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

What is frailty? Kate Callahan relates a clear metaphor on today’s podcast.  A frail person is like an origami boat: fine in still water, but can’t withstand a breeze, or waves.  Fundamentally, frailty is about vulnerability to stress.

In 2021 we talked with Linda Fried about phenotypic frailty.  Today we talk with Kate Callahan, Ariela Orkaby, & Dae Kim about deficit accumulation frailty.  What is the difference, you ask?  George Kushel probably explained it best in graphical terms (in JAGS), using the iconic golden gate bridge as a metaphor (Eric and I get to see the bridge daily driving or biking in to work). Phoenotypic frailty is like the main orange towers and thick orange support cables that run between towers.  Damage to those critical functions and the bridge can collapse.  Deficit accumulation frailty is like the hundreds of smaller vertical cables that connect the thick orange support cables to the bridge itself. Miss a few and you might be OK.  But miss a bunch and things fall apart.  Resilience is the ability of the bridge to withstand stress, like bridge traffic,  wind, waves, and the occasional earthquake (hey it’s California!).

Frailty research has come a long way.  We’re now at a point where frailty can be measured automatically, or electronically, as we put in the title.  Kate created an eFrailty tool that measures frailty based on the electronic health record (EHR) data.  Ariela created a VA frailty index based on the EHR of veterans.  And Dae created an index using Medicare Claims.  Today we’re beginning to discuss not just how to measure, but how to use these electronic frailty indexes to improve care of patients.

We should not get too hung up on battles over frailty.  As Kate writes in her JAGS editorial, “If geriatricians wage internecine battles over how to measure frailty, we risk squandering the opportunity to elevate frailty to the level of a vital sign. Learning from the past, a lack of consensus on metrics impeded the mainstream adoption of valuable functional assessments, including gait speed.”

To that end, modeled after ePrognosis, Dae and Ariela have launched a new tool for clinicians that includes multiple frailty measures, with guidance on how to use them and in what settings.  It’s called eFrailty, check it out now!

Did I cheat and play the guitar part for Sting’s Fragile at ⅔ speed then speed it up?  Maybe…but hey, I still only have 2 usable fingers on my left hand, give me a break!

-@AlexSmithMD 

Additional Links:

eFrailty website is: efrailty.hsl.harvard.edu (efrailty.org is fine).

Dae’s Frailty indexesCGA-based frailty index web calculator for clinical use: https://www.bidmc.org/research/research-by-department/medicine/gerontology/calculator

The Medicare claims-based frailty index program for research: https://dataverse.harvard.edu/dataverse/cfi/

Ariela’s VA-FI:Original VA frailty index: https://academic.oup.com/biomedgerontology/article/74/8/1257/5126804

ICD-10 version https://academic.oup.com/biomedgerontology/article/76/7/1318/6164923

Link to the code for investigators (included in the appendix): https://github.com/bostoninformatics/va_frailty_index 

As an FYI for those in VA the code is readily available through the Centralized Interactive Phenomics Resource (CIPHER)

Recent validation against clinical measures of frailty: https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/jgs.18540

Kate’s eFrailty Index https://doi.org/10.1093/gerona/glz017 our original eFI paper

https://doi.org/10.1111/jgs.17027 &  https://doi.org/10.1001/jamanetworkopen.2023.41915 on eFI and surgery

https://doi.org/10.1111/jgs.17510 editorial in JAGS

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

In the last several years, I’ve seen more and more articles about end-of-life doulas (like this NY Times article from 2021). Despite this, in my 20-year career as a palliative care physician, I have yet to see a death doula in the wild. I’m unsure what they do, how often they’re used, and who pays for their work. So, on today’s podcast, we try to get to the bottom of what exactly is an end-of-life doula.

We’ve invited two death doulas, Jane Euler and John Loughnane (who is also a family doc and palliative care physician), to talk about the role of a doula at the end of life.  We also invited Beth Klint to speak about the doula's role within a traditional hospice organization. Why Beth?  In addition to being a palliative and hospice RN, she is the Executive Director for Goodwin Hospice, a large non-profit hospice that added end-of-life doula care to their services in collaboration with Jane and John’s doula organization, Present for You.

If you are interested in learning more about death doulas, check out the following links

• Goodwin Hospice’s article on the collaboration with Present for You

• A HospiceNews article talking about the value proposition of death doulas for hospices

• NHPCO’s End-of-Life Doula Council page that includes a lot of great links

Today we celebrate eight years, around 2 million listens, and 300 podcasts! 

Eric and I take questions from you, our listeners, about: why we podcast, our most controversial podcast, which podcast changed our practice, favorite song request, should all nursing home residents complete the POLST, expanding access to durable medical equipment, palliative care in rural regions, do we have an advance directive, what we’d do to improve healthcare with 7 trillion dollars, treatment for poor appetite, and Eric on how to make a latte.  Thank you to Lynn Flint and Anne Kelly who serve as hosts for this episode, asking us the tough questions.

We answer your questions hot ones style.  I borrowed some screaming hot sauces from my friends Jerome Kim and Tony Le, and added them to my small collection of extra mild sauces.  Every two questions we ate a chicken wing covered in hot sauce. The hot sauces progressed from mild to extreme (and I mean extreme) heat.

Can I just say…it works?  Being asked a question with your mouth on fire, sweat streaming down your face, feeling the most awake and terrified you have ever been in your life, forces you to give an unadorned answer, straight from the heart.

Don’t take my word for it, listen for yourself! Or better yet, watch the video of this one on YouTube. Some of the funniest parts are caught on video, in the background. We will be re-watching this one for years to come.

Thank you, dear listeners, for sending us your questions, for your enthusiasm, and for your support. Enjoy!

-@AlexSmithMD

In our podcast with palliative care pioneer Susan Block, she identified the psychological/psychiatric aspects of palliative care as the biggest are of need for improvement.  As she said, when you think about the hardest patients you’ve cared for, in nearly all cases there was some aspect of psychological illness involved.  That rings true to me.

Today we talk with two psychologists who are deeply invested in addressing psychological aspects of care for people living with serious illness. Elissa Kozlov, a geropsychologist and director of a new population aging MPH at Rutgers, surveyed AAHPM members, and found that doctors reported major shortcomings in level of comfort and knowledge caring for patients with psychological illness. She conducted a systematic review and meta-analysis of 38 palliative care trials, finding that many excluded people with serious illness, and a lack of impact on psychological outcomes.  Analyzing the Health and Retirement Study, she found 60% of older adults screened positive for depression in the last year of life (related study here).

Des Azizoddin is a psychologist at the University of Oklahoma primarily focused on pain for people with cancer. Des delivered a plenary at this year’s National Palliative Care Research Center’s Foley retreat. She began by asking, “Raise your hand if you think there is a psychological component to cancer pain.” All hands go up.  Then, “Keep your hand up if you frequently refer patients with cancer pain to a psychologist?” All hands go down.  Unfortunately, we lack the financial structures to reimburse psychologists that would incentivize widespread inclusion on palliative care teams.  Because we live in the world as it is, not as it should be, Des has helped develop an app (link to pilot trial hot off the press!) to help people with cancer pain engage in cognitive behavioral therapy in bite sized 3-4 minute sessions (there are other apps available now developed in the VA, who have been leaders in the psychology/palliative care space).  Des additionally studied stigma associated with opioid use among patients with cancer in the context of the opioid epidemic;  depression, pain catastrophizing, recent surgery and opioid use among people with cancer.

And, we talk about these issues and more (with far more nuance than I can include in this post). 

Kudos and credit to my son Renn, age 15, for the guitar on Heartbeats (hand still broken at time of recording).

We've talked about Falls a couple of times on this podcast, most recently with Tom Gill about the STRIDE study and before that with Sarah Szanton about the CAPABLE study.  A takeaway from those podcasts is that fresh innovative thinking in the falls prevention space is welcome.

Today we talk with the twin sister power duo of Carmen Quatman and Katie Quatman-Yates about an intervention that is both brilliant and (in retrospect) should have been obvious.  The insight started when Carmen, an orthopedic surgeon-researcher, and Katie, a physical therapist- researcher participated in ride-alongs with EMS providers to patient’s homes.   They were stunned by the number of calls for lift assistance for older adults who had fallen. Going into patient's homes was eye opening. There were trip hazards, loose carpets, some people were hoarders. And yet, after assisting the older adult to their feet, the EMS providers would leave. Their job was done. It's not surprising that the number of repeat calls for falls is alarmingly high.  Addressing the root environmental causes of falls was not part of EMS providers' job description.  In addition to stigma, practical barriers to older adults addressing environmental issues themselves abound. For example, Carmen and Katie found thousands of grab bars on Amazon (overwhelming), and when they called installation companies (handypersons), received different quotes if the person calling was a man or a woman.

So Carmen and Katie developed an EMS Community Partnership program.  EMS providers were trained to provide practical home modifications: installation of grab bars, removal of carpets, removal of other obstacles. They created a seamless link between this Community Partnership program and 911 calls for falls.  People who had grab bars installed through the program called their neighbors and say, hey you should get this too.  Word of mouth spread rapidly.  And the number of calls for falls dropped.

Eric and I enjoyed talking with Carmen and Katie about this innovative and common sense approach to addressing falls in the community.

In addition to the podcast, you can see more about this in Carmen's TEDx talk.

Thanks to my wife Cindy Hsu for piano on Eye of the Tiger. Enjoy!

-@alexsmithMD