Training is needed for serious illness communication.

By Lynne Jeter 

Neurologists provide palliative care to people living with life-altering neurologic illnesses not just at the end of life but throughout the course of a disease, improving their lives with symptom control…. Lynne P. Taylor, MD, University of Washington School of Medicine, and a fellow of the American Academy of Neurology

The task: to support neurological patients by focusing on improving their quality of life through symptom control, both physical and psychological, instead of the diagnosis and treatment of their underlying diseases.

Updated guidance may be found in a new position paper, “Clinical Guidance in Palliative Care,” developed by a joint committee of the American Academy of Neurology (AAN), American Neurological Association and Child Neurology Society, published March 8 in Neurology. It’s a long-awaited revision to the AAN 1996 position statement.

The revised position statement is “well-timed,” said Kate T. Brizzi, MD, a neurologist at Massachusetts General Hospital with hospice and palliative care expertise.

“In the last several years, I’ve witnessed a significant increase in trainee interest in the field, and there’s growing recognition of how a palliative care approach can improve patient care,” said Brizzi.

The position paper states that given the high prevalence of life-altering neurologic conditions, neurologists need training in serious illness communication. This dire need is reflected in the 42 percent of respondents in 49 neurology residency programs admitting their dissatisfaction with palliative care education.

“Necessary communication skills include delivering bad news, assessment, explaining prognosis, assisting patients and families in the process of decision-making, and setting limits when certain types of care are objectively futile,” according to the report. “The familiarity that neurologists have with these tough conversations supports the argument that all neurologists should attend to their patients’ palliative needs and be able to recognize when the demands of the situation require assistance from palliative care specialists.”

Lynne P. Taylor, MD, a professor at the University of Washington School of Medicine in Seattle and an AAN fellow, pointed out "neurologists provide palliative care to people living with life-altering neurologic illnesses not just at the end of life but throughout the course of a disease, improving their lives with symptom control."

Many neurologic illnesses such as stroke, postanoxic coma, traumatic brain injury, encephalitis, and demyelinating disease inherently involve unknown degrees of acute survival, functional recovery, or chance of recurrence, according to the paper.

“Neurologists often cite prognostic uncertainty as the reason they feel uncomfortable discussing decision-making with patients and families, but the literature supports that patients desire prognostic information even when prognosis is uncertain and appreciate when their physicians disclose the presence of that uncertainty. Discussions of prognosis are critical to facilitating disease understanding and empowering patients and surrogates in the decision-making process to achieve care consistent with established goals of care,” the report continues.

When they have a longstanding relationship with a patient, or when withdrawal bias is present, clinicians run the risk of overestimating or underestimating prognoses and “must remember to use evidence-based estimates and explore personal biases when offering prognostic assessments,” according to the paper. “The statistical language clinicians use is easily misinterpreted by patients and their families,” particularly among lower-educated patient families.

Established strategies for decision-making in the setting of prognostic uncertainty include the best/worst case scenarios and most likely functional outcomes for a particular illness. To improve accuracy and flexibility, the paper suggests framing predictions of longevity in vague time intervals rather than specific time frames, adding that routinely addressing goals of care “may destigmatize conversations around the potential for worsening illness and help patients and families be more prepared to make decisions when clinical deterioration occurs.” 

Challenges surface when the prognosis is uncertain. In that case, time-limited trials may be suggested to allow maximum recovery before further decisions are made. “A prolonged period of aggressive life-prolonging care should not be pursued if the surrogate is confident that this type of care would not be in line with the patient's preferences, even if a degree of recovery is believed to be possible.

“When treatments are physiologically futile, it’s the clinician's responsibility to remove the burden of decision-making entirely by explaining that such interventions will not be offered,” noted the authors, who concurred “it’s counter to the principle of nonmaleficence to offer such treatments, as they may cause harm in the absence of potential benefit. Futility exists in the context of all medical specialties; a specific example in the setting of neurologic disease includes cardiopulmonary resuscitation in the setting of cardiac arrest due to irreversible herniation.”

The paper glosses over the role of the neurologist in “lawful physician-hastened death (LPHD).”

Some states –and Washington, DC – now allow neurologists to approve requests for LPHD for adult patients with serious neurologic illnesses. They include California, Colorado, Hawaii, Maine, New Jersey, New Mexico, Oregon, Vermont and Washington. Montana allows LPHD via court ruling.

The authors noted an in-depth discussion of LPHD is beyond the scope of the position paper, referring readers to a 2017 AAN position statement on the topic.

“I anticipate this will be an area of further discussion in the neurology and palliative care community,” Brizzi said, “as requests for hastened death are frequently encountered from patients with serious neurologic illness.”