The Hidden Crisis in Serious Illness Care and How We Fix It

Every year, millions of Americans with serious illnesses find themselves caught in a dangerous limbo: not sick enough to qualify for hospice, but far too ill to be served by our traditional healthcare system. The result is care that’s expensive, fragmented, and often traumatic. These patients are shuffled between a revolving door of emergency rooms and ICUs, enduring a cascade of aggressive interventions that don’t match their goals or improve their quality of life. This approach not only undermines quality, it drives healthcare spending through the roof, particularly in the last year of life.

This is the hidden crisis in serious illness care. And it’s getting worse.

At the root of the problem is what many in the field call the “hospice cliff.” Medicare’s current system largely splits care into two paths: aggressive curative treatment or hospice for those with a prognosis of six months or less. But most patients don’t follow such a linear trajectory. Many live with complex, progressive conditions like heart failure, cancer, or COPD for years, conditions that lead to frequent hospitalizations, high symptom burden, and emotional stress for families. Yet these individuals often receive no specialized support until it’s too late.

The data is striking. Up to 25 percent of all Medicare spending occurs in the last year of life, much of it on services that offer little clinical benefit and often conflict with patients’ goals. Studies show that up to 70 percent of people say they would prefer to die at home, yet nearly half still die in hospitals or nursing homes. Late or entirely missed referrals to hospice and palliative care leave patients and families overwhelmed and underserved.

But this is a crisis we can solve. Innovative care models across the country are showing that early identification and proactive support for people with serious illness can lead to better outcomes. Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. When palliative care is introduced upstream, not just in the final days of life, but months or even 1-2 years earlier, it improves symptom control, reduces hospitalizations, and aligns care with patient goals. 

One challenge for health plans and health systems is correctly identifying seriously ill patients who can benefit from early integrated palliative care. Predictive analytics is one of the tools helping us do this better. By analyzing claims data, clinical notes, and patient risk factors (with caution to avoid biases), health systems and care teams can identify individuals most at risk of avoidable emergency visits or rapid decline. This allows for earlier intervention, whether that means initiating goals-of-care discussions, coordinating with primary care providers, or deploying community-based support teams. Crucially, it also creates space for advance care planning, giving patients and families time to articulate their preferences and make informed decisions before a crisis occurs. When done well, this process can reduce unwanted interventions, improve satisfaction, and relieve pressure on the healthcare system. When used thoughtfully, these data-driven approaches shift care from reactive to anticipatory.

The benefits go beyond the individual. When patients receive care that matches their goals, in the place they call home, with their symptoms managed and their caregivers supported, the burden on hospitals decreases. Emergency departments are freed up to focus on life-saving interventions instead of admitting terminally ill patients to the hospital for their last days. This matters even more in a time of acute staffing shortages, where hospitals and health systems are struggling to meet rising demand with limited clinical resources. Proactive, community-based care can ease workforce pressure while improving patient outcomes. Costs go down, and satisfaction goes up. This is the kind of value-based transformation our healthcare system urgently needs.

But for these models to scale, policy must catch up. Reimbursement systems still largely reward volume over value. Fee-for-service payments discourage time-intensive conversations about goals of care and disincentivize interdisciplinary team-based approaches. Many patients who would benefit from early palliative support cannot access it because of a paucity of palliative care specialists. With strong evidence that palliative care improves quality and lowers costs, the national shift toward value-based care offers a clearer path to expanding access than outdated fee-for-service models.

There are more signs of progress and ongoing headwinds. The CMS Innovation Center’s Value-Based Insurance Design (VBID) Model tested a hospice component that allowed for concurrent palliative and hospice care, aiming to address the “hospice cliff.” While that component was discontinued at the end of 2024 due to operational challenges, the push toward concurrent care continues. Several states are experimenting with Medicaid waivers that support concurrent palliative and curative services. But these efforts remain fragmented. We need a national strategy to expand access to palliative care, train the next generation of clinicians, and build the infrastructure that allows for scalable, tech-enabled, patient-centered delivery.

We also need cultural change within medicine and beyond. Too often, conversations about serious illness are delayed until there are no good choices left. Clinicians need more training, patients need more agency, and families need more support. Everyone deserves care that respects their values, honors their dignity, and eases suffering.

We have the tools. We have the evidence and data. We know what works. What’s missing is the will to act.

It’s time to build a system that doesn’t wait for a crisis to deliver compassionate, coordinated care. The future of serious illness care doesn’t have to be defined by high costs and poor outcomes; it can be defined by empathy and dignity, at a time when our patients and their families need it the most.

Photo: Fiordaliso, Getty Images

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