Patients and caregivers give poorer marks to end-of-life care in hospitals. (Mel Melcon / Los Angeles…)
Cancer patients who die at home with hospice services had a better quality of life in their final days compared to similar patients who died in the hospital or intensive care unit, according to a new study. Moreover, the family members of the patients fared worse psychologically if their loved ones died in a hospital or ICU compared to home.
The study, published Tuesday in the Journal of Clinical Oncology, suggests that experiences at the end of life are shaped by the setting. Hospital and ICU care may emphasize staying alive at all costs while hospice care emphasizes managing symptoms and comfort at the end of life. The study is also the first to show that caregivers of cancer patients who die in an ICU are at heightened risk for post-traumatic stress disorder.
The study, from researchers at the Dana-Farber Cancer Institute in Boston, followed 342 people with advanced cancer and their family caregivers for an average of four months. The patients' quality of life was assessed by their caregivers within two weeks of death. The caregivers answered questions about their own psychological distress at the time of death and six months later.
On a scale of 0 to 10 -- with 0 being the worst -- patients who died in the hospital rated their quality of life at 5.3 compared to 5.0 in the ICU, 6.6 at home with hospice and 7.3 at home. Those patients receiving hospice at home rated their physical comfort highest, at 6.6, compared to 3.6 in the ICU, which was the lowest rating.
The authors noted the reason for the discrepancy may be due to the types of patients who choose to die at home with hospice care. But, they said, it's more likely the rating differences have to do with the different goals of an ICU and hospice.
Among caregivers, 21% of those whose loved ones died in the ICU or hospital developed post-traumatic stress disorder six months later compared to 4.4% of those whose loved ones died at home with hospice. The findings suggest that when caregivers are not prepared for death, they suffer more grief and stress. "It may be that attached caregivers cannot accept the patient's impending death and attempt to care for them at home until a medical crisis precipitates a terminal hospitalization," the authors wrote.
In a related study published Friday, researchers found that a special training program for doctors and nurses to improve the experience of end-of-life care in intensive care units didn't work. The healthcare professionals were trained to communicate better with family members and to take other measures to improve the patient's and family's satisfaction and comfort. But follow-up surveys showed the program made no difference in families' experiences with death in the ICU.
"It is very difficult to change busy critical care clinicians' ... behavior patterns, because they have a lot of pressures on them," the lead author of the study, Dr. J. Randall Curtis, said in a news release. "While we designed the intervention with that in mind, it was more difficult than we anticipated."
The study was published online in the American Journal of Respiratory and Critical Care Medicine.
-- Shari Roan / Los Angeles Times
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