151: The One Thing: Death Positive Practices with Stephanie Johnson MS, CCC-SLP
Stephanie Johnson wants SLPs, future SLPs, and basically everyone to know there is such thing as a “good” death and SLPs can be a tremendous advocate and support with end of life planning and care! Our field is inherently palliative and we ought to be empowered to empower our patients- whatever that might look like! Let’s adopt some death acceptance/death positive practices.
Key Takeaway:
The ending matters! Our field is uniquely posed to advocate and support a new approach to end of life care. Communication is a key part of end of life planning, from comprehension and health literacy to expressing goals of care, connecting with loved ones, and enjoying food- SLPs can assist in all aspects.
Death positivity and end of life care planning is actually life affirming. It’s a focus on what matters, what we want, how we want to spend our time and energy. It’s about living… And dying.
Resources
1. www.TheConversationProject.org
The Conversation Project® is a public engagement initiative of the Institute for Healthcare Improvement (IHI). Our goal that is both simple and transformative: to help everyone talk about their wishes for care through the end of life, so those wishes can be understood and respected.
2. Gawande A. Quantity and Quality of Life: Duties of Care in Life-Limiting Illness. JAMA. 2016;315(3):267–269. doi:10.1001/jama.2015.19206
Editorial piece from the author of “Being Mortal”, Dr. Atul Gawande.
3. www.OrderOfTheGoodDeath.com
Order of the Good Death is the Caitlyn Dougtry’s organization for education. There are tons of resources, including recommendations for podcast, movies, and books.
An interesting experiment to promote death and end of life conversations openly by hosting a dinner party.
Research is ever evolving on end of life best practice. Some general touchstones for me:
Committee on Approaching Death: Addressing Key End of Life Issues; Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington (DC): National Academies Press (US); 2015 Mar 19. PMID: 25927121.
Keeley MP, Generous MA. Final Conversations: Overview and Practical Implications for Patients, Families, and Healthcare Workers. Behavioral Sciences. 2017; 7(2):17. https://doi.org/10.3390/bs7020017
Mistry B, Bainbridge D, Bryant D, et al What matters most for end-of-life care? Perspectives from community-based palliative care providers and administrators BMJ Open 2015;5:e0074Di92. doi: 10.1136/bmjopen-2014-007492
T. Sinuff et al. Improving end-of-life communication and decision making: the development of a conceptual framework and quality indicators J Pain Symptom Manag (2015)
PROM: Palliative Care Outcome Scale
Contact Stephanie:
If other folks are interested in this topic, they can follow me on Instagram at @the_palliative_SLP
I share reels and silly things related to med SLP but also templates and guides and research related to this topic.
My email is stephaniejohnsoninbox@gmail.com but it’s probably faster to reach me through instagram.
Thanks for these great resources, Stephanie!
I’m born and raised in the SF Bay Area of California. I’ve been an SLP for 8 years, always in the medical world. Currently I’m split between home health/ home hospice and PRN acute. I’m dipping my toes into the world of pediatric feeding and NICU and it’s exciting (and terrifying) to feel like a “beginner” again. In my non-SLP life, I’m a big animal person. I have a dog, two cats, and 9 chickens and I lived on a farm animal rescue farm in between undergrad and graduate school. And I like to do aerial circus arts in my extra time.
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