Hospice Caregiver Burden and the Systematic Delegitimization of Care

Hospice prides itself on dignity at the end of life. But what about dignity for those doing the hardest work—unpaid caregivers? If Bogotá can build care blocks to fight “time poverty,” why are we still pretending that family labor is limitless and free?

For those of you in palliative care, how many families have you (gently, no doubt) disappointed this week by describing the wonderful things hospice can do as a way of correcting what families were hoping it would do?

Bogotá’s manzanas del cuidado, profiled in Rachel Cohen Booth’s recent Vox article, are a radical experiment in taking unpaid caregiving seriously. They recognize the crushing weight of “time poverty” and respond with infrastructure: neighborhood hubs offering laundry, legal aid, mental health services, and child or elder care on-site. The premise is simple but revolutionary—caregivers deserve a life beyond caregiving.

Contrast that with the U.S. hospice model. Here, unpaid caregiving is treated as an infinite resource. Families—most often women and increasingly found family—are expected to absorb complex clinical tasks without training, without respite, and without compensation. Medicare’s hospice benefit offers a token five-day inpatient respite, only in certified facilities, and only when the caregiver is already at a breaking point. That’s not support; that’s crisis management.

This is what systematic delegitimization of the care economy looks like: assuming care labor is elastic, invisible, and free. It’s why caregiver health outcomes are worse across nearly every metric. It’s why LGBTQ+ caregivers fight for recognition as “family.” It’s why the economic value of unpaid care—north of $600 billion annually in the U.S.—remains absent from policy debates.

Bogotá’s model rests on three principles: recognize, redistribute, reduce. Hospice could learn from that. Recognize caregivers as second patients. Redistribute tasks through micro-respite, telehealth coaching, and community partnerships. Reduce burden by monitoring for time poverty and integrating practical supports—transport vouchers, laundry pickup, day programs—into the care plan.

And here’s the next step: cross-party collaboration among hospices, counties, caregiving networks, community organizations, and patient advocacy groups to stand up care hubs near safety-net hospitals. These hubs should co-locate legal aid, benefits navigation, laundry services, and day supports for kids, elders, and disabled care recipients, plus caregiver wellness classes. For rural and low-resource neighborhoods, deploy buses and mobile teams—mirroring Bogotá’s mobile and at-home assistance—to bring these services where caregivers live.

Until we stop treating unpaid caregiving as a moral duty rather than an economic and public health issue, we will keep burning out the very people who make hospice possible. The care economy isn’t a side story; it’s the infrastructure of life and death. Ignoring it is not just unjust—it’s clinically unsafe.

Call to Action

If Bogotá can legislate care blocks into existence, what’s our excuse? It’s time for hospice leaders to demand policy reform: flexible respite, caregiver training, integrated supports, and care hubs. Stop managing crises—start valuing care as infrastructure.

• If hospice care claims to honor dignity, why do we ignore the dignity of those providing unpaid labor that sustains it?
• What would happen if we treated caregiver time as infrastructure—would our funding priorities look the same?
• How do we operationalize a caregiver-first design?