My Mother Wanted to Die at Home. I Wasn’t Prepared.

It was early November when my mother first developed hoarseness. She’d had Alzheimer’s since early 2023, and by mid-2025 she seemed to exist in a state of perpetual bewilderment. She was a healthcare worker who’d never used much healthcare. As a retired nurse, she’d left no doubt regarding her preferences: no heroic measures. “I’ve had a good life, Mary,” she used to say.

So I thought long and hard before I made an appointment with her primary care doctor. As a seasoned emergency medicine physician, I know the drill: if you hang around the barbershop, you’re going to get a haircut. If you take an 86-year-old woman to a doctor, she’s going to get a lot of testing.

I waited three weeks. The hoarseness didn’t improve. I made the appointment.

For most of human history, people died suddenly— often as a result of infection, usually by the age of fifty, and almost always at home. It wasn’t until 1945 that life expectancy crossed the 70-year threshold for women. It was the 1950s before most Americans died in hospitals.

Today, end-of-life care is a topic of rigorous debate. It’s expensive: anywhere from 13% to a quarter of all Medicare spending is consumed by the 4% of beneficiaries in their last year of life. It’s also of debatable quality. And if you ask people what they want at the end of life, no one hopes for an expensive hospital death. What we want is a “good death”. 71% of us want to be at home and prioritize dying “without pain, discomfort, and stress.” Studies of bereaved family members concur, with higher quality care reported when hospice is initiated early, and ICU stays and hospital deaths are avoided.

We left my mother’s doctor with instructions to pick up a cane and have blood work drawn. We spent most of December in a vortex of testing. There was a referral to neurology and an appointment with the head and neck specialist. A scope solved the mystery of her hoarseness: a mass at the base of her tongue. This led to her first biopsy (unsuccessful), a CT scan, another biopsy (successful), a PET scan, and finally a verdict from the oncologist: large B cell lymphoma, present in her neck and magnificently aggressive.

Chemotherapy had a 5% chance of success.

We chose hospice.

In the 1960s, when Dame Cicely Saunders suggested an alternative philosophy for the terminally ill —one that minimized medicalization of death and maximized comfort— she was met with skepticism. Today, however, hospice is a beloved element of mainstream medicine. Over half of Medicare beneficiaries are enrolled in hospice when they die, and popular opinion of it is overwhelmingly positive. It’s also considerably less expensive than dying in the hospital.

For physicians, enrolling a patient in hospice care can be a great relief. I’ve lost track of all the ways I’ve seen people die: suddenly and slowly, peacefully and painfully. Once, to my horror, I declared a patient dead only to have her start spontaneously breathing again. Hospice, by contrast, signals an end to unrealistic expectations. No more monitors, middle-of-the-night blood draws, or futile care.

But what my mother’s death taught me was something that twenty-five years in emergency medicine hadn’t: how people die at home.

For family members, hospice can be complicated. True, it comes with services like nurses, social workers, and chaplains. And it’s generously funded by Medicare. But dying at home still means shifting from professional to family caregivers. It means intimate personal care, like bathing and feeding a loved one. Managing distressing symptoms like pain, agitation, and dyspnea. Changing adult diapers and administering suppositories. And it’s a 24/7 gig.

Throughout January, I did my best. We gave medication to suppress her secretions and ordered a hospital bed to keep the tumors from suffocating her. Soon after, we started morphine. She waffled between constipation and diarrhea, while I waffled between grief, exhaustion, and resentment. I often felt like a complete failure.

Like all parents, Carolyn Meyer was not perfect—but she was damn close. She loved me with a fierceness I didn’t fully understand until I had my own children. What the dementia hadn’t taken, the lymphoma did. I watched as she lost her speech, then her ability to swallow. And then she was gone.

In the aftermath, I am considerably more humble and less naive. I’m more intentional when I discuss hospice with my patients. Even with a quarter century of medical training, I wasn’t prepared for my mother’s death at home. And I’m not alone: about a third (32%) of hospice caregivers develop moderate-to-severe anxiety and depressive symptoms. Encouragingly, several new programs—including hospice homes, inpatient units, and death doulas—attempt to step into the breach between over-medicalization and family overwhelm. They show promise. Others have suggested expanding financial support for caregivers or in-home nursing support for highly symptomatic patients.

In 2017, the most common place to die once again became the home. With this shift, I believe we are headed for a reckoning. By 2060, a quarter of the US population will be over 65, and many expect their children to care for them— children who aren’t necessarily prepared to shoulder this responsibility.

What I’ve come to realize is that our loved ones deserve the good death they envision. But, in an era when most die protracted deaths from chronic disease, this means recognizing that death is not just about the right place, but also the right support. And it’s not just about the dying, but also the family who survive them.

Mary C. Meyer, MD MPH has been an emergency medicine physician for 25 years and holds certificates in global health and climate medicine. From 2018 to 2024, she served as the director of disaster preparedness for a large healthcare organization in Northern California and responded to many disasters, including wildfires, power outages, evacuations, poor air quality, highly infectious pathogens, and staffing shortages.

Photo by Christina Radevich on Unsplach