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Reuters/Lee Celano
A lack of control of your body may be worse.
PERCEPTION

Four things dying people agree are as bad as or worse than death

By Katherine Ellen Foley

From an outside perspective, death may seem like the worst possible outcome for patients who are sick. Those actually suffering from terminal illnesses, however, see things a little differently.

Researchers surveyed 180 patients admitted to a Pennsylvania hospital from July 2015 to March 2016 for severe conditions ranging from malignant cancer to advanced heart failure and obstructive lung disease. They asked the patients to compare their feeling towards dying with the potential of living with various limitations like needing a feeding tube or full-time care, living with constant confusion, or being in constant, moderate pain, to dying. The patients agreed that certain conditions would make living as bad or worse than death. The results were published (paywall) in JAMA Internal Medicine.

Almost 70% of the patients surveyed said that the inability to control their bladder and/or bowels or reliance on a breathing tube was a fate as bad or worse than dying; more than 55% said the same about having to rely on a feeding tube. Almost half of patients said living with constant confusion would be worse than death.

The patients surveyed had not experienced any of the limitations themselves, and the study authors write that it’s certainly possible the patients are overestimating the difficulty of living with these challenges. In addition, the number of patients surveyed was relatively small and limited to a single hospital in Pennsylvania. Nevertheless, this work suggests that health care providers should check with patients about their own priorities before treatment.

Although severely ill patients may not want to die, they also may not want to prolong their lives any more if it means living with certain limitations. ”Studies of interventions in the hospital and specifically the intensive care unit…commonly ignore such preferences, assuming implicitly or explicitly that death is an outcome to be avoided no matter what the alternatives are,” the authors write.