Moreover, “true recovery rates — getting back to thinking clearly and functioning well — may be lower,” Dr. Makam said.
In fact, despite the prevalence of aggressive, life-prolonging procedures like feeding tubes, ventilators and dialysis, L.T.C.H. patients spent two-thirds of their remaining lives (the median survival period was 8.3 months) in institutions, including hospitals, skilled nursing homes and rehab facilities.
“A little over a third of people never make it home,” Dr. Makam said. “They go back and forth between the L.T.C.H. and hospitals and nursing facilities, and they die in one of them.”
Younger patients in their 60s and those admitted with musculoskeletal diagnoses, like complications from a hip fracture or joint replacement, fared better. But 41 percent of this population was 80 or older, and “the older old do exceptionally poorly,” Dr. Makam said.
A few years back, Dr. Daniela Lamas, a critical care specialist at Brigham and Women’s Hospital in Boston, found herself wondering about what she calls “this afterworld,” one she knew little about.
At an L.T.C.H., she interviewed 50 patients, with an average age of 63, who had undergone tracheostomies, or family surrogates (when patients couldn’t communicate), asking not-very-medical questions about goals, fears and understandings.
Patients described their quality of life as poor, complaining of hunger, thirst, difficulty communicating. “People were bored,” Dr. Lamas said. “They couldn’t move. There was a deeper sense of being alone, feeling trapped.” Their families felt anxious and stressed.