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.
Coming September 1!
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What Experts Are Saying
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“Healthcare generally means well, but it doesn’t always do well. This is especially true and consequential towards the end of life. Too often what is a sacred experience gets reduced to a medical flowchart, so insidiously and counterintuitively so that we patients are left questioning ourselves and our own sense of reality, adding a sense of tragedy to an already fraught mix. Enter Karen’s book, a perfect blend of her decades of scholarship and the power of story. This book will help you make sense of your experience as well as help you advocate for anyone you love, someday including yourself. It’s just what this doctor would order.”
— BJ Miller, MD, Palliative care physician, co-founder of Mettle Health, and co-author of A Beginner’s Guide to the End
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“Your Good Death is a wise and compassionate guide for navigating end-of-life care, helping readers face difficult decisions with intention. It will make you pause and think about your own personal story, what matters for you, and what you need to think about as you move through the increasingly complex world of modern medical care in the United States.”
— Diane Button, author of What Matters Most: Lessons the Dying Teach Us About Living
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“Karen Lutfey Spencer combines expertise in health policy with a true love of storytelling to help readers visualize a path towards the healthcare they want and deserve.”
— Jessica Zitter, MD, MPH, filmmaker and author of Extreme Measures: Finding a Better Path to the End of Life.
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 a 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!)
Find me on Instagram and Substack
Testimonials
“Thank you for sharing this information [about how few people have advanced directives]! I’m 32 and talk to my friends about this often. I say, ‘So,hey, y’all are married and have kids. What’s your plan?!’ And it’s almost always, ‘Never thought about it.’”
-Instagram follower
“I cannot recommend Karen and her writing enough. EVERYONE should be reading her!!”
-Substack subscriber
“I just read your ‘Dying for Sex’ post on Substack. It was so informative and enjoyable to read, specifically your literate and open writing style. I was immediately drawn in and connecting your points to my own life experiences… I look forward to your continued posts!”
-Substack subscriber
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