Carol Levine began a roiling odyssey as a caregiver when a car accident left her husband paralyzed and in need of 24-hour care. She regards her husband’s survival as “a testament to one of American medicine's major successes — saving the lives of trauma patients.” But once he returned to their home, Levine encountered a healthcare system that was fragmented, chaotic, and inequitable. Unprepared to address chronic care, it remained oblivious to her needs as her husband’s primary medical “provider,” as they would say. Written nine years after the accident and eight years into her care giving, Levine’s essay recounts the stress and isolation she experienced attempting to navigate that system, to perform unrelenting chores, and to sustain her employment. Her job was, after all, the source of her husband’s managed care insurance, which regularly managed to leave Levine with unpaid bills. Even her work in medical ethics and healthcare policy could not help her locate the assistance she needed to assure the well being of her husband or herself.  Or of other care-giving families.


Powerful and eloquent, reasoned and passionate, “The Loneliness of the Long-Term Care Giver,” first published in 1999, remains a classic essay about the experience of intimate caregiving. Levine sketches enough details for readers to understand her justifiable exasperation for being at once indispensible to the medical system and disregarded by it. But she opens up her personal experience so that we can examine the ethical, policy, and structural questions that familial caregiving raises. Too frequently medical and social systems regard home care as a private matter, however unfortunate. Levine acknowledges that families have a moral responsibility to care for intimates and that many family members cherish the chance to bestow such care. But she asks what the limit of a family’s responsibility should be and what society’s responsibility to families is.

She also questions the typical practice of physicians, nurses, and others to automatically assign responsibility to a spouse or other intimate for performing endless, often delicate or difficult medical tasks, managing increasingly sophisticated medical equipment, and taking on chores beyond their capacities, energy, or time. After all, many caregivers are frail. Many have still others to care for. Most have work and commitments that sustain their lives. Levine provocatively notes that no process of informed consent exists for family caregivers whose labor is pressed into service.

Levine calls for "a coherent long-term policy" for family-based care, which still eludes us. She also wisely recommends that the education of medical staff and social workers include instruction in the needs of family caregivers. She advises observing the work they do in their homes and helping them make the system work.

I include “The Loneliness of the Long-Term Care Giver” in my classes on narrating medical experience and in my ethics teaching. Levine’s essay was especially revelatory during an ethics rounds I led for a hospital chaplaincy service. The piece is short enough for busy staff to read before a meeting. It also provokes discussion when we take turns reading generous swatches of it aloud. Either way, the essay teaches us to listen to a voice all too easily ignored in medical systems and social policies.

Primary Source

NEJM (May 20, 1999) 340(20):1587-1590


New England Journal of Medicine

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