Roughly half of the terminally ill patients in America die alone, in pain or hooked to a machine, according to a study published in today’s Journal of the American Medical Association.
Surprisingly, efforts to improve communication between patients, families and physicians to enable patients to die more comfortably had no effect.
The study presents a harsh portrait of how high-tech medical advances - and a culture that holds individual life precious - prolongs life while eroding its quality for dying patients.
The $28 million study of nearly 10,000 seriously ill patients at five leading medical centers found:
50 percent of patients able to communicate said they had moderate or severe pain half the time in their final days.
38 percent of terminal patients spent 10 or more days in a coma, attached to a ventilator or in intensive care where they were often isolated from their families.
31 percent of terminal patients spent all or most of their family’s savings in their dying days.
70 percent of the patients did not discuss with their physician whether they should be resuscitated while hospitalized.
46 percent of the orders not to resuscitate a dying patient were not written until two days or less before a patient died.
“This is not the picture of the end of life that I would want to face or that most Americans would want to face,” said Dr. Joanne Lynn, director of the George Washington University Center to Improve the Care of the Dying and a co-director of the study.
After a two-year study to determine the conditions under which terminally ill patients die, the authors conducted another two-year study - using a test group and a control group - to determine whether aggressive intervention by nurse advocates and efforts to enhance communication would affect those conditions.
It didn’t. Regardless of which group they were in, terminal patients spent the same amount of time in intensive care units, in comas, or hooked to artificial breathing machines before dying.
Costs of care remained the same, and patient complaints of being in pain actually increased for the group receiving enhanced communication.
“The results … shocked me,” said Dr. William Knaus, chairman of the Department of Health Evaluation Sciences at the University of Virginia School of Medicine and the study’s other co-director.
Lynn blamed the study’s failure to change care outcomes on the medical system’s concentration on treating illness and the public’s faith in medical miracles.
“We need to create measures to assess quality of care while dying and change financial incentives to promote better care while dying,” she said. “Everyone has a vision for living; our society also needs to create a vision for living well while dying.”
Part of the problem is that doctors are trained to make patients well, not comfort them as they die, said Dr. Alfred Connors Jr. of the Cleveland MetroHealth Medical Center, the study’s principal investigator.
“We live in a health care system focused on treating disease, and we do that very well, but we don’t know when to stop,” Connors said.