Neurologists Add Nuance to Palliative Care Definition

By Jonathan Springston, Editor, Relias Media

Although palliative care might be associated only with providing soothing comfort to patients near the end of life, the authors of a new position paper from the American Academy of Neurology urge neurologists to expand their understanding.

“Palliative care is a term that has become synonymous with hospice, but it is actually a much broader practice,” Lynne P. Taylor, MD, of the University of Washington and paper co-author, said in a statement. “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 lives with symptom control. This position statement outlines how clinicians, physicians, and advanced practice providers should provide palliative care for people living with neurologic disease so they can have the best quality of life possible.”

By communicating early and often with patients and families, Taylor and colleagues argued clinicians can help all parties understand a diagnosis and set care goals well before an emergency or before the patient can no longer make independent decisions.

“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,” the authors wrote. “Goals of care conversations should take place at routine intervals and [be] triggered by sentinel events unique to each disease process. Addressing goals of care as routine may destigmatize conversations around the potential for worsening illness and help patients and families be more prepared to make decisions when clinical deterioration occurs.”

Taylor and colleagues also went into detail about ethical considerations for neuropalliative care in specific neurologic disorders. For example, under a subsection on stroke, the authors offered this: “Those experiencing an acute stroke will benefit from serial assessments of recovery, a best-case/worst-case prognostic framework, time-limited trials of three to six months when in line with goals of care, efforts to enhance communication ability, and support for surrogates when capacity is lost.”

Taylor and colleagues did address end-of-life care situations, including refusal or withdrawal of treatment and even added a note on “lawful physician-hastened death.”

“As the field of palliative care has developed, the uniqueness of neurologic disease is a natural fit for its own approach to palliative care,” the authors concluded. “As the field of neuropalliative care evolves, we must make a concerted effort to not only recognize the obligation that all neurologic clinicians have to attend to palliative needs, but also learn to identify when challenging cases will benefit from the assistance of specialists in the field.”

For more on this and related subjects, be sure to read the latest issues of Critical Care Alert, Medical Ethics Advisor, and Neurology Alert.