ARTICLE IN BRIEF
Neurointensivists and hospitalists share their strategies for communicating with surrogates who have to decide on the course of action for critically ill patients in emergency situations. Their input comes in response to a study finding that the way clinicians communicate with surrogates influences the decisions they make for patients in need.
A critically ill patient comes in to the emergency department and a life-or-death decision has to be made: to perform CPR to save the patient's life, or not? What ultimately will shape the immediate decision a surrogate has to make for the patient in need? It turns out that the manner in which the attending physician communicates or frames the choice has more of an impact on the decision than responding to the emotional state of the surrogate decision-maker.
That is the finding of a study published online May 8 in Critical Care Medicine that observed surrogate decision-makers for critically ill patients to see whether simulated emotional states and the way clinicians framed end-of-life discussions influenced their responses. [For more details about the study design and results, see “Physician Communication in a Critical Care Setting: New Study Findings.”]
In interviews with Neurology Today, neurocritical care experts discussed their own experiences with these emergent care situations and how they frame these difficult questions with patients and surrogates.
THE PHYSICIAN'S ROLE IN THE DECISION
Eric Adelman, MD, assistant professor of neurology at the University of Michigan, who specializes in inpatient neurology and stroke, said that he always tries to first gain an understanding of a patient's overall goals for care. “Some patients prioritize survival, even in a disabled state, while others favor comfort over length of life.” But the decision is complicated, he said, in emergency situations because surrogates for critically ill patients may not always know what the patient would want. In neurologic emergencies such as acute stroke and status epilepticus, “rapid treatment has the potential to improve outcomes so there can be tension between initiating appropriate treatment [immediately] and eliciting patient preferences,” he added.
Maisha T. Robinson, MD, who completed fellowship training in Hospice and Palliative Medicine at Memorial Sloan-Kettering Cancer Center and a Neurohospitalist fellowship at Mayo Clinic, told Neurology Today that she typically begins by telling the family all of the information she has about the condition of the patient. “Then I convey what we've done so far regarding the evaluation and treatment plan, and I follow that up with where we are now — the decision point for the next step.” The hardest thing about this process in patients with neurological diseases specifically, she continued, is that there is significant prognostic uncertainty; the clinician's responsibility is to effectively communicate the clinical condition, the prognosis, and the expected outcome, in an effort to help guide the family in making the best decisions for their loved one, she said.
There is an “epidemic of futile and unnecessary and actually heartbreaking end-of-life care — people who effectively are dying and no one can bring themselves to let them have their peace and their dignity,” said Stephan Mayer, MD, professor of neurology and neurological surgery, head of the Neurocritical Care Division, and director of the Neurological Intensive Care Unit at Columbia University. Clinicians are educated to believe that patients and/or their surrogates should be the ones “calling the shots” because doctors cannot be “god-players,” and this can place a very difficult burden on the surrogate who is already emotionally distressed, he said. But, for a long time, Dr. Mayer noted that he has seen first-hand that physicians actually hold tremendous influence on the ultimate decisions made by patients' families, an observation he relays to neurologists in training.
In these scenarios, he said, the emergency department clinician must essentially act as a counselor for these individuals, meeting with them to discuss any lingering concerns. Regardless of the final decision, an important lesson Dr. Mayer has learned during his years of practice is not to feel bad about the chosen course of action: “All I can do is just try to help match up what really happens to what the patient would really want.”
MORE THAN WORDS
All of the commentators told Neurology Today that they were conscious of the way they presented a situation to family members. From experience, Dr. Robinson said she has learned that the dialogue must be fluid. “Although you often will have some idea of what to say,” she told Neurology Today, “you have to sense what the family is feeling and take that as a cue to see if they can really tolerate more information at that moment in time, or sometimes you have to come back and have more discussion later.”
Patients don't usually explicitly discuss their end-of-life preferences with the surrogate or family member ahead of time, the neurologists noted. Those patients who have discussed their preferences with family often have done so in an abstract way that may not apply to common clinical situations, Dr. Adelman pointed out. For instance, some patients tell their families, “I don't want to live with too much disability.” But it can be difficult to know how much disability a patient is willing to tolerate. “Is walking with an assistive device 'too much disability'? Is having a feeding tube due to dysphagia ‘too much disability’? Is being bedbound, but still able to interact with loved ones ‘too much disability’?” he asked.
Even when a living will exists, Dr. Mayer said, “that is not a guarantee that the family is going to take those directives and act on them… because it still comes down to interpreting the situation,” which can often be difficult. In the absence of these planning documents, Dr. Mayer said that he will ask the surrogate questions like, “Were you ever watching ‘E.R.’ or ‘CSI,’ and did your mom or dad ever say, ‘If that were me in a coma, I wouldn't want that’?” Then, for individuals who answer “No,” Dr. Mayer uses “substituted judgment.” For example, he will ask, “Perhaps you never talked about it, but now this is the reality, what do you think they would say if they could be sitting there at the head of the bed looking at themselves?”
Unfortunately, many families consider withdrawal of life support as “doing nothing,” Dr. Adelman told Neurology Today. He tries to address that concern “by emphasizing the importance we place on management of symptoms at the end-of-life. Attending to patient comfort is not ‘doing nothing’ and is an integral part of good palliative care.” Even when a DNR (do not resuscitate) is the decision that a patient would personally choose, he said that families may feel guilty withdrawing life support.
Dr. Robinson finds it helpful to present the family member or surrogate with the “best case, worst case, and most likely case scenario.” For example, she said, “the best case scenario may be for him or her to leave the hospital, go to rehabilitation, and get back to the independent status that he or she had before coming to the hospital. The worst case scenario may be that this disease process will unfortunately take his or her life. And the most likely scenario may be that he or she is going to be left with significant deficits and require 24-hour care.” This way the surrogates can have a better idea of the possible and also expected outcomes.
LISTEN UP: How do neurocritical care experts frame end-of-life discussions with surrogate decision-makers? In an interview, Maisha T. Robinson, MD, who completed fellowship training in Hospice and Palliative Medicine at Memorial Sloan-Kettering Cancer Center and a Neurohospitalist fellowship at Mayo Clinic, offers advice on this difficult topic: http://bit.ly/rCBryX.
PHYSICIAN COMMUNICATION IN A CRITICAL CARE SETTING: NEW STUDY FINDINGS
How physicians frame questions and communicate with surrogate decision-makers in the emergency department can have a significant effect on the chosen course of treatment, according to a new study in the May 8 online edition of Critical Care Medicine, which was co-authored by Amber E. Barnato, MD, MPH, and Robert M. Arnold, MD, both of the University of Pittsburgh.
The study randomized 252 participants, who had self-identified as surrogate decision-makers for a spouse or parent, to assess the relationship between “emotional arousal” and each of four different physician communication behaviors using a website. The individuals were given a hypothetical scenario where the patient in question had been admitted to the intensive care unit (ICU) and was receiving life-sustaining treatment. Those surrogates who were randomized to “emotional arousal” saw a photo of their relative and then completed two imagery exercises (each 30 seconds long) that were designed to heighten emotional attachment. The control group saw only a photo of a park and completed two short exercises that were not designed to elicit emotional response. (The full survey instrument can be viewed here: http://links.lww.com/CCM/A675.)
All of the surrogates participated in an interactive video meeting with an intensivist (an actor) who told them that the patient had a 10 percent chance of survival after CPR. The participants were then randomized to physicians who either attended to their emotions using the NURSE mnemonic — naming, understanding, respecting, supporting, and exploring emotion — and one “I wish” statement meant to sympathize with the surrogate's feelings; or to a control group where the physician did not use those statements. The decision-makers were then presented with one of each of the three different question types: “1) implying the social norm was not to choose CPR (vs. to choose CPR); 2) indicating the decision was the patient's (vs. the surrogate's); and 3) describing the alternative to CPR as ‘allow natural death (AND)’ (vs. ‘do not resuscitate [DNR]’)” to see if they influenced choices.
When the intensivist stated the social norm as not choosing CPR, fewer surrogates chose CPR (48% vs. 64%, odds ratio, 0.52 [95% CI, 0.32-0.87]). Additionally, using the words AND instead of DNR resulted in more individuals choosing not to perform CPR (49% vs. 61%, odds ratio, 0.58 [95% CI, 0.35-0.96]), they found. On the other hand, the use of “emotional arousal,” whether or not the physician attended to this emotion, and whether the decision was framed as the patient's (vs. the surrogate's) did not affect CPR choice.
Stephan Mayer, MD, professor of neurology and neurological surgery, head of the Neurocritical Care Division, and director of the Neurological Intensive Care Unit at Columbia University, said: “The take-home for neurologists is that very simple changes in the way that we use language and frame the question can actually influence what people do when it comes to end-of-life.”
Although he believes the findings are instructive, he stressed that the hypothetical nature of the analysis was not necessarily translatable: “What people really do when they are confronting end-of-life may not be what they think they are going to do.”
Maisha T. Robinson, MD, who completed fellowship training in Hospice and Palliative Medicine at Memorial Sloan-Kettering Cancer Center and a Neurohospitalist fellowship at Mayo Clinic, said that this study made some interesting points. “The article suggests that there are different ways to really frame our discussions regarding end-of-life care that may be more or less effective.” In fact, after reviewing the study, the commentators agreed that they would likely use the phrase “allow natural death” more frequently in their conversations with surrogates and caregivers.
Eric Adelman, MD, assistant professor of neurology at the University of Michigan, said that this study was a good first step, but more research is necessary to guide these end-of-life conversations. He added: “Regardless of the decisions that families and surrogates make, end-of-life conversations can be intense and the quality of a physician's communication skills can make these conversations a positive or negative experience for the patient's family.”