Family caregivers have become the country’s most invisible and indispensable workforce in serious illness care. They manage medications, coordinate appointments, advocate during medical crises, and perform complex clinical tasks once reserved for trained professionals. Yet our health system continues to treat them as incidental, even though the system now relies on them to function. This misalignment has created a structural failure, one that is driving avoidable suffering, worsening caregiver burnout, and increasing costs. If we want a serious illness care model that works, caregivers must be recognized and supported as indispensible members of the care team, not as outsiders at the periphery.
The scale of the issue has finally come into sharper view. New research from the Coalition to Transform Advanced Care (C-TAC) and the National Alliance for Caregiving (NAC) shows there are now more than 63 million caregivers in the U.S. This is nearly one in four adults, a 45 percent increase in the last decade. A majority of them are providing medical and nursing support without training, guidance, respite, or even inclusion in clinical communication. Many are simultaneously juggling employment, childcare, and mounting financial strain. The contradiction is impossible to ignore: caregivers are doing more than ever, at higher stakes than ever, yet they continue to remain outside the formal structure of care delivery.
This disconnect has consequences that ripple far beyond the home. In serious illness care, caregivers are often the determining factor in whether a patient can remain stable, avoid an emergency department visit, or recover after a hospitalization. When caregivers lack support, patients pay the price and the system absorbs the cost. When caregivers are trained, supported, and connected, outcomes improve. The data linking caregiver readiness to avoidable utilization is well established, and it points to a reality that health system leaders can no longer overlook. At a time when clinicians are overextended and workforce shortages continue to deepen, excluding caregivers is not only shortsighted, it is self-defeating from a quality and financial perspective. Any system focused on reducing preventable hospitalizations, improving transitions of care, and managing total cost of care cannot do so while ignoring the people performing the bulk of daily care.
Policy has begun to acknowledge this, but only in narrow ways. The CMS GUIDE model, which requires caregiver support for dementia, is an important initial step in acknowledging the value caregivers provide. It demonstrates that training, respite, and inclusion can be treated as core elements of care, not optional add-ons. But limiting these protections to dementia alone fails to reflect reality. Families navigating heart failure, COPD, cancer, and other serious illnesses face the same burdens and the same risks when they are unsupported. Caregiving should not be a condition-specific privilege. It belongs as a foundational expectation across serious illness care.
The white paper from C-TAC and NAC puts forward a compelling path: redefine caregivers as essential partners in care, ensure they have access to training and support, and update payment structures to reflect their role. Doing so would require policy follow-through, not just acknowledgment. Medicare Advantage supplemental benefits, CPT codes that reimburse caregiver training, expanded respite services, and shared-savings incentives tied to caregiver engagement would all move the system closer to alignment. We already reward hospital readmission reductions and care coordination efforts; extending that same logic to caregiver integration is both consistent and overdue.
Health systems and payers also have a clear financial stake in solving this. In value-based arrangements, where margins depend on avoided hospitalizations, smooth transitions, and improving quality of life at home, the caregiver is effectively part of the workforce. But today, they are treated as an unseen and unsupported variable. That approach would be unthinkable in any other domain of healthcare operations. No health system would rely on an untrained, unpaid, unconnected workforce to manage infection control, medication reconciliation, or identifying early clinical deterioration. Yet in serious illness care, our health system does exactly that, and we are surprised when the system cracks under the strain.
We don’t lack models for a better approach. When caregivers are proactively supported, trained, and included in decision-making it leads to better symptom control, greater patient stability, fewer crises, and clearer alignment on goals of care. All of which results in improved patient experience and reduced total costs of care; it’s a win-win for everyone. Most caregivers are highly capable and deeply committed. They don’t need to be replaced, nor could they be; they simply need to be equipped and empowered. Their success is the system’s success.
But scaling this nationally will require a shift in mindset. The question is not whether caregivers matter. The question is whether we will build a system that acknowledges their role in the open or continue relying on them in the shadows. The former leads to accountability, support, and shared outcomes. The latter leads to burnout, avoidable utilization, and rising costs that no payer or health system can afford to absorb.
Caregivers are a backbone of serious illness care, but they cannot carry the system alone. We have reached a point where failing to support them is indistinguishable from failing patients. The policy ideas are on the table. The evidence is clear. The economic incentives are aligned. What remains is the will to bring caregivers from the margins into a sustainable model of serious illness care — one that supports them by design, not by default.
Photo: goc, Getty Images
Mihir Kamdar, MD is a national leader in palliative care, has held pivotal roles at Massachusetts General Hospital, including Section Chief of Palliative Care and Assistant Medical Director of MGH Telehealth. He serves on the teaching faculty of Harvard Medical School. As Head of Clinical Delivery, Dr. Kamdar brings leading-edge clinical research and expertise to Tuesday Health’s innovative, evidence-based model of supportive care.
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