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Title Public policy in ALS/MND care : an international perspective / Robert H. Blank, Jerome E. Kurent, David Oliver, editors
Published Singapore : Palgrave Macmillan, [2021]


Description 1 online resource (365 pages) : illustrations
Contents 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
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 Includes bibliographical references
Notes Print version record
Subject Amyotrophic lateral sclerosis -- Government policy
Amyotrophic lateral sclerosis -- Treatment -- Government policy
Medical policy.
Health Policy
Medical policy.
Form Electronic book
Author Blank, Robert H., editor.
Kurent, Jerome E., editor.
Oliver, David, 1954- editor.
ISBN 9789811558405