Does it Matter Where Patients Die?
According to a recent study reported in the Journal of Clinical Oncology, in many cases where patients die may be as important as when they die. The impact on the family caregiver appears to last longer and cause greater emotional distress when their family member dies in a hospital setting than when their loved one dies at home with hospice services.
When their loved ones died in the ICU, caregivers suffered more lasting psychiatric problems, such as post-traumatic stress disorder (PTSD) or a prolonged period of disabling grief, says the study, part of the larger Coping with Cancer study. It was found that the patients' experiences near death have lasting effects on how their loved ones live after they're gone. This follows a study done by the New England Journal of Medicine which shows that patients who receive early palliative care, focusing on relieving distress in both patients and caregivers, actually helps the patients live longer.
The study's researchers evaluated caregivers' mental health before patients died, and again six months later, to avoid confusing grief with a pre-existing mental health problem.
Surprisingly, many cancer patients are unprepared for death. Although 70% of patients with advanced cancer want to know their prognosis, only about 30% of terminally ill patients realize they're dying. This could account for the fact that nearly 10% of cancer patients die in intensive care units where they undergo painful and invasive procedures with little chance of extending life. Patients and caregivers need to be informed about choices near the end of life in addition to being given information about treatment options like chemotherapy and surgery.
It must be noted that the study has important limitations. The overall numbers of caregivers who developed PTSD was very small, says Jennifer Temel, author of The New England Journal of Medicine study. It is therefore difficult to put an exact number on the risk of developing PTSD after losing someone in the ICU. And Temel notes that doctors have no way to know whether being in the ICU actually caused the emotional and physical distress to patients and their caregivers. Instead, it's possible that people with greater distress are more likely to go to the ICU, a circumstance which also impacts the emotional distress caused to the caregiver.
There are times when symptoms simply cannot be managed at home, and therefore treatment in the hospital ICU is unavoidable. In most cases, doctors can help better prepare patients and caregivers by talking to them honestly about death and comparing the benefits and risks of aggressive therapy against hospice care, says Jennifer Obel, a doctor with the American Society of Clinical Oncology.