A new study from Case Western Reserve University's Frances Payne Bolton School of Nursing emphasizes the importance of having discussions related to quality of life before becoming critically ill.
Barbara Daly and Sara Douglas led a research team that observed, taped and analyzed discussions from 116 family meetings, which took place in five intensive care units (ICUs) at University Hospitals Case Medical Center and MetroHealth Medical Center. The family meetings were for patients who had long ICU stays greater than five days.
"Patients who have long ICU stays (called "chronically critically ill") are usually unable to be involved in discussions of goals and treatment related to their care," Douglas said. As a result, their family decision makers are left with the responsibility of making these decisions. Without information from the patient regarding what aspects of quality of life are important to them, it becomes difficult and stressful for their family decision makers to make these important decisions.
Critical Care Medicine reported findings from this National Institute of Nursing Research-funded study in the article entitled, "Neglect of quality-of-life considerations in intensive care unit family meetings for long-stay intensive care unit patients." In the study, Douglas and Daly found that patient treatment preferences and the kind of life the patient wants after a long stay in intensive care often are missing in many medical team and family discussions.
"Don't confuse quality-of-life discussions with end-of-life ones," says Sara Douglas, associate professor at the nursing school and the lead author on a paper that examines quality-of-life issues for chronically critically ill patients. "This is about the kind of life a patient looks forward to when they leave the ICU, and whether aggressive medical treatments will give them that kind of life."
The researchers found that most meetings with family members were about 24 minutes long, with the majority of time devoted to non-emotional issues - and little on what the patient might want. They also found that deciding what was important in a patient's life (such as being able to return to playing golf or visiting with family or friends), often was not discussed--even when professionals who were trained to bring these topics to the table were present at the meeting.
According to Douglas and Daly, it is difficult for family decision makers as well as many health care providers to discuss quality of life issues because they often associate quality of life with end of life discussions.
The authors concluded that every family decision maker should have the opportunity to discuss and reflect on the quality of life that the patient would want if that person recovered from this critical event. The best way to make appropriate treatment decisions is to have information about what goals are important to the patient.
"Since many of these patients become critically ill very suddenly, it is important to know the wishes of the patient and what contributes the most to quality of life before the patient becomes ill. Just as we have living will discussions with our family members, we should also have quality of life discussions," Douglas said.