Dying Without a Safety Net

Recently, I reviewed the case of a woman with advanced metastatic breast cancer – we’ll call her Helen. Like so many patients living with serious, life-limiting illness, she sought the best care available, still hoping for a cure. As one therapy after another failed, Helen cycled in and out of the hospital: complications from treatment, complications from the cancer itself, and each time the system responded the only way it knew how – rapid escalation, ICU stays, more procedures, more drugs. Finally, a palliative care team was consulted during her last hospitalization. After long family meetings, Helen was discharged to hospice and died days later.

Throughout that final year, Helen suffered. No one on her medical team had documented her wishes, preferences, or goals of care. No one had walked her through the trade-offs she faced with each treatment decision. The system did what it was designed to do, and it failed her completely.

As a physician and former national health plan leader, I have seen versions of Helen’s story play out hundreds of times. This is not a failure of compassion. It is a failure of design. Our healthcare system is built to pay for crises – not the care that prevents them or relieves the suffering that leads to them.

What palliative care is, and what it isn’t

Palliative care is a medical specialty focused on relieving the symptoms, pain, stress, and anxiety of serious illness, while ensuring care is consistent with a patient’s own wishes and values. At its heart, it is about quality of life. High-quality community palliative care teams are interdisciplinary: lead clinicians, behavioral health specialists, nurses, and spiritual counselors working together to address the whole person – body, mind, and soul.

Yet palliative care remains widely misunderstood – by patients, families, and medical professionals alike – as synonymous with hospice or end-of-life care. Hospice is designed for patients expected to live six months or less who have chosen to forgo curative treatment. But high-quality outpatient palliative care delivers enormous benefit to patients with a prognosis of six months or longer who are still pursuing active therapies. A palliative care team working alongside an oncologist, for example, can help a patient with metastatic cancer and bone pain achieve better pain control, avoid a hospitalization, and stay home, where most patients want to be.

At its core, palliative care is about ensuring care consistent with wishes: discussing trade-offs, eliciting preferences, and honoring beliefs. Physicians are trained, rightly, toward cure and treatment. But sometimes the most important clinical act is helping a patient understand that the next round of chemotherapy for a widely metastatic cancer may cause more suffering than benefit, and that choosing comfort over treatment is not giving up – it is a legitimate, dignified choice.

A system structured to miss the moment

Today, roughly 84% of U.S. hospitals with fifty or more beds have specialty palliative care services. But nearly all the capacity is hospital-based – consulted when a patient is already in crisis, often in their final weeks. Up to 50% of patients first seen by an inpatient palliative care team die during that same hospitalization.

In the community, the picture is far bleaker. Estimates suggest that only 14% of the approximately six million Americans with serious illness in their last one to two years of life have access to palliative care. The gap widens further in rural and underserved communities. People with serious illness represent a small share of the population but drive a disproportionate share of healthcare spending.

The workforce shortage compounds the access problem. The U.S. has roughly 7,600 board-certified palliative physicians, and nearly 14,500 healthcare professionals across all levels hold Hospice and Palliative Credentialing Center (HPCC) credentials, including nurses, social workers, nurse practitioners, and physician assistants. The vast majority practice in hospital settings, not in the community where the need is greatest.

A payment system that funds the wrong moment

The structural reason for this gap is straightforward: our payment system reliably reimburses high-cost acute care at the end of life, while systematically underfunding community-based palliative care that could prevent many of those crises in the first place.

Medicare lacks a comprehensive, community-based palliative care benefit. Only a handful of state Medicaid programs cover this care for individuals with illnesses such as cancer, end-stage COPD, or cirrhosis in their last year of life. Medicare and Medicaid pay for provider visits but inadequately cover the work of other team members – nurses, social workers, and chaplains – whose contributions are central to what makes palliative care effective. Employer-sponsored plans typically follow Medicare’s lead.

The measurement problem is just as corrosive. Payers track what happens: hospital admissions, procedures, ICU days. Palliative care’s most important outcomes are invisible in those metrics: the 9-1-1 call that didn’t happen, the emergency department visit that was defused at home, the pain crisis managed by a nurse over the phone at 2 a.m. Because these prevented events don’t generate a claim, they generate no credit.

The evidence is there, but the will is not

A recent report from the Coalition to Transform Advanced Care (C-TAC), “From Metrics to Momentum,” notes that health systems and payers increasingly recognize community-based palliative care as a core element of population health. Yet many leaders still struggle to justify investment in services that appear expensive and are delivered outside the hospital. Payers demand their own studies of effectiveness and savings before expanding beyond the pilot stage – a slow, fragmented process that leaves access gaps intact.

What a better model looks like

Fixing this requires deliberate design, rather than incremental tinkering. A community-based palliative care model that works looks like this:

• Community-based and interdisciplinary. Physicians, advanced practice providers, nurses, social workers, chaplains, and behavioral health professionals supporting patients and their families at home, not in hospitals or clinics.

• Technology-enabled. A “serious-illness operating system” that connects what matters (goals and preferences), what’s changing (clinical and social risk signals), and what to do next (a team capable of intervening quickly).

• Hybrid care delivery. Reaching patients wherever they live. Evidence from JAMA 2024 and JAMA Network 2024 confirms that in-person and telehealth-delivered palliative care are equally effective, making virtual access essential for rural and remote populations.

•  Redesigned benefits and payment. A dedicated community-based palliative care benefit that explicitly covers interdisciplinary teams, virtual access, caregiver support, and 24/7 crisis planning — paid through monthly fees or bundled payments, with bonuses tied to goal-concordant care, advance care planning completion, and avoidance of unnecessary ED and inpatient use.

Had Helen had access to a community palliative care team earlier in her illness, her final year might have looked very different – not in terms of outcome, but in terms of experience. She might have had honest conversations about her wishes. She might have spent more of that time at home, with her family, in less pain.

Living with serious illness is excruciating for patients and for the families who love them. Sometimes, despite the best intentions and the best that modern medicine offers, a patient’s deepest wishes go unfulfilled. When asked what palliative care offers, I answer this way: it adds life to days, even when it cannot add days to life.

As a country, we should be willing to pay for that.

Photo: twomeows, Getty Images

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