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Shared Decision-Making: How to Involve Patients in Their Own Neurological Care

Kreimer, Susan

doi: 10.1097/01.NT.0000432683.01171.34
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A new study found that primary care physicians tended to not consult patients about their treatment options. Neurologists discuss their strategies for sharing decisions about therapies with their patients.

Primary care physicians are not consistently consulting with patients in discussions and decisions about common tests, medications, and procedures, according to a survey published in the May 27 online edition of JAMA Internal Medicine.

Among their findings, physicians consulted more on decisions regarding surgical procedures, for example, than decisions about cancer screening or about two common long-term medications for cardiac risk reduction.

How well do neurologists do with shared decision-making? The survey didn't include neurologists, but Neurology Today asked AAN members to elaborate on their own strategies for discussing treatment options with their patients.

Lisa M. Shulman, MD, professor of neurology at the University of Maryland School of Medicine, noted that the survey results showed that decision-making was most patient-centered for the invasive, elective surgical procedures and least patient-centered for the non-invasive, preventive measures. “These data raise the question of whether shared decision-making is equally relevant for all types of health care decisions,” she said.

In her view, it is optimal to routinely involve patients in their own neurological care. Evaluating the pros and cons of medical management can span the gamut of whether to introduce pharmacologic treatments versus surgical interventions, which medication(s) to select, and whether to initiate physical therapy or to consider home health care or hospice, said Dr. Shulman, a movement disorders specialist and editor of the Neurology Now patient book series, published jointly by the AAN and Oxford University Press.

“Evidence shows that patients with more confidence in managing their condition have better outcomes,” she said. “The bottom line is that our patients need to make decisions to manage their medical condition every day on their own.”

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How does that play out when patients present with cognitive or behavioral changes, or a combination of both? Jason Karlawish, MD, professor of medicine, medical ethics, and health policy at the University of Pennsylvania's Perelman School of Medicine, said input from a patient's family becomes paramount in managing dementia when someone is exhibiting agitation and disruptive behavior. The outbursts make it difficult for health providers to render care.

“There are some patients in whom pharmacotherapy may be necessary,” Dr. Karlawish said. “In these cases, the neurologist has to engage the family in a candid discussion of the uncertainties over the benefits of these medications and the risks — some of which are more than minimal — and the need for careful follow-up.”

To help a loved one weigh the increased risk of falls and death with antipsychotic medication, Dr. Karlawish may say, “Some families see these risks as worth the potential benefit of reduced agitation; others don't. What about you? What do you think?” After engaging in an open dialogue, he is comfortable with the choice that the family makes for the patient.

“Simple questions to the patient and family such as ‘What's a typical day?’ open up deep and intimate conversations about what matters — and what should matter in the care of the patient,” Dr. Karlawish said.



Adam Kelly, MD, assistant professor of neurology at University of Rochester Medical Center in New York, said the presence of aphasia, neglect, or other neurological symptoms in stroke patients also makes it necessary to discuss matters with family members “or other surrogate decision-makers, which adds another layer of complexity.”

In such cases, Dr. Kelly aims to ascertain that “a surrogate” is well versed in the risks, benefits, and expected outcomes of the available options. “He or she should be making a decision as the patient would want, not necessarily the decision the surrogate would want, in the same circumstances,” said Dr. Kelly, who is also chief of neurology and director of the New York State Primary Stroke Center at Highland Hospital in Rochester, N.Y.

Although some treatments are considered “standard of care” for stroke patients, a neurologist should mention the potential risks as well as benefits. For example, in considering anticoagulation for stroke prevention, the risk of bleeding should be communicated, while assuring that a reduction in stroke risk is more likely, Dr. Kelly said.

“Many patients will hear that you are considering prescribing a blood-thinning medication and say, ‘I know someone who was on that and they had significant bleeding problems.’” Dr. Kelly recounted. In these situations, “it's important to explore what the patient's specific concerns are, explain the rationale for treatment, and reiterate the risks and benefits.”

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Brian Silver, MD, associate professor of neurology at Brown University's Warren Alpert Medical School, approaches shared-decision by presenting data from randomized controlled trials and high-quality prospective studies, highlighting the potential shortcomings of this information, and gauging the patient's preference. In the event of asymptomatic carotid stenosis, a patient may wonder if an operation is necessary.

To address this question, Dr. Silver summarizes the research data and emphasizes absolute differences rather than relative differences. He discusses estimated surgical risk and points out how recent studies suggest a narrowing gap in outcomes between patients receiving medical therapy and those undergoing surgical treatment. Then he inquires if the patient understood, and what his or her preference would be. “If they ask me what I would do if it were me, I tell them,” Dr. Silver said. “If they ask me to make the decision, which happens quite often, then I do.”



Dr. Silver also follows this approach for patients who have suffered a stroke in the setting of atrial fibrillation, raising the issue of whether they should take antiplatelets or anticoagulants. He calculates the CHADS2 score and estimates an individual's annual risk of recurrent stroke in three different scenarios — without treatment, with antiplatelet treatment, and with anticoagulant treatment.

“If, for example, the annual risk without treatment is 10 percent, then I estimate an annual risk of 8 percent with antiplatelets — a 20 percent reduction based on the literature — and 4 percent with warfarin — a 60 percent reduction based on the literature,” he said. “Because there are newer anticoagulants, I discuss those medications as well, and highlight the pros and cons of treatment relative to warfarin. I then estimate a major bleeding risk with antiplatelet treatment (typically <1 percent per year) versus anticoagulants (1-2 percent per year).”

Dr. Silver acknowledged the approach can be cumbersome, and so he will also present the information visually in a chart showing the risk and benefits of tPA (tissue plasminogen activator) in acute stroke, for example. This visual aid highlights the broad range of outcomes with and without treatment.

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James L. Bernat, MD, professor of neurology and medicine at Dartmouth's Geisel School of Medicine and a member of Neurology Today's editorial advisory board, said that the extent of shared decision-making varies depending on the nature of the illness. For patients with a chronic condition such as Parkinson's disease, the course of treatment tends to proceed along the usual contemporary model of patient-centered informed consent.



“Patient preference does not play as large of a role as in end-of-life decisions in amyotrophic lateral sclerosis [ALS], and most patients defer specific medication recommendations to their neurologist,” said Dr. Bernat, who has a longstanding interest in neuroethics and has written extensively about how to incorporate shared decision-making into patient-centered care. At the opposite end of the spectrum, “end-of-life care in ALS provides the best example of true shared decision-making. Here, gaining a clear understanding of the values of the patient is essential to determine treatment.”

For instance, some patients in the late stages of ALS request tracheal positive-pressure ventilation when other measures to treat respiratory muscle weakness become ineffective. In contrast, other patients in this predicament opt for palliative care because they choose not to stay alive with a ventilator's assistance. A neurologist cannot dictate this choice; only a patient's wishes can, Dr. Bernat said.

What a neurologist may do, however, is “educate the patient about treatment options and try to explain what life would be like on a ventilator.” This could entail noting the availability of portable, wheelchair-contained ventilators and scarves worn around the neck to hide tracheostomy intubation, he said. “But ultimately, whether to receive this life-sustaining treatment is the patient's decision, which the neurologist should respect.”

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•. Fowler FJ Jr., Gerstein BS, Barry MJ. How patient centered are medical decisions? Results of a national survey. JAMA Intern Med 2013; E-pub 2013 May 27.
    •. Neurology Today book review: The art of making Medical decisions: The tension between evidence- and preference-based medicine:
      © 2013 American Academy of Neurology