GeriPal - A Geriatrics and Palliative Care Podcast

Can death be portrayed as beautiful?

In this episode, we share the joy of talking with Wendy MacNaughton (artist, author, graphic journalist) and Frank Ostaseski (Buddhist teacher, author, founder of the Metta Institute and Zen Hospice Project) about using drawings and images as tools for creating human connections and processing death and dying.

You may know Wendy as the talented artist behind Meanwhile in San Francisco or Salt Fat Acid Heat. Our focus today, however, was on her most recently published book titled How to Say Goodbye. This beautiful book began as a very personal project for Wendy while she was the artist-in-residence at Zen Hospice. As BJ MIller writes in the foreword, “May this book be a portal -- a way for us to move beyond the unwise territory of trying to ‘do it right’ and into the transcendent terrain of noticing what we can notice, loving who we love, and letting death -- like life --surprise us with its ineffable beauty.”

Some highlights from our conversation:

• The role of art in humanizing the dying process.
• How the act of drawing can help us sloooow down, pay attention to the people and world around us, and ultimately let go...
• The possibility of incorporating drawings in research and even clinical care.
• The wisdom and experiences of hospice caregivers (who are often underpaid and undervalued).
• How to use the “Five Things” as a framework for a “conversation of love, respect, and closure” with someone who is dying.

And finally, Wendy offers a drawing lesson and ONE-MINUTE drawing assignment to help us (and our listeners) be more present and connect with one another. You can read more about this blind contour exercise from Wendy’s DrawTogether Strangers project. The rules are really quite simple:

• Find another person.
• Sit down and draw each other for only one minute.
• NEVER lift up your pen/pencil (draw with a continuous line)
• NEVER look down at your paper

That’s it! While the creative process is what truly matters, we think that the outcome is guaranteed to be awesome and definitely worth sharing. We invite you to post your drawings on twitter and tag us @GeriPalBlog!

Happy listening and drawing,

Lingsheng @lingshengli

Additional info:

• For weekly lessons on drawing and the art of paying attention from Wendy, you can subscribe to her Substack DrawTogether with WendyMac and join the Grown-Ups Table (GUT)!
• To learn more about Frank’s teaching and philosophy on end-of-life care, read his book The Five Invitations

This episode of the GeriPal Podcast is sponsored by UCSF’s Division of Palliative Medicine, an amazing group doing world-class palliative care. They are looking to build on both their research and clinical programs and are interviewing candidates for the Associate Chief of Research and for full-time physician faculty to join them in the inpatient and outpatient setting. To learn more about job opportunities, please click here: https://palliativemedicine.ucsf.edu/job-openings

** This podcast is not CME eligible. To learn more about CME for other GeriPal episodes, click here.

There’s a saying, “never let a crisis go to waste.” The pandemic was horrific in many ways. One positive change that came about was the lifting of restrictions around the use of telemedicine. Clinicians could care for patients across state lines, could prescribe opioids without in person visits, could bill at higher rates for telemedicine than previous to the pandemic. Many patients benefited, not only those isolating due to covid, but also patients in rural areas, patients who are homebound, and many others. So now that the emergency response has ended, what’s to be done?

In this podcast, Joe Rotella, Chief Medical Officer of the American Academy of Hospice and Palliative Medicine, Brook Calton, Palliative Care doc at Massachusetts General Hospital and Medical Director at Devoted Health, and Carly Zapata, Palliative Care doc at UCSF and fellowship director, talk about the importance of maintaining access to telehealth for the good of patients with serious illness. This DEA is taking 6-months to consider how to move forward vis a vis restrictions and requirements for telehealth in a post-pandemic world. Now is the time to act, dear listeners! You can:

• Write an Op-Ed to your local paper as Carly Zapata and colleagues did. Start with a story as Carly did in her Op Ed. Stories trump data.
• Write to your congressperson. See the AAHPM Legislative Action Center https://www.votervoice.net/AAHPMORG/home
• Write to the DEA, with guidance from AAHPM’s comments to the DEA March 2023.
• Advocate for the CONNECT for Health Act, which would permanently expand access to telehealth for Medicare beneficiaries: https://www.schatz.senate.gov/imo/media/doc/connect_for_health_act_2023_summary1.pdf

Much more on this podcast, including puzzling out who the characters in Space Oddity by David Bowie might represent in an extended analogy to telehealth. Enjoy!

-@AlexSmithMD

I don't know 'bout religion I only know what I see And in the end when I hold their hand It's both of us set free

These are the ending lyrics to Bonnie Raitt’s song “Down the Hall”, an ode to the Pastoral Care Workers who care for their fellow inmates in the hospice unit at the California Medical Facility in Vacaville, California. On last week’s podcast we interviewed the medical director and the chaplain of the prison’s hospice unit (Hospice in Prison Part 1). This week we turn our attention to the inmates.

Pastoral Care Workers are inmates who volunteer time to care for the dying who come from all around California to spend their last days, weeks or months in the prison’s hospice unit, fulfilling a mission that “no prisoner dies alone.”

On today's podcast we talk with three of these Pastoral Care Workers, Jerry Judson, Jeffrey Maria, and Allan Krenitzky. We discuss with them why they decided to volunteer for the hospice unit, what a day in the life of a Pastoral Care Worker looks like, and among other things their thoughts on forgiveness, redemption, rehabilitation, and compassionate release.

We also had the pleasure to take a walk through the hospice unit garden with Mr. Gerald Hite. He taught us a little about the different flowers and plants, and along the way a little about why he does what he does.

While this is a podcast about volunteers in a prison hospice, I think it also serves as a lesson for us all about how we make meaning to our own lives and define ourselves by not only what we have done in the past, but what we do now. One story that Allan told perfectly sums this up. He said one day his son asked his wife what he does for a living, and his wife said “Papa helps sick people.”

Artificial Intelligence, or AI, has tremendous potential. We talk on this podcast about potential uses of AI in geriatrics and palliative care with natural language processing guru Charlotta Lindvall from DFCI, bioethicists and internist Matt DeCamp from University of Colorado, and prognosis wizard Sei Lee from UCSF.

• Social companions to address the epidemic of loneliness among older adults
• Augmenting ability of clinicians by taking notes
• Searching the electronic health record for data
• Predicting mortality and other outcomes

We talk also about the pitfalls of AI, including:

• Recapitulation bias by race and ethnicity, and other factors, exacerbating disparities
• Confidentiality concerns: do those social companions also monitor older adults for falls? 24/7?
• Hallucinations, or when the AI lies or bullshits, then denies it
• When the AI approaches sentience, is it ethical to unplug it?

I’m sure this is a subject we will return to, given the rapid progress on AI.

Enjoy!

-@AlexSmithMD

Links:

Papers on AI and palliative care and concerns about bias: https://www.healthaffairs.org/do/10.1377/forefront.20200911.401376/ https://academic.oup.com/jamia/article/27/12/2020/5859726

Comparison of machine learning vs traditional prognostic methods based on regression: https://www.ingentaconnect.com/content/wk/mcar/2022/00000060/00000006/art00011

Other links on the issue of AI and racial or ethnic bias:

Are Robots Racist? Greenwall Foundation Bill Stubbing lecture Are Robots Racist? Rethinking Automation and Inequity in Healthcare https://www.nber.org/papers/w30700 https://www.science.org/doi/10.1126/sciadv.add2704 https://theconversation.com/including-race-in-clinical-algorithms-can-both-reduce-and-increase-health-inequities-it-depends-on-what-doctors-use-them-for-206168

MD Calc approach to inclusion of race https://www.mdcalc.com/race

Our guests today present an important rejoinder to the argument that we should refocus away from advance care planning (ACP). Sarah Nouri, Hillary Lum, and LJ Van Scoy argue that diverse communities are asking for ACP. Sarah Nouri gives an example from her work in the LGBTQ+ community of a trans woman who was buried as a man because existing laws/rules did not protect her wishes. Others cited the call from communities to meet them where they are - be they senior centers, Black-owned businesses, or churches (we have a podcast planned in the fall with Fayron Epps and Karen Moss on the church setting). It does seem that if communities, particularly historically marginalized communities, are interested in ACP, that fact should carry some weight in how resources are allocated to research and health care financing.

We additionally have a debate/discussion about which outcomes of ACP matter most, including Terri Fried’s commentary in JAGS that caregiver outcomes matter more than goal concordant care (the “holy grail”), completion of advance directives, or changes in health care services use. Did the caregiver feel heard and understood? Did they have PTSD? Complicated grief? Depression?

Group visits are one way of reaching diverse communities to which advance care planning has not traditionally been targeted. In a group visit there is a social norming effect - “if my neighbor is doing it, perhaps I should be doing it to?”

Please tune in to hear more, and listen to the whistle of the “Friendship train!”

-@AlexSmithMD

Links:

Community Based Participatory Research and ACP in Latinx communities: https://agsjournals.onlinelibrary.wiley.com/doi/abs/10.1111/jgs.18236

Community based ACP in the Black Community: https://link.springer.com/article/10.1007/s11606-023-08134-2

ACP in the Chinese American Community: https://www.sciencedirect.com/science/article/pii/S0885392423000982

Group ACP in primary care: https://www.annfammed.org/content/14/2/125.short and https://agsjournals.onlinelibrary.wiley.com/doi/abs/10.1111/jgs.16694

Project Talk Website: www.ProjectTalkTrial.org

Project Talk Trial Protocol Paper: https://journals.sagepub.com/doi/pdf/10.1177/1049909116656353

Hello Article (including Black churches): https://jamanetwork.com/journals/jamanetworkopen/article-abstract/2765685

Communication Quality Analysis: https://www.tandfonline.com/doi/abs/10.1080/19312458.2022.2099819

Conceptualizing Surrogate Decision Making: https://www.tandfonline.com/doi/abs/10.1080/19312458.2022.2099819

What counts as a surrogate decision: https://journals.sagepub.com/doi/abs/10.1177/10499091231168976

For e-training modules on ACP group visits: https://cuelearning.org

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