Neuropalliative Care

PART I

1st Edition, Volume 190 - August 31, 2022
Editors: Janis M. Miyasaki, Benzi M. Kluger
Language: English
Hardback ISBN:
9 7 8 - 0 - 3 2 3 - 8 5 0 2 9 - 2
eBook ISBN:
9 7 8 - 0 - 3 2 3 - 8 5 0 3 0 - 8

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 provid… Read more

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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.

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

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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