American medicine has a peculiar definition of generosity. We will spend enormous sums treating a seriously ill older person: an ambulance, an emergency-room visit, scans, intravenous medications, surgery, and days in hospital. We may then pay to send a profoundly frail patient to a skilled-nursing facility for “rehabilitation.”
But suppose what that patient really needs is someone to help her out of bed, make breakfast, and keep her safe at home. Suddenly, one of the world’s most expensive health care systems can become remarkably stingy.
America spends more than $5 trillion a year on health care. Yet the way we spend that money can create a troubling gap between the patient-centered medicine we profess and the care we actually finance.
For years, doctors have been taught to ask patients, “What matters to you?” We encourage advance directives, shared decision-making, and conversations about goals of care. The idea is simple: Good medicine should help patients preserve the life they value. But what happens when a patient tells us exactly what matters to her and the system cannot provide it?
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One of my patients was an eighty-four-year-old I will call Eleanor. She lived alone in the house where she had raised her children. She had mild cognitive impairment and osteoporosis, but she still cooked, managed her routine, and drove short distances. Her world had grown smaller with age, but it was still recognizably hers.
Then an infection left her confused. She fell and fractured her hip.
The operation went well. The infection improved. Eleanor did not.
After several days in hospital, she was weaker and more confused. Her experience is common. Roughly one in three older adults develops functional disability associated with an acute hospitalization. For someone with little physiological reserve, illness, delirium, and days of immobility can take away independence even as doctors successfully treat the condition that brought her to hospital.
Eleanor’s hip was repaired. But she could no longer safely go home alone.
Her daughter worked and could not provide round-the-clock supervision. Eleanor did not need another scan or procedure. She needed something far more ordinary: someone to help her bathe and dress, prepare a meal, and get safely to the bathroom.
Here the economics become peculiar. Traditional Medicare covers hospital care, procedures, and, under certain conditions, rehabilitation in a skilled-nursing facility. It also covers some home-health services. But Medicare is not comprehensive long-term care insurance. It generally does not pay for the sustained custodial assistance many frail older people need to remain safely at home.
Eleanor qualified for rehabilitation. Medicare would pay for it. So she went.
No one had ignored her wishes. Her daughter knew what she wanted. Her doctors did too. The problem was that the care Eleanor wanted was not financially feasible, while the care available to her was shaped by what Medicare would cover.
This problem has been described before. In 2019, geriatricians writing in the Journal of the American Geriatrics Society called it “rehabbed to death”: seriously ill older adults moving from hospital to post-acute care and sometimes back to hospital during the final phase of life.
Rehabilitation itself is not the problem. For an older person who can regain function, it can restore independence and make returning home possible. The concern arises when rehabilitation becomes the available destination for a patient whose needs are increasingly custodial rather than rehabilitative.
Eleanor became ill again in the facility. She developed pneumonia. An ambulance took her to the emergency department. She had laboratory tests and imaging, received intravenous antibiotics, and was admitted to another hospital bed. After several days she returned to a facility, weaker than before.
Each part of that episode may be medically appropriate. Each can also be financed. Yet the several hours of daily assistance that might have helped Eleanor remain at home may still be largely her family’s responsibility.
Home care is not always less expensive. Someone who needs round-the-clock paid assistance can face enormous costs at home. But many frail older adults need something less intensive: several hours of help with bathing, dressing, meals, medications, or simply getting safely through the day.
For some patients, that support may cost less than repeated institutional care. More important, it may make possible the life they have told us they want. Yet financing for such assistance remains limited, leaving families to fill the gap or pay privately.
A hospital admission that returns someone to a life she values may be worth every penny. Rehabilitation can restore function and independence. Doctors also cannot reliably predict who will recover.
Eleanor’s experience exposes a different problem. After her hospitalization, she needed practical help with daily life. Without it, returning home was unsafe. Medicare could cover rehabilitation in a skilled-nursing facility, but the sustained assistance she needed at home was largely outside its traditional benefits. For Eleanor, that difference determined what choices were actually available.
An advance directive cannot put an aide in Eleanor’s home. A goals-of-care conversation cannot provide several hours of help each morning. Shared decision-making has limits when the choice a patient most wants is beyond her reach.
We have spent years teaching doctors to ask patients, “What matters to you?” It is the right question, and one I have asked many times.
But listening to the answer is only the beginning. For Eleanor, what mattered was not another medical intervention. It was the ordinary life she had built over decades: her own kitchen, her familiar rooms, the small routines that still belonged to her.
A health care system should be able to recognize the value of preserving that life before frailty takes the choice away.
Raya Elfadel Kheirbek is a geriatrician, palliative medicine physician, physician-writer, and professor of medicine at the University of Maryland School of Medicine in Baltimore, where she is the inaugural chief of the Division of Gerontology, Geriatrics, and Palliative Medicine and program director of the Geriatric Medicine Fellowship. She is also affiliated with the University of Maryland Medical Center.
Her clinical and scholarly work focuses on serious illness, aging, communication and decision making, and person-centered models of care. Her research has been supported by the Patient-Centered Outcomes Research Institute, the Department of Veterans Affairs, and the University of Maryland Institute for Clinical and Translational Research, and her peer-reviewed publications are indexed on Web of Science.
As a physician-writer, Dr. Kheirbek writes at the intersection of medicine and the human experience, exploring aging, serious illness, caregiving, grief, and the end of life. Her work brings the voices of patients and families into conversations about what medicine can do, what it should do, and what matters most. She shares updates on LinkedIn and X.
