Public policy in ALS/MND care : an international perspective / Robert H. Blank, Jerome E. Kurent, David Oliver, editors.
Blank, Robert H., editor.; Kurent, Jerome E., editor.; Oliver, David, 1954- editor.
2021
RC406.A24
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Title
Public policy in ALS/MND care : an international perspective / Robert H. Blank, Jerome E. Kurent, David Oliver, editors.
ISBN
9789811558405 (electronic bk.)
981155840X (electronic bk.)
9879811558399
DOI
https://doi.org/10.1007/978-981-15-5840-5
Published
Singapore : Palgrave Macmillan, [2021]
Language
English
Description
1 online resource (365 pages) : illustrations
Item Number
10.1007/978-981-15-5840-5 doi
Call Number
RC406.A24
Dewey Decimal Classification
616.8/39
362.1968/39
Summary
This book focuses on the public policy and political/ethical dimensions of ALS/MND across a wide selection of countries and argues for the need of a multidisciplinary and international approach. Policy issues addressed include adequacy of funding for research and care, payment policy and regulatory functions of public and private insurers, long-term services and caregiver support, public health and prevention efforts, access to genetic testing and assisted technologies, ensuring a competent and adequate workforce especially for hands-on caregivers, and the challenging issues of providing palliative and hospice care for ALS/MND patients, advance directives and assisted suicide that face policy makers in all political jurisdictions. Robert H. Blank, PhD, (University of Maryland) is an adjunct Professor of Political Science at the University of Canterbury in Christchurch, New Zealand. He has been a frequent guest professor at Aarhus University in Denmark and at National Taiwan University in Taipei, Taiwan, and a Research Scholar at New College Florida. Jerome E. Kurent received his MD from the University of Cincinnati College of Medicine and completed residencies in Neurology and Internal Medicine at the Johns Hopkins Hospital. He completed fellowships in neuromuscular diseases and electromyography at the National Institutes of Health, followed by a Geriatrics Medicine fellowship at Harvard where he also received his MPH. Dr. Kurent joined the Medical University of South Carolina faculty in 1984, and is Professor of Neurology, Medicine and Psychiatry and Behavioral Sciences. David Oliver, MD., recently retired as Consultant Physician in Palliative Medicine at the Wisdom Hospice in Rochester, Kent where he developed an integrated service over 32 years. He is an Honorary Professor at the Tizard Centre at the University of Kent, where he supervises students and is involved in research.
Bibliography, etc. Note
Includes bibliographical references.
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Source of Description
Description based on print version record.
Added Author
Blank, Robert H., editor.
Kurent, Jerome E., editor.
Oliver, David, 1954- editor.
Available in Other Form
Public Policy in ALS/MND Care : An International Perspective.
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Intro
Foreword
References
Preface
Contents
Notes on Contributors
List of Figures
List of Tables
Chapter 1: Introduction to Public Policy of ALS/MND
Introduction
What Is ALS/MND?
Making the Diagnosis of ALS/MND: A Diagnosis of Exclusion
Epidemiology of ALS/MND
Genetics of ALS/MND
Environmental Risk Factors
Management of Symptoms
Palliative Care, Hospice and End-of-Life Care
Ethical Issues in ALS/MND Care
Clinical Trials
Genetic Testing
Withholding and Withdrawal of Care
Palliative Sedation and Assisted Dying
Right to Try

Public Policy Context
Cross-cultural Studies
Countries Selected
Summary of Individual Chapter Objectives
References
Chapter 2: Public Policy in MND Care: The Australian Perspective
Incidence, Prevalence and Deaths of MND in Australia
Governmental Agencies Involved in Care
Active MND Associations and Advocacy Groups
Funding for Research and Care
Proportion of Patients Who Live at Home vs. Institutional Care
Composition and Support for Caregivers
Access to Assistive Technologies
Status of Multidisciplinary Team Care and Clinics

"Right to Try" Legislation for ALS/MND Patients
Genetic Testing of Patients with MND
Place of Death: At Home, in Nursing Facility, Hospital or Hospice
Access to Palliative and Hospice Care
Legal Status of Advance Directives and Withholding or Withdrawing Life-Extending Interventions and Mechanical Support
Legal Status of Euthanasia and Physician-Assisted Suicide
Critical Factors for Understanding Policy Making in Australia
Healthcare Structure and Funding Arrangements
Geography
Cultural Diversity
Policy Changes Needed to Improve MND Care and Advance Research Support

Government and the Bureaucracy
Government and the Workforce
Team-Based, Multidisciplinary Care
Funding Models for Innovation
Workforce Capability/Education
Workforce Deployment
Government and the Community
Health Literacy
Shared Information Systems
Sustaining the Natural Resilience of Families and the Socio-economic Benefits of Informal Care
References
Chapter 3: Public Policy in ALD/MND Care: The Belgian Perspective
Incidence, Prevalence and Deaths of ALS/MND in Belgium
Governmental Agencies Involved in Care

Private ALS/MND Organizations and Advocacy Groups
Policy Associated with ALS/MND Research
Public and Media Perceptions of ALS/MND
Care of ALS/MND Patients in Belgium
Composition of Caregivers: Informal, Formal (Paid)
Governmental Aid for Family Caregivers
Access to Assistive Technologies
Status of Multidisciplinary Team Care and Clinics
Right to Try Unapproved Drugs for ALS/MND Patients
Genetic Testing for ALS/MND
Access to Palliative and Hospice Care
Advance Directives and Withholding or Withdrawing Life-Extending Interventions

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