Critical care depends on caregivers—it’s time to take action

Family caregivers have become the most invisible and indispensable workforce in the country’s critical illness care. They administer medications, coordinate appointments, advocate during medical crises, and perform complex clinical tasks once reserved for highly trained professionals. Yet our health system still treats them as incidental, even though the system now relies on them to function. This imbalance creates structural failures that cause avoidable suffering, exacerbate caregiver burnout, and drive up costs. If we want a model of critical illness care that works, caregivers must be recognized and supported as integral members of the care team rather than peripheral outsiders.

The extent of the problem is finally becoming clearer. New research from the Coalition for the Transformation of Advanced Care (C-TAC) and the National Alliance for Caregiving (NAC) shows that there are now more than 63 million caregivers in the United States, or nearly one in four adults, an increase of 45% over the past decade. Most of them provide medical and nursing support but no training, guidance, breaks, or even involvement in clinical communication. Many are juggling employment, childcare and increasing financial pressures. This paradox cannot be ignored: caregivers are doing more and taking higher risks than ever before, yet they remain outside the formal structures of care delivery.

This disconnect has ramifications far beyond the home. In critical care, caregivers are often the deciding factor in whether a patient remains stable, avoids an emergency room visit, or recovers from a hospitalization. When caregivers lack support, patients pay the price and the system absorbs the costs. When caregivers are trained, supported and connected, outcomes improve. The data linking caregiver readiness to avoidable utilization is clear, and it points to a reality that health system leaders can no longer ignore. At a time when clinicians are overworked and labor shortages are growing, excluding nursing staff is not only short-sighted, it is also self-defeating from a quality and financial perspective. Any system focused on reducing preventable hospitalizations, improving transitions of care, and managing the total cost of care cannot do so without neglecting the people who bear the majority of daily care.

Policy has begun to acknowledge this, but only in a narrow way. The CMS GUIDE model requires caregiver support for dementia, which is an important first step in recognizing the value caregivers provide. It suggests that training, rest and inclusion can be considered core elements of care rather than optional add-ons. But limiting these protections to dementia doesn’t reflect reality. Families living with heart failure, COPD, cancer and other serious illnesses face the same burdens and risks when they go without support. Care should not be a privilege for specific conditions. It is among the basic expectations of serious illness care.

C-TAC and NAC's white paper sets out a compelling path forward: redefine caregivers as critical partners in care, ensure they have access to training and support, and update payment structures to reflect their role. Doing so requires policy implementation, not just endorsement. Medicare Advantage supplemental benefits, CPT codes that reimburse caregiver training costs, expanded respite services, and shared savings incentives tied to caregiver participation will all make the system more consistent. We already reward readmission reduction and care coordination efforts; extending the same logic to caregiver integration is both consistent and long overdue.

Health systems and payers also have a clear financial stake in solving this problem. In value-based arrangements, where profits depend on avoiding hospitalizations, smoothing transitions, and improving family quality of life, caregivers are effectively part of the workforce. But today, they are treated as invisible and unsupported variables. This approach would be unthinkable in any other field of healthcare. No health system will rely on an untrained, unpaid, unconnected workforce to manage infection control, medication reconciliation, or identify early clinical deterioration. Yet when it comes to critical care, our health systems do exactly that and we are surprised when the system collapses under the pressure.

We don’t lack models for better ways. When caregivers are actively supported, trained, and involved in decision-making, symptoms can be better controlled, patient stability improved, crises reduced, and care goals achieved more clearly. All of this improves the patient experience and reduces the total cost of care; it’s a win-win for everyone. Most caregivers are very competent and conscientious. They do not need to and cannot be replaced; they just need to be equipped and empowered. Their success is the success of the system.

But scaling this up across the country will require a shift in thinking. The question is not whether caregivers matter. The question is whether we will create a system that recognizes their role in public, or continue to rely on them covertly. The former brings responsibility, support and shared results. The latter can lead to burnout, avoidable utilization, and rising costs that payers or health systems cannot afford.

Nursing staff are the backbone of critical care, but they cannot shoulder the system alone. We have reached a point where not supporting them is tantamount to failing the patient. Policy ideas are on the table. The evidence is clear. The financial incentives are aligned. What remains is the will to bring caregivers from the margins into a sustainable serious illness care model—one that supports them by design rather than by default.

Photo: goc, Getty Images

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