ARTICLE IN BRIEF
Citing data showing that existing scales underestimated negative outcomes for recovery from an intracerebral hemorrhage (ICH), a research team in Germany proposed a different prognostic scoring scale for patients with ICH. But independent experts say a population-based scale cannot be relied on to accurately predict the recovery of individual patients.
A common scale used to predict outcomes for patients with intracerebral hemorrhage (ICH) may be overly pessimistic and lead to a self-fulfilling prophecy if care is limited or withdrawn because a poor prognosis is anticipated, according to a study by investigators in Germany.
The study builds on a growing awareness in intensive-care medicine that patients may do better than prognostic scales predict and that worst-case scenarios can come true when treatment decisions with life-or-death ramifications are made too early in intensive care unit (ICU) treatment, the study authors said.
The study also comes amid a growing sense that much of end-of-life care is futile and may lead to prolongation of suffering, though, on the other hand, some patients may not get a chance for survival if treatment is cut back too soon.
The German researchers looked at the ICH Score, a widely used and validated prognostic scoring system (with a scale of 0 for the best outcome on up to 6 for the worst) that takes into consideration a patient's Glasgow Coma Scale score, age, infratentorial origin of hemorrhage, ICH volume, and presence of intraventricular hemorrhage.
The researchers prospectively followed 583 consecutive ICH patients treated at University Hospital Erlangen in Germany. They looked at early ICU treatment decisions, including whether life support was withheld or withdrawn in the first 24 hours; clinical and radiological findings; and 12-month functional outcomes for disability. The researchers wanted to know how the ICH scores assigned in the ICU aligned with actual outcomes.
The researchers, reporting in the July 5 online edition of Neurology, concluded that the ICH Score overestimated the chances for death and severe disability in all ICH patients irrespective of care limitations, but the prediction scores tended to be especially off when it came to patients who received maximal treatment. Many of those patients turned out to have favorable outcomes.
NEW ICH SCALE
As part of their analysis of maximally treated patients, the researchers developed a new grading scale called the max-ICH score, which they say provides a more precise prediction of outcome and thus helps reduce the chances that a seemingly dire situation will lead to a self-fulfilling prophecy. The scale, which assigns scores from 0 to 10, incorporates the NIH Stroke Scale score, more age categories, intraventricular hemorrhage, oral anticoagulation, and ICH volume (lobar and nonlobar).
Of the 583 patients, the study authors reported that 112 had early care limitations and died. They defined early care limitations as potentially life-sustaining treatments that were withheld or withdrawn based on the prediction that the patient would die.
In the maximally-treated group the traditional ICH score predicted that there would be 29 percent mortality, when in fact there was 21 percent mortality in the group.
The authors suggested that about 37 percent of the patients who had early care limitations may have survived if they had been treated maximally, and the max-ICH score significantly increased identification of patients who would benefit from aggressive care. They also found that almost half of the maximally-treated patients had a favorable functional outcome (a modified Rankin score of 0-3) at one year.
“The new max-ICH score helps to identify critically ill patients that still may profit from aggressive treatment and possibly decreases overestimation of poor outcomes,” said coauthor Joji Kuramatsu, MD, a neurocritical care physician in the department of neurology at Erlangen. He told Neurology Today in an email that the new scale, which differs modestly from the traditional ICH scale, “may aid physician's decision-making and may aid the communications between relatives and the treating physician.”
Dr. Kuramatsu said the max-ICH scale, already in use at his hospital, will next be tested in a large multicenter cohort of patients if it is generalizable.
The authors noted that their study of ICH grading scales had limitations, including the fact that it involved only one medical center. The study analysis also could not totally eliminate the potential for self-fulfilling prophecy. Another consideration: Medical scoring systems are based on the experiences of a cohort of patients and aren't meant to predict outcome for an individual patient.
“The aim of the present score is not to identify patients in whom further care is futile but to show in which patients aggressive care is warranted and potentially beneficial,” the researchers wrote.
Dr. Kuramatsu told Neurology Today that that scales also can't address ethical issues that frequently arise in the ICU, especially when the patient's wishes aren't spelled out in an advance medical directive or known to the family.
“Do we have the right to withhold therapy in those severely affected patients or should we treat maximally for a certain period and reconsider?” he asked.
An editorial that accompanied the study noted the importance of improving prognostic tools and acknowledged that the traditional ICH score may err on the negative side because it included patients with early care limitations, such as withholding or withdrawing life support, when it was devised.
But the editorial, coauthored by Bradley Jacobs, MD, professor of neurology at Wright State University Boonshoft School of Medicine in Dayton, OH, cautioned that the max-ICH score “may be painting a rosier prognosis for patients than is real” and said further testing is needed.
“I would be hesitant to use this scale without it being reproduced in other populations,” Dr. Jacobs told Neurology Today. In the meantime, he said, “The study is another reminder you can't put too much emphasis on the ICH score. It gives you a general sense of prognosis but it can't be used in isolation.”
Michael Diringer, MD, professor of neurology, neurosurgery and anesthesiology at Washington University in St. Louis, said clinicians and researchers have long been aware that prognostic scores can lead to a self-fulfilling prophecy and that prognostic scales tend “to be better at predicting mortality than they are at predicting functional outcomes.”
But he cautioned against over-reliance on grading scales regardless of which one a doctor chooses to use. While scales might help doctors and families in reaching treatment decisions, he said, the scores do not provide certainty, cannot address the complexity of issues that often unfold in the critical care environment, and do not consider quality of life. For instance, “You [may] keep the patient from dying but what shape do you leave them in?”
Kyra J. Becker, MD, professor of neurology and neurological surgery at the University of Washington in Seattle, agreed that the new study confirms the hunches of many ICU doctors when it comes to making predictions about ICH.
“The new study, as well as many others from prior years, suggests that rather than arriving quickly at a prognosis and making life and death decisions immediately, it may be better “to give patients a chance to see if they can improve.”
The difference with this study, she said, is that the patients were assessed at one year after ICH instead of at an earlier time point as done in many of the other studies.
Dr. Becker said that prognostic scales, even if imperfect, have a place in clinical decision-making and can help families understand the range of possibilities for both survival and a favorable outcome.
“I think we should be honest with families that we aren't particularly good about predicting outcome,” Dr. Becker said. She said some families prefer hearing statistics; others have already done internet research and have preconceived notions on what might happen; and some just want the doctor to tell them what to do.
“The challenge for doctors is how to use the data we have and help guide families to make decisions based on that data,” she said. “Every family is unique in their ability to digest the information and respond.”
David Y. Hwang, MD, assistant professor in the division of neurocritical care and emergency neurology at Yale School of Medicine, said: “The truth is that there are so many variables that go into how (an ICH) patient does. It's not just the size of the hemorrhage.”
He added that predicting survival is one thing; predicting functional outcome “six months, 12 months down the road” is another matter. The quality of ICU care, the patient's comorbidities, and social factors such as whether the patient has a good support system in place all influence outcome, he noted.
“At the end of the day it is very hard to develop a population-based scoring system that one can rely on for any individual patient,” he said.
Dr. Hwang said a potential downside of scoring systems is that they may inadvertently create a treatment bias. Doctors and nurses may subconsciously think that a patient is going to die and thus may not be as attentive to providing care even if no decision has been made to limit or withdraw treatment.
One of Dr. Hwang's research interests is looking at how prognostic information gets conveyed to families of critically ill patients and the importance of how the wording is phrased.
“You can build a lot of trust with families by talking about uncertainty,” he said, and by not rushing decision making and allowing more time “people often do become more clear about their wishes.”
In addition to recognizing the challenges of accurate prognostication, physicians also need to recognize that decisions to continue or end treatment are highly personal, Dr. Hwang said. One patient or family may see life at any cost as the goal. For another, being “unable to walk or feed myself may be a situation almost worse than death.”