Survey asks seriously ill patients: ‘What’s worse than death?’

Bowel and bladder incontinence was described as equal to or worse than death by a majority of seriously ill patients participating in a survey published in JAMA.

Emily Rubin, MD, JD, a second year fellow in pulmonary and critical care medicine at the Hospital of the University of Pennsylvania, and her co-authors, surveyed 180 patients with conditions such as advanced cancer, congestive heart failure and severe obstructive or restrictive lung disease. They were asked to rate health states on a five-point scale of (5) worse than death, (4) neither better nor worse than death, (3) a little better than death, (2) somewhat better or (1) much better.

Several states were described by a majority of patients as either the same or worse than death: bowel and bladder incontinence (124, 68.9 percent), requiring a breathing tube to live (121, 67.2 percent) or requiring round-the-clock care (97, 53.9 percent).

On the other end of the spectrum, living in a wheelchair was described as much or somewhat better than death by more than 70 percent of participants.

“Hospitalized patients with serious and potentially life-limiting illnesses are at high risk for experiencing outcomes that many would consider to be worse than death,” Rubin and co-authors wrote. “Nonetheless, studies of interventions in the hospital and specifically the intensive care unit, as well as hospital quality measures, commonly ignore such preferences, assuming implicitly or explicitly that death is an outcome to be avoided no matter what the alternatives are. This assumption may create untoward incentives for clinicians or health care systems to provide care that results in states of severe functional debility that patients prefer to avoid, even if the alternative is death.”

There could be many explanations as to why seriously ill patients may receive life-prolonging care even once they’ve reached these feared states, Rubin said, including changing preferences or willingness to endure those states for the sake of family members. Some reasons, however, may be blamed on poor planning for end-of-life care by clinicians, such as being unaware of what the patient values or failing to discuss alternatives consistent with a patient’s priorities.

While the survey was limited to patients at a single hospital, Rubin said having a broad range of patients view certain health states as worse to or comparable to death should make researchers rethink their definition of patient-centered outcomes and perhaps inform new quality measures on avoiding those feared states.