Neuropalliative Care

Neuropalliative Care

PART I

1st Edition - August 31, 2022

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  • Editors: Janis Miyasaki, Benzi Kluger
  • Hardcover ISBN: 9780323850292
  • eBook ISBN: 9780323850308

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Description

Neuropalliative Care, Part One, Volume 190 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.

Key Features

  • Summarizes research in neuropalliative care
  • Identifies current practices in different geographic regions
  • Provides best practices for specific neurological disorders and patient populations
  • Includes advanced care planning

Readership

Clinical neurologists

Table of Contents

  • Cover image
  • Title page
  • Table of Contents
  • Copyright
  • Handbook of Clinical Neurology 3rd Series
  • Foreword
  • Preface
  • Contributors
  • Section 1: Neuropalliative care as a new field
  • Chapter 1: Key concepts and opportunities
  • Abstract
  • Key Concepts in Neuropalliative Care
  • Opportunities in Neuropalliative Care
  • Conclusions
  • References
  • Further reading
  • Chapter 2: Neuropalliative care: Defining an emerging field
  • Abstract
  • Palliative Care—An Introduction
  • History of the Development of Palliative Care
  • Worldwide Developments
  • Neurologic Palliative Care
  • Effectiveness of Palliative Care for Neurologic Patients
  • Models of Neurologic Palliative Care
  • Conclusions
  • References
  • Chapter 3: The neuropalliative multidisciplinary team—Members and their roles
  • Abstract
  • Introduction
  • What Constitutes a Multidisciplinary Team?
  • Barriers to the Formation of a Neuropalliative Care MDT
  • Neuropalliative Care: Drawing on a Multidisciplinary Tradition
  • Role of the Members of the Multidisciplinary Neuropalliative Team
  • Ethics and the Bioethicist
  • Care of the MDT
  • MDTs as Models and Agents of Education
  • Telehealth and the Neuropalliative MDT: The Impact of COVID-19
  • General Recommendations
  • Conclusion
  • Acknowledgments
  • References
  • Chapter 4: Delivery models of neuropalliative care
  • Abstract
  • Overview
  • Primary vs Specialist Palliative Care
  • Neuropalliative Care Delivery
  • End-of-Life Palliative Care
  • Gaps in Knowledge and Future Directions
  • Conclusion
  • References
  • Chapter 5: International models of neuropalliative care
  • Abstract
  • International Healthcare Models
  • Palliative Care Provision Worldwide
  • Possible Models for Neuropalliative Care
  • References
  • Chapter 6: What palliative care physicians wish neurologists knew
  • Abstract
  • Suffering Comes in Many Forms: Pain Is Not Just Physical
  • Challenging Emotions and Spiritual Distress
  • Palliative Care Is Not Just Hospice
  • Palliative Care Is Not Just for Specialists: The Concept and Practice of Primary Palliative Care
  • Palliative Care Interventions May Improve Patient and Care Partner Outcomes
  • The Importance of Continuity of Neurologic Care Alongside Specialist Palliative Care
  • Managing the Total Pain of Serious Illness Requires Teamwork
  • Approaching Prognostic Uncertainty
  • Self-care Matters
  • Creating Wins Even When Cure Is Not Possible
  • Conclusion
  • References
  • Chapter 7: What neurologists wish palliative care physicians knew
  • Abstract
  • “Staging” and Prognosis in Neurologic Disease
  • Usually No Transition From Curative to Palliative Care in Neurology
  • Many Opportunities for Palliative Care in Neurologic Disease
  • What Is Different About Patients and Families Living With Neurologic Disease?
  • Unique Symptoms That May Affect Patients With Neurological Diseases
  • Reasons to Avoid Dopamine Blocking Agents
  • Levels of Consciousness Red Flags (Unresponsiveness Does Not Mean Imminent Death)
  • Artificial Nutrition
  • Facility and Hospice Placement
  • Conclusion
  • References
  • Chapter 8: When to initiate palliative care in neurology
  • Abstract
  • Introduction
  • Which Patients With Neurologic Conditions Will Benefit From Initiation of Palliative Care?
  • What Aspects of Neurologic Illness Are Most Amenable to Neuropalliative Care?
  • When to Initiate Neuropalliative Care?
  • References
  • Section 2: Goals of care and advance care planning, prognostication, and end of life
  • Chapter 9: Advance care planning in neurologic illness
  • Abstract
  • Introduction
  • ACP Across Neurologic Diseases
  • ACP in Dementia
  • Clinical Trials of ACP Interventions for Dementia
  • Key Components of ACP in the Context of Dementia
  • Dementia-Specific Barriers to ACP
  • Opportunities to Improve ACP in Neurologic Care
  • Acting on ACP: Ethical Considerations
  • Priorities for Future Research
  • Conclusion
  • References
  • Chapter 10: Prognostication in brain tumors
  • Abstract
  • Introduction
  • Barriers to Clear Communication in BT
  • EOL Quality of Care and Prognostication in Brain Tumor Patients
  • Advance Care Planning
  • Ethical Issues
  • Surrogate Decisions
  • End-of-Life Issues in Brain Tumor Patients
  • End-of-Life Decision-Making Process
  • End-of-Life Symptoms and Treatment
  • Wish to Hasten Death
  • Which Model of Palliative Care for Brain Tumor Patients?
  • Conclusion
  • References
  • Chapter 11: Prognostication in dementia
  • Abstract
  • Introduction
  • Natural History
  • Scales to Assess Severity of Dementia
  • Current US Medicare Hospice Guidelines
  • Discussing Prognosis in Advanced Dementia With Surrogates
  • Summary
  • References
  • Further reading
  • Chapter 12: Prognostication in neurology
  • Abstract
  • Introduction
  • The Importance of Prognosis
  • Formulating a Prediction
  • Communicating Effectively About Prognosis
  • Addressing Barriers to Communicating Prognosis
  • Future Research
  • References
  • Chapter 13: End-of-life and hospice care for neurologic illness
  • Abstract
  • Introduction
  • Hospice Origins and Development
  • Hospice Structural Concepts
  • Hospice Clinical Concepts
  • Symptom Management at End of Life
  • Effectiveness of Specialized End-of-Life Care and Hospice Care Models
  • Challenges to the Current Hospice Model and Future Directions
  • Conclusion
  • References
  • Chapter 14: Responding to requests for hastened death in patients living with advanced neurologic disease
  • Abstract
  • Introduction
  • Supportive Conversations About Desire to Hasten Death
  • What if Legally Available, but Patient doesn’t Qualify?
  • Considerations in Neurology Patients, Where Cognitive or Physical Capabilities Could Slowly Deteriorate Over Time
  • Caring for Patients Who Are Approved and Waiting for Hastened Death
  • Self-Care of Clinicians/Providers
  • Principles That Underlie an Ethical Response to Requests for Hastened Death
  • Vulnerable Populations
  • Brief Summary of Jurisdictions Where Hastened Death Is Legal
  • Conclusion
  • References
  • Index

Product details

  • No. of pages: 260
  • Language: English
  • Copyright: © Elsevier 2022
  • Published: August 31, 2022
  • Imprint: Elsevier
  • Hardcover ISBN: 9780323850292
  • eBook ISBN: 9780323850308

About the Series Volume Editors

Janis 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 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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