There’s no fate worse than death. At least that’s the philosophy that dominates Western medicine and hospital care. But a survey by Emily Rubin, a fellow in pulmonary and critical care medicine at the Hospital of the University of Pennsylvania, suggests that patients with serious illnesses don’t necessarily see it that way.
In a research letter published in JAMA Internal Medicine in August, Rubin and three Penn colleagues reported the results of structured interviews with 180 inpatients. The subjects were 60 years or older with advanced solid malignant neoplasms, hematologic malignant conditions, class III or IV congestive heart failure, or severe obstructive or restrictive lung disease. Though their responses varied considerably, slightly more than half considered bowel and bladder incontinence worse than death, and a similar majority preferred death to reliance on a breathing machine. Inability to get out of bed, persistent confusion, reliance on a feeding tube, and needing care from others all the time were deemed either worse or no better than death by a majority of the participants, none of whom “had limitations on any life-sustaining treatment documented in their electronic medical records.”
Though the study’s small size limits its potential for drawing generalizations, the researchers framed it as a reminder that patient preferences can diverge from standard medical goals and measures of care quality. “[T]he fact that hospitalized patients with a broad range of serious illnesses so often viewed commonly encountered health states as worse than death,” they wrote, “should challenge researchers of patient-centered outcomes and those who develop quality measures to formulate and use new metrics such as the avoidance of states worse than death.”