Neuropalliative Care

Part II

1st Edition, Volume 191 - January 3, 2023
Imprint: Elsevier
Editors: Janis M. Miyasaki, Benzi M. Kluger
Language: English
Hardback ISBN:
9 7 8 - 0 - 1 2 - 8 2 4 5 3 5 - 4
eBook ISBN:
9 7 8 - 0 - 3 2 3 - 8 6 0 0 8 - 6

Neuropalliative Care, Part Two, Volume 191 covers a type of care that is given when there is no cure for the neurological disorder and the patient is in distress. It provid… Read more

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Neuropalliative Care, Part Two, Volume 191 covers a type of care that is given when there is no cure for the neurological disorder and the patient is in distress. It provides a scholarly background of neuropalliative care, from historic underpinnings to its practice in various geographical regions, along with best practices for specific neurological disorders. It covers the work of multi or interdisciplinary teams whose care is intended to make the patient as comfortable as possible and includes partners and families in treatment plans.

Cover
Title page
Table of Contents
Copyright
Handbook of Clinical Neurology 3rd Series
Foreword
Preface
Contributors
Section 3: Neuropalliative care in specific settings
Chapter 1: Palliative care after stroke survival
Abstract
Introduction
Symptom Management
Goals-of-Care Conversations
Family Needs
End-of-Life Care and Hospice
Research Directions
References
Chapter 2: Palliative care approaches to acute stroke in the hospital setting
Abstract
Introduction
Stroke Background
Communication in the Acute Stroke Period
Symptom Management
Neuropsychiatric Complications
Prognostication
Advance Care Planning and Stroke
Conclusion
References
Chapter 3: Outpatient neuropalliative care
Abstract
Introduction
Definition and Scope of Neuropalliative Care
Need for Outpatient Neuropalliative Care
Modes of Delivery for Outpatient Neuropalliative Care
Models of Outpatient Neuropalliative Care
Patient Selection and Timing of Outpatient Neuropalliative Care
Components of a Neuropalliative Care Visit
Communication About Serious Illness: Cultivation of Prognostic Awareness and Exploration of Goals and Values
Advance Care Planning
Facilitating Adaptive Coping
Symptom Management
Spasticity and Muscle Cramping
Dyspnea
Constipation
Fatigue
Sleep Disturbance
Speech and Swallowing Issues
Cognitive and Behavioral Changes
Mobility Changes
Caregiver Needs Assessment and Care Coordination
End-of-Life Care
Conclusions
References
Chapter 4: Community-based neuropalliative care
Abstract
Definition of Community-Based Neuropalliative Care
Evidence for Community-Based Palliative Care in Mixed and Nonneurologic Populations
Evidence for Community-Based Neuropalliative Care in the Home for Specific Neurologic Illnesses
Evidence for Nursing Home-Based Neuropalliative Care for Specific Neurologic Illnesses
The Impact of the COVID-19 Pandemic on the Delivery of Community-Based Neuropalliative Care
Challenges, Gaps, and Future Directions in the Provision and Study of Community-Based Neuropalliative Care
References
Section 4: Neuropalliative care for specific conditions
Chapter 5: Palliative care in brain tumors
Abstract
The Role of Palliative Care in Neuro-Oncology
Brain Tumors: An Overview
Conclusion
References
Chapter 6: Palliative care for people with dementia
Abstract
Introduction
Anticipating Palliative Care Needs
Common Palliative Care Needs
Palliative Care for People with Young Onset Dementia
End-of-Life Care
Models of Palliative Care for People With Dementia
Residential Care Dementia Palliative Care
Acute Hospital Dementia Palliative Care
Conclusions
References
Chapter 7: Palliative care in Parkinson disease and related disorders
Abstract
Disease Burden
Treatment of Nonmotor Symptoms
Treatment of Motor Symptoms
Advance Care Planning
End-of-Life Care
Models of Palliative Care in PD and Related Disorders
Conclusions
References
Further reading
Chapter 8: Palliative care in multiple sclerosis
Abstract
Introduction
Symptoms
Palliative care: General principles
Palliative Care: Description of the Intervention
Palliative Care in Neurological Diseases
Dynamic Model in Palliative Care
Screening for Palliative Care Needs
Estimate Prognosis in MS
Palliative Care in Multiple Sclerosis
Interventions and Trials in Multiple Sclerosis
Communication Considerations in Multiple Sclerosis
End of Life
Conclusion
References
Chapter 9: Palliative care principles in ALS
Abstract
Introduction
Heterogeneity of Disease
When to Introduce Advance Care Planning and Goals-of-Care Discussions
Models of Providing Palliative Care
Respiratory Support
Nutrition Support
Symptom Management
Medication Review
Psychosocial Issues
Advance Care Planning
End of Life
Invasive Ventilation and NIV Withdrawal
Assisted Dying
Organ Donation
Bereavement Support
Future Studies
Conclusion
References
Chapter 10: Pediatric neuropalliative care
Abstract
Introduction
Defining the Population
Communication Skills
Symptom Management
End of Life Care
Limitations and Future Directions
Disclosures
References
Chapter 11: Neonatal neuropalliative care
Abstract
Introduction
Family-Centered Communication
Prognostication and Decision-Making
Pain and Symptom Management
Care at the End of Life
Considerations of Culture, Spirituality, and Practice Location
Research Gaps and Priorities
Summary
Disclosures
References
Section 5: Psychosocial support, ethics and education
Chapter 12: Care partner support
Abstract
Introduction
Concepts in Care Partnering
The Stress Process Model for Care Partners in Palliative Neurology
Care Partner Considerations by Disease
Interventions, Supports, and Resources for Care Partners in Palliative Neurology
Future Research Priorities
Conclusions
References
Chapter 13: Spirituality and spiritual distress in neurologic illness
Abstract
Introduction
Definitions of Key Terms
Spirituality in Neurologic Disease for Patients, Caregivers, and Families
Clinical Implications of Spirituality in Neurologic Illness
Limitations and Future Directions
Conclusion
References
Chapter 14: Neurology ethics at the end of life
Abstract
Introduction
Considerations of Capacity and Authority for Medical Decision Making
Considerations of Religious and Cultural Influence on Neurology Ethical Analysis in EOL Medical Decision Making
Considerations of Specific Clinical Contexts in Neurology Ethics; the Law, and EOL Medical Decision Making
Conclusion
References
Chapter 15: Education in neuropalliative care
Abstract
Background
Primary Palliative and Neuropalliative Care Education for Neurologists
Specialty Neuropalliative Care Education
Career Tracks in NPC
Becoming a Leader in Neuropalliative Care Education
Educational Needs in Neuropalliative Care and Future Opportunities
Conclusion
References
Web References
Index

Janis M. Miyasaki

Janis M. Miyasaki, MD, MEd, FRCPC, FAAN, is a graduate of the University of Toronto medical school, neurology residency program, and a movement disorders fellowship under Anthony Lang, MD, FAAN. From 1999-2013, she was a faculty member at the University of Toronto assuming the roles as Director of Education for Neurology for four hospitals, ward chief, Physician-In-Chief, Toronto Western Hospital, Associate Director of the Movement Disorders Program and other leadership roles. In 2007, Miyasaki initiated the first neurologist-led Palliative Care for movement disorders in the world. Since 2014, Miyasaki joined the University of Alberta and is currently the Director of Parkinson and Movement Disorders and Co-Director of the Complex Neurologic Symptoms Clinic, Neuropalliative Care. In 2019, she received the Parkinson Alberta Association award for outstanding contribution to patient care, education, and research . She is currently the Vice President of the American Academy of Neurology and the Director of Neurology, Department of Medicine and Zone Section Chief, Neurology, Northern Alberta. She is an active clinical researcher, holding grants, mentoring young researchers in several spheres of movement disorders, neuropalliative care, physician wellness, and equity.

Affiliations and expertise

University of Alberta, Institute of Neuroscience and Mental Health, Edmonton, AB, Canada

Benzi M. Kluger

Dr. Kluger is the Julius, Helen and Robert Fine Professor of Neurology and the founding director of the Neuropalliative Care Service and Palliative Care Research Center at the University of Rochester. He is also the founding President of the International Neuropalliative Care Society (INPCS) and a co-creator of the Education in Palliative and End-of-life Care Neurology (EPEC-N) program. He is a pioneer in the application of palliative care approaches to persons living with neurologic illness and has made notable contributions to outpatient models of care, the education of neurologists, and clinical research. His research has been funded by the National Institutes of Health, the Patient Centered Outcomes Research Institute, the Michael J. Fox Foundation, the Davis Phinney Foundation, and the Department of Defense. When not at work, he enjoys spending time with his family, anything outdoors, music, writing and professional wrestling. You can follow his non-academic writing on medical misinformation, spirituality and other topics at benzikluger.com.

Affiliations and expertise

University of Rochester, Departments of Neurology and Medicine, Rochester, NY, USA

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