Neurologists as primary palliative care providers

Abstract

Purpose of review: To present current knowledge and recommendations regarding communication tasks and practice approaches for neurologists as they practice primary palliative care, including discussing serious news, managing symptoms, aligning treatment with patient preferences, introducing hospice/terminal care, and using the multiprofessional approach. Recent findings: Neurologists receive little formal palliative care training yet often need to discuss prognosis in serious illness, manage intractable symptoms in chronic progressive disease, and alleviate suffering for patients and their families. Because patients with neurologic disorders often have major cognitive impairment, physical impairment, or both, with an uncertain prognosis, their palliative care needs are particularly challenging and they remain largely uncharacterized and often unmanaged. Summary: We provide an overview of neuropalliative care as a fundamental skill set for all neurologists. Neurol Clin Pract 2016;6:40-48 P alliative care is specialized medical care for people with serious illness. With few curative options in neurology, most patients need to learn to live with their disease for a long time before they die with-or from-that disease. The newly proposed concept of distinguishing primary palliative care (skills that all clinicians should have) from specialist palliative care (palliative care specialty skills) 1,2 is particularly relevant to neurology, in which palliative and neurologic care needs coexist.In this review, we will follow 2 patients and their families through their illness trajectory (1 with amyotrophic lateral sclerosis (ALS) in the outpatient setting and 1 with severe stroke in the inpatient setting) and discuss proposed communication tasks. Rather than providing a comprehensive review of neuropalliative care, this article highlights some common issues faced by neurologists and aims to alert both neurologists and non-neurologists to the variety of palliative care issues in daily neurologic practice. For readers wanting a more in-depth and diseasespecific review of palliative care, we refer them to several recent reviews.

Integration of a palliative care specialist in an amyotrophic lateral sclerosis clinic: Observations from one center

“…We identified patient‐specific and disease‐specific triggers for patients most likely to benefit from specialty‐level palliative care (Table ). These triggers were adapted from other reports and based on our observations, but further study would help to determine the sensitivity and specificity of these triggers and identify additional patients who may benefit from specialty‐level care.…”

“…Palliative care is an important aspect of the management of patients with amyotrophic lateral sclerosis (ALS). In many ALS clinics, palliative care is delivered by the primary ALS provider in an approach termed “primary palliative care.” However, some patients may require more intensive palliative care and benefit from the skill set of a palliative care specialist . In other fields, involvement of a dedicated palliative care specialist has led to improved outcomes, including quality of life, mood, and longevity …”

Palliative care and the Indian neurologist

“…The NURSE (Name, Understand, Respect, Support, and Explore emotions) mnemonic can be used as a template for addressing the emotional content of these discussions. [11] However, empathetic communication can never be standardized. Overscripting carries the risk of detracting from both real and perceived empathy, especially if a disconnection between verbal and nonverbal communication creates a discomfiting “uncanny valley.”[12] Indications of serious illness communication (SIC) are shown in Table 3.…”

Right Brain: Breaking bad news

“…7 Gaps in current training and opportunities for growth have been recently identified in neurology trainees' understanding of communication and palliative care principles. 2,9 For medical students, the neurology clerkship represents a potential opportunity for clinical communication skills training. The Undergraduate Education Subcommittee of the American Academy of Neurology recognized this and recently outlined a longitudinal model for the incorporation of the ACGME core competencies into a neuroscience curriculum.…”

“…These were missed opportunities for me to gain new skills, identify bad habits, and engage in the literature around communication. As neurologists join the science of understanding and improving communication with patients and families, 2 we must consider how to intentionally incorporate evidence-based communication skills training into our education models.…”