Death at Home (with hospice services) Less Distressing for Cancer Patients and Families

Study finds caregivers at higher risk for mental illness when patients with advanced cancer die in hospital/ICU

Cancer patients who die in the hospital or an intensive care unit have worse quality of life at the end-of-life, compared to patients who die at home with hospice services, and their caregivers are at higher risk for developing psychiatric illnesses during bereavement, according to a study by researchers at Dana-Farber Cancer Institute.

One striking finding of the study, reported in the September 13th issue of the Journal of Clinical Oncology, was that bereaved caregivers of patients who died in an intensive care unit (ICU) were five times more likely to be diagnosed with Posttraumatic Stress Disorder (PTSD), compared with caregivers of patients who died at home with hospice services.

“This is the first study to show that caregivers of patients who die in ICUs are at a heightened risk for developing PTSD,” wrote the authors, led by Alexi Wright, MD, a medical oncologist and outcomes researcher at Dana-Farber. The American Medical Association Glossary defines PTSD as “feelings of anxiety experienced after a particularly frightening or stressful event, which include recurring dreams, difficulty sleeping, and a feeling of isolation.”

In addition, families and loved ones of patients who died in the hospital, though not in an ICU, were at higher risk of developing Prolonged Grief Disorder (PGD), an intense and disabling form of grief which lasts more than 6 months.

The report comes at a time of growing concern over the appropriateness of aggressive, hospital-based end-of-life care for terminal cancer patients. The authors noted that although most cancer patients would prefer to spend their last days at home, 36 percent die in a hospital and 8 percent in an ICU and may be subjected to invasive and painful procedures at the end of life.

In contrast to home or hospice care that emphasizes alleviating pain and discomfort and providing a peaceful death, ICU care can be traumatic for patients and their family and caregivers, said Wright.

The report, whose senior author is Holly Prigerson, PhD, director of Dana-Farber’s Center for Psycho-oncology & Palliative Care Research, contains findings from a prospective, longitudinal study of advanced cancer patients recruited at seven cancer centers from 2002 to 2008. Patients and caregivers – mainly family members – were interviewed at the beginning of the study. Their medical charts were reviewed at that point and after the patients died, on average 4.5 months later. Within two weeks of the death, researchers interviewed the caregiver most closely involved with the patient’s care during the last week of life; they interviewed the caregiver again six months later.

In the interviews, the researchers asked the caregivers to assess the patients’ quality of life and physical and psychological stress during the last week of life. The researchers also evaluated the caregivers’ own mental health at the beginning of the study – to uncover any pre-existing psychiatric illnesses – and again six months after the patient’s death.

After analyzing the data on 342 patient-caregiver pairs, the investigators found that patients who had died in the hospital or an ICU experienced more physical and emotional distress and worse quality of life than those dying at home. Among the caregivers, they determined that 4 of 19 caregivers (21 percent) of patients dying in an ICU developed PTSD, compared with 6 of 137 (4.4 percent) when death occurred in the home/hospice setting. A similar elevated risk of prolonged grief disorder was found in caregivers when patients died in the hospital, but not in an ICU.

These findings are important for both patients and physicians, said Wright. “If patients are aware that more-aggressive care may affect not only their quality of life, but also their loved ones after their death, they may make different choices.”
In addition to Wright and Prigerson, the paper’s other authors are Tracy Balboni, MD, Ursula Matulonis, MD, and Susan Block, MD, of Dana-Farber, and Nancy L. Keating, MD, of Harvard Medical School.

The research was supported by grants from the National Institute of Mental Health and the National Cancer Institute