenedliquidchallenge. Here are some of the results of those videos: https://geripal.org/the-thickened-liquid-challenge/

On today’s podcast, we revisit dysphagia and thickened liquids with two researchers and speech-language pathologists, Raele Donetha Robison and Nicole Rogus-Pulia. We talk with them about the epidemiology, assessment, and management of dysphagia, including the role of modifying the consistency of food and liquids, feeding tubes, and the role of dysphagia rehabilitation like tongue and cough strengthening. We also talk about the importance of a proactive approach to involving speech-language pathologists in the care of individuals early on with neurodegenerative diseases like dementia and ALS.

If you want to take a deeper dive, take a look at these articles:

• A nice overview of swallowing disorders in the older adults published in JAGS

• A study in JAGS showing that 89% of feeding tubes inserted during hospitalization were in patients with no preexisting dysphagia

• Nicole’s article on shifting to a proactive approach of dysphagia management in neurodegenerative disease