Researchers analyzed the stress levels of caregivers, as well as their perceptions of the transplant recipients’ quality of dying and death. Their findings will be presented at the American Thoracic Society’s 2008 International Conference in Toronto on Monday, May 19.
Caregivers of all lung transplant recipients at the University of Washington who had died within the last five years were assessed using three validated questionnaires that measured their burden of depression, their level of PTSD symptoms and the quality of their loved ones’ last days.
“We found that caregivers reported that their loved one’s symptoms were poorly controlled and that the quality of the dying and death process was worse than that of other populations. In addition, family members who perceived that their loved one had either a lower quality of dying and death or poorly controlled pain symptoms, were more likely to have symptoms consistent with PTSD,” said Cynthia Gries, M.D., M,Sc., of the Division of Pulmonary and Critical Care Medicine at the University of Washington School of Medicine in Seattle.
This is the first study to evaluate the caregivers’ experience with end-of-life care in lung transplant patients, and to evaluate the psychological effects it has on those family members who survive.
“Most people don’t realize that prior to wait-listing a patient as a lung transplant candidate, a caregiver plan must exist to support the patient through the entire process,” said Dr. Gries. That process can be lengthy and grueling for the caregiver as well as the patient, resulting in much higher rates of depression and PTSD symptoms.
“The caregivers we studied had rates of depressive symptoms of 21 percent and of PTSD symptoms of 32 percent, compared to the average in the general population of six to seven percent,” she continued. “This suggests that there is a significant burden of psychological symptoms in family members which has previously been unrecognized.”
The study demonstrates that there is an urgent need for significant improvement in areas such as symptom management. Dr. Gries believes that having trained counselors to help family members with emotional needs, as well as financial issues, could reduce the stress on caregivers.
“We hope that our findings will increase awareness among clinicians that caregivers experience a significant burden of symptoms and may need additional support,” she concluded.
Source: American Thoracic Society