Your research-based guide to getting more of what you want at end of life.
A decade of research. Scores of interviews. Personal experience.
Real-world stories and research-based strategies that help you understand why the healthcare system sometimes hurts more than it helps, and what you can do about it—even while you’re healthy.
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“I kind of hate to have the fire truck pull up and the neighbors come gawking while they haul me out of here,” Lilly said, tapping a pen to her chin in thought. “So let me put that on my list of things to ponder.”
Seconds passed in silence. I had gotten used to waiting it out with people. She sat in her recliner, legs propped up and a giant three-ring binder open in her lap, bursting with a collection of her healthcare records. I sat on her couch a few feet away.
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What Experts Are Saying
WHY KAREN?
I Get What You’re Up Against.
Struggling to get clear, timely, and compassionate information from the healthcare system? Feel dismissed or gaslit when you raise your concerns? It’s not just you—there are systematic reasons this happens. Here’s how I tackle the big challenges:
Giving you tools to resist gaslighting
Teaching you about types of end-of-life care
Showing you why communication breaks down
WHAT I BRING TO THE TABLE
25+ Years of Academic Experience
Check out my published research on clinical decision making and end-of-life healthcare
Meet the Author.
Karen Lutfey Spencer is an award-winning professor and sociologist studying medical decision making, doctor-patient relationships, and health disparities—especially how inequality shows up in our healthcare systems. For the past decade she’s focused why our lived experiences of death and dying are so often at odds with healthcare ideals, and how we can get the care we want (and deserve!)
Testimonials
“THE BOOK IS SO GOOD: the stories are compelling, and the analysis and recommendations are practical for everyone who is interested in taking control of the end of life for themselves or someone else.”
-Your Good Death reader
“I cannot recommend Karen and her writing enough. EVERYONE should be reading her!!”
-Substack subscriber
“A captivating page-turner from the get-go!”
-Your Good Death reader
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