Here is the introduction of my new book! It’s available for pre-order now and comes out on September 1, 2026.
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.
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.
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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.
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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.
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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.
Brilliant - total respect - I wear the TALK ABOUT DEATH TEE SHIRT as a baseline - thank you for your work 🙏
What this introduction captures so well is the cruelty of being asked to “choose” inside a system that has already shaped the available options before the patient can see them.
Shared decision-making was a necessary correction to paternalism, and it sounds humane. But the choice framework can do something quieter and less benign. Once the patient is named as the decision-maker, she can also become the bearer of the outcome. When the death does not match the preference, the system can read it as a choice she made rather than a default it imposed. Structural failure gets re-billed as personal failure, and the language of autonomy, meant to protect the patient, becomes one way a fragmented system sheds its own accountability.
The deeper problem is temporal, and Lilly’s story makes it exact. Agency at the end of life is not a state but a window. The capacity to act and the information needed to act often arrive in the wrong order: by the time the options finally become legible, the body has already spent the strength required to pursue them. Lilly’s BRCA result was correct and arrived after three years of delay, too late to be agency, only late enough to be knowledge.
The choice paradigm imagines a decision-maker who stands outside time, rested and fully informed, with the menu laid out. The dying person decides inside a closing window, and the system too often delivers clarity after it has shut.
So information alone does not create agency. Agency needs a world in which the next step is visible, reachable, and humanly possible while there is still strength to take it. Perhaps the real failure is not that people choose badly near the end of life, but that we keep mistaking late, overburdened, structurally constrained decisions for choices at all.