If you missed it, you can catch my publication countdown series, 5 reasons we need this book, my behind-the-scenes journey, and 5 ways I’ve prepared for this launch.

Thank you to everyone who stepped up early to support this project. Your early backing gives the book a boost in the algorithms today. But your engagement, the comments, and the connection mean so much to me.

Your Good Death is based on a decade of research, but I've written it to be that book you can curl up with on your couch on a rainy Saturday, or share with your book club, or pass along to a friend.

You can bite off one piece at a time, or read it all in a weekend.

Each chapter is centered on the story of a real patient. They have one thing in common: they are facing big loss and trying to figure out what to do and how to get through the healthcare system treating them.

The people in this book are are not elite or wealthy, or in possession of insider resources that help them magically know how to navigate healthcare. They are truck drivers, retirees, spouses, caregivers, mothers, and college students facing their own end, or the death of someone they love.

They are my mother and me, trying to navigate her dying from a brain tumor.

On the provider side, we hear stories from specialists like oncologists and cardiologists, caught up in systems that make it hard for them to provide care that matches what you might want. Hospice and palliative care providers show us a better way while also showing us about the system itself hampers their efforts.

Each chapter ends with a list of questions to ask yourself and strategies you can consider. It’s based on my sociological analysis of healthcare systems and medical decision making, but it’s set up to help you reflect on what's important to you--even while you're healthy.

In the epilogue, I tell the story of my mother-in-law and how things went much better with her end of life when we applied lessons I had learned in this research.

Your Good Death is a toolkit for thinking about what's important to you, and how you can start to protect that now. 💪

If you haven’t grabbed your copy yet, you can order it right now:

order Your Good Death here!

As a special thank you, I’ve created this flipbook that has a discussion guide and resources to go along with the book.

Also as a special offer for book clubs (or other group discussions): I’m offering to zoom into your conversation when you buy 5+ copies of the book.

See flipbook for details. ⬇️

order Your Good Death here!

Happy reading, and thank you again.

Yours in solidarity ✌️

Karen

Today: 5 ways I’m prepping for this book launch!

Pre-order Your Good Death here!

Last spring, I was amused by this essay from Lena Dunham about how she was prepping for her Famesick tour (loved the book), and later in the summer I enjoyed Courtney Maum writing in practical terms about what she was doing differently for the release of her 6th book, Alan Opts Out (loved that book too).

There’s no shortage of articles sharing authors’ and publishers’ insights, generously telling us what worked and what didn’t, how to DIY a book tour, or lessons learned after spending $44,000 on a launch. My favorite might be A Lazy Author’s Guide to Platform Strategies because (a) I’m lazy! and (b) it helped me think of this process as connecting with cool, like-minded people rather than gathering likes or subscribers, or being a schmoozy self-promoter. It feels more like being at a party than trying to become a marketer. I like parties.

Release date is September 1. This is two weeks into the start of a school year. I’m a professor. There’s a lot of moving pieces. I’ve had a ton of advice.

Here’s what I’m trying:

1. I’m working ahead on my Instagram and Substack posts.

For Instagram, I have posts scheduled through the start of November. I can adjust as I go, and I expect to have things to share there about media and other events, but if I do nothing it will not fall completely dormant. I can post from my phone to supplement when I’m inspired or want to share quick stories. For Substack, I have draft posts to get me through September or mid-October. Again, if things get overwhelming, it won’t go dormant.

2. I’m working ahead on my teaching.

I’m teaching two undergraduate courses online this semester, and I am advising several PhD students. Some of those doctoral students are looking to finish soon, which means they are generating large (almost book-sized!) documents that land in my email and need review. For the undergraduates, I have set up my courses for several weeks out— they will never run on their own, and there is grading and emailing to do each week, but the prep work of assigned readings and lectures and such are drafted and uploaded. I reworked and updated both of these courses pretty extensively last year in anticipation of needing them to run smoothly now.

3. I’m working with a publicist.

Best decision ever! We decided on a modest scope of work that fits with my budget, but working with her has allowed me to take a lot of tasks off my plate these past few months. Once my agent and I were able to determine exactly which tasks my publisher was going to do and what was leftover, I could make smarter decisions about what kind of support I should hire and what I should do myself. In the vernacular, that helped me think of my publisher as a distribution agent, separately from promotional work. As an experienced professional, my publicist is efficient and resourceful about setting up media events for me, but she does so much more than pitching. Her impromptu strategy advice alone is worth our contract. Without her, I would have been googling my brains out all summer, with much less return.

4. Having a publicist lets me focus on aspects of promotion that I am best positioned to handle.

I have professional and personal networks around the country. I have been able to share information about the book with my colleagues, and offer to visit their classes via zoom to talk with students about the book (I already have several on the books). This may or may not lead to course adoptions in the longer term, but it helps familiarize people in my field with the project. I spoke recently at my professional conference in NYC, using some data from the book, and ending with a slide showing the cover in a packed room. Soon an announcement will go out to 900 other medical sociologists via our association’s listserv. I submitted the book for review at one of my professional journals. These are not contacts in my publicist’s rolodex, so it makes sense I focus there. But it’s the same idea— people in my field, my deepest and longest platform, are being exposed.

I’ve been doing the same with my personal and social media networks. I post about my Substack essays on Instagram, Facebook, and LinkedIn, where I catch more people in my net. I’ve honestly been surprised by some of the responses—people I used to babysit for have pre-ordered! A friend of a friend of my mother’s texted me the other night to say she wants to go to a signing in a bookstore near her and is going to start calling bookstores to ask for my book; is that okay with me? (haha, yes, please do that! Let me know how it goes.) My local colleagues have been incredibly engaged; they have all bought tickets to attend the one in-person event I’ve planned for October 1 at the Boulder Bookstore. I’ve been personally texting my local people to invite them and help ensure we have a good showing that night.

I’ve also taken my agent’s advice that small and local publicity can add up over time. I created postcards for the book and have been visiting all my local bookstores and libraries to ask if they would consider stocking the book, learning about their events, etc. I understand they can’t shelve every local author, but I think there is value to showing up in person and meeting people. I’ve put my name in for local book festivals and events. These are all actions I can take in parallel with my publicists’ efforts.

Pre-order Your Good Death here!

5. I’ve been taking care of myself as best I can.

It’s no joke that book writing is a team sport, and that means people close to you are along for the ride. I spent a ton of time this summer trying to connect with the people who are important to me. My husband and I had a lot of 6am wake-up calls so we could get in long bike rides before it got too hot and smoky outside. I went to pilates class. Went out with friends, went to our community bike ride. I re-painted and stocked up the community toy swap stand I erected in the front yard last year, which draws little kids like a bird feeder. Took a vacation, saw some new places, and ate some good food. I ate vegetables. Went for a skin check, my mammogram, got my teeth cleaned. I slept plentifully. Sexy stuff, but also sustaining and helps me feel like I’m coming into this with my tank as full as possible.

[group cycling photo credit to Scott Burke!]

Will it work? I’ll let you know in a year. But for now, I’m excited to be taking this next step and I am so glad you’re here with me!

Next week: LAUNCH!

Soon it will be coming to mailboxes near you. I hope you love it.

Yours in solidarity ✌️

Karen

Pre-order Your Good Death here!

Hang tight, this is where it gets personal.

Pre-order Your Good Death here!

As an academic, I’ve been doing research on healthcare for almost 30 years. Publishing in academic journals, pitching and reviewing grants at the National Institutes of Health, advising and teaching students, and, in recent years, editing an international journal.

I NEVER get asked to explain how my personal experience matters in any of these activities. Never. It’s treated as superfluous.

I have been studying topics related to medical gaslighting for my whole career— though in academic settings we use different terms, like “variations in medical practice,” or “bias in clinical decision making.” I started with the case of diabetes and worked my way through heart disease, schizophrenia, depression, and others. All these studies ended up telling a story of how healthcare systems can exacerbate inequality, even as we go there for help.

I got interested in the case of end-of-life healthcare when my mother died in 2011.

Since my father had died when I was in my 20s, I was mom’s main (long-distance) caregiver when she was dying from a brain tumor. I realized how many of the issues I had been studying throughout my career were also relevant for end-of-life care. In 2014, I started the formal research study that has led to Your Good Death.

For several years, I published research results from this study as academic articles in scholarly peer-reviewed journals, but I became increasingly less satisfied with the results. Journals allowed insufficient word counts to capture the breadth and nuances of the issues, limiting me to brief quotes to try to capture moving and detailed stories people had shared with me. Disciplinary boundaries meant that I had to choose between trying to address clinical audiences—where the word counts were even shorter—or social scientists, when in reality these topics are profoundly multidisciplinary. Perhaps most importantly, academic journals did not allow for the deeply political and personal nature of the topic to come forth, reifying deep divisions between medical and lay experiences.

These outlets required me to speak as a scientist, to the exclusion of also being a layperson, thus reinforcing boundaries between those worlds even as my research underscored how expert laypeople are about their own bodies. Journals were never going to reach real families despite all my efforts to collect and understand their stories.

Along the way, I decided it was important for me to show more of my own experience in end-of-life care, as a show of solidarity with all the people who shared their lives in interviews with me. I decided to include a vignette in each chapter of an experience with my mother. Each one is designed to help illustrate the issue in that chapter so you can see an example of what the lived experience might look like.

But as I’ve been preparing for this book launch, TWO early readers came to me and said they had no idea I had “so much personal experience” in this area.

It hadn’t occurred to me to be more forward about that, since it’s never mattered for my academic research. I’m still breaking old habits.

So, now you know, before you pick up the book: I’m a real person and I have been in the ring with grief, loss, illness, caregiving, death, and healthcare.

It matters for how I was able to talk with people, how I interpret their interviews, and how I write it all up. It matters for the conclusions I draw and the advice in the book.

Here’s pictures of my mom that you won’t see in the book:

The reason I was taking care of my mom when she got sick is that my father (top right) had already died. I lost both parents by age 39 and while I was writing the book was also helping care for my mother-in-law in the lead-up to her death in 2021. (She makes an appearance in the epilogue of the book, where I describe how differently things went when we applied lessons learned from my research to her situation.)

Here is how I wrote about this in the book:

I also come to this work as a daughter and daughter-in-law who has helped provide end-of-life care on multiple occasions, and my personal stories are woven throughout this book. My father died from sepsis, on a ventilator in the intensive care unit, when I was in my twenties. Flying cross-country on a moment’s notice, I was present in person for his brief hospitalization, decision-making my mother made on his behalf, and his death. In my late thirties, I was a primary caregiver for my mother, who was diagnosed with a brain tumor and died six months later. I lived 2,000 miles away and used Family Medical Leave benefit to take leave from work and telecommute part-time while assisting her with treatments and plans, serving as her Medical Power of Attorney and, later, executor.

Throughout this research, I found myself caregiving for my mother-in-law, who also lived out of state. She suffered an extended, painful decline from peripheral artery disease that slowly limited her ability to engage in activities of daily living. My husband and I made many last-minute trips to help her over the years. I washed bedding, cleaned house, watched “60 Minutes” from hospital chairs, and tried to provide moral support for family members. I dropped nitroglycerin pills under her tongue and called 911 for her more than once as her cardiac symptoms flared. She and I had private conversations—once at 4am, in our pajamas during the twilight hours before a surgery, where she asked me to write down questions she had for her doctor and ask them in case she was not able. There were days when I didn’t know if I could continue with all of it. Six years into this process, I helped obtain a palliative care referral for her, which at her request was eventually followed by at-home and then inpatient hospice. I was present in her last days and on the night she died. I wrote an obituary and helped order her affairs. As a result of these experiences, I can only conclude that there is no world where a life lived unravels in a neat and unaffecting way.

I entered a period in my life course when my friends and family members were dealing with aging and dying parents.

Since I had already experienced the loss of my parents, and I was conducting this research, I found myself being cast in the role of expert, even though I felt less expert every day that I worked in this area.

Friends would text, “Mom signed up for hospice today. What is going to happen now?” Friends, whose parents I had known well when I was a teenager, would call with heartbreaking stories about their decline, inability to live independently, and the ongoing challenges of making arrangements, juggling siblings, and navigating an uncertain healthcare system. On more than one occasion I visited a friend’s childhood home and received an advance warning of, “Mom won’t remember you, but don’t take it personally.” Emergency trips home, early returns from work trips, and even quitting jobs were commonplace scenarios.

I could not escape a nagging feeling that I should be able to do more to bring my research results to real people who needed actionable information.

It has increasingly felt apparent to me that doing justice to this topic, the people managing serious illness and end-of-life, there needed to be a story that included real personal narratives and pulled them together with our strongest social science tools. It was going to require something scientific but also personal and political. Above all, it had to be actionable.

In other words: despite my complete and utter lack of experience with this format, everything pointed to the need for a book.

This is a social justice topic and should be treated as such.

It matters who I am, as your author, but it also matters whose voices are elevated and silenced in healthcare struggles. Each chapter is based on a patient’s story, so we can travel with them on their end-of-life journey, both the medical and non-medical parts. We see how healthcare systems make it hard to navigate something that is already very difficult— and systems, not just “patient choice,” matter.

This book aims to elevate voices that have been marginalized and siloed for too long. I think the stories and tools in YGD will help you become better prepared to make decisions when the time comes.

Yours in solidarity ✌️

Karen

Pre-order Your Good Death here!

To celebrate, and help you know what this book brings to the table, I’m writing a weekly series to lead us into publication on September 1… Let’s do it!

Pre-order Your Good Death here!

Look, I get it: it’s not fun to think about death and dying, and it’s also not fun to think about healthcare. They may be two of the most unappealing topics ever, let alone in combination. I’m going to die anyway, can’t I just face this later? After all, maybe I will die in my sleep and it won’t matter.

You can do that, definitely. But if you’re someone who has been mired in our broken healthcare system, jostled around and medically gaslit, you know it’s a jungle out there. If you’re someone who has lost someone you care about, you know that when someone is dying is not the time when you want to be facing The Healthcare Struggle if you can avoid it.

The good news: I think there’s a lot of it that is avoidable if you engage early. After a decade of research and my own personal experience as a caregiver, I think learning a few key questions and strategies can make a huge difference in getting more of what you want (and less of what you don’t!).

5 reasons I wrote this book:

1. While 70% of Americans say they want to die at home, only about a third of us do.

That’s a lot of people not getting what they want. So if when you think about what a good death looks like for you, it’s at home, in your own clothes, your own bed, with your family and pets and favorite coffee cup, great. But let’s protect that vision, because there are a lot of ways healthcare can take it right off the rails.

What’s that? You say you assume that your trusted healthcare provider will let you know then the time is right to stop going to doctor appointments, getting tests, driving all over creation and to shift to the things toward doing items on your bucket list? That they will let you know when you’re running out of time, while you still have time and health to take that trip, spend time with the right people, or take your grandkids fishing?

Not a great assumption, unfortunately. And, that end point can creep up on you when you’re not looking. The fix: focus on being the “CEO of your own care.”

2. Our healthcare system is set up to be a treatment superhighway— with very few off-ramps.

Here in the US, we are really good at mobilizing the most advanced scientific knowledge in service of treating conditions that used to be fatal. We are good at science. We are the nation of the Cancer Moonshot initiative. Our for-profit systems make a lot of money off those tests, procedures, images, surgical suites.

We are less good at shifting gears away from “hope” and “cure” toward conversations about goals of care, or quality of life. Hospice referrals often come very late in the process: while Medicare will cover hospice for patients who are expected to have six months or less to live, the median length of a hospice enrollment in 2024 was only 19 days. About 31% of hospice patients die within the first week of admission.

That means there are a lot of people on that treatment superhighway who are only getting to the off-ramp a few days before they die. Too often, they aren’t using that time traveling to Italy, or going fishing, or even going to their favorite local lunch spot. They are very sick or maybe already actively dying— maybe in bed, maybe not talking, maybe not even waking up. They and their loved ones may not have known in advance that they would be as sick as they were by the time someone signaled it was time to stop treatment.

But if you speak up, ask the right questions early and often, you can gain traction over when and how you exit that treatment highway.

3. It’s easy to assume healthcare providers will tell us when it’s time to focus less on hope for a cure and more on the hope for quality of life. But that’s a flawed assumption.

It’s totally fair to think that your trusted providers will talk with you about this, but they are often caught up in the same system that is giving the rest of us trouble. They are trained to specialize in treatment, incentivized to generate profits, and pressured to cure people. In my research, doctors often felt like failures when they did anything perceived as undermining people’s hope for a cure. They are expected to see high volumes of patients everyday— so, as we all know, they are running behind often enough without having long conversations about topics other than treatment. Plus, systems pay much more for that MRI or surgery than for a half-hour conversation about your goals of care and what quality of life looks like for you.

Healthcare providers are often un(der)trained and un(der)practiced in how to have these delicate conversations around death and dying, even when they want to. It’s not like it’s an everyday topic for most of us, and the providers who lack this kind of training can avoid talking about death and dying for many of the same reasons you don’t want to bring it up with your parents. Will you lose trust in them if they talk about you dying? Will you think they are trying to kick you out of their practice? That they have given up on you? Many of them told me they worry about those issues—they want you to see them as their trusted advocates.

Here’s where you can help them: let them know you want to talk about goals of care, or your quality of life, or even let them know if you are wondering if you’re on the right path. It opens up conversations by letting them know you are okay with it.

4. Culturally, we lack information about the tools that can help us have the end of life that we want. Most of us need explainers about palliative care, hospice, and death doulas.

Feel like you might not be on the right path with your care, but not sure what you want to have happen? Maybe you’re starting to get concerned about the future, but definitely don’t feel like you’re going to die tomorrow, so you feel like it’s too early to do anything? That’s okay! You are not alone, and it’s never too early to get educated about options you might want to use down the road.

I have a chapter in the book entitled, “Not your grandmother’s end-of-life care.” Today’s tools go far beyond the hospice of the 1970s, even though we have social stereotypes around “hospice-as-quitting.” Palliative care is a newer medical specialty, and it offers comfort care regardless of your diagnosis, age, or prognosis. Unlike hospice, you can have it at the same time as curative care, if that’s what you want. Death doulas, like birth doulas, are non-medical professionals who can help provide holistic care and guidance. I tell detailed stories of people using these services— their expectations, their worries, and what they felt like they got out of them.

Integrating these kinds of tools can help close that gap between people wanting to die at home but ending up in the hospital. Rather than thinking of these tools as something people use only if they are “quitting,” or “giving up hope,” or are at death’s door, try thinking about them as tools people use if they want to be in control of that treatment superhighway— the people who are more likely to get to do some items on their bucket list.

5. This is not just a topic for the “oldsters”! One in four people are caregiving in the US, and the pressures are only increasing as our population ages and healthcare costs rise.

These issues affect whole ecosystems of patients, families, and caregivers. Caregivers are younger than ever, and suffering health and social consequences as a result. Families are more geographically dispersed than ever, so caregiving might mean having a job and kids in one state, and an aging parent in another. It might mean moving that parent to live with you, even when neither one of you really wants that. It might mean not having anyone close by to step in if you need help. As marriage and childbearing rates decline, it might mean relying on other forms of chosen family. It might mean figuring out how to cover that $20,000/month bill to put someone in a care facility.

In my book, each chapter tells the story of a specific patient in my study, so we can see how the details play out, and where gaps open up between what they want and what they are able to have. You can see how easily my mother and I— a nurse and a healthcare researcher— were pulled into treatment and didn’t know where and how to ask for help to focus on quality of life. This book helps you learn about your options before you get thrown into a pressure cooker situation.

The more we think about what we want and start some conversations—even small ones—the better our chances of getting the kinds of end of life that we want.

We make all sorts of plans to try to protect our future selves and the people we care about— insurance for our cars, homes, health, life. I don’t love thinking about all the terrible things that could happen that might lead to me needing to cash in on my car insurance. Ugh. Maybe I will never need it so I can afford to not focus on it too much?

But we’re all going to die. And those we care about will die too. In many cases, people won’t have the time or the resources to even consider these issues. If we’re lucky, we are pulled into these situations because we are invested in other people, and they in us.

Maybe we can add these conversations and tools to the list of ways that we’re trying to protect and take care of our future selves and the people we care about.

Next time: behind the scenes of the writing, including old photos!

yours in solidarity ✌️

Karen

Pre-order Your Good Death here!

If you’re not already familiar with her work, Jane Callahan is a death doula, author, and studying to be a clinical mental health provider. Jane writes a great column here on Substack called The Terminal where she publishes “sassy rants,” expert Q&As, and fantastic compilations of new articles related to end of life.

Jane also had a new book out this spring! A Death Doula’s Guide to a Meaningful End is a top favorite in my reading pile this year— you can read more of my review at the end of this essay. But 10/10 I love it and recommend it, no notes.

Earlier this year, Jane and I moved off Instagram and started having zoom calls and emails and other off-line conversations. We collaborated on this piece in The Conversation about palliative care and doulas as important but underutilized tools in end of life care:

Of course, when you write something like that, there are a lot of loose threads that end up on the cutting room floor, so I invited Jane to continue some of that conversation here.

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Karen:

One aspect of your book that I find very compelling is how effectively you interweave your personal experiences with stories about dying people you have worked with, and then use all of that to leverage larger analytic points you make about how to have a meaningful end of life.

You are so generous with telling us your personal stories. You write about your mom, your experience giving birth, and you tell a particularly harrowing story about a near-death experience in the river with your family.

But I can imagine another version of this book where you didn’t put yourself out there with these stories. You have been working as a doula for a decade, worked with several hospices in multiple states, you have a master’s degree and are currently working on another master’s in clinical counseling. You could have relied on your professional experiences and just stood as an expert. Why not do that?

Jane:

I did that for a few reasons. First, when I got my masters degree in English (creative writing) years ago, I wrote a thesis about my summer living and working on a commune in the middle-of-nowhere as a girl from Brooklyn who had never so much as planted a potato before.

In my mind, I wanted to go into this commune as a reporter--I didn’t want my own pre-formed opinions about, you know, a naked dance party in a field to be the center of this thesis; I wanted to provide an objective account so that the reader could come to conclusions on their own. And overwhelmingly the feedback from all my readers was, “This is great, and, I found myself wanting to know so much more about you, and that just wasn’t there.” I found that odd, since this was about the commune and not me, but it helped me realize that readers want to deeply know their narrators. And when you’re narrating a story about something else, it absolutely does involve you. And you, the narrator, must be trustworthy. And there is no trust without an exchange of personhood between the writer and the reader. It’s like watching a TV show where you don’t actually like the protagonist; if there’s no deeper connection there, everything else won’t land.

The second reason is because this is a big topic and I wanted to make it clear that this is what I have learned, what I have seen, what I have felt and thought, and that I don’t speak for everyone in this space. I had no intention of telling readers how they should live or die--only that this is what I have come to know.

Finally, one of the messages in this book is asking people to be vulnerable and brave in exploring topics that may be painful or uncomfortable to them. If I could do that first—show my humanity, my flaws, my hopes—then maybe it would give readers a little more of a boost to do the same. It is proof that stuff happens to all of us, not just death. And maybe what happened to me didn’t happen to you exactly, but I felt confident most people could relate on some level.

Karen:

That is really inspiring and helpful to me, as an academic who has been trained for 30 years to not let my personhood be exposed at all in my research and writing.

So what do you think is gained and lost in the version of the book where you just rely on your professional expertise to create a guide to a meaningful end?

Jane:

In the absence of years of academic research where I comb through every opinion, statistic, and personal account possible, I am presenting a limited scope of information. That scope would have to be limited anyway to fit into just one book. One book can’t be everything, and to focus on essential points—particularly given some readers are, for the first time, dipping their toes into the topic—I had to be selective. I know for sure what I have lived. To temper that loss, it was important to me to remind people, “Hey, this is my worldview based on all I have experienced and read about, and that is where I am coming from as a white, educated, hetero, middle-class woman.” The multi-faceted nature of this book primarily lies with the diversity of the patients and their positions in the world, which works, because their stories are tied to everything else the book relays.

And I also made a point to discuss and include other figures who have done a lot of the work and advocacy in this space, and cite plenty of research and other writing. I was trained and I have self-educated from reliable sources and in that regard, how much is this book just relying on my own professional expertise? I’d say that isn’t entirely the case. Including interviews with other experts and a long list of resources is my nudge to the reader walking alongside me, that this space is bigger than it seems. It has had many great pioneers who got us to this point. I felt responsible for that, because when someone is introduced to new, fascinating ideas for the first time, it’s easy to say, “Wow, this person is doing something important” and it’s crucial to remember that any thought leader in any space is building on the work and ideas of other people, but bringing their experiences and new ideas into the mix. Credit where credit is due.

I think what’s gained is an intimacy in reading about these things that is missing from the more directive, logistical, or more instructional guides. I think what’s gained is a sort of literary edge that brings color and art to a bleak subject. How do you engage someone on a deeper level about writing their advanced directives? Talk about how you had to envision your husband being intubated during a global pandemic and talk him off his uninformed ledge. How do you really get the message across that you can die today? Tell that story about when you almost did die suddenly and never saw it coming despite working around death all the time. I think for a lot of people there’s a difference between, “This is how the body dies” and “This is what it was like to watch how the body dies as I took care of my cancer-ridden uncle.”

Karen:

Love it. That is really powerful, and I think part of the answer to the question of why this is so important in the arena of death and dying.

How did you decide what to include, and how much of yourself to share? (boundaries??!)

Jane:

The inclusion process had a range that started with, “What are the absolute basics I need to cover so that someone is generally informed?” to sleepless nights, where at 2 a.m., I’d reach for the pen and pad next to my bed to write something down that just had to be on the list of mentions. In thinking about my audience, which in my mind were people who are mortality-curious but not necessarily death-informed, I followed my gut in terms of what to include and what would just feel like information overload for a learn-about-dying self-starter.

In terms of what I disclosed, I changed identifying patient details and often didn’t even mention the U.S. state I was in for certain patients (I have practiced in Nevada and North Carolina). I did not include anyone’s moment of death except those of my own family members, as that felt very intimate and was not my moment to tell (I did ask my aunt if she felt OK with my chapter about her husband before publishing, and she gave it her blessing). When it got to disclosing personal things about myself, anything I mentioned had to be in service to the story and to the point of that story. Nothing superfluous for the sake of it. And I didn’t want it to turn into a display of trauma, which is why I withheld a lot of details about growing up the way I did, because those things were examples of a bigger story, and not the story itself. I also made sure to respect my siblings’ privacy in this book. To be honest, I was nervous that some of the stuff I put in there would get back to my father, who is living with dementia and does not read books. But then I thought, well, if he is upset that I included that stuff, maybe the bigger question to him should be: If you’re not OK with me talking about these things, then why did you allow them to happen in the first place?

I had another relative express surprise that I included such personal things in the book, and at the end of the day, that is more about their discomfort at having not known, or having known and done nothing, than it is about my disclosure.

Karen:

I related to some of those issues in my own writing— I’ve discovered that people are sometimes uncomfortable with what they knew and how they engaged with personal stories I wrote about.

Was it difficult to know where to draw the line?

Jane:

Surprisingly, no, and again a lot of that was on intuition and a sense of respect, which is a skill that has been strengthened over eight years of death doula work. As a writer, I knew that my best work involved some level of putting myself out there at the edge of discomfort. As long as I walked that line and didn’t cross it, I felt OK with what I had in there. It was very cut and dry for me, when it came to patient stories, what was shared and what was not.

What’s funny is that I think I drew a lot of lines in terms of what I put in there about patients, my personal and political opinions about modern medicine and the doula world, and information about my personal life. And the latter especially so because, again, that was not the main subject matter—it was more of a complementary tool. Yet, so much of the initial response I got to the book was, “I didn’t know you had been through all that!” And while I appreciate the sentiment my knee-jerk reaction is “But what about the death and dying stuff!?” But I think that just goes to show the power of opening up your soul to your readers. The ideas root deeper. By allowing myself to be seen, I think others felt seen, drawing parallels to their own life experiences and hard-earned knowledge about what it means to be alive. And what it means to die. And in that sense, I met my goal with this book.

Karen:

Thank you so much for sharing all of this. These ideas about trusting our narrators are so important for understanding what we want to read and who we believe.

Jane, hanging out with you has definitely expanded my own writing and thinking for the better 😊

More about why I like Jane’s book:

Jane shows us what a death doula does and why they are important, but she delivers these messages through beautiful firsthand stories about what she has done with clients and how her own mortality has shown up in her personal life.

The combination is propulsive-- I blew through this one in a weekend because I didn’t want to put it down! 📚🎉

✅ If you liked Nurse Hadley’s The In-Between, you will love this for its story-telling about dying people she has worked with.

✅ If you liked Alua Arthur’s Briefly Perfectly Human, you will love this for the discussions of how doula work makes Jane think differently about her own biography and mortality. (the almost-drowning story alone gave me new gray hair! 😵)

✅ If you liked Hospice Nurse Julie’s Nothing to Fear, you will love this for Jane’s detailed practical advice and description of her own EOL planning.

Until next time, yours in solidarity ✌️,

Karen

• Palliative care

• Hospice

• End-of-life Doulas

• Crisis care

What if you were sitting in a doctor’s office getting bad news and trying to figure out your next steps?

What if you were calling an ambulance for someone and you knew you needed help, but worried about things escalating?

What if you were caregiving for someone at home, and felt like you needed more support but no one wanted to go to the hospital?

What if you had a nagging feeling like the healthcare system was dragging you around in directions you didn’t like, but you didn’t know how to put a finger on it, how to stop it, or how to redirect this giant machine? (ughhhhh)

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Yeah, understandable if things feel murky, because they are.

In real life, sickness and dying usually don’t look the same as on tv. There are so many burdensome myths that get in the way (no, hospice and palliative care are not the same thing!). It’s hard to know what crisis care looks like until you’re facing it (does anyone wish for stays in the ICU or transfers from hospitals to rehab to skilled nursing facilities in the last 10 days of life? nope, but they happen a lot!). If you keep going along with treatment, will there still be time at the end for your bucket list (possible, but don’t assume healthcare will tell you what you need to know what you need to know it!).

Jane Callahan (of The Terminal here on Substack but also the fabulous A Death Doula’s Guide to a Meaningful End) and I keep seeing these issues over and over, so we joined forces to write about about it together for The Conversation. If you’re not familiar, The Conversation (motto: “academic rigor, journalistic flair”) is an international nonprofit, independent news organization focused on publishing pieces from researchers and scientists for the public good.

Our article came out today, so if you’d like a bit of an explainer on these issues— why healthcare tends to thwart our wishes to die at home, and what tools you can use to resist!—please check it out here:

Next time, a conversation with Jane about walking the line between presenting research and professional experience versus sharing your personal life with an audience.

Think: A sociologist and a death doula walk into a bar…

Until then, yours in solidarity ✌️,

Karen

Thank you, and you, and you, too.

I have been so humbled by how many people are reading here. If you have subscribed, shared, followed, lurked, commented, or otherwise helped spread the word, I am grateful to you. A year ago, I was looking at a blank screen and today there are close to 700 you subscribing and another 1,200 following these posts.

Thank you to people like Trisha, who wrote a beautiful personal story in the comments of one of my posts, leading to a meaningful conversation among 300 people. Thanks to Jane at The Terminal and Amy at Nevertheless, Persisting, for referring their readers here. Thanks to collaborators like Jan, Alyssa, and Ann Marie who shared their stories in this space. Thanks to people like Phil, who sends me Substack articles to read and suggests people I should follow, and to the folks who told me to check out Hulu’s “Dying for Sex” series or Elizabeth Gilbert’s latest book, All the Way to the River.

Thank you to the people who have grabbed me at conferences and added random postscripts to emails just to say they are loyal readers. Thanks to former students who show up in my subscriber list like a wink from the past. Thanks to friends who text me kind words on the mornings when these essays publish. Thanks to people from my past, like the TWO people I used to babysit for as a teenager who have found me, left generous comments, and told me they have pre-ordered my book and are telling their friends about it.

Thank you to the army of new people, the people who I have not met but have joined the conversation. You all help me see where I should be reading and listening. You are talking with me, sure, but even more amazing is how you build conversation with one another on some of these posts. One time I responded to one of these comments, and the commenter wrote back, “Actually, I meant that for the other commentator, not you!” HA! Right on!

This community is the richest part of my experience here, the part I hoped for but wasn’t sure would manifest. Thanks to all of you.

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I started writing here because my book editor suggested it, not because I had a secret urge to create a newsletter.

Even though I came at my book project with years of experience with academic research and publishing, I needed to “build platform

I had heard of Substack but not checked it out. I started by lurking for six months, where I definitely enjoying reading other people’s work but was intimidated about how I was going to set one up for myself.

I eventually hit “publish,” telling myself I would give it 2 years, at least until after the book came out. Since then, I have published 30 posts.

I’ve worried that I don’t publish frequently enough. Are my posts too long, too short? Too formal or too colloquial? [Hellooooooo, is anyone out there? 🎤 (tap, tap)] I’ve worried that I am not engaged enough on Notes. I’ve worried that what I’ve written is too personal, not personal enough, too didactic, too story-driven. My photos are too staged, too au naturel, or too personal. I worry that you might see that I am a real person.

But once I jumped in, I started seeing my work through your eyes, which has deepened my understanding of my own writing and research. Engaging with you has helped me understand what stands out to you, what resonates, how things look from your perspective.

I learned that you like knowing who your authors are as people, and you worry about gatekeeping of information around conditions like long COVID, which shares commonalities with end-of-life even while being quite different. You were generous with your engagement when I posted a sneak peek of the introduction of my book. You definitely shared some of the concerns highlighted in the story of Elizabeth, who declined medical treatment for her breast cancer and died at home (I will post more soon about the comments under that post).

The funny thing is that I got into this whole book project because I wanted to bring research results to real people who needed actionable information; I wanted my hard-earned research to come down from the ivory tower. I underestimated the extent to which that would also require me, as a person, to come out too.

Turns out, it’s all okay. Substack is a diverse place with lots of topics, voices, and styles and there is room for me to show up alongside those people who have 100 posts planned out in advance. It’s okay for me to show up as I can manage.

Here are other unexpected but fun changes book-writing and Substack-writing have brought out in me, gallery style:

Top row, left to right:

• Reconnected with my friend Ann Marie and we wrote a 2-parter about her husband’s passing and her experience with healthcare and advanced directives. And by reconnecting I mean I heard her voice on the phone for the first time in 30 years. ❤️

• Reading more books as opposed to academic articles!

• I went on TV even though I was super nervous and can’t even style my own hair.

Middle row, left to right:

• I’ve been going to more bookstores, like in the old days before I wrote so many academic articles! (Bart’s Books in Ojai, CA)

• I’ve made new author friends, gone to book signings, and gotten braver about things like posting a picture of myself having fun on a random Tuesday.

• I’ve been hanging out more at my local libraries. Editing, reading, chatting with people in my community.

Bottom row, left to right:

• I had photos taken by a new friend of an old friend, who I met because I got brave about doing a local TV news segment with them.

• Reconnected with my friend Alyssa and we wrote about her mom’s end of life. When she came to town we had tacos in-person after not getting together in 20 years. ❤️

• I made more author friends and have been able to read their books and sing their praises! Jane and I moved the conversation to zoom, where we wrote an editorial coming out soon (very exciting—I’ll link it here when it comes out).

I never would have foreseen these changes when I decided to start this book project and this Substack.

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What next?

My book is coming out September 1, so this will be new territory for me, but I plan to stay the course with writing every other week. I will keep writing about topics related to health and healthcare, including medical gaslighting and how systems shape our experiences and what gets presented as our “choices.” End-of-life will continue to be on the docket, though I am also starting to think about next steps for a new research project.

For now, subscriptions will stay free. If you like this work, I hope you share it widely— whether that is through referrals, restacks, subscriptions, or word-of-mouth.

(If you want to financially support my work, please consider pre-ordering my book! 🤗)

What else would you like to see me writing about?

I am all ears. Please share in the comments. More stories? More explainers? More research connection? More behind-the-scenes?

I am excited to see what happens next, and this professor will continue to enjoy being a student among you readers and writers!

Yours in solidarity ✌️

Karen

People tell me their stories about gaslighting, and I often find myself pushing back on the idea that it’s alright to throw doctors under the bus, because there are critical systems in play that affect that happens in clinical settings.

But sometimes it is really difficult to feel sympathetic to physicians— as in this case below.

Fine, we get it. Gone are the days of our friendly family physician Marcus Welby, MD and our family doctor who hangs out their shingle and knows us from cradle to grave.

People have been writing about the medical-industrial complex for decades. This has meant changes to medical professions as physicians became more like corporate employees with the rise in HMOs in the 1980s. We doubled down on these trends after that with the continued rise of for-profit care in related sectors like health insurance. Alongside that, pharmaceuticals have become more prominent and, in the US, direct-to-consumer advertising is legal. Now we are pumping more private equity into healthcare. All of this momentum has steered medicine toward more of a business model—and we feel it at the pump, so to speak.

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Somewhere in this business pipeline, physicians started getting called “providers.” Guess what? They don’t care for that at all.

In this article from the Annals of Internal Medicine (February 2026), the authors specifically pitch this as an ethical problem.

They tell us in laborious detail about the definitions and Latin origins of words like “patient,” “physician,” and “medicine.” My personal favorite is the part about the origins of “compassion” and how it is “essential to the patient-physician relationship” and “refers to supporting the patient in need and acting with and for the patient.”

Medical care is not a mere service. This is especially apparent in the origins of words associated with care. The Oxford English Dictionary defines the origins of the terms patient, physician, and medicine. Patient is from the Latin patiens, for one who suffers. This word refers to the vulnerability often brought on by illness. Doctor comes from the Latin docere (“to teach”). Physick originally meant medical treatment or remedy; one who practiced physick was a physician. By the 18th century, physic referred to the practice of medicine. Compassion comes from the Latin compassio, meaning “to suffer with.” Compassion is essential to the patient–physician relationship; it is not just empathy or kindness but refers to supporting the patient in need and acting with and for the patient. These words help convey the significance of what is at stake in medical care. (Sulmasy and Carney, 2026)

Words are important; I agree. But this sanitized notion of physicians as the compassionate gravitational center of the doctor-patient relationship, as the ones we can count on to “act with and for the patient”? Good grief: check out the comments here and see if people are buying into that.

One issue that is part of the problem, but unacknowledged in these kinds of publications, is that patients get different names too. These words we use around “users” or “consumers” of healthcare matter too.

Here is where we get into my having a beef that goes back years. Bear with me for a minute.

Back in 1997, Baby Karen wrote a PhD dissertation that was all about patient compliance. At the time, I was hot under the collar about a growing body of research that was focused on basically profiling “the compliant patient.” Starting in the 1960s, we searched for psychological, cognitive, and socioeconomic characteristics of patients that would predict how closely they followed medical recommendations— also framed as “acting in one’s own best interest,” which (eye roll) I have always taken as code for “acting rationally.” I felt like the questions getting asked in these fields were versions of: Are compliant patients just more educated? Smart? Motivated? Resourced?

In my study, I was asking: “how do doctors even try to assess how compliant patients are, given they only see them for short periods of time?” I shadowed endocrinologists in two diabetes clinics for most of a year, interviewing, videotaping, and calling patients at home afterwards to find answers. What I concluded was that “compliance” is not just about individual patient characteristics but also about doctor-patient interactions, the kinds of clinics and doctors involved, and the continuity of your care. How closely someone thinks you’re following a treatment plan is connected to social processes happening in healthcare.

After my dissertation, I even published this commentary with a physician, where we called for people to swap the term “compliance” (too paternalistic!) out for “adherence” (more patient agency!). That was 1999, and that little commentary has been cited about 500 times.

At first glance, this Annals paper appears in alignment with these ideas that patients have autonomy and should be partners in their care:

A physician should be a trusted confidant, counselor, advocate, and partner in times of need. Since Hippocrates, physicians have committed to putting the interests of patients first, utilizing their extensive knowledge, training, and experience to benefit patients and help keep them from harm. In contrast, providers provide. Business transactions need not focus on values or consider the interests of consumers before those of stockholders and owners.

But then I went and looked up how often “patient compliance” shows up in research articles these days, and I came up with this:

This is a search on the website www.pubmed.com, which is probably the major NIH-supported search engine for publications in medicine and public health. When I searched on “patient compliance,” this is the graph that came up to show how many articles with those key words were published in each year since 1947.

Keep in mind, back in 1997 I was already paying attention to what appeared, back then, as a big rise in studies on “compliance.” You can see here how many publications appear for each year, but here are some highlights:

2000: 2,063 articles (year I completed my dissertation study)

2024: 13,514 articles

2025: 21,477 articles

2026: 7,933 articles (so far, halfway through the year)

I don’t know about you, but I have some difficulty squaring up these physician complaints about being called “providers” when there is also a need for patients to be called by names that support their autonomy, expertise, and values.

This huge rise in studies using the term “patient compliance” is not pointing in that direction, disappointingly. It hearkens back to all those outdated presumptions about patients being compelled to follow medical directives.

This is about adherence and compliance, still, but so many other names and frames.

What do you notice about the differences between being a customer and a patient?

yours in solidarity✌️

Karen

Pre-Order my book, Your Good Death!

If you’re not already familiar, here’s a synopsis to wet your whistle:

While most Americans say they prefer to die at home, only about a third will experience that outcome. One in four people find themselves caregiving, and the pressures are only increasing as our population ages and healthcare costs rise. Based on a decade of research, Karen Lutfey Spencer shows how our medical and cultural systems have hidden defaults that can conspire to prevent patients and families from having the kind of care they prefer. Readers will learn about different types of end-of-life care, especially palliative care and hospice, which are too often subject to damaging myths. They will learn how their own knowledge can operate alongside of—not subjugated to—medical expertise. They will gain information about caregiving that can help them lay groundwork in advance of an emergency. Dr. Spencer identifies inflection points where readers can pause and ask themselves key questions, which she helps them articulate. When readers understand the challenges that come with navigating end-of-life healthcare, they and their families will be better able to manage the process.

Pre-Order here

Introduction

“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.

Writing in her notebook and verbalizing at the same time, Lilly mused:

“Where do I want to die? I don’t.”

“I do like the idea of…I have a friend who has a place up in the mountains. Huh. But then I don’t know what happens.”

She looked to me and asked, “So what happens if it looks like it is really the end, and we go up to my friend’s cabin in the mountains and have a party? Then what happens?”

“Um.… They can just call the coroner. The coroner would come.”

“They don’t have to do an autopsy?”

“I don’t think so.… Don’t quote me on this stuff, but I think your doctor would sign off on your death certificate and they would list a cause of death.”

I was there to interview Lilly as part of my research on end-of-life medical decision-making, but she was asking most of the questions at this point. This exchange had begun with my asking if she was okay with dying in the hospital like her mother had before her. She said she had never thought about it.

She continued, “And then what is the end like? I mean that’s what I don’t know. I don’t want to be just gasping and sputtering, trying to breathe. That’s why it might be nice to be in a hospital where they can make you comfortable.” I said that hospice should be able to help with those kinds of symptoms since that was part of their mission. I tried to ask about the people who were best positioned to advise her: “So you haven’t talked about that with your doctor. Or palliative care?” Lilly replied only that palliative care had helped her post her do-not-resuscitate (DNR) order on her refrigerator.

This conversation with Lilly is revealing. I was baffled to think that no one had answered these questions already in her years of interactions with oncology and palliative care. Why would she be asking me, a stranger who had walked into her home just an hour earlier? As we will see, Lilly’s story shows how patient choices can become confused and obscured, and how difficult it can be to make decisions when no one is positioned to give you solid direction.

____

Lilly Mason was working three jobs—as a beloved local musician, a teacher, and a waitress—when she was diagnosed “out of the blue” with stage 3 ovarian cancer in 2012. She had a history of uterine fibroids, and felt a lump in her abdomen, but she was not sure whether the changes she witnessed were a matter of aging or something more sinister. She recounted, “I was overweight. I had this big belly. But I didn’t really know what an overweight, out-of-shape, sixty-five-year-old body looked like.” By the time Lilly went to the doctor for a pelvic exam, the results were stark and life-changing: “I could see the look on his face. He just turned gray. And he said, ‘Oh my God. You have an enormous mass in your abdomen.’”

Lilly underwent surgery to remove the tumor and six months of chemotherapy to treat the cancer that had already spread to her lymph nodes. Initially, she did well with this treatment, but then she experienced two more recurrences and underwent additional chemotherapy each time. By the time we met in November 2015, she had just found out three months earlier that the cancer had metastasized to her lungs and had completed her fourth round of chemotherapy just days before our meeting.

At first glance, this may seem like a straightforward medical routine in the world of serious illness: Someone gets sick, they get treated, and maybe the treatment works and maybe it doesn’t. But Lilly’s experience also shows how confusing, slow, and frustrating the healthcare system can be, especially in the context of end-of-life care.

In the same breath she said the cancer had spread to her lungs, Lilly also shared that she had just tested positive for BRCA, which she viewed as good news. BRCA testing is a genetic test that analyzes two genes, BRCA1 and BRCA2, for mutations that increase the risk of breast and ovarian cancer. If, as in Lilly’s case, someone who already has cancer tests positive for BRCA, this information can be used to tailor their treatment. For example, if they had known she was BRCA positive, Lilly might have received more aggressive surgery or different chemotherapies targeted to BRCA mutations.

Why wasn’t she tested sooner? Lilly said that her gynecologist had said from the beginning that Lilly should be tested, yet Lilly was not clear how that was supposed to happen. Who was supposed to make the appointment? Lilly? Her doctor? The medical residents? At first, she was responding to treatment, and it didn’t seem urgent—but as she stopped responding, that changed, at least from Lilly’s perspective. At that point, her doctor advised her that, based on her family history, she only had a 3 to 8 percent chance of being BRCA positive, implying that it probably wouldn’t change much. Again, testing was delayed.

The August before we met, Lilly finally had an appointment for the test, but when she arrived at the hospital, she was so short of breath that she was immediately taken to the emergency room and then hospitalized for testing. This is when she learned the cancer had spread to her lungs. She was kept overnight and went home on oxygen—and still no BRCA test.

Lilly kept telling her doctors that she needed to be rescheduled for the BRCA test, but although her doctor agreed, it just didn’t happen. By the time Lilly came home from the hospital with the oxygen, she was “flipped out.” Three weeks passed before she could pull herself together to call for an appointment, and then another three weeks before she finally had the test in mid-October, yielding her positive results just before our interview. At that point, three years of treatment had proceeded without anyone knowing Lilly’s BRCA status.

I asked Lilly how this positive BRCA test changed her treatment options. Even with those test results finally in hand, Lilly was unsure what was supposed to happen next, asking me for advice: Should she call her doctors? Email them and ask about next steps? When she asked her gynecologic oncologist about her prognosis, it was Lilly who had to press for details—do I have weeks, months, or years to live? The doctor responded that it was not years, probably months, but added that they didn’t like to pinpoint timelines for anyone. To me, Lilly remarked, “I don’t want to pressure her, but I need to know whether I should be working on my bucket list or my will. Or both. I’m trying to do both.”

Lilly enjoyed a significant reprieve, discharging from palliative care the following spring and resuming singing gigs. She died at home from her cancer, two years after our interview and five years after her initial diagnosis.

____

If this story strikes a chord, it may be because Lilly’s experience is far from unique. Lilly is part of a demographic wave of people caught up in a paradox around end-of-life care. In public surveys, 70 percent of Americans say they would prefer to die at home, but only about 30 percent of us experience that outcome. Instead, most of us die in institutions, such as nursing homes, assisted living, or in hospitals. Theoretically, hospice should help people die at home, with the added benefit of mitigating catastrophic costs in the last year of life. But even among hospice users, stays are very short: While Medicare allows for six months of hospice benefits, in 2022 (the most recent year data are available at the time of writing) the median length of service in hospice was only eighteen days, and 25 percent of patients died or were discharged within five days of admission.

Caregiving worsens all these challenges. Among those aged sixty-five and older, 32 percent of women and 18 percent of men live alone. Compared to earlier generations, today we are spread across longer distances and have smaller social networks. Twenty percent of US adults report not living within a one-hour drive of any extended family members, with an additional 24 percent living that close to only “a few” relatives. As a result, the prospect of caring for loved ones in late life can often become a complex, expensive, and emotionally fraught undertaking. Reliance on paid caregivers, including assisted living and nursing homes, is a useful stopgap but an imperfect and costly solution. The pressures of an aging population only worsen the challenge.

Against this logistical backdrop, the array of medical options is truly dizzying. Forty years ago, a patient with advanced illness may have been advised that she was “out of alternatives” for medical treatment. Today, owing to scientific advancements, the same patient is likely to have many more viable treatments available. At the same time, our options for stopping active care have also proliferated due to expansion of palliative care, hospice, and legalization of medical aid in dying (MAID) in several states.

In the context of end-of-life care in the US, hospice is covered by Medicare for people over the age of sixty-five. But to receive that benefit, most patients are required to give up other types of care that are intended to try to cure a terminal condition. In health services circles, this trade-off is termed “the terrible choice.” As a result, a full range of pathways of care has grown across a spectrum, anchored by aggressive curative care on one end and aggressive palliation on the other. Patients, caregivers, and families are caught in a bind. Choices abound—and yet we are constrained, burdened by logistics, uncertainty, and cultural demands in a high-stakes environment.

Given this complexity, we might expect medicine to provide clear guidance on how best to treat someone who is dying. However, the days of the beloved family physician who knows their patients from cradle to grave, hangs out their own shingle, and works with the support of a single nurse assistant (think of Robert Young’s kindly physician character from the 1970s television show Marcus Welby, MD) are from a bygone era. In today’s healthcare environment, we have abandoned earlier mid-century models of the paternalistic family physician in favor of a model of shared decision-making that prioritizes patient choice over physicians dictating a course of action. Shared decision-making is premised on the notion that if we, as patients, are provided with full information about our diagnosis, prognosis, treatment options, and side effects, we can judge for ourselves how best to proceed with our healthcare.

This choice paradigm appears seductively straightforward. It invites us to frame healthcare decisions as choices made by individuals, as if we were choosing dinner from a menu—choosing treatments, choosing hospice, choosing where to die. When we do not get the end of life we desire, healthcare systems often assume it must be because we did not choose correctly. In turn, this approach propagates a focus on ways to improve people’s decision-making, such as improving our knowledge about hospice or changing our attitudes toward it.

But framing everything that happens in these pathways as a matter of individual choice is misleading. It draws our attention away from all the ways that systems shape our experiences. It overlooks how the medicalization of death and dying has culturally changed how we think about who is an expert on our bodies—including when and how we know we are sick and when we are dying. It diverts attention away from our fragmented healthcare system, in which different kinds of providers do not always have streamlined communication with each other about their patients’ needs and preferences. It obscures how patients have varied access to care in the patchwork system of corporations that is the hallmark of American medicine. A choice framework distracts from the ways that caregiving—so critical at the end of life—is unequal, gendered, and politicized. In this context, “choices” are not simply a function of unfettered patient preference but are also shaped by medical, economic, and social systems.

Like a current in a river, these systems bring their own momentum and defaults that, left unattended, shape our individual experiences. These defaults tend to have the effect of delaying care, which, in turn, can result in people not seeing what is happening until it is too late to have the kind of care they desire. When our lay expertise about bodies and health takes a back seat to physician expertise, we often end up waiting for medical experts to advise us as to next steps. Yet, fractures in healthcare may mean that those experts are not having clear communication with one another, and the financial incentives likely vary for those who specialize in aggressive curative care versus palliative and hospice care. The complexity increases as physicians, who may not have close personal relationships with patients, want additional time to understand their preferences and communicate about options. This can be especially difficult when the topic progresses to the possibility of stopping treatment intended to cure a disease.

Then, because caregiving is logistically and economically complicated, families need time to create plans. Delays in these steps, like falling dominoes, can result in patients not knowing their options until a loved one is too sick to organize or move to home-based care.

By the time we met, Lilly Mason, like so many others, was struggling to see her options and to navigate the byzantine healthcare system housing them. She felt like she was supposed to be making choices, but what those options were and how to act in her own best interest was confusing, despite the high stakes. Even when she asked for help and clarification, her choices were not all that clear. As her health deteriorated, she had less energy to put into figuring out what to do, which made her situation draining, frustrating, and sometimes overwhelming. Far from the ideal scenario of being able to make rational, preference-informed decisions in collaboration with her healthcare providers, Lilly found herself awash within the system.

If you’ve picked up this book, you probably already know this is all a potential recipe for disaster. Over the past decade, I have talked with scores of patients, families, and clinicians to hear their stories and share them with you here, along with my own experience. I hope they help you see how you are not alone, and how many of the problems we are facing come from systems and policies, not from us and our choices. Through these stories you will see how, with the right tools, you and your family can intervene early and often, and get more of what you want out of healthcare.

______

What will you see in the rest of the book?

• Each chapter is anchored in a patient story like Lilly’s.

• Firsthand perspectives of caregivers and family members.

• My own story of caregiving for my mother when she was dying of brain cancer

• In a section dedicated to healthcare, we hear firsthand perspectives of specialty and palliative care clinicians struggling to provide end-of-life care in our healthcare systems.

• Firsthand perspectives of death doulas and hospice workers.

• My own sociological analysis, based on a decade of research, of why these problems are happening and what you can do to overcome system defaults.

• Each chapter ends with a list of questions to ask yourself and tips for getting care that is better aligned with your preferences.

Pre-Order here

In my decade of end-of-life medical decision making research, I came across just one woman who declined medical care altogether. As in, she bypassed it entirely.

Elizabeth’s name was passed to the palliative care team by the physicians who diagnosed her metastatic breast cancer. As I sat in the interdisciplinary team meeting where they were discussing new patients, her case came up. The team expressed grave concern that she was not having any treatment at all.

Normally, I had to insert myself into these conversations to inquire, “Do you think this person would be eligible for my study? Can I give them a call?” But this time they looked down the length of the conference table and I felt the room’s eyes settle on me.

“This would be a great person for your study, Karen!” “Yeah, maybe Karen can convert her,” someone added.

I had no intention of converting anyone to palliative care, or hospice, or pressuring them to seek medical care. But I was certainly interested in hearing the experience of someone who had resisted all the treatment defaults embedded in healthcare and, in the process, gotten a room of providers so upset.

I took her number. When I called, Elizabeth was incredibly nice. We set up an appointment for a Friday afternoon, meeting at her farm about forty-five miles outside of the city.

That Friday, I had done another interview in the morning, and was grabbing some lunch in my car before starting the drive to her place. My phone rang. It was Elizabeth, saying that she did not feel well, and asking if we could reschedule for next week. Would I please call her on Monday? Yes, of course. I told her I hoped she felt better, and I would talk with her in a few days.

Sunday night I was having dinner at home when my phone rang and I recognized Elizabeth’s number, so I answered. Her wife was on the other end of the line. She told me Elizabeth died at home over the weekend.

There was no medical intervention—she did not go to the hospital or ever enroll in hospice.

My normal condolences did not feel quite adequate for this situation, and so I also found myself quietly congratulating Elizabeth’s partner on achieving something that I knew was not automatic— a death at home, after an extended illness, on their own terms. I understood that was not an easy accomplishment but that it must have been important to them.

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Yet something more telling happened when Monday arrived and I called my research partners at the site where I was collecting data.

I told them Elizabeth had died, and so I was unable to include her among my interviews and would need to add another person. It turned out that they did not know she had died.

I could hear the scramble on their end—asking each other, Did you know Elizabeth passed? No, no, no.

They asked how I knew, and I told them. They were audibly stunned—offended, even?— that this information came directly to me and still, the next day, had not been called into their office.

The idea that Elizabeth’s wife called me instead of the clinic seemed as counterintuitive to them as her declining medical cancer treatment in the first place.

Even though I was not able to meet her in person—and I am so deeply grateful to her wife for calling me—I saw in Elizabeth’s story a display of how powerful these medical expectations can be, even among those dedicated to providing comfort care.

They expected Elizabeth to get medical treatment, and to run communications through their office. Her and her wife’s lay management of the situation was startling.

Beyond startling, I am wondering if it might also have been humiliating to have your expert interventions declined by someone you want to treat as a patient? To have that person reach out to someone like me—a sociologist, non-doctor, a veritable stranger—with the news that their wife had just died? To invite that same person to their home when they would not allow palliative care teams the same access? To choose dying over what you have to offer for treatment?

To have people invoke their lay expertise over their medical citizenship?!

Maybe more stunning than we realize.

I started counting up the layers of resistance and rejection that go into this story:

Elizabeth and her partner resisted medical framings of her situation. They resisted medical and pharmaceutical definitions as her best or only course of action. They stood their ground when multiple layers of the healthcare system— those who wanted to treat and those who wanted to give her palliative care—wanted to insert themselves into their lives. They held strong to their own ideas of quality of life, and let quality be the focus over quantity.

They stayed at their home and were circumspect about who was invited to come over.

That course of action seems like something that should be readily available to us all, if we want it. Research frames this as much more of a problem of patient choice— if we don’t choose to be at home when we die, that is because we lack information, or don’t understand death is coming, or are in denial.

But in this case, we have a woman who invoked her choice… and the system had a fit.

Why would that happen if we really cared so much about patient-centered care?

Let me know what you think!

yours in solidarity,

Karen

Onward to medical gaslighting!

Recently I’ve been writing about research aspects of medical gaslighting. I’m trying to show some of the empirical processes that are behind people having terrible experiences with healthcare. It is so much more than women being whiny about healthcare—and we have all sorts of research to back you up.

First I wrote about healthcare having layers like an onion, with those interpersonal doctor-patient conversations at the center, and outer layers being progressively more macro— think organizations, payers, medical education and training, health policy. Gaslighting involves all of these layers playing off each other.

Then I wrote about some of my past research experience, including the super rude realization that angina was being depicted in at least one medical teaching encyclopedia with a big 8.5” x 11” illustration of a silver-haired cis white man clutching his chest as he came out of a restaurant into the snow.

We know it’s diagnostic certainty (not just having a diagnosis in mind, but being certain about it) that predicts whether a doctor is likely to order tests, medications, treatments, and specialty referrals. Are we then surprised that doctors are more certain about heart symptoms in older white men when they are trained on an illustration like this and told “this is the face of CHD”? UGH.

But one piece that is really slippery in this coronary heart disease picture is what happens to the people for whom doctors are less certain. If you are less likely to be treated for heart disease, what actually happens instead?

In this research, we found doctors came up with a similar list of diagnoses even when the patients were female, younger, or black. We coded these together into 3 main buckets of diagnoses: heart disease (CHD), gastrointestinal (GI) programs, and mental health.

So when doctors had high certainty about CHD (on a scale of 0-100), they might give us a list that looked like this after we lumped together all the specific diagnoses into our general buckets: CHD—95, GI—80, MH—50. In this case, they are giving a 95/100 certainty for some kind of coronary heart disease problem in the patient. These are the cases that would go straight to a cardiologist, or imaging, or a stress test, or medication. More older men had evaluations that looked like this.

Medically, if for some reason those heart-focused plans didn’t improve symptoms, or there was not evidence of heart problems on testing, the doctor might move onto to #2 on their list: possible GI issues.

In some cases, GI conditions were highest in certainty. So a list there might look more like: GI—95, CHD—85, MH—40. In this case, you could treat someone with a medication that should quiet some of those heartburn-like symptoms that can create chest pain and mimic a heart problem. If those GI drugs work, then voilà, you can “rule out” alternative diagnoses like the heart. If the drugs don’t work, the doctor has, in the vernacular, failed to rule out heart disease and should return to the candidate diagnosis that is second on the list.

The key here is being able to falsify your hypothesis.

If you think it’s GI but GI medications don’t improve the situation, then you have not falsified your hypothesis and you need to move on.

Women, on the other hand, were more likely to get stuck in a cycle with mental health diagnoses that are very difficult to falsify. This is how you can get missed for a cardiac problem AND stuck with a mental health diagnosis that may not apply.

Here is how I wrote it up in that article:

Here is is visually, from a conference presentation slide:

Top left circle: everyone in the population with CHD.

Top right circle & triangle: some subset of those people get identified as having CHD.

1: Women are disproportionately affected by additional diagnoses, which lowers certainty across the board

2: People who are considered for GI conditions are more readily re-routed back to the cardiac diagnosis because GI conditions are readily ruled out.

3: But if you get a mental health diagnosis, that is harder to falsify. Doctors used nonspecific social cues from the vignette (e.g., a comment in the script from the fake patient’s spouse versus where the patient indicated the pain was located) to support a mental health diagnosis. This becomes a rabbit hole where it can be hard to get back to a cardiac diagnosis and treatment because it’s harder to “rule out” the mental health issue.

Full circle: There is more to medical gaslighting that just having a bad day at the doctor’s office.

The reason we hear people complaining about taking years to be diagnosed, years to be treated, years to recover, and losing their social, personal, and professional lives along the way, is because these kinds of dynamics lead to incorrect diagnoses— both missing the right diagnosis, but also adding in one that may not be right.

It can lead to medications being used when they are not necessary as well as treatments being left off the table (aka, type 1 and type 2 errors). Note how these examples are not just a matter of a biased individual doctor, but of how male-centered medical knowledge is produced, then taught in medical training, which carries over to sense-making in the clinic—that is the multi-layered healthcare onion coming back into play.

I tell you, the last time I cried in the doctor’s office and they responded by saying I needed an antidepressant, all I could see in my head was this paper and what I learned about mental health being a route for other diagnoses being missed in some populations.

I hope these peeks into research give you tools for thinking about what medical gaslighting means and how it can be happening in your life too.

What has your experience been?

What questions do you have that I can try to help research?

yours in solidarity,

Karen

A few days later, I came across this post by Rebecca Upton, who is writing on Substack about disability and chronic illness (10/10 recommend).

Here’s a quote from the post that spoke to me, where she calls out how structural healthcare problems don’t give healthcare providers license to be terrible in face-to-face interactions:

Hard agree from me. The thing is, I think we can do a lot more than just “let people vent” about this stuff.

Here’s a partial list of what I think we can and should do (some of this is underway, some of it needs a lot more time, effort, and money directed at it):

We should:

• Disseminate existing research that validates these people’s lived experiences.

• Educate people who are not struggling with chronic illness and disability so that they know more about how terrible a problem this is.

• Document all the ways that this exacerbates health disparities. This is not just a story of people whining and needing to get over it.

• Improve the diversity of our medical workforce, and the ways diversity is baked into medical education and training.

• Create healthcare systems that make it harder, NOT EASIER, for doctors to come in guns a-blazin’ with their -isms, -phobias, and -gynies.

• And a bunch of other big cultural issues, like culturally not hating on women, non-white folx, older people, fat people, our GLBTQIA+ friends, etc. Good grief, it matters for our health.

Rebecca’s post made me think about examples from my own research experience. Many years ago I was part of a research team doing experiments to study how doctors made different diagnostic and treatment decisions even when patients presented with the EXACT SAME SYMPTOMS. We hired actors to be patients, gave them all the same script (with the same non-verbal gestures), and videorecorded them. In the study I’m going to tell you about, they all had coronary heart disease, but there was a mix by gender, age (55 vs 75), race, and socioeconomic status.

Then we loaded these videos on laptops, I hired and trained interviewers, and we sent them out to do interviews with physicians across several states. Doctors would watch the video, make a list of candidate diagnoses, and then assign each diagnosis a number from 1-100 of how certain they were of that diagnosis.

You might think that the problem is that doctors just don’t think of cardiac disease for women—i.e., it doesn’t show up in their list of possible problems. But no, that’s not it. We found that 95% of the doctors correctly identified the diagnosis somewhere in their list.

It was their diagnostic certainty that mattered.

Certainty predicted whether they did more testing, prescribed medications, or referred someone to a cardiologist. And there were statistically significant differences in certainly by patient characteristics. On that scale of 1-100, we found that certainty of a heart disease diagnosis in women was 53 versus 62 for male patients (and dropping to 47 for the 55-year-old woman patient). Average certainty for black patients was 51 compared to 65 for whites.

At the end of these interviews, we had the interviewer turn on a tape recorder and ask each doctor to talk us through the logic of their decisions.

This is where I really had a light bulb moment.

These interviews would be transcribed and land on my desk, where I would read and analyze them. And I was seeing comments like this:

And this:

What is this Netter thing? Turns out it’s a medical encyclopedia used in medical school. I’ll spare you the suspense, here’s picture that goes with the “angina” entry:

When this popped up in my browser, I promptly stomped all around the office sharing this discovery with anyone who would listen. It’s not even a photograph! This is an illustration that could be changed out at any point.

This connection between structures of healthcare and what happens at the individual level— here, how doctors are trained to think about cardiac disease and how that comes out in delayed/missed diagnoses for everyone who is not a cis white older male— is one example of why systems matter. It gives us levers for making change. How easy would it be to not represent this important disease with this picture?

Full disclosure, I like to invoke these structural issues because I hear so many people trying to explain everything in terms of providers having implicit bias. Implicit bias is a type of unconscious bias that can functionally override values that you think are important. For example, you can say that you don’t value thin people more than fat people, but your implicit attitudes might say otherwise. If you are a doctor, this can come out as fat bias in your clinical decision making and interaction. (You can test yourself here.)

That is the kind of terrible behavior Rebecca is noting, and all the people who liked and restacked her post seem to agree. It’s abhorrent, full stop. And it’s not explained away by saying things like we have lousy insurance or profit-driven care.

As someone who’s been in this research game for a career, I want to help these people. Implicit bias is a real thing, true. Training to counter this kind of bias in healthcare shows promise.

But that lives at the level of the individual provider, and if we only chase after that mechanism, I worry we will be left chasing our tails, sending doctors to cultural sensitivity training and not paying enough attention to how upstream structures like financing, bias in medical knowledge, and bias in medical education also structure decisions and interactions by opening doors for the kinds of cognitive shortcuts that lead to the biased treatment people face.

[Next time, I’ll share the rest of this article, which is about the diagnostic loopholes that happen when cardiac certainty is lower for women. What other diagnoses and treatments come into play when certainty is low? It’s a sticky process that contributes to women getting worse cardiac care and therefore worse outcomes.]

Until then, listen to our friends who are too often underserved and mistreated when they show up at the doctor.

Validate them.

And don’t think you can’t find yourself there, either.

Yours in soldarity,

Karen

I have been researching various ways that healthcare exacerbates—rather than lessens—inequality for my whole career. When I wanted to get a grant or find academic articles on related research, I used pet search terms like “variations in medical practice” or “disparities in medical decision making.”

So you can imagine my surprise when I found out that other people saw my work as being about “medical gaslighting.”

The first time I encountered the term was when I was interviewed for this piece in The New York Times on the topic. In that article, and when I talk with media about this, the definition goes something like this:

Maybe I will write in another essay about the pros and cons of this label, because there’s a ton to it. But for now, I want to share just a bit of information about how we study this.

Here is a TV news segment featuring me and medical gaslighting— it just aired last week on our local 9NEWS NBC affiliate as part of Women’s History Month.

If you watch the short video below, you can see how this plays out in our every day language (and you can see me live since I don’t post many videos 😊):

I care a lot about my local community so this recognition means a lot. Plus I worked with amazing women putting this together—it wouldn’t have happened without Jessie, Regan, and Courtney (in red in studio).

In that news segment, you see me pointing to a hard copy of this figure below. I’m not going to try to teach a whole class on this topic, but I thought this is a good opportunity to let you see this up close.

“Medical gaslighting” like we talk about it colloquially is really terribly broad as an empirical research topic— so complex, so many moving pieces, it’s better to break it down if you want firmer answers. Over time, I have done studies that camp out in various pieces of this figure. As a whole, things in this picture add up to a lot of what seems to constitute medical gaslighting.

I think of it like layers of an onion.

At the center, we have the most micro level of interaction— this is where patients and healthcare providers come together. It’s their individual characteristics, their biases (implicit and explicit), and their cognitive shortcuts. It also includes our financial, cultural, and educational resources. If there’s more people in the room, they each bring their own features.

As you go out a layer, you’re looking at interpersonal processes. This is where conversations are happening, but lots of other factors too. Do you and your provider look alike in terms of your gender, race, or age? (We call that concordance, and results are mixed as to whether it improves your care.) How do your providers perceive your knowledge, your social support, your willingness and motivation to follow their recommendations? This is also where you size them up! Are they fair and interested? Do they value your concerns, and will they help you? Do you want to keep being treated by them?

It can be easy to evaluate our healthcare providers at these inner layers, and conclude they are gaslighting us based on frustrating conversations. With a bad conversation, we might assume that our doctor is biased. But if you keep moving outward in the figure, you should also consider how healthcare systems matter. This might be how much time a provider has to visit with you, where they were trained, how they (or their organizations) are paid, or even how long they have been practicing.

In the outermost ring, we are talking about policy and state-level factors. This can include Medicaid and Medicare policy, the nightmares we are all fielding with American insurance payers (!), and geographic variations such as which state or region you’re receiving treatment.

Many studies have shown that each of these factors matter separately for a range of outcomes, like what your diagnosis is, how you’re treated, and what your satisfaction is with your care. Some studies, including some NIH-funded experiments I have worked on, have tried to look at how the factors work together at the same time. In those nested experiments, patient characteristics were often statistically less consequential than provider or systems factors that shaped outcomes.

Does this mean it’s never the doctor’s fault? Am I an apologist for healthcare providers?

Nope, we are definitely not excusing doctors here! There are healthcare providers who lack empathy, who discriminate, and who are not up-to-date on medical information that might benefit patients. That definitely happens. Problems with medical gaslighting can happen at any point in that figure— but one of my conclusions from all this time researching is that gaslighting is often a product of multiple layers working together.

Individuals, interaction, organizations, systems, and policies are often all playing off each other to create friction and undermine care.

What are signs it’s happening to me?

I generally think people know for themselves when they feel gaslit, but here are some possible signals:

• If your questions aren’t getting answered, or they’re getting rerouted (for example, you have a complaint about joint pain and you end up getting a lecture about your weight).

• Even if a doctor doesn’t want to do a specific test, or prescribe a medication you request, or thinks your hypothesis is incorrect, they should be able to explain that to you in a way that you understand. There should be room for a discussion so you understand where each other is coming from.

• If your pain is going unaddressed, that is a concern.

• If you feel disrespected or invalidated, that is a major problem.

What should I do about it?

As I discuss in the video, it’s important to be persistent and stick up for yourself even though this can be so very difficult. Try some of these strategies:

• Keep track of your symptoms and bring that information with you to the doctor.

• Write down your questions in advance— and list them when you set or confirm your appointment if you have that option.

• Try to set the doctor up for success. The more they know about your agenda at the outset, the more likely they can address it. If you wait until minute 15 of a 17 minute appointment, it may be too late.

• Bring a buddy. Another set of eyes and ears on the situation is always helpful.

• If it’s not working, it’s always an option to try to find another provider.

You deserve great care, even though that can feel so out of reach.

Tell me your experiences and questions in the comments.

End Notes:

What are you reading? A ton of undergraduate Capstone assignments! A pile of books that have been nominated for an award where I sit on the committee. When we have a winner I’ll be sure to share my recommendations—they are all so great!

Longevity medicine is basically a pro-active, science-driven field focused on extending our “healthspan”—the years a person lives in good health—as opposed to just our “lifespan.” The focus is on strategies like early detection, preventive measures, and personalized approaches that help help prevent illness and promote healthy aging.

Aging is associated with many, many illnesses. Healthy aging sounds great, right? Where’s the downside?

So why does my stomach do a somersault when I read this 2021 commentary in The Lancet declaring that longevity medicine is about “upskilling the physicians of tomorrow”?

Starting from its foundation layer and working to the top, the “longevity pyramid” is comprised of factors like:

• Diagnostics & analytics (think cholesterol testing and your smart wearables but also genetic testing, full-body CT scans & MRIs, and VO2 treadmill tests—all preventative as opposed to responding to symptoms)

• Lifestyle interventions (exercise is huge here, but also things like managing your gut biome, musculoskeletal fitness, cognitive exercises)

• Dietary supplements (but not just a multivitamin, B3, or D3K2, a long list of ones you may have never heard of)

• Pharmacological & Non-pharmacological supplements (pills, but also things like sauna, cold immersion, infrared therapy, hyperbaric oxygen therapy, IV therapy)

• Experimental Strategies (gene editing, mRNA therapies, stem cell therapy, tissue engineering)

In a less academic vein, maybe you saw this piece with Dr. Peter Attia on 60 minutes last fall?

Correspondent Nora O’Donnell went through all the testing, we saw her on the treadmill getting her VO2 max assessed. She kicked ass and scored in the 85th percentile for her age and sex— to which Dr. Attia responded that she could take a victory lap but then tomorrow they should discuss what she could do better.

I am definitely older than Nora, and your girl has had some Sporty Spice knee injuries along the way, so I was glad I was not the one on TV running the treadmill. I felt vaguely bad about myself but could shake it off.

But then I started thinking about the social inequalities around this. But of course it is part of Nora’s well-paid job to look a certain way, right? She has a lot of support for that effort. She wouldn’t have gotten the job in the first place if she didn’t fit the mold. There’s a feedback loop where her high socioeconomic status (SES) favors better health, which in turn supports her SES.

Then the sit-down segment of the interview turned to the concierge medicine portion of Dr. Attia’s longevity medicine worldview—he only has 75 patients. (If you’ve been here awhile you may have caught my earlier writing about concierge medicine around the deaths of Gene Hackman and his wife Betsy Arakawa.)

How much does it cost to be one of his patients, Nora asks? Closer to $100,000 than to $500,000, Attia tells her. What do you get for that? (After all, Nora notes, you don’t live forever.)

Attia specifically has some other potential credibility issues, but rest assured he is just one visible player in a much broader undertaking in medicine. For example, have you spotted these kinds of books?

Don’t get me wrong, there is a ton to be gained from this kind of work.

Increasing people’s healthspans could help with many end-of-life caregiving issues I research. I teach public health to undergraduates, so prevention is important. Get your physicals! See your dermatologist! Check your cholesterol! Read or do crossword puzzles. Maintain your social relationships. Don’t assume you should still shovel snow when you’re sixty.

And I’m no elite athlete but I am a life-long exerciser. That knee? Man, I would love it if there were developments that let me get a gel injection to regrow cartilage I beat up in my younger years. I exercise in part because I hope it will help my brain and heart fare better as I age—letting me live independently, for example. Healthy aging matters.

But there are downsides I worry about— and if we don’t pay attention to them we are not “upskilling” tomorrow’s physicians. We might be creating a world that is even more elitist, ageist, ableist and resistant to supporting end-of-life than what we have already.

Longevity medicine is largely a game for the wealthy. In many ways, health is already a function of your social world. I teach whole courses about what public health calls Social Determinants of Health. Thinking back to Nora, some part of that 85th percentile she scored on the treadmill is not just about her genes or her effort or her history with working out, but also her zip code—as it would be for any of us, for better or worse.

This wealth factor is compounded by healthcare systems when we turn to concierge medicine and especially the elite practice that Dr. Attia describes. If you have health insurance, do you think they would cover a full-body MRI for preventive reasons, like identifying any early signs of cancer that have not given you symptoms yet? I’m thinking: doubtful. I have robust University-based insurance and I would probably have to be a squeaky wheel to get a risk-based breast MRI covered as opposed to a routine mammogram. And that kind of request, in turn, rests on my access to information, access to care, ability to pay, transportation, and just enough health generally to even worry about something that is not already making me sick. And this in an environment where healthcare premiums are through the roof— more than one friend has told me they are cutting back coverage to manage monthly bills of $1500-$2500.

It’s turtles all the way down.

“Effort” is also part of this story, which is also tied to social and economic inequality. What does it take to be able to do all the things in that longevity pyramid? For starters, time. Anyone who has tried to pay bills, feed themselves, and have a clean bathroom already knows that it all takes time and money. Add in commuting, spouse-ing, parenting, pets, aging parents, and it only gets more cumbersome. Working out? Want to add in more appointments for other health-promoting activities? A quick search of my neighborhood shows me I can get to my local “light lounge” to lay in an infrared light bed for $49 per hour-long session if I buy a 10-visit punch card. Realistically, if you’re not made of money, something has to give.

Cool. Maybe you are someone who can make that come together—awesome for you!

But here’s where I get stuck:

What if you are already disabled? Injured? Seriously ill? Chronically ill? Caregiving for someone who is ill?

This 2025 report in Preventing Chronic Disease tells us about US trends in chronic conditions over the past decade (using data from the Behavioral Risk Factor Surveillance System—pronounced “BARF-us” for short by my postdoc friends back in the day).

They report, “In 2023, 76.4% (194 million) of US adults reported 1 or more chronic conditions.” They also found that “approximately 6 in 10 young, 8 in 10 midlife, and 9 in 10 older US adults report 1 or more chronic conditions.” And it’s gotten worse since 2013.

That’s right, in every single age category more than half of Americans reported dealing with at least one chronic condition.

Somehow I feel like this is not Dr. Attia’s imagined audience.

But when we make something sound like it’s all a matter of “effort,” we moralize health in ways that are unfair.

Is someone worthy of good health? Of a long healthspan in old age? If you have a great V02 max score on the treadmill, is that because you “earned” it?

Acting like we can concierge-medicine our way into health longevity—Forever Strong! How Not to Age!—creates an “us” versus “them” framework. It implies an even playing field when that is not reality. It implies that health is a moral binary, good or bad. It invites thinking that if today, you look closer to Nora’s 85th percentile and your neighbor looks like they will never see that level of health again, you are in the “right” club and you can stay there if you are motivated enough.

What happens when we do that? We ignore people who are hurting and need support. We naively suppose we won’t be part of the majority that shifts categories over time. We lose the ability to engage across these worlds. I see this in my end-of-life research, but it’s playing out in policy, medical training, healthcare systems, out cultural perspectives, and our abilities to be compassionate with one another.

The more we build up this moralizing mindset around health, the more we invest in the elitist, ageist, ableist mindsets and infrastructures that separate rather than bridge people in different kinds of bodies— a recipe for leaving people behind in so many ways. And of course, none of us gets to live forever, so eventually we are all on the “side” where grip strength and kettleballs don’t matter much.

If you are one of those people, or you care for one of them, you know what I mean. I see you. We have a lot of work to do to on this front— even as we aim for better healthspans!

[This is a repost in the spirit of March being International Long COVID Awareness Month!]

The other day I told my dentist what I’m about to tell you, and in response he rolled back his chair and proclaimed, “You’re so lucky to have that!”

I had plenty of time to contemplate his comment as I laid there in his chair. Why would I be lucky? This is publicly available information. There is nothing gatekeeping our access.

But the longer I thought about it, I saw where he was probably right. For me to learn about this:

• I had to talk with a pulmonologist in the first place.

• Said physician happened to be research-active and has colleagues who are similarly inclined.

• He is connected with people working in cardiology, not just pulmonology.

• He included Long COVID and exercise intolerance as something that should be in his wheelhouse, even thought it involves processes beyond breathing.

• He was sufficiently up to date on literature to be familiar with this June 2025 statement.

• He assumed that I could make sense of it if he gave it to me and talked a bit about it.

So, yes, I decided, I am lucky! So I’m sharing this with you too. Because health information should be democratized, not gatekept.

Short version: Cardiologists are learning that Long COVID has some things in common with other conditions that lead to profound cardiovascular deconditioning. In this statement, the American Heart Association shares current research on this and exercise plans that have helped other populations.

Think you’re not affected by Long COVID? I’d challenge you to think again.

It’s tricky to measure how many people have Long-COVID, partly because there are so many different symptoms and confounders. Depending on the phenotype (aka “bundle”) of symptoms studied, a 2025 study published in Clinical Infectious Diseases estimates a range of 6-26% of US adults having developed Long COVID within 30–180 days after COVID-19 infection. A 2023 Agency for Healthcare Research and Quality statistical brief summarizes several studies that hover around that 6% mark.

But, you say, 6% is really low. Also, I don’t personally know anyone with it.

Again, I challenge you to reconsider. I think many of these people are limping along, trying to preserve their public faces when things are actually very difficult backstage. Do you know people who had COVID and are not just a bit less visible? Maybe they have left a sport behind, or don’t travel as much, or stopped volunteering to bring orange slices to soccer practice, or don’t show up for coffee dates as often as they used to? Maybe they work from home more often? Or they leave social gatherings as soon as they can get away with?

Yeah, those might be people trying to manage long COVID. And so are their partners, children, families, and co-workers, who are all stepping in to managed changed lives.

Why does it matter to share and discuss this statement from the American Heart Association?

I am, as I have disclaimed many times here before, no doctor, let alone a cardiologist or pulmonologist! But based on everything we know about bias in clinical decision making, I expect that people presenting with long COVID are facing some of the following in healthcare:

• Being told (with a shrug and blank stare as you’re being discharged from the ER for chest pain), “Sorry, we really don’t understand it, but you’re not having a heart attack, so buh-bye.”

• Being told, “Maybe you can get back to exercise next year” or “I have a lot of patients with your same symptoms,” implication being that you need to chill out.

• Getting misdiagnosed as having anxiety or depression. (We already know that POTS sufferers contend with delayed and misdiagnoses.)

• Being offered pharmaceuticals for symptom relief (e.g., antidepressants, anti-anxiety medications, statins to treat changes in your lipids that go along with not exercising, maybe even hormone therapy in certain populations—you know who you are, ladies.)

If you want to read more, there is amazing writing going on around here on the lived experience of Long COVID, including experts sharing what we know about how it changes people’s lives.

When I read these columns, I can’t help but worry about some people’s quality of life being valued more highly than other’s. Based on research evidence for other conditions, I have no trouble imagining that people with this inability to return to exercise are taken more or less seriously based in part on their age, gender, and body.

This AHA statement is focused on people with Long COVID who cannot tolerate exercise. This leaves aside many important symptoms such as brain fog, severe fatigue, and a hundred others.

There are also people with overt cardiovascular diseases that happen post-COVID, like myocarditis, pericarditis, new or worsening myocardial ischemia, arrhythmias, etc. Those conditions are outside the scope of this paper, and the paper states that management of those conditions should follow standard guidelines.

But for everyone suffering from Long COVID, it is critical to have as much information in hand as possible.

And statements like this, which pull together what we know about it, are invaluable tools. So here’s some of what we know about why some people with long COVID are struggling to get back to exercise (and what you might be able to do about it!)

The pulmonologist who gave me this article described it as a profound deconditioning problem. Turns out these cardiologists are seeing a lot of commonalities between Long COVID and other kinds of situations where people’s cardiovascular systems get deconditioned.

(If you want to skip to the exercise plan, jump down a couple of figures!)

For example, POTS, which is a syndrome involving symptoms like rapid heart rate with standing, lightheadedness, fatigue, nausea, and exercise intolerance. It’s one of those conditions that is managed rather than cured. My dentist said he has several friends who have suffered for years with POTS! We know that for various reasons, POTS gets underdiagnosed or misinterpreted as anxiety.

But this is a syndrome that appears in a bunch of different situations, not just Long COVID.

Beyond POTS, Cornwell et al describe in this statement how similar patterns appear in bedrest studies and with astronauts in zero-gravity (p.e51). When you put a healthy 20-year-old on bedrest for 3 weeks and then measure cardiac changes, they show some of these same symptoms (p.e52). They also show up after viruses (p.e51).

(Again, not a doctor, but…) This translates to an intolerance for exercise for several reasons. Parts of it is that these people develop a reduced blood and plasma volume, which has implications for blood pressure, heart rate, the volume of blood the heart can move around, and the amount of oxygen that can get transported around your body.

In the early days of the pandemic, there was an assumption that Long COVID patients who couldn’t tolerate exercise had developed something called dysautonomia, which is a nervous system disorder that disrupts autonomic body processes like your blood pressure and heart rate.

But this AHA statement is saying that we don’t see clear evidence of that nervous system disruption! They are thinking it’s less of a nervous system disorder and more of a deconditioning problem (p.e53).

I asked this pulmonologist, “does this mean that people can recover?” His reply? “Yes, we think so.”

People with these varied conditions have seen major improvement when they were put on specific exercise protocols. As in, in one study of athletes only 2% continued to have symptoms (p.e50).

That maybe seem counterintuitive, since exercise is exactly the thing they can’t tolerate, right?

But here’s what AHA is suggesting as possible exercise protocols for people with long covid and exercise intolerance.

I note 2 features.

(1) They are starting with just 5 minutes, and working up very slowly by 2 minute increments. (2) They are showing pictures of people using recumbent bikes and rowing machines to help accommodate people who have trouble getting vertical due to the orthostatic issues that are part of the syndrome. This allows them to try small bites of exercise from a quasi-vertical position.

If you or someone you care about is facing Long COVID and exercise intolerance, has anyone told you this? If you are a physician treating patients in this situation, have you considered this as an option for them?

What are we supposed to do with this information?

We have to stop letting providers act like there is no information out there to help.

If you are facing exercise intolerance, share this with your provider and see if together you think there is something worth trying. (Again, I’m not dispensing medical advice, just resisting a lack of information.)

Even if you’re dealing with a different set of Long COVID symptoms, I urge you to share this with your providers and ask if there is anything in it that informs your situation. Show that you have knowledge too!

If this does square with your symptoms, how amazing that something as actionable as very small doses of exercise, combined with hydration, might help even a little bit.

It is affordable, it is doable, and it does not require waiting for bureaucratic research structures to grind away for years to produce a novel medical treatment. There are people connecting COVID aftermath to other conditions we have studied.

This is inherently a social justice issue:

Since COVID disproportionately affected certain groups, Long COVID does the same. We know these populations also tend to be undertreated in healthcare. It’s a Triple Whammy.

And, if you’re still thinking you don’t know anyone with Long COVID, take a look around and consider sharing this information anyway— even if you just drop a link to a friend or your own PCP (or your dentist, in my case!).

🎤 Please DM me to let me know your questions or topics you would like to see me cover. I’m always on the lookout for prompts!

👀 Let’s be friends on Instagram, where I post about research & end-of-life topics.

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A few weeks ago I had a meeting with my accountant, who I call My Tax Guy. MTG was actually my father’s accountant, dating back to 1977 when we first moved to town. MTG and my dad were about the same age back then, both growing their careers and families. They became good friends over the years.

How I came to inherit MTG kind of sneaks up on me. For many years, he was just a name I heard from my dad, and as a young kid I certainly didn’t have occasion to spend time with him. When my father died in 1998, I was in graduate school out of state. At that point, my mom took over executor work which included tax stuff. When my mother died in 2011, I found myself next in line to work with MTG.

I was 39 when she died, and I can remember sitting in MTG’s office in those heady early days. I wore professional work clothes to his office, trying to dress the part of The Executor while squeezing out the role of Unhinged Grieving Daughter. It worked for awhile. But my bottom fell out at some point in our multi-hour meeting, just the two of us at a long conference table, 3 or 4 seats apart, with an explosion of paperwork in front of us. I didn’t understand even the basics of that I was doing while the to-do list grew by the minute.

My throat got tight in that way that makes you know tears are coming, and I tried so hard to swallow them back, but I couldn’t talk, and in that moment I think MTG saw me for all that I was. He literally put me in his car and drove us to the nearest bank, which was in a Safeway, and helped me open an estate checking account on the spot—with stern instructions to not pay for anything else out of mom’s checking account.

Flash forward back to my recent meeting with MTG.

I had searched through some old photo albums when I was writing this essay, and I came across this one of my father and me. There are actually very few photos of the two of us, I think because he was often the one behind the camera. I don’t even know if he ever had a digital camera. I snapped a photo of the photo. In my meeting with MTG, I was looking through my phone for a piece of information, and I stopped.

“Hey, MTG, check it out.” I held up my phone across his desk.

He froze, hands hovered over his keyboard, staring at the photo. A slow smile crept over his face, and trance-like he reached out to take the phone from my hand.

“How old are you here? Three?”

“Yeah, probably.”

“And how old is he? Early thirties?”

“Must be somewhere around there.” This would have been just a few years before they met.

“Awww man, those chops, he always had those.” Chuckling. “He’s thinner here too.”

He contemplated the phone for a long time, dreamily.

I have lived more than half my life without my father.

But in my mind, he was here yesterday. He was 6’3” tall, and I still know exactly how high I need to stand on my tiptoes to bear hug someone of that height. I know the roughness of his stubble when he kissed me, the exact tenor of his voice, and I hear his advice in my head. I feel the sway of the one time I ever slow danced with him at a family wedding. I hear the heaving sound of the ventilator that kept him alive in those last hours in the ICU, and when I watch Broncos football games I am connecting with his team and the 1978 Super Bowl in our living room.

Still, there precious few people in my orbit who ever knew him, let alone loved him. My college roommate met him a few times. Dad was gone for well over a decade before I ever laid eyes on my husband. I am close with an uncle for whom Dad was basically a big brother. But I live a life where he is an abstraction for most everyone I know.

So MTG caught me off guard.

I found myself with that tight throat again, though I think I composed myself before he noticed. Eventually, he handed the phone back and it was back to taxes as if this rift in my universe never happened.

The thing is, this is a real example of what grief is like.

People like to say things like grief doesn’t get smaller, but your life grows out around it. I think there is truth in that— I like to think of it as practicing living in a world where people I love are not here in a way that I can call them up on the phone, or steal their snacks, or ask their advice about what to do with my car.

You can get used to that— for decades, even— and still someone like MTG can come along and open your portal wide open, without notice or permission. He didn’t have to spot the red hair and make an educated guess, “Is that you?” He knew exactly what he was looking at, what he was seeing, and he enthusiastically rode that surf into another season of his life. He let me come with him has we sat there in his office. It was a beautiful thing, in the way that grief makes you feel brutalized and elevated all at the same time.

I don’t consider myself an expert in grief, and it’s not my pet topic— I prefer to think about healthcare and how it affect us on matters like end-of-life. Emotions are more contained in that arena, honestly. But experiences like these remind me how and why I have been able to sit in my research with so many people who are facing uncertainty and loss.

I think of this moment with MTG as one tiny loop in a big tapestry of time, memory, and social networks that has wrapped me up over the years. That tapestry is composed of endless other loops and knots, any of which can open up in a given moment, on a given day, in a given year. I couldn’t possibly capture more than one without exhausting myself, even as there are thousands and thousands of them.

But understanding that everyone is walking around with a similar tapestry—one that is profoundly and exactly tailored to their life—has changed how I see the world. I can sit with people knowing and respecting they have their tapestry, and I don’t have to understand it, or catalog it, or validate it. I just have to know they have theirs like I have mine. It is a shared humanity that doesn’t have to be dissected or graded to make us closer.

If I am lucky— as I have been so many times— fellow humans will let me come sit on their couch, pet their dog, and hear about one or two of these small moments in their stories.

And if they don’t, I can still see them.

End Notes:

What are you reading? Last week I mentioned I went to a book signing for Meghan Rabbitt’s new book, The New Rules of Women’s Health. Standing in line, I met Amanda McCracken, whose brand new book, When Longing Becomes Your Lover, was launching in a few days! I had just seen this one discussed on Instagram, so it was fun to meet her serendipitously like that. I’m reading it now, and it’s great. If you don’t know the concept of limerence, you will see plenty of modern life here.

🎤 Please DM me to let me know your questions or topics you would like to see me cover. I’m always on the lookout for prompts.

👀 Let’s be friends on Instagram, where I post about research & end-of-life topics.

______________________

It’s come to my attention that I give this one piece of advice all the time that may not be fully helpful to people, so let’s unpack it a bit and rectify this situation.

Said advice goes something like this:

Oh, not sure how to talk with your family about these end-of-life topics? I get it’s really difficult. But there are some wonderful online resources that are design to help. Try 5 Wishes or The Conversation Project.

Then I hear nothing and assume that people are able to take the next steps. I imagine they are all out there using these materials and having all sorts of success. It’s kind of like teaching college students, where you get crickets and that could mean all is well, or it could mean everyone is confused and no one wants to speak up.

But recently a friend called and asked if we could talk about a family situation where they were experiencing a lot of frustration and pain. One family member was getting close to end-of-life, and was not wanting to have more treatment. Their spouse was extremely upset about this, and my friend was hoping to facilitate some conversation.

I shared the usual resources. But as I talked with my friend, I realized that it was hard for him to envision what these resources were and how he could use them. I ended up reading sections of the worksheet over the phone to paint a picture.

Afterward, I realized it might help you to see this worked out visually here—and to hear from someone who had a successful experience doing 5 Wishes with her family.

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First: A quick overview of 2 tools.

1. The Conversation Project is a not-for-profit collaboration with the Institute for Healthcare Improvement. They have been working together since 2011.

Some things I like about TCP include:

• It’s research-based (check out resources here)

• Their conversation starter guide is FREE

• It’s available as a PDF here

• I also like the content, especially if you think someone is needing a conversation about various end-of-life healthcare services— think palliative care or hospice. TCP backs into those specific topics in ways that are completely aligned with everything I have learned in my research with palliative care providers.

TCP’s starter guide is organized around these 4 steps. I think it’s powerful to acknowledge that these conversations often do not happen in one fell swoop but take time.

Then, as you get further into the guide, the pages look like worksheets you can fill out. Here is the page for Step 1 (the other steps are longer but have a similar format).

I like how we are encouraged by TCP to gather our thoughts beforehand (because no one wants to be bombarded in this situation), and also think about what a good day looks like right now. In my research, I find that people have trouble thinking about quality of life in terms something other than whether or not they would want to be on a ventilator. Often, the keys to thinking about these topics are things that you might be doing right now, while you read this. Drinking coffee? At home? With someone you care about? TCP gives you permission to see quality on those terms, and helps you share that perspective with people who might be caring for you.

2. 5 Wishes was established in 1998 and stems from the non-profit organization Aging with Dignity. They characterize themselves as the “first advance care plan (ACP) to address personal, emotional, and spiritual wishes, in addition to medical treatment.”

What are the 5 wishes you discuss?:

• The person I want to make care decisions for me when I can’t

• The kind of medical treatment I want or don’t want

• How comfortable I want to be

• How I want people to treat me

• What I want my loved ones to know

5 Wishes also has a great YouTube video here if you have more questions:

Some things I like about 5 Wishes include:

• 5 Wishes is designed to serve as an advance directive. They sought input from the American Bar Association and have information for each state in the US; it has been translated into 30 languages.

• This means that 5 Wishes can generate a legal document that you can upload and use in place of outdated documents you want to replace.

• The trade-off is that, unlike TCP, which is free online, you can see a free sample PDF online for 5 Wishes but need to pay to have a digital ($7.50) or paper ($5) version (with discounts for volume).

• I think these are great for families that want to talk about these topics generally and need an ice-breaker, but would maybe go toward TCP if there was more immediate questions about whether to seek end-of-life services.

Second: Does it even work?

So what about my friend who called asking for advice? My understanding is that these tools didn’t do much to change things when he tried to engage with his family. I know another person who has been trying to start EOL conversations with her family, and no one will engage with her either. That’s FINE and NORMAL, if frustrating.

These tools are not magic bullets, and I definitely get that. In the big picture, though, I think they are so much better than having nothing to help support and guide these difficult conversations.

It’s difficult when people are getting close to dying. These are hard topics to cover even when everyone is alive and well. Everyone has different emotions, perspectives, histories, and ideas about how this “should” unfold.

Third: Enter Jan! She did 5 Wishes with her family while they were all healthy and tells us about what worked and what advice she has.

Hi Jan! Thanks for sharing your experience. Can you tell us why you wanted to try 5 Wishes and what you did?

I used this tool with my mom and dad. At the time when we went through it, they were both in their mid-seventies, both retired, still living independently in the house I grew up in, still going to church every Sunday in the congregation where both of their daughters were married. They are both in good health, no chronic conditions, and no indication that we’ll need to honor their Five Wishes anytime soon.

My husband and I were caregivers for my mother-in-law in our home for the last 2 years of her life, and as you might imagine, that experience gave me A LOT to think about regarding my own parents: what the end of their lives might look like for them, and what their ends might look like for me, as the first-born daughter. I know it got them thinking about it as well, as they witnessed my experience, and they served as a support system for me and my husband. At the same time, my dad was watching HIS parents work through their own end-of-life decision-making. All of this is to say, my parents and I (and my sister) were predisposed to have this conversation.

I learned about the Five Wishes program from an elder law attorney who was helping with a will for my mother-in-law. Working through the booklet seemed to be standard practice for her, and it was really helpful in our conversation about the will, it was a nice way to ease into the task at hand.

About a month after my mother-in-law died, I ordered a set of Five Wishes booklets from the company, and I started handing them out to family members. I had told my parents about the program when we did it with my mother-in-law, so they were familiar. And they were completely on board when I gave them the booklets and said, “Go through this, together or separate, and let me know when you are done.”

How did it go?

It was probably a month later when they told me their homework was complete, and it was time for a family meeting, just the four of us. We got together on a Sunday afternoon and sat around their kitchen table to see what they wrote. They each completed their booklets separately, which I thought was nice, so each could really be true to their OWN wishes.

Wishes 1 and 2 and 5 were easy to work through. They had completed living wills and DNRs years ago, so we already knew about their medical treatment decisions. It was interesting that they had different answers about life support for themselves, and that generated some conversation. One of them is firmly not wanting life support, and one of them wants it if a doctor believes it will help. The second parent was almost apologetic about expressing this wish, and we assured them that this was THEIR decision, and we would honor it without hesitation and without judgment.

When we got to Wishes 3 and 4, though, about comfort measures and how to be treated, this is where things got a little uncomfortable. It was clear that neither of them had thought much about what their end-of-life, pre-death days might be like.

My mom almost enjoyed the Wish 3 list, remarking that many items sounded “really nice.” I think it was reassuring to her know that someone would attend to her comfort in these ways when she could no longer do that for herself. From my dad in this section, we learned that he is emphatically NOT INTERESTED in warm oils, or any kind of massage, for comfort; we had a good laugh about the intensity of his feelings on this topic.

In fact, we had a lot of laughs, and we also had tears.

We talked about both sets of grandparents and what happened at the end of their lives. We talked about my experience with my mother-in-law: what I had learned, what I would have done differently, what I WILL do differently should I find myself providing that level of care for my own mom and dad.

I would give my parents each an A for their assignments. They clearly gave the exercise care and thought, and their requests are all easy to fulfill. My mom was ready to fight for having “Boomer Sooner” played at the end of her service, but we told her, no problem, we’ll find a recording. If that’s what she wants, that’s what she will have. It will be our privilege to honor their Five Wishes, and I’m grateful to know what they are!

What made it go well? What advice would you give people starting this process?

When I was growing up, I assumed everyone had a family like mine: close, communicative, supportive, loving. I’ve come to realize that we are an exception, and I’m so thankful for that exception. This conversation was made infinitely easier by the fact that we are so close, and that we are all confident in the love, and intentions, we have for each other.

I recognize that these will not be the conditions that exist for everyone who wants to use this tool with their loved ones. In fact, I am currently a caregiver for my mom’s brother and sister (in their early eighties, and NOT in the best of health), and while I would like to go through this program with each of them, we’re just not there yet in our relationships.

My advice for others is: do it when your loved one is healthy, when the need isn’t imminent. When we talked about these wishes with my mother-in-law, it was really too late because we were IN IT, and I think that made it difficult for her to be truly honest about what she wanted.

I definitely recommend having your loved one go through the booklet first on their own, collect their thoughts, and then talk with you.

And acknowledge that this is a gift for both of you: you are giving your loved one the gift of a promise to honor their wishes to the best of your ability, and they are giving you the gift of not having to guess, not having to worry about making a wrong decision.

We did not take the extra steps of having witnesses sign or uploading the document to the Five Wishes site or making copies for their doctor. For us, we all felt it was sufficient to have had the conversation, to have one copy of the documents, and to commit to keeping the lines of communication open as the years come and go.

Their Five Wishes are tucked away, and I hope to not need to look at them for quite awhile yet.

p.s. Soon after I published this, I discovered this piece in The New York Times, “5 Conversations to Have with Your Aging Parents”— perhaps of interest.

End Notes (back to Karen 😊)

What are you listening to? I’m not a huge podcast listener, but I can’t get enough of Anderson Cooper’s podcast All There Is. He did an episode with Nick Cave in December and it’s just exquisite. If you feel alone in grief, or you just want to listen to a human being interviewing people about being human, try it out.

What are you reading? I recently discovered the author Katie Kitamura, and I devoured A Separation, Intimacies, and Audition in short succession— kind of like not being able to stop with a bag of Doritos, but at the end, instead of feeling gross, you still want more. And you want to be able to write as beautifully.

Where are you hanging out? Last week I went to a book signing for Meghan Rabbitt’s new book, The New Rules of Women’s Health. I’m admittedly biased because I met Meghan when she interviewed me as an expert for this book. It’s like an updated Our Bodies, Ourselves. There was standing room only at her signing, and the conversation was super-smart. 10/10 no notes! Relevant for women of all ages and the people who care about their health.

I have published an essay here every 2 weeks since starting my Substack last June, and I had a column all set to post here today. It’s about how to use end-of-life conversation tools (think 5 Wishes and The Conversation Project), complete with screenshots and a Q&A from a friend who had a lot of success using them with her family. It’s great, I hope you love it when I post it.

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But today is not the day for that post, I decided. Today, this week, this month, right now, call for a bit of quiet from me on those end-of-life healthcare topics.

Instead, I hope you can take the time you might have spent reading my essay and use it to read something from the fire hose of quality writing coming out right now.

Read about how to help.

Read about our history, in this country and others.

Read to understand how institutions can hurt us (after all, this is the core of my medical gaslighting interests).

Read to cultivate empathy.

Take action that is workable for you.

Rest if that is what you need.

I stand in solidarity with our friends in Minnesota. They are literally my friends, as I lived there for 7 years, sometimes just a few blocks from events on television. I know what -20 feels like and what goes into being outside in that weather. I am so grateful for and proud of that progressive community.

But also this is everyone’s neighbors, all our communities, and everyone’s peace.

I plan to be back in two weeks with my post about end-of-life conversation tools.

🎤 I know people have a lot of questions and stories about medical gaslighting and end-of-life healthcare. Please DM me to let me know your questions or topics you would like to see me cover!

🎤 I am here to be engaged with you, and I know people have a lot of questions and stories about medical gaslighting and end-of-life healthcare. DM me to let me know your questions or topics you would like to see me write about!

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This year, I wrote a book for the first time!

It’s not out yet, it’s somewhere in the production pipeline with plans to be published in 2026. (So maybe it would be more accurate to say I wrote a manuscript?)

This is my first book, but not my first time publishing. I have been putting out peer-reviewed academic articles for years—50+ since I started in 1998. I’ve learned to write for clinical, policy, social science and international audiences. I’ve been thoroughly humbled by reviewers, made to kill my darlings, and sent back to the drawing board.

But sometime in the last few years I started feeling deeply unsatisfied with scholarly articles as a way of disseminating what I was learning from my research on end-of-life.

I had collected data for a decade, over 120 interviews with patients, caregivers, and physicians. But the articles were such small bites I didn’t have enough word count to bring the bigger picture into focus.

Case in point: Here’s one of my favorite articles from this era. I would hear the trope all the time in the field that “if we just get people into palliative care then they will convert to hospice.” Enrolling in hospice was treated as dichotomous (yes/no) decision. But what I saw in my research was what I thought of as a “soft no,” where people were saying they were open to hospice but it wasn’t time YET. This matters because thinking of these responses as a spectrum opens up different kinds of explanations for why people don’t go to hospice and interventions to help them.

Since it was published in 2020, this article has been cited a whopping 6 times. Meh.

I had a colleague tell me that one of her physician colleagues was excited to hear she was working with me, because she loved this paper. That was nice! But I felt a slow burn of a realization that even if I publish this in clinical journals people can’t (don’t?) always do much with the information. Even if they are interested, their hands are often tied by the organizations where they work.

Plus, there is the matter is not having enough space to do much with the data I collected.

When I say I did over 120 interviews, that means I have about 30 single spaced pages of transcript for each person telling their story. But in a 3500 word article, those stories get distilled down to quotes like those highlighted below. The ellipses alone, necessary to meet the word count limits, make it hard to follow the line of thinking.

The data analysis was too shallow.

The arguments were too truncated.

And probably most importantly, the information was not getting into the hands of people who could best use it.

It was another two years before I really started drafting and conceptualizing a book. I talked with people who had written different kinds of books (academic, trade, self-published), asked about their experiences and solicited their advice. I knew I was changing course when I wrote a couple more articles but didn’t submit them to journals so I could use them for a book. Long story short, by the start of 2025, I had an agent, editor and a contract with a trade press (all amazing!).

I spent most of last year in the writing trenches. What did I learn?

It was intoxicating to leave the shore.

I recently devoured the novel Audition by Katie Kitamura. In it, her actress protagonist is struggling with a role. She tells us that when she successfully inhabits a role it is like going out to sea, losing sight of the shore in the process.

That metaphor captured how I felt about my book writing. It was long enough and deep enough that I engaged the data, the story-telling, the arguments, and my personal experiences with more depth and nuance than I had ever been able to capture before. I lost myself in transcripts, working and re-working people’s stories to be compelling for the reader while also acting as conduits for the points about the healthcare system I was trying to make. I remembered so clearly what it felt like to be in their homes, to sit with their uncertainty, to witness their dying bodies, to pet their animals. I was off in my mental writing world a lot. It was one of the most exciting intellectual experiences I’ve ever had.

I engaged more deeply with data than ever before in my career.

Once my editor prompted me to make people’s stories do the explaining, I felt liberated to lean into that. Each chapter is focused on one patient’s story, in some cases paired with a healthcare provider’s. I worked hard to not just code data but revisit the narratives to understand which people best illustrated which analytic points. How to match patients with providers to show how the healthcare system lets people fall through the cracks? How to tell their stories in ways that do justice to how smart people are, how hard they are working, their rational reasons for doing things? I felt connected with my role as a steward for these stories. Sometime in late summer, I gave my husband the introduction and first chapter to read, and he tells people that they both made him cry.

I was able to be more serious about my positionality in the research.

In anthropology and sociology, we talk about positionality, which is basically a way of being explicit about the researcher’s identity and how their experience of the world may shape their research claims. (As opposed to positivistic approaches where all researchers are presumed to be neutral objective observers of a shared reality.) From the excerpt above of the Soft No paper, you can imagine that if there is not enough space to give more than a short quote from a patient, there is definitely not space to write about who you are coming into the work, and how that might shape your understanding.

But I do come to this topic with personal experience, having lost my father in my 20s and my mother in my 30s. While I had studied other aspects of healthcare inequality for years, my interest in end-of-life care was definitely brought on by my lived experience in this arena. This was something I think some patients and caregivers could detect in talking with me, and once in a while someone would ask directly, but it was utterly absent in my academic writing.

But not in the book: each chapter contains a vignette about my personal experience. I wrote and re-wrote, trying to tell my story with my mom in ways that would take dry analytic points about healthcare and turn them into real experiences for readers. I am proud of the quality of this work, of not avoiding discussion of my positionality, but also terrified for these vignettes to be published. Decades of research has allowed me to feel I could hide from that exposure.

I was liberated to focus on my audience as real people using healthcare. Like you and me.

Every decision in this cascade, from the proposal to the data analysis to the writing, has been geared to writing for lay people who can use the information. This did not come easily for me, so lucky for you my agent and editor knew how to talk to me about changing directions to get the effects I said I wanted.

Thanks to those efforts— to my stretching what I thought I knew about research and writing—this book-in-progress is for the kinds of people I interviewed, not academics or journal reviewers who may or may not think the same way you and I do about what is relevant for making a boots-on-the-ground difference. I can imagine handing chapters to people in my research but also my friends and family members. I hope others see themselves in the stories. My agent encouraged me to create a bulleted list at the end of each chapter where you can stop and ask yourself key questions that might adjust the course of your care. I was banned from using academic words like “ontology” and “boundary object”!

And it’s all much better for those efforts and adjustments.

Just as the pre-writing period was full of new learning (querying, proposal development, going out on submission, meeting editors), I know these next stages (production, marketing, publicity) will also be different.

I don’t have expertise in any of these areas and am completely learning on the fly! However, I am excited and humbled to move forward with the support of the fantastic team of people helping bring this project to fruition. Maybe I will have reflections on those in another year.

But for now, thinking about the Great Book Writing Experiment of 2025, I learned something new about my research and my writing (and myself), which is definitely not something that happens every day in a career.

End Notes:

What are you listening to? I’m deep in the rabbit hole of preparations for my spring semester, so most of my reading right now for teaching classes. But I did enjoy this episode of the podcast “A Good Hang with Amy Poehler” where she interviews Julia Louis-Dreyfus. They talk about how they are both podcasting, and I love listening to people talk about honing that craft because I also work on it. But hearing how they talk about watching SNL as young girls and what it meant to see women represented in their fields was pretty awesome and relatable.

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There has been a lot of talk in the news recently about the death of Rob Reiner, truly someone who has made amazing social contributions. But I want to take a moment here to recognize and share the work of someone else who died recently, someone who has really inspired me.

Adam Hayden was 34 years old when he was diagnosed with terminal brain cancer in 2016. Adam and his wife Whitney, parents to three young boys, “took a bad situation and did good things with it.” Trained as a philosopher, Adam wrote and spoke extensively about his experiences in his Glioblastology column and on TikTok, as well as in op-eds in a multitude of other places. He was a member of the National Brain Tumor Association, and he and Whitney traveled to DC multiple times as part of their advocacy efforts.

I first saw Adam speak in person at the 2019 ENDWELL conference in San Francisco. I had come to the meeting to try to shake things up for myself, to hear speakers on end-of-life who were not just physicians. So as a social scientist I of course went nuts to see a speaker integrating philosophy in his presentation—and I got a chance to tell him how much I enjoyed his talk when we were on benches outside during the food truck line during lunch. He was kind to this total stranger, and his TED-talk style presentation about living while dying gave me a lot to think about. I encourage you to watch.

Adam posted about his regular brain scans, and you could not help but feel part of his “fam” team because of the ways he shared his experience. Even as he knew there would eventually be scans with bad news, he just kept putting himself out there.

In November, he posted on Instagram about entering his “home health era” as he entered hospice.

I salute, admire, and thank Adam, Whitney, and their family for everything they shared with community. I can see where they voted with their feet as they showed up in DC advocating for patient rights; voted with their words as Adam gave presentations and wrote so eloquently about his experiences. Here is a favorite of mine:

Adam showed us over the course of several years how prognosis shapes decision making. Avoidance of difficult prognoses is often a route for avoiding end-of-life conversations, which can feel easier in the short-term but terrible in the long-term when we are unprepared for what actually happens. Instead, I appreciate his call for improving transparency and dialogue in communication. Adam reminds us how dying is a process and not just an event. Living while dying can be a goal for all of us.

Adam’s last post is an astonishingly beautiful essay about his experience with a 911 call when he had a seizure while on hospice. I won’t try to summarize it or steal good quotes— just go read it and try to digest what he writes about consent and dignity. Marvel at the generosity of someone sharing that kind of real-life story when it would be so easy to keep it private.

I genuinely hope that Adam and his family have felt their generosity and community reflected back to them. My sincerest condolences.

You can read additional obituaries for Adam here and here.

End Notes:

What are you reading?: hey, it’s the semester break, I’m reading for fun! Intimacies by Katie Kitamura is about an interpreter who has come to The Hague to escape New York and work at the International Court. The writing is just so subtle and engaging. When I picked it up I didn’t realize at first it was the same author as Audition, but of course once you see the connection you can’t unsee it. A real example of the kind of writing I aspire to let mold my own.

What are you watching?: Animal Kingdom. I can’t stop. Watching Ellen Barkin in this show takes me back to Sea of Love. Remember how titillating and scary she was with Al Pacino? “Was she the do-er?” lol

Also reading: Meander, Spiral, Explode: Design and Pattern in Narrative. Willing to think outside the traditional narrative arc? This book’s for you.

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