ARTICLE IN BRIEF
Neurointensivists share their strategies for dealing with patients whose prognosis for recovery in the ICU is limited, at best.
When lifesaving measures won't likely lead to the recovery of a patient in the intensive care unit (ICU), what would neurologists do? That's what Neurology Today asked neurointensivists in several busy academic centers in light of a new study that found that about one in ten patients in ICUs undergo costly interventions that the physician in charge deems “to be ineffective, needlessly aggressive or pointless.”
According to the report in the Sept. 9 online edition of the Journal of the American Medical Association Internal Medicine, 98 (8.6 percent) of 1,136 patients evaluated in 10 ICUs at a single Los Angeles academic medical center during a three-month period — received treatment that their physicians perceived as “probably futile,” and 123 (11 percent) underwent treatment that their physicians considered “futile.” The cost for futile intensive care treatment totaled an estimated $2.6 million, the lead author, Thanh N. Huynh, MD, a clinical instructor in the Division of Pulmonary and Critical Care Medicine of the David Geffen School of Medicine at the University of California, Los Angeles, told Neurology Today.
While the study didn't look specifically at patients with neurological conditions, Dr. Huynh noted it was not uncommon for such patients to present to the ICU in a condition where survival is not likely. “Supportive communication, bereavement guidance, and early decision-making can facilitate appropriate clinical decisions under such circumstances,” she said.
THE COMPLEXITIES OF CARE
Wade S. Smith, MD, PhD, professor of neurology and director of the NeuroICU at the University of California, San Francisco (UCSF), sees this first hand, underscoring in an interview with Neurology Today the complexities of care with affected patients and their families. A physician's clinical judgment should not be impaired by simply acquiescing to a family's requests, he said, adding that it would be wise to explain with compassion why further recovery efforts would not be in a patient's best interest. Dr. Smith said about 50 percent of his time spent consulting with the ethics committee at the UCSF Medical Center involves grappling with these types of issues.
“As a neurologist and neurointensivist, I [see] some cases where continued treatment is likely of little to no benefit for patients, but I continue [care] in part to allow the family to come to terms with the tragedy,” he told Neurology Today. The rationale stems from a lack of high-quality prognostic data to guide physicians in dealing with most end-of-life physical and neurological conditions, he added.
If such data existed, “concerns over limiting therapy upfront could be assuaged, because we would simply explain to families and patients that there is nothing left to offer beyond palliative care,” Dr. Smith explained. “But before we have such robust models, we still need to treat patients with the benefit of the doubt, as we have all seen patients — in whom we thought our treatments would be ineffective — get up and walk home. Judging how common these ‘miracles’ are and how to behave in every patient's interest is a continuing daily struggle in the ICU.”
A COMMON ICU SCENARIO
A common ICU scenario involves a comatose patient with a catastrophic brain injury, such as trauma, stroke, or hemorrhage. “The patient is nearly brain-dead and has no chance of recovery, but, with aggressive care, can be managed and kept stable — at least for a while — and the family is hoping for a miraculous recovery,” said Gene Sung, MD, assistant professor of neurology and chief of the Neurocritical Care and Stroke Division at the University of Southern California in Los Angeles, which has no connection to the UCLA study.
With health care increasingly centered on patient autonomy and reinforced with the power of and fear of litigation, physicians in the United States tend to err on the side of caution by following the requests of patients and their families. However, it is best to engage in conversation about the prognosis and therapeutic goals sooner rather than later, said Dr. Sung, who is president of the Neurocritical Care Society.
“Our neurocritical care team tries to enlist the family as part of the team with early and frequent family conferences — so we can engage in clear, frank discussions of the medical situation, including reviewing tests, scans, and the physical exam together,” Dr. Sung explained. He added: “As a neurointensivist, it is always striking to me that many of my colleagues do not show scans to the family. I think pictures are often immensely helpful. I will sometimes also perform a neurological exam in front of the family to show how badly injured the patient is.”
This approach helps a physician avoid futile measures that may frustrate the entire health care team. Setting realistic expectations also keeps the physician from giving the family false hope, and it spares the patient from eventual deterioration with unwanted indignities — needle pokes for blood draws and IVs, skin breakdowns from bedsores, and puffiness from swelling. Also, given the scarcity of ICU resources, allocating aggressive care to a patient with a miniscule chance of a recovery may take away that possibility from another patient who has better odds of survival, and it contributes to soaring health care costs, Dr. Sung said.
Edward Manno, MD, head of neurocritical care at the Cleveland Clinic, concurred with that assessment, while voicing concerns over “cost that goes beyond simple dollars and cents.” Family members may lose additional time off from work and incur further emotional toll from sitting by the bedside for a longer duration, while witnessing their loved one undergo invasive tests that are unlikely to affect the outcome.
“The conflict is at a number of levels,” said Dr. Manno, former chairman of AAN's Neurocritical Care Section. “There's a conflict for the patient. Most of the time, he or she can't speak for himself or herself. And there's a conflict for society, the patient's family and caregivers — all the way across the board.”
In many cases, a resolution emerges as a physician spends time with the family “to get a sense of what this person was like,” Dr. Manno explained. “What kind of man was he? What kind of woman? What did they enjoy in life? How were they 10 years ago? And what was valuable to that individual?”
The answers tend to reveal how vibrant and independent the patient once was, and how much he or she cherished pursuing an active career, family life, and hobbies. After hearing these personal accounts, Dr. Manno offers an overview of the patient's plight. If a brain hemorrhage has occurred, for example, he specifies its size and location before advising loved ones on what they can expect in the near future. The possible outcomes range from dying within days to surviving in a severely incapacitated state.
To involve the family as “a surrogate” in decision-making, he asks how the patient would want to proceed if he or she were alert and could participate in this discussion, knowing that life would never be the same again. “In the vast majority of those cases, you can work through the process with the family and the caregivers,” Dr. Manno told Neurology Today in a telephone interview. “Now, in some situations, there are family disagreements. And when there is consensus, sometimes it's all about quantity of life versus quality of life.”
A contentious situation may call for tapping the expertise of the hospital's ethics committee, consisting of personnel skilled in conflict resolution and end-of-life care. Members of this team could include a chaplain, social worker, nurse, or psychiatrist. When a patient's family continues to insist amid nearly impossible odds, Dr. Manno responds that “we will make every effort to accomplish these goals.”
From experience, he said, he has found that “the picture often becomes clear with time,” and it's important to let the family absorb the reality of their loved one's predicament. “I also tell families, ‘Why don't we just let the dust settle here and allow you guys to come to grips with this?’”
Often, as it becomes evident that there isn't any progress in the patient's condition, Dr. Manno said, “the family will come to that conclusion by themselves.”