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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“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

  • “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

  • “If you have aging parents, but palliative care, hospice, and caregiving are still hypothetical concepts, it’s time to lock in and read this book. Everyone’s end of life experience will be better for it.”

    —Caitlin Doughty, author of Smoke Gets in Your Eyes and Other Lessons from the Crematory

  • “This book is for all of us who will die one day. In a health care system with a strong drive towards treatment and cure, Dr. Spencer explains through heartfelt stories how it is up to us to navigate around the insurance obstacles and professional gaps to achieve the death we desire. She nudges us to make requests about palliative and hospice care, ask the hard questions about quality of life, and close our final chapter with grace. Our doctors will not help us if we don’t ask for help first, but a good death, whatever it may be, is in reach for everyone.”

    —Stefan Timmermans, PhD, co-author of The Unclaimed: Abandonment and Hope in the City of Angels

  • “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

  • “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

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

RESEARCH

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
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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.”

“Six years ago, I was able to provide this experience for my mother-in-law, dying at home as was her wish, and it is one of the most important things I have done in my life. If you want to do this for your loved one, now or far in the future, you will want to read this book!”

-Substack subscriber & early book reader

“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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