Public Policy in ALS/MND Care: An International Perspective

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
Palliative Sedation and Euthanasia
Factors Unique to Belgium
Conclusions: ALS/MND Policy in Belgium
References
Chapter 4: Amyotrophic Lateral Sclerosis in Brazil
Introduction
ALS in Brazil: Overview
Organization of the Healthcare System in Brazil
Public Policies for ALS Patients in Brazil
Palliative Care in Brazil
End-of-Life Decision-Making
ALS Advocacy Groups in Brazil
ALS Research in Brazil
Unmet Needs and Future Perspectives
References
Chapter 5: Public Policy of ALS in Canada
Introduction
Public Face of ALS
Public and Media Perceptions of ALS
Active Government and Private ALS Organizations
Governmental Action on ALS
Approval and Access to New ALS Therapies in Canada
Policy and the Lived Experience of ALS
Diagnostic Services Including Genetic Testing
Care and Support Throughout the Course of ALS
Governmental Aid for Family Caregivers
Palliative Care
Medical Assistance in Dying
Research in ALS
Factors Unique to Canada
Recommended Policy Changes to Improve Care of ALS/MND Patients
References
Chapter 6: Public Policy for Amyotrophic Lateral Sclerosis in China
Incidence, Prevalence and Deaths of ALS in China
Governmental and Private Action on ALS
Public Funding for Research and Care
Public and Media Perceptions of ALS
Care of ALS Patients in China
Governmental Aid for Family Caregivers
Access to Assistive Technologies and Drugs
Status of Multidisciplinary Team Care and Clinics
Genetic Testing for ALS
Palliative and Hospice Care for ALS Patients
End-of-Life Decision-Making
Suggested Policy Changes to Improve the Care of ALS Patients
References
Chapter 7: German Perspective on ALS/MND Policy
Incidence and Prevalence of ALS/MND in Germany
Government and Private Activity
Funding Patient Care and Research in Germany
Public Awareness and Media Interest
Where ALS Patients Live and Die
Palliative Care and Hospices in Germany
Support for Family Care and Assistive Technologies
Multidisciplinary Teams
Availability of Unapproved Drugs
Genetic Testing for MND
Advance Directives and End-of-Life Decisions
Cultural and Historical Particularities in the German Position on End-of-Life Decisions
Conclusions
References
Other Resources
Chapter 8: Living and Dying with ALS/MND in India: Public Policy and Private Realities
Introduction: ALS/MND in India
Case Studies
Health Care Setting
Neurology and ALS/MND Care in India
A Lack of ALS/MND-Specific Facilities
Road Map for the Future
References
Chapter 9: The Experience of Amyotrophic Lateral Sclerosis in Ireland
ALS in the Irish Healthcare System
ALS/MND Clinics
Operation of the ALS/MND Service
Diagnostic Pathway
Operation of the Multidisciplinary Team Care
Genetic Testing
Management of ALS/MND
State Benefits for ALS/MND Patients and Informal Carers
Care Services for ALS Patients in Ireland
Patient and Caregiver Attitudes to Care
Formal and Informal Caregiving
Palliative Care and End of Life
Advance Directives and Invasive Mechanical Ventilation
Applied Research and Generation of Standards
Future Requirements to Improve Care and Advance Research Support for ALS/MND
References
Chapter 10: Public Policy of ALS Care in Israel
Incidence and Prevalence and Deaths of ALS in Israel
The Israel ALS Research Association
Promoting ALS Research in Israel
Supporting ALS Patients and Their Family Members
Governmental Action on ALS
Funding of ALS Research and Patient Care
Research
Patient Care
Public/Media/Commercial Perceptions of ALS
Long-Term Care of Persons with ALS
Access to Assistive Technologies
Status of Multidisciplinary Team Care and Clinics
Access to Unapproved Drugs
Genetic Testing of Patients with ALS
End-of-Life Decision Making
Access to Palliative and Hospice Care
Advance Directives and Withholding or Withdrawing Mechanical Ventilation
Factors Unique to Israel Critical for Understanding Decision Making for ALS
Religious
Cultural and Social
Family Structure and Commitment
Government Support
Recommended Changes in Policy to Improve Care of ALS Patients
References
Chapter 11: Public Policy in ALS Care: The Italian Situation
Epidemiology of ALS in Italy
National Policies, Funding Strategies and User Involvement
The Italian Model of ALS Care
Palliative Care for Patients with ALS in Italy
End-of-Life Care in Italy
Advance Directives and Withholding or Withdrawing Life-Extending Interventions
Legal Status of Palliative Sedation, Euthanasia and Physician-Assisted Suicide
Conclusions
References
Chapter 12: ALS Policy: A Japanese Perspective
Incidence, Prevalence and Mortality of ALS
Governmental Involvement in ALS Care and Research
ALS Associations and Advocacy Groups
Public and Media Perceptions of ALS
Where ALS Patients Live
Composition and Support of Caregivers
Access to Assistive Technologies
Status of Multidisciplinary Team Care and Clinics
Clinical Trials and Use of Unapproved Drugs
Genetic Testing of Patients with ALS
Where ALS Patients in Japan Die
Access to Palliative and Hospice Care
Advance Directives and Withholding or Withdrawing Life-extending Interventions
Legal Status of Palliative Sedation, Euthanasia and Physician-Assisted Suicide
Factors Unique to Japan That Influence ALS Policy
Recommended ALS Policy Changes in Japan
References
Chapter 13: ALS Policy in Mexico
ALS Incidence and Prevalence in Mexico
ALS Support Groups
The Healthcare System and ALS
ALS Research and Awareness
ALS Patient Care in Mexico
End-of-Life Issues for ALS in Mexico
Conclusions: Where to Go from Here?
References
Chapter 14: Public Policy in MND Care: Nigerian Perspective
Incidence and Prevalence of MND in Nigeria
Limited Governmental and Non-governmental Support and Action
MND Services in Nigeria
Barriers for MND Care in Nigeria
Challenges and Opportunities in the Treatment and Care of Neurological Disorders in Nigeria: The Way Forward
Short- and Long-Term Strategies to Improve MND Outcome in Nigeria
References
Chapter 15: Public Policy of ALS: A Pakistani Perspective
Introduction
Epidemiology of ALS
Government Activity in ALS
Advocacy and Awareness of ALS in Pakistan
ALS Research Funding
Care of ALS Patients
End-of-Life Issues for ALS Patients
Policy Changes Needed for ALS
References
Chapter 16: Public Policy in ALS Care: The Polish Perspective
Prevalence
Social Support for ALS Patients
Provision of Equipment
Support for Caregivers
Provision of Medication
Palliative Sedation
Research
Genetic Testing
Public Awareness
Guidelines for Care of ALS Patients
Palliative Care
Multidisciplinary Care
Assisted Dying
Place of Care and Death
Conclusion
References
Chapter 17: ALS Policy: A Russian Perspective
Incidence and Prevalence
Governmental Action in ALS Care
Private ALS Organizations
ALS Research in Russia
Care of Patients with ALS
Caregivers
Multidisciplinary Teams
Right to Try
Genetic Testing
Palliative Care
Advance Directives, Euthanasia and Physician-Assisted Suicide
Conclusion: ALS Policy Context in Russia
References
Chapter 18: Public Policy in ALS/MND Care: South African Perspective
Epidemiology of ALS in South Africa
The State of Health Care in South Africa
State of Palliative Care in Africa
State of Palliative Care in South Africa
Non-governmental Organization Support Structures in South Africa
Current Services and Measures to Strengthen Palliative Care
Cultural Issues: Processes Required for Having a “Good Death” in South Africa
Legalizing Physician-Assisted Suicide in South Africa
Proposed Priorities for South African Policy Makers to Support ALS/MND
Proposed Research Priorities in South Africa for ALS
Concluding Thoughts
References
Websites
Chapter 19: Public Policy in ALS Care: South Korea
Incidence and Prevalence of ALS
Rare Disease Management Act
Fighting the Disease
Clinical Trials and Innovative Research
Use of Clinical Drugs for Therapeutic Purpose
Status of Multidisciplinary Team Care and Clinics
The Enforcement Decree of the Act on Welfare of Persons with Disabilities
The Most Active ALS Associations and Advocacy Groups
Genetic Testing of Patients with ALS
Korean Oriental Medicine
End-of-Life Care
Home Healthcare Nurses
Hospice and Palliative Care
Overview of Korean Medical Policy
Healthcare Financing
Healthcare Delivery System
Long-Term Care Insurance Systems for the Elderly
Discussion
References
Chapter 20: Amyotrophic Lateral Sclerosis Care in Tunisia
Incidence, Prevalence and Deaths of ALS Patients in Tunisia
Major Governmental Agencies Involved in ALS Care
Public Funding for Research
Public and Media Perceptions of ALS
Care of ALS Patients
Access to Assistive Technologies
Status of Multidisciplinary Team Care and Clinics
Tunisian Care Model
Right to Try and Participation in Clinical Trials
Genetic Testing for ALS
The Legal Context of End-of-Life Decision-Making for ALS Patients
Critical Factors Unique to Tunisia for Understanding ALS Policy
Recommended Changes in ALS Policy
References
Chapter 21: Public Policy in MND Care: The United Kingdom
Incidence and Prevalence of MND
Governmental Reports and Actions on MND
Major Governmental Agencies Involved in MND Care
The Most Active Private MND Organizations and Associations
Contributions from Private and Public Sectors for MND Research and Care
Public and Media Perceptions of MND
Proportion of People with MND at Home and Institutional Care
Composition of Caregivers: Informal and Formal or Paid
Governmental Aid for Caregivers
Access to Assistive Technologies
Status of Multidisciplinary Team Care and Clinics
“Right to Try” Legislation for MND Patients
Genetic Testing of Patients with MND
Place of Death
Access to Palliative Care
Legal Status of Advance Directives
Withholding and Withdrawal of Treatment
Legal Status of Assisted Dying and Palliative Sedation
Factors Unique to UK Culture in Decision Making
Policy Changes to Improve Care of MND Patients and Advance MND Research
References
Chapter 22: ALS Public Policy in the United States
Background and Epidemiology of ALS in the United States
Public Policy and Major Governmental Agencies Supporting Patient Care
Public Policy Related to Veterans with ALS and Service-Connected Disability
Public Policy and Government-Supported ALS Research
Non-governmental and Community-Based ALS Organizations and Resources
Providing Care to the Patient with ALS
Status of ALS Multidisciplinary Clinics
Caregiver Support
Access to Drug Treatments for ALS
Access to Assistive Technologies and Non-pharmacological Treatments
“Right to Try” Legislation
Genetic Testing of Patients with ALS
Access to Palliative Care and Hospice
Place of Death for Patients with ALS
Palliative Sedation
Legal Status of Advance Directives and Withholding/Withdrawing Care
Legal Status of Physician-Assisted Suicide
Factors Unique to the United States: Increasing Ethnic and Cultural Diversity
The Future
References
Chapter 23: Conclusions: What We Can Learn from the Country Perspectives
ALS/MND Policy
Cross-national Learning
Epidemiology of ALS/MND
Facing Limited Resources
Government and Private Organization Activity in ALS/MND
Public Awareness and Media Attention for ALS/MND
Funding for ALS/MND Research
Access to Drugs to Treat ALS/MND Patients
Right to Try
Clinical Trials
Genetic Testing
Public Support for Patients and Family Caregivers
Access to Assistive Technologies
Where Patients with ALS/MND Live and Die
Multidisciplinary Clinics
Palliative Care/Hospice
Advance Directives (ADs)
Withholding or Withdrawing Care
Physician-Assisted Suicide (PAS) and Euthanasia
Cultural Factors That Affect ALS/MND Policy
Summary and Future Perspectives