"ICUs are designed to save lives and rescue very sick patients, but the reality is that many patients die in ICUs,” said lead researcher Judith Nelson, M.D., J.D., Associate Professor of Medicine at the Mount Sinai School of Medicine in New York. “Patients, family members, health care workers and others have identified a need to improve various aspects of care at the end of life for critically ill patients.”
"Until now, no one has conducted a national survey of ICU directors to find out their views of end-of-life care," said Dr. Nelson, who is a faculty member of the Division of Pulmonary and Critical Care Medicine and the Hertzberg Palliative Care Institute at Mount Sinai, as well as Associate Director of the Medical Intensive Care Unit. “The views of ICU directors are important,” Dr. Nelson said, “because they are close to the problem and they are opinion leaders with administrative authority to effect change.”
“It’s only recently that end-of-life care in the ICU has been highlighted as an important area for quality improvement,” Dr. Nelson said. “We’re just beginning to get good data on the scope and nature of the problem. This survey helps to identify ways we can move toward better care for patients.”
With funding from the Robert Wood Johnson Foundation, Dr. Nelson, co-Principal Investigator, Dr. Deborah Cook of McMaster University in Canada, and colleagues developed a survey to understand the perceptions of nursing and physician directors of ICUs about end-of-life care, and sent it to 1,200 ICU directors at 600 ICUs across the country. About 78 percent of ICUs (468) and 50 percent of ICU directors (590) responded, from 48 states and the District of Columbia. Respondents had an average of 17 years of experience in the ICU.
The survey asked respondents about barriers to optimal end-of-life practice, and asked them to rank the magnitude of the barrier on 1 to 5 scale. The survey also asked about what strategies can be helpful in end-of-life care, and whether those strategies are available to them in the ICU.
More than 85 percent of respondents identified at least one large barrier to end-of-life care, and more than 75 percent identified multiple barriers. Important barriers included unrealistic expectations on the part of patients or families about the prognosis of patients or the effectiveness of ICU treatment; the inability of patients themselves to participate in discussions about their treatment; the lack of advance directives from patients about how they wish their care to be handled at the end of life; insufficient training of physicians in communicating about end-of-life issues; competing demands for clinicians’ time; and disagreements within families about appropriate goals for care of patients.
“The good news is that these ICU directors endorsed a number of strategies they thought were helpful in improving end-of-life care,” Dr. Nelson said. Fourteen strategies were rated by more than 80 percent of ICU directors as being helpful. These included: training of clinicians in communications skills; training in symptom management; quality monitoring of end-of-life care; access to experts in palliative care; regular visits to the ICU by pastoral care representatives; regularly scheduled meetings of a senior ICU doctor and nurse with patients’ families; and bereavement programs for families.
“Our findings also revealed that some of these widely endorsed strategies are not available in many institutions at this time,” Dr. Nelson said. For instance, less than 30 percent of respondents reported the availability of end-of-life care quality monitoring or bereavement programs; only 35 percent had regularly scheduled meetings between senior ICU clinicians and families; and 40 percent reported the availability of training in communications skills for clinicians.
“These are all ways to improve the quality of care for patients dying in the ICU,” said Dr. Nelson. “If we include end-of-life care among our healthcare priorities, many of these strategies can be readily implemented.”
Although regularly scheduled meetings between doctors and families should be an indispensable part of ICU care, and ICU directors across the country see them as a helpful strategy, there are many reasons why these meetings take place less often than is needed, Dr. Nelson said. “There are many competing demands on clinicians’ time. In addition, many ICU clinicians have not been trained in communications skills, and people don’t do things they don’t know how to do well,” she said. “ICU doctors may have trouble talking about death and dying—they have a strong professional culture of lifesaving. But if a death is inevitable, then making it the best death possible is an essential skill and a professional accomplishment, which families appreciate and which can bring professional and personal gratification for the ICU clinician.”