A study of patients dying of cancer and their caregivers has found that individuals who die in the hospital or intensive care unit (ICU) had a worse quality of life at the end of their lives compared to those cancer patients who died at home with hospice services. In addition, their caregivers were more likely to develop psychiatric problems while grieving.
?Where cancer patients die really does matter, not only for them, but for their family caregivers as well,? said lead author Alexi A. Wright, MD, instructor in medicine at Harvard Medical School and Dana-Farber Cancer Institute in Boston. ?Our findings suggest that interventions aimed at reducing hospital deaths or increasing hospice use may improve cancer patients? quality of life near death, while also reducing the risk that caregivers will develop mental illness during bereavement.?
Using interviews, Wright and her colleagues conducted a prospective study of 342 patients with advanced cancer and their caregivers as part of a larger study, Coping with Cancer. Patients were followed from the time of study enrollment to death, a median of 4.5 months. They assessed the patients? quality of life at the end of life within two weeks of the patient?s death. At the same time, the researchers evaluated the caregivers? mental health at the beginning of their participation and at six months after the patient?s death.
The investigators found that the type of care patients received near the end of life mattered a great deal to both groups. Those who died in an ICU or hospital experienced more physical and emotional distress and worse quality of life than those who died at home with hospice. The study showed that caregivers of cancer patients who died in intensive care units had a five-fold greater risk of developing Post-Traumatic Stress Disorder compared with caregivers of patients who died at home with hospice services. ?Patients? experiences at the end of life have lasting effects on how their caregivers live after they are gone. We found that patients? place of death and medical care at the end of life shaped caregivers? bereavement experiences,? Wright said.
The researchers expected to find differences in patients? quality of life based upon where they died, but were surprised to find such striking differences in caregivers? mental health during the grieving process. ?Other studies have examined caregivers? psychiatric symptoms during bereavement, but we followed caregivers both before and after the patient?s death, and ours was the first to specifically isolate caregivers? risk of developing psychiatric illness as a result of the patients? place of death,? Wright said.
The investigators found that 21% (4 of 19) of caregivers of patients who died in the ICU or hospital developed PTSD compared to 4.4% (6 of 137) of caregivers of those who died at home with hospice. Similarly, 21.6% (8 of 37) of caregivers of patients who died in the hospital or ICU were associated with a longer period of intense, disabling grieving (prolonged grief disorder) compared to home hospice deaths (4 of 77, or 5.2%).
The authors recommended several potential ways to reduce the number of cancer patients choosing to die in hospitals instead of at home or in hospice care, including increasing end-of-life discussions between patients, caregivers and physicians and improving patient education.
?If patients are aware that the intensity of care that they receive near death may affect their quality of life ? and the loved ones after they are gone ? they may make different choices such as advance directives, so that they are protected against futile aggressive care,? Wright said.
The researchers plan to examine patient-physician communication and decision-making, including whether patients fully understand their prognosis, and what is involved when oncologists and cancer patients are considering stopping therapy, including chemotherapy. ?Approximately 70 percent of advanced cancer patients want to know their prognosis, but only a third of terminally-ill patients report being aware that they are dying. We want to understand whether patients make different choices ? and have different medical outcomes ? if they are fully informed of their prognosis and li:elihood of responding to further treatment,? Wright said.
The research was supported in part by The ASCO Cancer Foundation Young Investigator Award, funded by Susan G. Komen for the Cure?. Coping for Cancer is supported by a grant from the National Cancer Institute.
Commenting on the study, Jennifer C. Obel, M.D., Member of ASCO?s Cancer Communications Committee said ?These findings are striking for a number of reasons. As physicians, we can do a much better job of discussing end-of-life options for patients with advanced cancer. These results show that there are real consequences to the choices made, in terms of quality of life for both patients and caregivers. We must approach educating patients about choices near the end of life with the same rigor that we approach educating them about treatment options like chemotherapy and surgery.?