Finding Palliative Care

THE PALLIATIVE LENS

Seeing serious illness care more clearly

By Andrew Esch, MD

The Palliative Lens

2/3/2026

I want you to try something uncomfortable.

Imagine you’re the patient.

Not your “patient.” You. Your name. Your body. Your fear. Your spouse trying to keep it together in the passenger seat. Your symptoms are stacking up, your sleep is gone, and the oncologist (or cardiologist, or pulmonologist) says the words we all know: “We can keep treating, but this is getting harder.”

Now open the GetPalliativeCare Program Finder and do the thing we tell families to do: type in your zip code or address and search for Home or Office/Clinic care.

Pause on what comes back.

Not whether something shows, it will. The harder question is: Is any of it real for you? Real meaning: will they answer the phone, take your insurance, see you before you’re in crisis, come to your home if you can’t travel, help with symptoms and coping and caregiver strain, and stick with you through the hard turns, not just the consult note.

Because here’s the truth we don’t say out loud often enough: access to community palliative care in the U.S. is still thin, patchy, and frequently aspirational. Hospitals have made real gains, palliative care has become a standard feature in many larger hospitals, but for the person who is suffering at home, or trying to avoid the next ED visit, the map can look like a blank space.

Even the public tools we rely on reveal the gap. The Provider Directory exists to help people find palliative care across settings, hospital, home, nursing home, clinic, but it is also explicitly self-reported: it “includes all programs that have listed themselves.” That means the directory doesn’t just show the landscape. It shows who has the time, staffing, and stability to raise their hand and say: we’re here.

And as of the directory’s 2023 expansion announcement, it contained information on 350+ programs, with new ones being added. In a country this big, with this much serious illness, that number should land like a gut punch, not because it’s “wrong,” but because it exposes how early we still are in building true community access.

We can quantify the broader reality in other ways. CAPC’s Serious Illness Scorecard, which looks at workforce, payment, awareness/access structures, clinician education, and caregiver/functional supports, found that no state has achieved five stars, and many states score low, meaning every region has significant room to improve capacity. That’s the systems-level view. At street level, it looks like this: a family googling at 2 a.m., a clinic referral bouncing, a months-long wait, a “we don’t do home visits,” a program that exists on paper but not in practice.

And globally, the mismatch between need and receipt is stark: the WHO has estimated that only a minority of people who need palliative care actually receive it. The U.S. is not immune to the same dynamic, especially once you leave the hospital walls. So here’s my challenge to you, especially if you’re a clinician, leader, educator, or builder in this space:

Do the “zip code test.”

1.     Pretend you are a patient who cannot travel easily.

2.     Use the directory and search Home and Office/Clinic in your own zip code.

3.     Look at what comes back and ask, brutally:

o   Would this program be accessible to me if I were sick, exhausted, and scared?

o   Would it be accessible to my neighbor who doesn’t have a concierge primary care doc?

o   Would it be accessible to someone with Medicaid? Someone rural? Someone without family nearby?

Now do the second part, the part we almost never do:

Reality-check the results.

Pick one listing and verify whether it’s meaningful care or a ghost.

·       Does the phone number work?

·       Is there a clear referral pathway?

·       Is there a real interdisciplinary team (or is it one heroic clinician holding a brittle service together)?

·       What is the time-to-first-visit?

·       Is it longitudinal, or “one-and-done”?

This isn’t cynicism. It’s accountability. Because we can’t build what we refuse to measure, and we can’t advocate for what we can’t honestly describe.

Which brings me to the call to arms.

If you run a community palliative care program, self-report your reality publicly.

The directory is only as good as the data we feed it. Listing is free and open to all U.S. palliative care programs, and programs can claim and update their listings.

But “being listed” isn’t the goal. The goal is truthful, usable information, the kind that helps a real human being find care before they break.

So I’m asking you to do more than marketing. I’m asking you to contribute to an honest map.

When you list or update, include what patients and referring clinicians actually need to know:

·       What settings you truly serve (home, clinic, nursing facility, hospital)

·       Who is eligible (diagnosis? geography? payer?)

·       How referrals work (fax? portal? phone? warm handoff?)

·       Typical time to first contact / first visit

·       Whether you provide after-hours support or crisis response

·       Who is on the team (and what you can reliably provide, not what you aspire to provide)

And if your program is struggling, say that, too. Thin staffing, limited geography, limited payer access, those aren’t moral failures. They’re signals. They’re the evidence we need to push for payment reform, workforce investment, and system redesign.

Because here’s the alternative: we keep telling families “palliative care can help,” and then we hand them a search tool that returns either nothing, or something that looks like help but evaporates on contact. That gap between promise and reality is where trust goes to die.

The Palliative Lens is a place to say the quiet part out loud: community palliative care is still not reliably available in America, and we need to stop acting like it is. We need better access, yes, but we also need better honesty about what exists today.

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