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Patients’ experience of their symptoms needs to be considered as a "cost" of icu treatment, according to Judith E. Nelson, MD, JD. Nelson, associate director of the medical intensive care unit and assistant professor of medicine in the division of pulmonary and critical care medicine at New York’s Mt. Sinai School of Medicine, and colleagues recently studied 100 consecutive patients admitted to the medical intensive care unit at Mt. Sinai Hospital.1 All study subjects had present or past cancer.
Fifty of the 100 patients enrolled in the study were able to provide self-reports and 100% of those patients who were able to respond did so. "That was pretty amazing from our standpoint," Nelson says. "What was disturbing was that the patients were all highly symptomatic. It may be that people are willing to undergo whatever it takes to survive, but they need to understand what’s involved in an ICU stay."
Nelson says this was the first systematic study in which patients self-reported their symptoms in real time. "Past research is based on retrospective analyses or interviews that include surrogate perceptions," Nelson says. "The gold standard is the patient’s own report."
"We have a lot of patients dying in our ICUs, but dying or not, their comfort has to be the focus of our attention," Nelson says. "Symptom assessment is a step forward in achieving better symptom control. It also provides a baseline for comparing responses to existing symptom management protocols."
Nelson points out that all sorts of detrimental responses are associated with pain, which makes teleological sense. She points to the increased clotting and coagulation associated with pain and injury as an example. When clotting comes from an open wound it makes sense because it prevents dying from hemorrhage. However, clotting and associated pain can also come from catheter insertion during an ICU stay, when Nelson says it can and should be alleviated. "My own feeling is that people will greatly benefit from symptom control," Nelson says. "This study serves as a reminder that ICU patients are still suffering, and this includes patients who are dying."
Thomas Prendergast, MD, critical care physician at Dartmouth-Hitchcock Medical Center in Lebanon, NH, says nurses and physicians often underestimate the amount of pain and discomfort patients are enduring. "We may under- treat pain and overtreat anxiety by giving too few opiates and too many benzodiazipines," Prendergast says.
He points out that ICU physicians tend to underestimate the pain of simple procedures such as endotrachial suctioning, or turning and positioning patients. "Some patient reports suggest that those procedures are very uncomfortable, but we rarely medicate patients for them," Prendergast says. "Maybe there is a balance to be struck between over sedation and appropriate medication for pain."
As support for lowering sedation, Prendergast points to a study in which physicians stopped all sedation of ICU patients until the patient either woke up or appeared uncomfortable. "The result of the intervention was that patients had a much shorter stay on ventilators and under ICU care without an increase in mortality rate," Prendergast says. "We may well prolong their stay on a ventilator by giving so much sedation."
The Mt. Sinai study fuels this argument. Eighty-six percent of the nonresponders were mechanically ventilated as opposed to 62% of responders. The mortality rate was 74% in nonresponders and 36% in those who could respond.
Members of the group who didn’t respond and those who did were similar in all characteristics except that mortality was higher among nonresponders. A third of the Mt. Sinai patients died before the end of the ICU study and 55% died before the end of their hospital stay. Many of them were receiving end-of-life care even as they were receiving aggressive treatments to prolong their lives.
Patients don’t need to suffer to survive their illnesses, Nelson says. "There isn’t any evidence that suffering is required. In fact, there is accumulating evidence that minimizing suffering promotes recovery rather than impeding it."
Nelson acknowledges that when patients are critically ill, concerns about balancing symptom management with the aggressive efforts to prolong life are justified. However, because identifying patients who are dying isn’t always possible, she counsels physicians to consider patient comfort first. "What makes the ICU unique and difficult is that you’re trying to get patients through a critical illness while making them comfortable because they may not survive it. Good ICU care needs to involve providing comfort both to patients who are pursuing aggressive efforts and for patients who are more clearly at the ends of their lives."
Every patient in the Mt. Sinai study was evaluated by an interdisciplinary palliative care consultation service comprised of an attending physician with palliative care expertise and an advanced practice nurse with palliative care experience who collaborated with the ICU physicians to minimize symptoms. Nelson used a modified version of the Edmonton Symptom Assessment Scale, substituting verbal descriptors for the original instrument’s visual analog scale. Patient symptom-reporting choices were none, mild, moderate, or severe.
"We looked at eight symptoms: pain, discomfort, difficulty sleeping, shortness of breath, unsatisfied thirst, unsatisfied hunger, depression, and anxiety," Nelson says. The researchers also asked patients to rate pain and discomfort associated with invasive procedures such as placing feeding tubes or intravenous catheters and the degree of stress they experienced due to limitations on visiting, sleep disruption, inability to communicate, noise, lighting, odor, and temperature. All patients were approached daily for symptom assessment and interviewed about procedures and stress on the fourth day of their ICU stays.
At the moderate or severe rating, 75% experienced discomfort; 71% had unsatisfied thirst; 68% had difficulty sleeping; 63% experienced anxiety; 56% pain; 55% unsatisfied hunger; 39% depression; and 34% shortness of breath. "One can only imagine that, if anything, this is an underestimate at a cross range of institutions," Nelson says. She stresses that the high levels of symptom experience found at Mt. Sinai would not be tolerated in a hospice or other environment in which people are recognized as dying.
A third of the Mt. Sinai study patients died before the end of the ICU study and 55% died before the end of their hospital stay. Many were receiving end-of-life care even as they were receiving aggressive treatments to prolong their lives. Members of the group who didn’t respond and those who did were similar in all characteristics except that mortality was higher among non-responders.
Thirty-six percent of responders died before they left the hospital. "We were able to get at symptoms of nonsurvivors as well as survivors, something you obviously can’t do after transfer from the ICU," Nelson says. "We have documentation from patients who could communicate and were cognitively intact that might serve as evidence for others suffering from similar illnesses and receiving similar treatments under similar conditions, but unable to express themselves."
1. Nelson J, et al. Crit Care Med. 2001;29:277-282.