I’ve spent more than a decade in hospice care, sitting at the bedsides of people facing the final days of their lives. I’ve held hands in hospital rooms, in tents, in prison cells, and in homes that barely qualify as such. And over time, I’ve come to see that dying in America is not just a medical event — it’s a mirror. It reflects everything we’ve failed to do for the living.

Hospice was created to bring dignity to the dying — to manage pain, provide emotional and spiritual support, and ease the final passage for people with terminal illness. But the systems surrounding hospice care are riddled with inequity. The very people most in need of compassion — the unhoused, the incarcerated, people of color, LGBTQ+ individuals, and people with disabilities — are systematically excluded, underserved, or erased. Access to a good death is too often reserved for the privileged, while everyone else is left to navigate a system that wasn’t built for them — or worse, actively works against them.

Let’s start with the unhoused. There is no protocol for providing hospice care on a sidewalk or in a shelter. Hospice agencies typically require a home environment, a designated caregiver, and a phone number. But what if a patient has none of those? I’ve seen people discharged from hospitals with a terminal diagnosis and a bottle of morphine, sent back into the streets to die alone. One man I worked with — a veteran with end-stage liver failure — was found unconscious in an alley just days after being released with “palliative care instructions.” He was never referred to hospice. He didn’t have an address, so the system had no place to send him. He died in a detox center, surrounded by strangers.

Then there are those behind bars. Incarcerated people have virtually no control over their medical care — let alone their death. I’ve advocated for terminally ill patients to be granted compassionate release, only to see requests delayed or denied for bureaucratic reasons or lack of public sympathy. Even when incarcerated individuals are transferred to outside medical facilities, they are often shackled to the bed, denied family visits, and discharged back to prison just before death. It’s not unusual for someone to die alone in a prison infirmary, having never received a single hospice visit.

People of color face another kind of barrier: delayed referrals, under-treatment of pain, and deep-rooted distrust in the medical system. Black patients, in particular, are referred to hospice later than white patients and are less likely to have their symptoms adequately treated. I’ve seen firsthand how pain management is treated as optional for some and automatic for others. I once cared for a Black woman with metastatic breast cancer whose family begged for stronger medication. A physician resisted, citing concerns about “dependency,” even though she had mere days left to live.

LGBTQ+ individuals also navigate uniquely painful terrain. Older LGBTQ+ adults may fear discrimination from care teams, or they may be estranged from biological families and left without legal next of kin. One trans patient I worked with asked us not to tell the facility staff her chosen name or pronouns. “It’s safer if I let them think I’m just a sick old man,” she said. She died quietly, misgendered, and erased.

And then there are people with disabilities, many of whom face implicit bias in medical settings that treat their lives as somehow less valuable. I’ve seen patients labeled “non-compliant” simply because they had difficulty communicating, or whose needs were deemed “too complex” to accommodate. Hospice, like all health care, is supposed to adapt to the patient. Too often, it’s the patient who is forced to adapt — or be left out entirely.

All of this is compounded by systemic issues: insurance coverage that doesn’t extend to creative or nontraditional hospice solutions, understaffed agencies reluctant to take on “complicated” cases, and a workforce burned out by bureaucracy and underfunding. Even the hospice benefit under Medicare — a system once praised as a humane model of end-of-life care — wasn’t designed with equity in mind. It assumes a patient has a home, a support network, and a primary caregiver. Those who don’t? They fall through the cracks.

And yet, I’ve also seen extraordinary acts of care — often outside the formal system. Street medics providing pain relief to unhoused neighbors. Volunteers sitting vigil in jail infirmaries. Community activists organizing trans-friendly hospice teams. These are the people who understand that hospice is not just a service; it’s a moral obligation. They fill the gaps not with money, but with presence. With radical compassion.

The truth is, hospice care cannot achieve its mission unless it actively addresses the inequities built into the structures around it. We need hospice programs that go to the streets, into shelters, behind bars. We need training rooted in cultural humility, in antiracism, in trauma-informed care. We need to reimagine what it means to offer dignity to someone whose life has been defined by abandonment.

That work won’t come from quarterly board meetings or compliance audits. It will come from listening — really listening — to those most affected. It will come from rethinking how we define “home,” “caregiver,” and “worthy.” It will come from a shift in focus: from profits to people, from efficiency to empathy, from “standard of care” to standard of justice.

I’m currently working on a book called “Terminal Justice.” That’s not just a title. It’s a call to confront the moral failing at the heart of American hospice care: that the people who suffer most in life are often denied dignity in death. If we want to build a better system, we have to start there — with the people no one sees, and the endings no one talks about.

Because dying is universal. But justice, even at the end of life, is still not.

Christopher M. Smith, R.N., is a hospice care advocate and writer dedicated to exploring equity, compassion, and inclusion in end-of-life care.