After my grandmother fell and fractured her cervical spine, she lived another four years thanks to incredible caregivers, family members, and my own home-based primary care practice, which I started because of her. Twelve million patients in the U.S. living with serious illness need, but cannot access, the palliative care that saved, extended, and improved my grandmother’s life.
The U.S. health care system is not set up to support patients with serious illnesses and their families and caregivers who are trying to navigate chronic care at home. It is optimized for episodes of care. We respond when something goes wrong. Whether it’s an acute event, a sudden decline, or a 911 call, we mobilize quickly, deploy significant resources, and deliver high-intensity care. We often discharge patients back into the same environment, with minimal, if any, ongoing support. What follows is a predictable cycle of worsening symptoms and growing confusion that leaves families and patients struggling to manage, due to a system poorly designed to optimize living with serious illness.
The data reflects this misalignment. A relatively small population of patients with serious illness accounts for a disproportionate share of health care spending. In fact, according to KFF, in 2022, the top 5 percent of people with the highest health spending accounted for half of total health spending, while the top 1 percent had average annual health expenditures exceeding $147,000. This is often driven by repeated utilization of acute care. At the same time, fewer than one in six individuals receive structured, ongoing support in the home or community setting during this phase of illness.
Palliative care can help to fill this gap.
Palliative care is about living better with serious illness. It is specialized medical care for people living with serious illness, focused on managing symptoms, supporting patients and families, and helping individuals make informed decisions that align with what matters most to them. It can and should be delivered alongside curative or life-prolonging treatment, often months or years before the final stage of illness.
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Patients need support making informed decisions over time, before a crisis. In today’s system, more treatment is often assumed to mean better care. But for many patients with advanced illness, additional interventions can bring more burden than benefit: more side effects, more hospital time, and less control over how they spend their days. High-quality palliative care changes that dynamic. It ensures patients and families understand the trade-offs, have space to reflect on what matters most, and can make decisions that align care with their goals, not just the next available intervention.
When this kind of support is in place, the trajectory changes. Symptoms are addressed earlier. Patients and families are better prepared. Crises are avoided or de-escalated. Care becomes more coordinated, more aligned, and more humane.
Importantly, this is not about reducing care. It is about delivering the right care at the right time.
Programs that focus on this phase of illness have consistently demonstrated improvements in quality of life, along with meaningful reductions in avoidable emergency department visits and hospitalizations. The outcomes are not surprising. In my experience, when patients have access to continuous, interdisciplinary support, they are less likely to reach a breaking point that requires acute intervention.
And yet, despite the evidence, access remains limited. The reason is structural. Our payment systems reward discrete events: visits, procedures, admissions. They do not adequately support the ongoing, team-based care that serious illness requires. Services that are essential in the middle, like care coordination, caregiver support, or after-hours access, are often underfunded or not funded at all. As a result, we continue to invest heavily in the most expensive moments of care, while we neglect the period where intervention could have the greatest impact.
If we are serious about improving outcomes and managing costs for people with complex, life-limiting conditions, payers and policymakers need to act. We need to be serious about funding community-based palliative care at scale through dedicated benefits, value-based payment models, and reimbursement for the full interdisciplinary team. We need a system that supports caring for patients with serious illness with an integrated interdisciplinary care team collaborating with community providers and connected to patients and families, and fully focused on avoiding that next hospitalization, while optimizing function and quality of living every day.
The palliative care my grandmother received, the care that inspired my practice and my advocacy, must not be an exception; it must be the standard. By bridging the gap in the middle of the health care journey, we move beyond reactive policy toward a system that honors the human experience. Ultimately, this work is about ensuring that every patient living with serious illness has the same support, dignity, and opportunity to live well that my grandmother did.
Jill Schwartz-Chevlin is a physician executive.
