The need for better palliative care in nursing homes is significant. Consider this: the majority of the 1.4 million adults residing in U.S. nursing homes grapple with serious illnesses, and roughly half experience dementia. Many also suffer from distressing symptoms like pain. In addition, about 25% of all deaths in the United States occur within these facilities.

Despite these substantial needs, specialized palliative care beyond hospice is rare in nursing homes. Furthermore, only about half of nursing home residents nearing the end of life receive hospice care.

So, how can we improve palliative care for individuals in nursing homes? Today's podcast explores this crucial question with three leading experts: Connie Cole, Kathleen Unroe, and Cari Levy.

Our discussion delves into:

• The specific palliative care needs of nursing home residents.

• How to think about primary and specialized palliative care in this setting.

• The obstacles hindering referrals to palliative care services.

• Practical strategies to overcome these barriers and enhance care.
  
  

We also take a dive into these 2 articles that Connie first authored:

• Palliative care in nursing homes: A qualitative study on referral criteria and implications for research and practice. JAGS 2024

• Nursing Home Palliative Care Referral Process, Barriers, and Proposed Solutions: A Qualitative Study. 2024

If you are interested in learning more, check out some of our other palliative care in nursing home podcasts including:

• Discussion of a primary palliative care multinational trial with Lieve Van den Block

• Understanding the variability in nursing home care

• A podcast on Palliative Rehab?!? with Ann Henshaw, Tamra Keeney, and Sarguni Singh

Have any of you watched the movie “The Notebook”? At the end, one of the characters, who has dementia, experiences an episode of lucidity. When I watched it, between tears (I’m a complete softie) I remember thinking, “Oh no! This will give people false hope! That their loved one is ‘in there.’ If only they could find the right key to unlock the lock and let them out.”

Today we talk about lucid episodes and what they might mean to the person with dementia, their family and loved ones, to philosophers, to clinicians, to neuroscientists. Our guests are Andrea Gilmore-Bykovskyi, a nurse researcher, and Andrew Peterson, a philosopher.

We had a wide ranging discussion that touched on (among many things):

• A consensus definition developed at an NIH conference, organized by the recently retired NIA program officer Basil Eldadah (we will miss you Basil!).

• Andrew complicates this definition, stating is raises more questions than answers.

• Hospice nurses know that terminal lucidity “is a thing” and have pretty much all seen it

• Family and caregiver stories of lucid episodes and what they meant to them, including early glimpses into a study Andrea is doing using video to capture episodes and show them to family.

• Potential for experiences to elicit “false hope”, misunderstanding/misinterpreting, and changing say code status from DNR to full code (rare but happens).

• Sam Parnia’s work on brain activity during CPR and near death episodes

• Ethical issues these lucid episodes raise

• Should clinicians treat people with dementia as always lucid? Having some level of awareness?

• Parallels between how we treat people with advanced dementia, who may or may not be lucid, and how we treat AI, who may or may not be conscious, or experiencing paradoxical lucidity on their way to full consciousness. I try to say please and thank you to the AI I interact with other than Alexa, who is obviously way behind.

• The Age of Aging podcast episode on lucidity, featuring Anne Bastings, Jason Karlawish, Elizabeth Donnarumma, and Justin Clapp

• Was Andrew’s song choice, “I can see clearly now” better than Eric’s suggestion “Silent Lucidity” by Queensryche?

Enjoy!

-Alex Smith

As you know, dear listeners, I love music. We start each podcast with a song in part to shift the frame, taking people out of their academic selves and into a more informal conversation.

Well, today’s guests love music at least as much if not more than me, and they each make a strong case for music as medicine. Jenny Chen is a palliative care fellow at Yale who regularly sings for her seriously ill patients. Look for Jenny to potentially appear on the show America’s Got Talent (no lie).

Tyler Jorgensen not only plays music for his patients, starting out with just pulling up a tune on his iPhone, he and others at UT Austin and Dell med now wheel a record player into patients rooms and play vinyl, taking patients back to the sounds and routines - think taking the record out of the sleeve, placing the needle in the groove - of younger days. You can here Tyler and I having a great time singing together and sharing stories around his podcast My Medical Mixtape.

And Theresa Allison is a geriatrician and ethnomusicologist who studies the role of music for people with dementia. The ability to appreciate, recognize, and engage with music is preserved even until late stages of dementia, and Theresa is examining how music can be useful from the time of diagnosis, not only for the person with dementia, but their caregivers.

Many links today, including:

-Alive Inside Movie and Music and Memory movement

-Music and Creativity in Healthcare Settings - book by Hilary Moss

-Tyler Jorgensen’s article on Bringing Music to patients at the Bedside in JGIM

-Tyler’s reflection/story comparing palliative medicine to jazz - something I arrived at independently and tell all new trainees! This is not highly scripted orchestral music, people, it’s Jazz.

-Systematic review of music (and prognosis) in palliative care

-Review of music and dementia interventions (Theresa Allison author)

-Theresa Allison’s paper on Music Engagement in Dementia Caregiver Relationships in Gerontologist

-Jenny Chen’s YouTube channel.