HONOLULU – What do patients in the ICU want at the end of life?
Research has shown that pain control typically ranks at the top of the list, "but they also want to avoid inappropriate prolongation of dying," Dr. Richard Mularski said at the annual meeting of the American College of Chest Physicians.
Patients "want to achieve a sense of control at the end of life," continued Dr. Mularski, a pulmonologist who is a clinical investigator with the Center for Health Research at Kaiser Permanente Northwest, Portland, Ore. "They don’t want to be a burden on their family. We have to offer professional help, which primarily comes from talking with our patients and providing opportunities to strengthen relationships with loved ones. This might mean backing off on sedatives and pain medications so that patients and loved ones can interact before withdrawal of life support."
Dr. Mularski highlighted four key points from a 2009 consensus statement he helped to create on pain management during the palliative and end-of-life experience in the ICU (Chest 2009;135:1360-9). The first point reads that all ICU patients "experience opportunities for discomfort and suffering regardless of prognosis or goals, thus palliative therapy is a requisite approach for every patient, of which pain management is a principal component."
According to the second, third, and fourth key points, "for those dying in the ICU, an explicit shift in management to comfort-oriented care is often warranted and may be the most beneficial treatment the health-care team can offer; communication and cultural sensitivity with the patient-family unit is a principal approach for optimizing palliative and pain management as part of comprehensive ICU care, [and] ethical and legal misconceptions about the escalation of opiates and other palliative therapies should not be barriers to appropriate care, provided the intention of treatment is alleviation of pain and suffering."
Communicating effectively with the patient and family about prognosis in the critical care setting can be difficult "because we’re often limited by what treatments or interventions we can make," Dr. Mularski said. "This creates a certain tension: Patients have a widespread and deeply held desire not to be dead. We have to try to focus on that desire and acknowledge our limitations. Data show we don’t really prognosticate when death will occur very well."
"For those dying in the ICU, an explicit shift in management to comfort-oriented care ... may be the most beneficial treatment the health-care team can offer."
The potential for limited treatment options is only part of the problem. A trial conducted in a university-affiliated ICU found that 54% of families fail to comprehend a diagnosis, a prognosis, or treatment options (Crit. Care Med. 2000;28:3044-9). "We also know that family members experience a fair amount of moderate to severe posttraumatic stress," Dr. Mularski added. "This stress is increased when we provide inadequate information. We have to be careful not to use phrases that suggest abandonment or a failure of medicine to care, such as ‘there’s nothing more we can do,’ or ‘we have nothing to offer.’ We have plenty to offer. Palliative care may be the most important thing we have to offer at the end of life."
Key factors in shared decision making between clinicians and families about end-of-life care include prognosis, level of certainty "which may not be there," and family preferences. "The role of the patient and family is to help us understand patient values and preferences, and for us as clinicians to indicate which treatments might be concurrent with those values and preferences," Dr. Mularski said.
In a 2008 article, "Practical Guidance for Evidence-Based ICU Family Conferences," Dr. J. Randall Curtis and Dr. Douglas B. White offered a five-step approach to improving communication in the ICU with families (Chest 2008;134:835-43). It centers on the mnemonic "VALUE," which stands for value family statements, acknowledge family emotions, listen to the family, understand the patient as a person, and elicit family questions.
At Kaiser Permanente Northwest, Dr. Mularski and his colleagues created pocket cards for critical care staff that contain the VALUE mnemonic to remind them of how to best interact with families of patients in the ICU. He also recommends the book by Dr. Anthony L. Back and colleagues, "Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and Hope" (New York: Cambridge University Press, 2009).
Dr. Mularski disclosed that he has received research funding from several agencies including the Agency for Healthcare Research and Quality, National Cancer Institute, National Quality Forum, and Robert Wood Johnson Foundation. He also has received research support from Novartis and Spiration for unrelated work in chronic obstructive pulmonary disorder.