What Happened to Hospice Care?

THE PALLIATIVE LENS

Seeing serious illness care more clearly

By Andrew Esch, MD

The Palliative Lens

2/4/2026

I have spent much of my career believing in hospice. I still do, at least in what hospice was meant to be. But believing in the idea of hospice is not the same as being willing to ignore what it has become. And what it has become, in too many places, is something that no longer earns the trust of the patients and families it claims to serve. That loss of trust did not happen overnight. It has been slow, structural, and largely self-inflicted.

When we talk about hospice utilization, especially among Black and Hispanic patients, we often default to shallow explanations: “cultural differences,” “family preferences,” “reluctance to give up hope.” These explanations are comforting to the system because they shift responsibility away from us. But they are wrong. Or at least profoundly incomplete.

Mistrust Is Not a Cultural Deficit

Patients and families have spent decades navigating a healthcare system that has marginalized them, under-served them, dismissed their symptoms, and failed to show up when it mattered.

Hospice, as it is currently structured, often reinforces that mistrust rather than alleviating it.

Enrollment requires patients to enter a benefit that restricts certain forms of care, replaces transparency with vague and inconsistent “coverage rules,” and promises interdisciplinary support that, in practice, may or may not materialize. Patients are told they will receive comprehensive, team-based, clinician-led care yet many go weeks or months without meaningful physician involvement. Decisions feel opaque. Coverage changes feel arbitrary. Accountability feels diffuse or nonexistent.

If you have already been poorly served by the healthcare system, why would you trust this version of it, especially when the stakes are highest? I have seen patients enrolled in hospice for prolonged periods with little to no physician presence. Not “light touch” presence. Not “virtual oversight.” No presence that the patient or family could identify as a doctor who knew them. When symptoms worsened, when plans changed, when families had questions, the response was often delayed, fragmented, or routed through layers of staff who themselves had limited authority.  For families who have learned through experience that systems promise more than they deliver, skepticism is not resistance. It is wisdom.

Hospice Has Drifted from Its Center

The uncomfortable truth is this: hospice did not lose trust because patients misunderstood it. Hospice lost trust because hospice changed. Over the last two decades, hospice has undergone aggressive corporatization. Consolidation, private equity investment, rapid geographic expansion, and relentless growth targets have reshaped the field. The language remained the same “compassion,” “dignity,” “team-based care” but the operational reality shifted beneath it.

In many organizations, the physician role has been minimized to reduce cost. Visits are rationed. Oversight is abstracted. Clinical decision-making is increasingly protocolized, with less room for nuance, judgment, or relationship. Hospice agencies market availability while quietly stretching clinicians thinner and thinner.

At the same time, hospice organizations have adopted practices that would have been unthinkable in earlier eras: non-disclosure agreements, non-compete clauses, and aggressive control over clinician movement.

We should ask ourselves honestly: what are we afraid of?

Are we afraid that if clinicians speak freely about what hospice actually looks like on the ground, patients will choose differently? Are we afraid that if clinicians are allowed to move, patients might follow them and see that the care they receive does not have to be this inconsistent, this thin, this transactional?

Non-competes do not protect quality. They protect market share. And when an industry begins to prioritize market share over moral authority, patients and families notice even if they cannot articulate it.

Becoming Everything and Ending Up Nothing

Hospice has also drifted by trying to be everything to everyone who is sick.

In the rush to grow, many hospice organizations have pushed “upstream” into serious illness care, palliative care, home-based primary care, hospital partnerships, ACO relationships often without the clinical infrastructure, talent or philosophical clarity to do any of them well. The hospice identity blurred. The boundaries softened. The promise diluted.

By attempting to capture every patient earlier, across every setting, under every payment model, hospice has often lost the very thing that once made it distinct: deep, reliable presence at the end of life.

Patients and families sense this. When care feels generic rather than relational, when clinicians rotate rather than commit, when systems feel optimized for census rather than people, trust erodes.

For Black and Hispanic patients who are already more likely to experience fragmented care, under-resourcing, and dismissal this erosion is amplified. Choosing hospice can feel less like choosing support and more like surrendering leverage in a system that has never reliably protected them.

Reclaiming Hospice’s Moral Core

If hospice is to regain credibility, particularly among communities that have every reason to doubt it, we must confront uncomfortable truths. We must re-center physician accountability, not as a billing checkbox, but as a relational anchor. We must abandon practices that silence clinicians and restrict transparency. We must be honest about what hospice does and does not provide, rather than hiding behind euphemisms and fine print.

And we must stop pretending that growth equals impact.

Hospice was never meant to be a volume business. It was meant to be a covenant: a promise that when cure is no longer possible, care will not become thinner, quieter, or more bureaucratic, but more present, more human, more accountable.

Until hospice recommits to that promise, skepticism, especially from Black and Hispanic patients, is not a problem to solve. It is a mirror we should be brave enough to look into.

Because by trying to be everything to everyone who is sick, hospice has too often become nothing to the people who need it most. And that is not a cultural failure. It is ours.

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