Palliative Care in Neurology

by Voltz, Raymond; Bernat, James L.; Borasio, Gian Domenico; Maddocks, Ian; Oliver, David; Portenoy, Russell K.

• ISBN13: 9780198508434
• ISBN10: 0198508433
• Format: Hardcover
• Copyright: 2004-08-12
• Publisher: Oxford University Press

Summary

Patients with degenerative neurological disorders are among the most handicapped patients in medicine. Many of these diseases are incurable. Expert palliative care is the duty of every neurologist: however, to date, this has not been a standard feature of neurological practice or training. This book helps define a new field, namely palliative care in neurology. It brings together all necessary information for neurologists caring for a patient with advance disease. Palliative care is an approach to the management of patients with life-threatening illness that attempts to enhance comfort, relieve psychosocial and spiritual distress, assure respect for decision making, provide support for the family, and prepare the patient and family for the end of life. This unique book covers each of the many dimensions of palliative care as they relate to patients with advanced neurological disorders. Basic principles of palliative care and specific ethical issues (such as euthanasia, food and hydration and advance directives) are covered. The needs of populations with specific neurological disorders are described and the management of symptoms that are common to all is explored in detail. Each chapter introduces its topic using a case report which may be used directly for teaching purposes. The authors have put together an invaluable resource, which lays the foundation for further research in the field.

Table of Contents

Plates	xxiii
Contributors	xxv
Palliative Care	3	(10)
David Oliver
PART 1. DISORDERS
Palliative Care in Stroke	13	(14)
Gerhard F. Hamann
Angie Rogers
Julia Addington-Hall
An Introduction to Stroke	16	(1)
Epidemiology	16	(1)
Stroke Subtypes Especially Requiring Palliative Care	17	(3)
Specific Problems	20	(7)
Demyelinating Disease	27	(10)
A.D. Macleod
Fabio Formaglio
Multiple Sclerosis---Brief Resume	28	(1)
Palliative Management of Neurological Symptoms	29	(4)
Palliative Management of Psychobehavioral and Cognitive Symptoms	33	(2)
The Terminal Phase	35	(2)
Neoplasms	37	(11)
Kendra Peterson
Introduction and Epidemiology	38	(1)
Common Symptoms of Primary and Metastatic Brain Tumors	39	(3)
Leptomeningeal and Spinal Cord Metastases	42	(2)
Complications of Treatment	44	(2)
Communication and Decision Making	46	(2)
Parkinson's Disease and Related Disorders	48	(11)
Chris G. Clough
Anna Blockley
Parkinson's Disease---Diagnosis, Treatment, and Course	50	(2)
Why Do People with Parkinson's Disease Die?	52	(1)
Other Parkinsonian Syndromes	53	(1)
Specific Palliative Care Problems	53	(6)
Dementias	59	(9)
Ladislav Volicer
Causes of Dementia	59	(1)
Decision-Making Capacity	60	(1)
Stages of Progressive Dementias	60	(1)
Management of Chronic Diseases	61	(1)
Cardiopulmonary Resuscitation	61	(1)
Proxy Planning for Medical Care	62	(1)
Transfer to an Acute Medical Setting	63	(1)
Eating Difficulties and Tube Feeding	64	(1)
Antibiotic Treatment of Life-Threatening Infections	65	(1)
Bereavement Support	65	(3)
Infectious Disease	68	(11)
Jeanette Meadway
HIV/AIDS	68	(9)
Creutzfeldt--Jakob Disease	77	(2)
Diseases of Motor Nerves	79	(11)
David Oliver
Gian Domenico Borasio
Palliative Care	80	(1)
Diagnosis-Related Issues	81	(1)
Disease Progression	81	(5)
Terminal Stages	86	(4)
Muscular Dystrophy and Related Myopathies	90	(7)
Ian Maddocks
Leon Stern
Issues Arising in the Terminal Care of Muscular Dystrophy	91	(3)
Practical Aspects of Home Care	94	(3)
Epilepsy	97	(4)
Sabine Weil
Soheyl Noachtar
Epidemiology	98	(1)
Sudden Unexplained Death in Persons with Epilepsy	98	(1)
Epilepsy Syndromes	99	(1)
Social Integration	99	(1)
Family Planning	99	(2)
Pediatric Neurology	101	(10)
Eric Bouffet
Phyllis McGee
Deryk Beal
Palliative Care in Neurologic Diseases: Etiology	102	(1)
Symptom Management	103	(3)
Communicating with Neurologically Impaired Children	106	(1)
Rehabilitation	106	(1)
Home or Hospital?	107	(1)
Other Issues	107	(1)
Withdrawal of Life-Sustaining Medical Treatment for Critically Ill Children	107	(4)
PART 2. NEUROLOGIC OUTCOME AND PALLIATIVE CARE
Persistent Vegetative State	111	(14)
Rudolf Topper
Wilhelm Nacimiento
Problems of Terminology	112	(1)
Consciousness and Arousal in Neurology	113	(1)
Clinical Presentation	113	(1)
Differential Diagnosis	114	(1)
Diagnosis of the Vegetative State	115	(1)
Neuropathology of the Vegetative State	115	(1)
Neurophysiological Prognostic Evaluation	116	(1)
Imaging Studies	117	(2)
Interaction with Family Members	119	(1)
Management	120	(5)
Quadriplegia and Paraplegia	125	(10)
Walter A. Ceranski
The Scope of Quadriplegia and Paraplegia	126	(3)
Palliative Care	129	(6)
Locked-In Syndrome	135	(12)
Heinz Lahrmann
Wolfgang Grisold
Clinical Picture and Neuroanatomy	136	(2)
Diagnosis and Differential Diagnosis	138	(1)
Prognosis and Outcome	138	(1)
Care	139	(1)
Communication	140	(1)
Care of Relatives	141	(1)
Ethical Aspects	141	(6)
PART 3. COMMON SYMPTOMS
Spasticity	147	(9)
Johannes Noth
Gereon R. Fink
Pathophysiology	148	(2)
Symptomatology of Spasticity	150	(1)
Spastic Syndromes Characterized by the Topology of the CNS Lesion	151	(2)
Therapy of Spasticity	153	(3)
Dysphagia	156	(9)
Mario Prosiegel
Edith Wagner-Sonntag
Gian Domenico Borasio
Anatomy	157	(1)
Diseases	158	(2)
Assessment of Dysphagia	160	(1)
Management of Dysphagia	160	(5)
Communication Impairment	165	(13)
Amanda Scott
Margaret Foulsum
The Concept of Communication	166	(1)
Causes of Communication Impairment	167	(5)
Principles of Speech Pathology Intervention in Palliative Care	172	(1)
Assessment	173	(1)
Functional Management Strategies	174	(2)
Communication in the Terminal Phase	176	(2)
Epileptic Seizures and Myoclonus	178	(9)
Sabine Weil
Soheyl Noachtar
Epileptic Seizures	179	(4)
Myoclonus	183	(4)
Pain	187	(23)
Eugenia Daniela Hord
Russell K. Portenoy
Epidemiology of Pain in Neurologic Disorders	188	(1)
Pain Assessment	189	(4)
Pain Management	193	(17)
Nausea and Vomiting	210	(11)
Sebastiano Mercadante
Definition	211	(1)
Pathophysiology	211	(2)
Receptors and Neurotransmitters	213	(1)
Specific Conditions Associated with Vomiting in Neurologic Diseases	214	(2)
Assessment and Diagnosis	216	(1)
Treatment	217	(4)
Fatigue	221	(7)
Lynne I. Wagner
David Cella
Nicholas A. Doninger
Pathophysiology of Fatigue	222	(1)
Assessment of Fatigue	223	(1)
Clinical Management of Fatigue	224	(4)
Acute Confusional State	228	(13)
Augusto Caraceni
Marco Bosisio
Diagnosis and Clinical Features	230	(6)
Treatment	236	(5)
Respiratory Symptoms	241	(12)
Gian Domenico Borasio
D. Kaub-Wittemer
Definition and Pathophysiology of Dyspnea	242	(1)
Assessment	243	(3)
Non-Pharmacological Treatment	246	(1)
Pharmacological Treatment	246	(3)
Ventilation	249	(4)
Bowel Symptoms	253	(9)
Nigel P. Sykes
Constipation	254	(3)
Diarrhea	257	(2)
Fecal Incontinence	259	(3)
Urological Symptoms	262	(10)
Darshan K. Shah
Gopal H. Badlani
Voiding Dysfunctions Associated with Common Neurological Disorders	263	(2)
Evaluation of Urinary Dysfunction in the Neurologically Impaired Patient	265	(2)
Treatment Strategies	267	(5)
Psychiatric Symptoms	272	(11)
Alexandre Berney
Friedrich Stiefel
Major Psychiatric Disorders	273	(4)
General Aspects: Coping, Defenses, and Adaptation	277	(6)
PART 4. OTHER PROBLEMS WITH ADVANCED ILLNESS
Neurological Emergencies	283	(11)
Janet Hardy
Donal Martin
Spinal Cord Compression	284	(2)
Status Epilepticus	286	(4)
Raised Intracranial Pressure	290	(4)
Pressure Ulcers	294	(13)
Paul W. Walker
Pathophysiology	295	(1)
Prevention	296	(2)
Staging	298	(1)
Treatment	298	(7)
Nutrition	305	(2)
Stomatitis	307	(7)
Paul Rousseau
Etiology and Pathophysiology	308	(1)
Clinical Features	308	(1)
Prevention	309	(1)
Treatment	310	(2)
Management of Xerostomia	312	(2)
Managing the Dying Patient	314	(13)
Nigel P. Sykes
Recognition of Dying	315	(1)
Respiratory Symptoms	316	(2)
Choking and Aspiration	318	(1)
Restlessness and Agitation	318	(1)
Supporting the Family	319	(2)
Supporting the Professionals	321	(6)
PART 5. ETHICAL ISSUES
Personal Identity and Palliative Care	327	(8)
Carlo A. Defanti
The Concepts of Person and Personal Identity	328	(2)
Brain Diseases, Persons, and Personal Identity	330	(1)
Decision Making and Personal Identity	331	(2)
Personal Identity as a Therapeutic Target in the Care of Demented People	333	(2)
Food and Hydration	335	(14)
Janet Hardy
Helen White
Louise Henry
David Oliver
Assessment	336	(1)
Treatment of any Reversible Cause and any Associated Symptoms	336	(2)
Artificially Provided Nutrition and Hydration	338	(5)
Food in the Terminal Phase	343	(1)
Ethical Dilemmas and Decision Making	343	(3)
Hydration in the Terminal Phase	346	(1)
Hypodermoclysis	347	(2)
Sedation in the Imminently Dying Patient	349	(7)
Raymond Voltz
Kathleen M. Foley
Sedation is not Euthanasia	350	(1)
Frequency of Sedation in Palliative Care	351	(1)
Sedation does not Hasten Death	351	(1)
Indications for Sedation	352	(1)
Clinical Management	352	(4)
Advance Directives	356	(7)
Akira Akabayashi
Brian Taylor Slingsby
Raymond Voltz
Neurological Disorders and Advance Directives	357	(2)
A Sample Model for Advance Care Planning	359	(1)
Cultural Considerations	359	(2)
Appendix	361	(2)
Refusal and Withdrawal of Treatment	363	(9)
James L. Bernat
Ethical Basis of Treatment Refusal	364	(1)
Barriers to Treatment Refusal	365	(1)
Responding to Treatment Refusals	365	(1)
Empirical Studies	366	(2)
Refusal of Hydration and Nutrition	368	(1)
Refusal of Life-Sustaining Therapy in Neurological Practice	368	(1)
Practical and Legal Issues	369	(3)
Physician-Assisted Suicide and Euthanasia	372	(11)
Alan Carver
Kathleen M. Foley
Status of the Legalization of Physician-Assisted Suicide and Euthanasia	373	(4)
Current Issues in the Physician-Assisted Suicide/Euthanasia Debate	377	(3)
Development of an Approach to the Dying Patient	380	(3)
Informed Consent	383	(14)
James L. Bernat
A Theory of Informed Consent	384	(4)
Consent in Minors	388	(1)
Treatment Without Consent	389	(1)
Practical Issues	390	(1)
Cultural and Legal Issues	390	(1)
Research	391	(6)
PART 6. GENERAL ASPECTS
Psychological Aspects	397	(9)
Richard Sloan
Patient Reactions	398	(3)
Professional Guidelines	401	(5)
Spirituality	406	(9)
Robert M. Taylor
Sharol L. Herr
Spirituality and Religion	407	(2)
Empiric Studies of Spirituality and Religion	409	(1)
Sources of Spiritual Distress	410	(1)
Spirituality and Religiousness in Neurological Disease	411	(1)
The Neurological Team as Spiritual Care Providers	412	(3)
Cultural Aspects of Care	415	(9)
David Oliviere
David Oliver
Overview	415	(2)
Ensuring Quality	417	(3)
Cultural Care and Patient Care	420	(2)
Assessment and Intervention	422	(2)
Palliative Care Education for Neurologists	424	(5)
Ian Maddocks
The Changing Role of the Neurologist	425	(1)
Neurology Training	426	(1)
The Content of Palliative Care Education	426	(3)
So, Here's What's Happened in My Life Since Last April	429	(8)
Ben-Joshua Jaffee
Index	437