Alan C. Carver

Symptom assessment and management

This article reviews how to assess and manage several symptoms commonly encountered by neurologists who care for patients with advanced illness. Scientifically validated guidelines are reviewed and practical advice is offered on how to manage pain, nausea and vomiting, dyspnea, and respiratory secretions at the end of life. The role of the neurologist as a provider of end of life care is discussed including suggestions for communicating with patients and families. This article concludes with a review of when sedation may be offered within the purview of good palliative care to patients who are imminently dying.

Palliative care in neurology : An overview

This article defines the evolving role of the neurologist as a provider of palliative care. As neurologists care for chronically and critically ill, dying patients, and individuals whose diseases are incurable at the time of diagnosis, clinical competence requires expertise in the principles and practice of palliative medicine. Multiple studies suggest that despite available guidelines many patients with neurological disease suffer from pain, dyspnea, and other symptoms at or near the end of life. Recommendations from the American Academy of Neurology and Institute of Medicine are provided and the many ongoing educational efforts aimed at closing the existing gap in knowledge and improving patient care are reviewed.

Terminal care and bereavement

Care of patients at the end of life requires a high level of clinical vigilance, compassion and skill. The involvement of the patients primary neurologist in end-of-life care and into bereavement can be an invaluable comfort to the patient and family. An understanding of the techniques for assessing and anticipating patient and family needs and knowledge of the resources available is essential if the neurologist is to provide guidance in their care.

Schwannomatosis/neurofibromatosis type 2 associated multiple schwannomas visualized on FDG-PET/CT.

We present a patient with neurocutaneous syndrome, status prior resections for cervical schwannomas and median as well as radial nerve schwannomas. This is a 57-year-old female with neurocutaneous syndrome presenting at 42 years of age with unilateral vestibular schwannoma. Genetic testing was negative but on clinical criteria neurofibromatosis-2 (NF-2) or schwannomatosis were considered.1 She underwent FDG PET/CT 85 min after intravenous injection of 11.3 mCi (418.1 MBq) FDG, for recent onset of severe left back pain with suspected cauda equina compression. Whole-body FDG PET/CT showed multiple FDG avid soft tissue foci overlying the sciatic nerve, consistent with multiple schwannomas (Fig. 1). It also demonstrated heterogenous uptake corresponding to multiple lesions visualized on MRI (Fig. 2).

Neuropalliative care: Priorities to move the field forward

Neuropalliative care is an emerging subspecialty in neurology and palliative care. On April 26, 2017, we convened a Neuropalliative Care Summit with national and international experts in the field to develop a clinical, educational, and research agenda to move the field forward. Clinical priorities included the need to develop and implement effective models to integrate palliative care into neurology and to develop and implement informative quality measures to evaluate and compare palliative approaches. Educational priorities included the need to improve the messaging of palliative care and to create standards for palliative care education for neurologists and neurology education for palliative specialists. Research priorities included the need to improve the evidence base across the entire research spectrum from early-stage interventional research to implementation science. Highest priority areas include focusing on outcomes important to patients and families, developing serious conversation triggers, and developing novel approaches to patient and family engagement, including improvements to decision quality. As we continue to make remarkable advances in the prevention, diagnosis, and treatment of neurologic illness, neurologists will face an increasing need to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body. This article outlines opportunities to improve the quality of care for all patients with neurologic illness and their families through a broad range of clinical, educational, and investigative efforts that include complex symptom management, communication skills, and models of care.