Neuropalliative Care: A Guide to Improving the Lives of Patients and Families Affected

309 Pages·2019·5.2 MB·English

by  Claire J. Creutzfeldt, Robert G. Holloway

Neuropalliative Care
A Guide to Improving the
Lives of Patients and Families
Afected by Neurologic Disease
Claire J. Creutzfeldt
Benzi M. Kluger
Robert G. Holloway
Editors
123
Neuropalliative Care
Claire J. Creutzfeldt
Benzi M. Kluger
Robert G. Holloway
Editors
Neuropalliative Care
A Guide to Improving the Lives of
Patients and Families Afected by
Neurologic Disease
Editors
Claire J. Creutzfeldt, MD Benzi M. Kluger, MD, MS, FAAN
Assistant Professor Professor of Neurology
Department of Neurology Chief Neurology Supportive
University of Washington Harborview and Palliative Care Section
Medical Center Department of Neurology
Seattle, WA University of Colorado Anschutz
USA Medical Campus
Aurora, CO
Robert G. Holloway, MD, MPH, FAAN USA
Professor and Edward A. and Alma
Vollertsen Rykenboer Chair
Department of Neurology
University of Rochester Medical Center
Rochester, NY
USA
ISBN 978-3-319-93214-9 ISBN 978-3-319-93215-6 (eBook)
https://doi.org/10.1007/978-3-319-93215-6
Library of Congress Control Number: 2018953725
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Preface
When people hear the words “palliative care,” they frequently think about
hospice and cancer, if they have heard of palliative care at all. This is more
than anything a historical accident. The modern palliative care movement
began in England with Dame Cicely Saunders’ creation of St. Christopher’s
Hospice in 1967, a model that works particularly well for providing compas-
sionate end-of-life care for cancer patients. From the outset, however, the
intent of palliative care was to improve the quality of life of all patients and
families facing serious illness by treating them as whole people with needs
going beyond the direct management of their disease such as physical symp-
toms, diffcult emotions, social isolation, and spiritual distress. If you have
picked up this book, then you likely either work with patients affected by
neurologic illness or have experience as a family member or patient, and you
don’t need to be reminded of the substantial challenges facing this population
that are not well met under current models of care. This includes such diverse
issues as planning for the future; supporting the caregiver; making diffcult
treatment decisions in the face of uncertainty; managing grief, guilt, and
anger; and treating intractable pain.
Fortunately, over the past few decades, the palliative care movement has
continued to expand and evolve and is now recognized to offer support for
patients and families from the time of diagnosis through the advanced stages
of most serious and chronic illnesses, including neurological disorders. In
this book we strive to present the latest research and most relevant skills to
clinicians, hoping to meet these challenges and improve the lives of their
patients in meaningful ways. This book is intended for all clinicians caring
for patients with neurological illness and their families; while it may be of
greatest interest to neurologists and palliative care specialists, we believe that
other physicians, nurses, chaplains, and social workers – as well as trainees in
these disciplines – may fnd great value in this book. The goal is to defne
palliative care needs specifc to various neurological illness, to develop stan-
dards around recognizing and meeting these needs, and to help clinicians
incorporate a palliative care approach for patients with serious neurological
illness.
When we speak on this topic to neurology patient groups, they quickly
turn from asking what palliative care is to why isn’t everyone already doing
this. The main barriers are educational and institutional – we need to educate
clinicians and provide evidence to insurers and policy-makers of the effec-
tiveness and necessity of this approach.
v
vi Preface
As a new feld, we have all found our path to palliative care somewhat by
accident, a combination of being touched by the struggles and suffering of
our patients and their families and through the good fortune of connecting
with outstanding mentors in the feld of palliative care. We were also driven
by our own personal dissatisfaction with the care we were providing and the
meaning of our work, by questions such as “How can I help my patients make
better decisions?”, “How can I ease some of the grief and hopelessness of my
patients and their families?”, and “How can I stay open with persons who are
declining, suffering, and dying?”. Palliative care has provided us with means
to answer these questions and tools to better address these issues. As the feld
of neurology is facing a crisis of physician burnout, we think that a palliative
care approach may provide greater connection with patients, deeper meaning
in this work, and greater emotional satisfaction, all of which can help build
resilience. Just as we look to treat our patients as whole people, we must also
care for ourselves as whole people and recognize the unique gifts we all have
to offer. We hope this book is a beginning for your own journey into the world
of palliative care and that this approach helps you and your patients as much
as it has helped us.
Seattle, WA, USA Claire J. Creutzfeldt
Aurora, CO, USA Benzi M. Kluger
Rochester, NY, USA Robert G. Holloway
Acknowledgments
First and foremost, we would like to thank our contributors, who gave their
hard work, dedication, and expertise to make each chapter a joy to read. We
are grateful to the team at Springer, especially to our editor, Wade Grayson.
We are most grateful to our patients and their families who opened our eyes
and taught us so much. We owe our thanks to so many people, only some of
whom we can name individually, who have enriched this book in so many
ways.
My personal gratitude goes to Randy Curtis, Bob Holloway, and Will
Longstreth for their inspiration, encouragement, invaluable conversations,
and gentle nudges that helped me turn my passion into a career; the vision-
ary Cambia Health Foundation and the wonderful community of Sojourns
scholars; and of course my husband Armin, my son Jakob, and my daughter
Helena, who keep my mind clear and remind me of what is most important
in life.
Claire J. Creutzfeldt
I would like to thank Jean Kutner, Janis Miyasaki, and Julie Carter for
providing inspiration and guidance along this path, particularly giving me
encouragement and advice during my initial transition to a palliative care
approach. I would also like to thank Kirk Hall and Carissa Krivanek who
looked past my title and role and gave me permission to be myself while still
serving as a neurologist, thus teaching me to be the kind of doctor that I am
today.
Benzi M. Kluger
I would like to thank all of my patients, mentors, trainees, and colleagues,
including my coeditors, who have provided the inspiration, guidance, and
support to help harmonize the feld of neurology and palliative care to make
neurological health ever better. I would be nowhere without the foundation
my parents provided, the joy my children Julie and Melissa bring, and the
never-ending love of my wife, Rose, who frequently reminds me “Don’t ever
stop practicing palliative care; it’s too important.”
Robert G. Holloway
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Contents
1 N europalliative Care: An Introduction . . . . . . . . . . . . . . . . . . . . 1
Claire J. Creutzfeldt, Benzi M. Kluger,
and Robert G. Holloway
Part I D isease and Symptom-Specifc Considerations
2 S evere Acute Brain Injury . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Margaret Isaac and Claire J. Creutzfeldt
3 P rolonged Coma and Early Disorders of Consciousness . . . . . 25
Eelco F. M. Wijdicks
4 C hronic Disorders of Consciousness . . . . . . . . . . . . . . . . . . . . . . 37
Sunil Kothari
5 P arkinson’s Disease and Related Disorders . . . . . . . . . . . . . . . . 59
Janis M. Miyasaki
6 D ementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73
Thomas V. Caprio and Nicole Kosier
7 M ultiple Sclerosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89
Ludo J. Vanopdenbosch and David J. Oliver
8 N euromuscular Diseases . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101
Maisha T. Robinson and Danny Estupinan
9 M alignant Brain Tumors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 117
Akanksha Sharma and Lynne P. Taylor
1 0 C hild Neurology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 135
Monica E. Lemmon and Renee D. Boss
Part II I mproving Communication and Treatment Decisions
1 1 C ommunicating Effectively . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151
Jessica M. McFarlin and Joshua S. Barclay
1 2 P rognostication . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 161
Brian Mac Grory and David Y. Hwang
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x Contents
1 3 I mproving Medical Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . 171
Jorge Risco and Adam Kelly
1 4 A ddressing and Managing Requests to Hasten Death . . . . . . . . 187
Neal Weisbrod and Timothy E. Quill
1 5 W ithholding and Withdrawing Life-Sustaining Treatment . . . 205
Ralf J. Jox
Part III Crosscutting Issues in Palliative Care
1 6 H ospice and End of Life Care in Neurologic Disease . . . . . . . . 221
Farrah N. Daly and Mara M. Lugassy
1 7 P ain Assessment and Management . . . . . . . . . . . . . . . . . . . . . . . 239
Christina L. Vaughan and Alan C. Carver
1 8 S piritual Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 257
S. Judith Long
1 9 C linician Self-Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 269
S. Judith Long
2 0 C aregiver Assessment and Support . . . . . . . . . . . . . . . . . . . . . . . 279
Timothy S. Sannes and Benzi M. Kluger
2 1 P ractical Implementation Strategies for Outpatient
Neurology Palliative Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 293
Nicholas B. Galifanakis, Maya Katz, and Benzi M. Kluger
2 2 T he Future of Neuropalliative Care . . . . . . . . . . . . . . . . . . . . . . 303
Claire J. Creutzfeldt, Benzi M. Kluger,
and Robert G. Holloway
I ndex . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 305
Contributors
Joshua S. Barclay, MS, MD Department of Internal Medicine, University
of Virginia, Charlottesville, VA, USA
Renee D. Boss, MD, MHS Department of Pediatrics, Johns Hopkins School
of Medicine, Baltimore, MD, USA
Thomas  V.  Caprio, MD, MPH, MS Department of Medicine, Division
of Geriatrics and Aging, University of Rochester Medical Center, Rochester,
NY, USA
Alan C. Carver, MD Department of Neurology, Memorial Sloan Kettering
Cancer Center, New York, NY, USA
Claire J. Creutzfeldt, MD Department of Neurology, University of Washington
Harborview Medical Center, Seattle, WA, USA
Farrah  N.  Daly, MD Goodwin House Palliative Care and Hospice,
Falls Church, VA, USA
Danny Estupinan, MD Department of Neurology, Neurological Institute,
Cleveland Clinic, West Palm Beach, FL, USA
Nicholas B. Galifanakis, MD, MPH Department of Neurology, University
of California San Francisco (UCSF), San Francisco, CA, USA
Robert G. Holloway, MD, MPH Department of Neurology, University of
Rochester Medical Center, Rochester, NY, USA
David  Y.  Hwang, MD Division of Neurocritical Care and Emergency
Neurology, Yale School of Medicine, New Haven, CT, USA
Margaret Isaac, MD Department of Medicine, and Palliative Care Service,
University of Washington School of Medicine/Harborview Medical Center,
Seattle, WA, USA
Ralf J. Jox, MD, PhD Institute of Ethics, History and Theory of Medicine,
Ludwig-Maximilian University Munich, Munich, Germany
Geriatric Palliative Care, Lausanne University Hospital, Lausanne,
Switzerland
Maya  Katz, MD Department of Neurology, University of California San
Francisco (UCSF), San Francisco, CA, USA
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