Families of patients dying of cancer felt their loved one had better care and quality of life when they died in a hospice rather than in a hospital’s intensive care unit, a new study reveals.
Relatives reported a better end-of-life experience more often when their loved one received hospice care for more than three days (59 percent) than those who received hospice care for three or fewer days (43 percent). Moreover, only 45 percent of families reported excellent care when the patient was admitted to a hospital intensive care unit (ICU) within 30 days of dying, the researchers found.
“Our findings are a powerful argument for the importance of advance care planning,” said lead researcher Dr. Alexi Wright, an associate professor of medicine at Harvard Medical School in Boston.
How and where people die strongly shapes patients’ dying experience and how family members remember it, she said.
“In this study we found that patients’ preferences influenced the care that they received. Now we need to ensure that patients and their family members have the information they need to make choices about their end-of-life experiences and plan for it,” Wright said.
The report was published Jan. 19 in the Journal of the American Medical Association, a special themed issue on end-of-life care.
For the study, Wright and her colleagues collected data on more than 1,100 cancer patients. The investigators used data from interviews with family members of Medicare patients with advanced lung or colon cancer from a study of patients who died by the end of 2011.
The researchers also found that only 42 percent of families of patients who died in the hospital said their loved one had excellent end-of-life care, compared with 57 percent of families whose loved ones died at home or in a hospice.
In addition, family members of patients who did not receive hospice care or received three or fewer days of hospice care were less likely to report the patient died in their preferred location (40 percent) than those who received hospice care for more than three days (73 percent).
“Efforts to increase earlier hospice enrollment and avoid ICU admissions and hospital deaths are important areas to focus on to improve the quality of end-of-life care,” Wright said.
Dr. R. Sean Morrison is president of the American Academy of Hospice and Palliative Medicine and director of the National Palliative Care Research Center. He suggested that “patients who have access to hospice care have a better quality of death and a more peaceful death than patients in hospitals.”
One reason is that hospice care takes into account patients’ values and goals and matches treatment accordingly, explained Morrison, who is also vice chair of research in the Brookdale department of geriatrics and palliative medicine at Mount Sinai School of Medicine in New York City. “Hospice also provides an added layer of support to the family,” he said.
In addition, hospice provides home care for patients who prefer to die at home, Morrison said.
That so many family members report a poor quality of death for their loved ones “should be a wake-up call,” he said.
“If 50 percent of Americans said they were unhappy with their hip replacement, that would be a national outrage,” Morrison added. “The same should be said of the care of people at the end of life — we have to be able to do better.”
Hospice care is available to most patients and most hospitals have palliative care teams, said Dr. Joan Teno, a professor of medicine at the University of Washington in Seattle.
“Now we have to focus on changing physician behavior to improve quality of care,” she said. At the end of life, doctors need to take patients’ values and goals into account, Teno said.
In her recent study, Teno found that only one in five family members of someone who died in an ICU said that care was consistent with their preferences. “Care that is not consistent with your preferences is a sign that the health care system is breaking down. We really have to align care with preferences,” she said.
Moreover, hospice care needs to start earlier, not just in the last three days before dying, Teno said.
“We have to start paying doctors not for procedures in the ICU, but for quality,” Teno said. “The key is — were patients informed about their prognosis, their treatment options, and was the care consistent with their goals and values?”
Visit the National Hospice and Palliative Care Organization for more on end-of-life care.