Ethical and Legal Issues in Neurology :Handbook of Clinical Neurology Series 3 (edited by Aminoff, Boller and Swaab) ( Volume 118 )

Publication subTitle :Handbook of Clinical Neurology Series 3 (edited by Aminoff, Boller and Swaab)

Publication series :Volume 118

Author: Bernat   James L.;Beresford   Richard  

Publisher: Elsevier Science‎

Publication year: 2014

E-ISBN: 9780444535047

P-ISBN(Paperback): 9780444535016

P-ISBN(Hardback):  9780444535016

Subject: D08 Other political theory problems;R741 Neurology

Language: ENG

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Description

Advances in our understanding of the brain and rapid advances in the medical practice of neurology are creating questions and concerns from an ethical and legal perspective. Ethical and Legal Issues in Neurology provides a detailed review of various general aspects of neuroethics, and contains chapters dealing with a vast array of specific issues such as the role of religion, the ethics of invasive neuroscience research, and the impact of potential misconduct in neurologic practice. The book focuses particular attention on problems related to palliative care, euthanasia, dementia, and neurogenetic disorders, and concludes with examinations of consciousness, personal identity, and the definition of death.

This volume focuses on practices not only in North America but also in Europe and the developing world. It is a useful resource for all neuroscience and neurology professionals, researchers, students, scholars, practicing clinical neurologists, mental health professionals, and psychiatrists.

  • A comprehensive introduction and reference on neuroethics
  • Includes coverage of how best to understand the ethics and legal aspects of dementia, palliative care, euthanasia and neurogenetic disorders
  • Brings clarity to issues regarding ethics and legal responsibilities in the age of rapidly evolving brain science and related clinical practice

Chapter

Respect for Patient Autonomy

Beneficence

Nonmaleficence

Justice

Resolving Conflicts Among Principles

Alternative Approaches to Medical Ethics

The Primacy of Beneficence in Medicine

Care-based Ethics

Feminist Ethics

Narrative Ethics

Conclusion

References

Chapter 2: The Analysis and Resolution of Ethical Dilemmas

Introduction

A Structured Approach to Analyzing Ethical Dilemmas

Clarification and Classification of the Dilemma

Review of Existing Information

Acquisition of Additional, Relevant Information

Analysis of the Ethical Issue

Relevant Legal and Professional Considerations

Rights

Patient Autonomy

Professional Autonomy

Duties

Nonmaleficence

Truth-telling

Confidentiality

Consequences

Beneficence

Virtues

The Use of Cases

Formulate Response, Consider Criticisms, and Identify Lessons Learned

Next Steps in the Absence of Resolution

Temporize

Options to Avoid

Worst Option

Impractical Solutions, or Failure to Consider Potential Alternatives

Rationing at the Bedside

Conclusion

Acknowledgment

References

Chapter 3: Ethics Committees and Consultants

Introduction

Clinical EC

Approaches to Clinical EC

Ethics Committees

Maintenance of Ethics Committees and Services

Ethics Education

Maintenance of Competencies

Literature Review

Internal Case Review

Skills Practice and Case Simulation

Periodic Statistical Review of Cases

Resources for Ethics Consultants and Committees

Internal Currency: Institutional buy-in

The Ethics Police?

Additional Practical Questions Regarding the Structuring of EC Practice

Should an EC Be Recorded in the Medical Record?

The Reported Experience With Ethics Consultation in Patients With Neurologic Diseases

Value of Ethics Consultation

Ethicality

Satisfaction

Conflict Resolution

Education

Cost Containment or Reduction

Measuring Value in EC?

Conclusion

References

Chapter 4: Legal Process, Litigation, and Judicial Decisions

Introduction

Autonomy and Law

The Autonomy Principle

Constitutional Context

Decisional Autonomy

Informed Consent Doctrine

Canterbury v. Spence (1972)

Kohoutek v. Hafner (1986)

Culbertson v. Mernitz (1992)

Rizzo v. Schiller (1994)

Johnson v. Kokemoor (1996)

Howard v. University of Medicine & Dentistry of New Jersey (2002)

Truman v. Thomas (1980)

Comment

Protecting "Liberty" of Patients: Roles of Physicians, Surrogates, and Courts

Withdrawing or Withholding Life Support

Cruzan v. Director (1990)

Matter of Quinlan (1976)

Blouin v. Spitzer (2004)

In re Schiavo (2001)

Aid in Dying

Washington v. Glucksberg (1997)

Vacco v. Quill (1997)

Baxter v. State (2009)

Oregon and Washington Statutes

Nonconsensual Treatment

Washington v. Harper (1990)

Sell v. United States (2003)

Ms. B v. an NHS Hospital Trust (2002)

"Futile" Treatment

In re Baby K (1994)

Causey v. St. Francis Medical Center (1998)

Comment

Informational Autonomy: Protecting Confidentiality

Horne v. Patton (1973)

Safer v. Peck (1996)

Molloy v. Meier (2004)

Tarasoff v. Regents of the University of California (1976)

Bradshaw v. Daniel (1993)

Tenuto v. Lederle Laboratories (1997)

Pate v. Threlkel (1995)

United States v. Hayes (2000)

Comment

Beneficence and Law

The Beneficence Principle

Conflicts of Interest

Nonfinancial Conflicts

Moore v. Regents of the University of California (1990)

Gelsinger Litigation (Gelsinger v. Trustees of the University of Pennsylvania, 2000)

Financial Conflicts

Anti-kickback Law (1977)

Self-referral Laws

Health Maintenance Organization (HMO) Laws

Pegram v. Herdrich (2000)

Neade v. Portes (2000)

Wickline v. State (1986)

Comment

Protecting Subjects of Research: Rights and Remedies

Regulation of Clinical Research

Case Law

Halushka v. University of Saskatchewan (1965)

Karp v. Cooley (1974)

Heinrich v. Sweet (2002)

Grimes v. Kennedy Krieger Institute (2001)

Comment

Justice and Law

Conceptualizing "Justice"

Defining Protectable Rights and Interests

United States v. University Hospital (1984)

Bragdon v. Abbott (1998)

Glanz v. Vernick (1991)

Sumes v. Andres (1996)

Burditt v. U.S. Department of Health and Human Services (1991)

Olmstead v. L.C. Ex Rel. Zimring (1999)

Comment

Provide Fair and Efficient Process for Resolving Disputes

Rules for Expert Testimony

Case Law

United States v. Gigante (1998)

Roper v. Simmons (2005)

People v. Eulo (1984)

Matter of Quinlan (1976)

Clark v. Arizona (2005)

United States v. Semrau (2010)

Allen v. Martin Surfacing (2009)

Comment

Concluding Commentary

References

Chapter 5: Law, Ethics, and the Clinical Neurologist

Introduction

Law

Ethics

Interplay Between Ethics and Law

Ethics Manifested in Law – Examples Relevant to Neurology Practice

Nonmaleficence

Voluntary Active Euthanasia and Physician-Assisted Suicide

Privacy

Beneficence

Ending a Patient–Physician Relationship

Conflict of Interest

Respect for Autonomy

Informed Consent

Justice

Emerging Issues

References

Chapter 6: Religion and Medical Ethics

Introduction

Theonomous Decision-Making

Transvaluing Suffering

Spiritual or Mystical Beliefs and Values

Current Areas of Debate

Abstentions from Medical Treatments

End-of-life Decision-making

Defining Moral Personhood: Lifes Beginning and End

Sexuality

Conclusion

References

Chapter 7: Professional Conduct and Misconduct

Introduction

Defining the Physician−Patient Relationship

Initiation of the Physician−Patient Relationship

Communication

Therapeutic Privilege

Disclosure of Medical Errors

Confidentiality

Electronic Communication

Empathy

Dual Relationships and Professional Boundaries

Barriers to Care

Termination of the Physician−Patient Relationship

Conflicts of Interest

Relationships With Industry

Practice Models and Stewardship

Disclosure of Conflicts

Honest Dealing With Third Parties

Reporting Impaired Physicians

Expert Testimony

Care of Self

References

Chapter 8: Medical Error and Disclosure

Introduction

Definitions

Epidemiology

Causes of Medical Error

Scenario 1

Scenario 2

Error Reporting

Disclosure of Medical Errors to Patients

Why Should Neurologists Disclose Medical Errors?

How Should Physicians Disclose Medical Error?

Gaps in Current Disclosure Practices

Approaches to Error Disclosure

Planning With Teams

Initiating Disclosure: What Should Be Told?

Emotional Impact of Errors on Clinicians

Conclusions

References

Chapter 9: The Good Doctor: Professionalism in the 21st Century

Introduction

Defining Medical Professionalism

Three Hallmarks of Professionalism

Challenges to Professionalism

The Doctor–patient Relationship

Cultural Competence

Continuity of Care

Conflicts of Interest

Clinical Competence and Maintenance of Certification

Contributory Winds

The Technologic Imperative

The Importance of Structures

Commercialization: Medicine as Business

Addressing the Challenges

The 2002 Physician Charter: a Landmark Effort

Reviving Medical Professionalism

Future Directions

References

Chapter 10: Palliative Treatment of Chronic Neurologic Disorders

Introduction

Parkinson's Disease and Related Conditions

Dementia

Multiple Sclerosis

Amyotrophic Lateral Sclerosis

References

Chapter 11: Care of the Dying Neurologic Patient

Introduction

Causes of Death

End-of-life Decisions

Optimizing Care of the Dying

Structure of Care

Goals and Monitoring of Care

Evidence

Medication at the End of Life

References

Chapter 12: Withdrawing and Withholding Life-Sustaining Treatment

Introduction

Distinctions Between Withholding and Withdrawing Treatment

Decision-Making Regarding Life-Sustaining Treatment: Principles

Principle 1: Patients With Decision-making Capacity Have the Right to Refuse Unwanted LST

Principle 2: when One Loses Decision-making Capacity, One Does Not Lose the Right to Refuse Unwanted LST

The Problem of Prognostic Uncertainty

The Problem of Changing Preferences

Decision-Making Regarding Life-Sustaining Treatment: Practice

Learn About the Patients Personality, Preferences, and Values

Deliberate About Which Neurologic or Cognitive States the Patient Would Consider Acceptable/Unacceptable if the States were to.

Consider the Range of Possible Neurologic Outcomes (if Prognosis is Uncertain) and Their Probabilities, Given Current Informat.

Consider the Interventions That Would Be required to Sustain Life

Deliberate About the Course of Action That the patient Would Endorse and Pursue that Course

Recent Research Regarding Forgoing LST in Neurologic Practice

References

Chapter 13: European Perspectives on Ethics and Law in End-of-life Care

Introduction

Withholding and Withdrawing Life-Sustaining Treatment

Refusing Treatment and Advance Directives

Alleviating Symptoms at the End of Life

Assisting in Dying

European Perspectives on the Value of Life

References

Chapter 14: Medical Futility

Terri Schiavo: A Case Report

Questions Raised By the Terri Schiavo Case

The Mythic Power of Futile Treatment

Medical Futility: A Brief Historic Tour

Quantitative Futility

Qualitative Futility

Establishing Standards of Practice

Beyond Futility to an Ethic of Care

The Heuristic Value of Medical Futility

Futility: the German Perspective

References

Chapter 15: Assisted Suicide and Euthanasia

Introduction

Regulations of Physician-Assisted Suicide and Euthanasia

The Ethical Debate

Arguments in Favor of Physician-assisted Suicide and Euthanasia

Arguments Against Physician-assisted Suicide and Euthanasia

Public and Medical-Professional Opinions

Practices

Concluding Remarks

References

Chapter 16: Brain Death

Introduction

Brain Death: From a Simple to a Complex Concept and Back

Current Clinical Criteria

Personal Beliefs and Ethical Concerns

Organ Donation

Conclusions

References

Chapter 17: Coma and Disorders of Consciousness

Introduction

The Vegetative State

The Minimally Conscious State

The Locked-in Syndrome

Managing Pain in Patients With Disorders of Consciousness

Neuroimaging Studies

Clinical Scales

Ethical Challenges in End-of-life Care

Survey Data

Surrogate Decision-making

Guidelines

Assessing Quality of Life in Severely Dependent Patients

Conclusions

References

Chapter 18: Ethical Issues in the Care of the Neurologically Devastated Infant

Introduction

History

Legal Guidelines

The Groningen Protocol

Professional Codes and Bioethics Reviews

Religious Beliefs

Commentary

Conclusions

References

Chapter 19: Ethical Issues in States of Impaired Communication With Intact Consciousness and Language

Introduction

Currently Available Alternative/Augmentative Communication Strategies

Disorders That May Reduce Communication While Sparing Cognition

Anterior Pontine Lesions

High Cervical Spinal Cord Lesions

Amyotrophic Lateral Sclerosis

Medical Decision-Making Once Communication is Established

Anterior Pontine Lesions

High Cervical Spinal Cord Lesions

Amyotrophic Lateral Sclerosis

The Right to Withhold and Withdraw Treatment

Supporting Patients Who Decide to Withhold or Withdraw Life-Sustaining Treatment

References

Chapter 20: Ethical Issues in the Neurology of Aging and Cognitive Decline

The Ethical Challenges of Preclinical Alzheimer's Disease

Symptomatic Disease and the Ethics of Impaired Decision-Making

Ethical Issues in Advanced Dementia

References

Chapter 21: Ethics in Neurodevelopmental Disability

Introduction

Part I: Neurodevelopmental Disabilities

Classification and Diagnosis

Cerebral Palsy

Autistic Spectrum Disorders

Part II: Ethical and Social Questions in Neurodevelopmental Disability

Decision-making and Children With Developmental Disability

Respect for Autonomy in Developmental Disability

Proxy Decision-making

Best Interest Standard

Shared Decision-Making

Assent and Dissent

Autonomy, Shared Decision-Making, and the Transition to Adult Healthcare

Personhood, Justice, Quality of Life, and Attitudes Toward Disability

Quality of Life With Disability

Part III: Responding to Requests for Unproven or Alternative Therapies

Conclusion

Acknowledgments

References

Chapter 22: Ethical Issues in Neurogenetic Disorders

Background

Targeted Genetic Testing (Sanger Aequencing)

Background

Presymptomatic Patients

Carrier Testing and Prenatal Screening

Next-Generation Sequencing (Whole Exome and Whole Genome Sequencing)

Background

Incidental Findings

Privacy Issues

Research Diagnostic Testing

Disclosure of Results to Families

Portable Legal Consent

Genetic Therapies

Background

Enzyme Replacement Therapy

Gene Therapy

Stem Cell Therapy

Conclusions

References

Chapter 23: Public Policy and Healthcare Systems

Introduction

Comparing National Systems

Single-payer Healthcare Systems

Private Healthcare Systems

Hybrid Healthcare Systems

Access, Choice, and Cost

Society's Healthcare Costs

Aging of Populations

Prescription Medication

Climate of Litigation

Electronic Healthcare Records

Evidence-based Medicine

Coding and Documentation

Coding for Services

Documentation

Incentive, Documentation, Value, and Quality

Concluding Remarks

References

Chapter 24: Research Involving Human Subjects: Ethical and regulatory Issues

Some History

Sulfanilamide Experiments

Experiments With Poison

Key Conceptual Foundations

Ethical Review Boards

IRB Structure and Operation

Approval Criteria Other than Informed Consent

Minimization of Risks to Subjects

Equitable Selection of Subjects

Data Monitoring, Privacy, and Confidentiality

Informed Consent

Vulnerable Subjects

Conclusion

Referenes

Author's Note

References

Chapter 25: The Ethics of Clinical Research in Low- and Middle-income Countries

Introduction

Motivations to Conduct Clinical Research in LMIC

To Redress Unmet Health Needs

To Develop Research Capacity

To Conduct Research With Simpler Regulatory Requirements and at Lower Cost

Specific Ethical Challenges of Clinical Research in LMIC

Study Design: Design of Placebo-controlled Clinical Trials in LMIC Despite Developed World Availability of Proven Effective ...

Study Design: Conduct of Studies Responsive to Health Concerns of Primary Interest to HIC

Study Oversight: Inadequate Regulatory Oversight in LMIC

Subject Enrollment: Informed Consent in LMIC

Study Conduct: Management of Subject Risk During Clinical Research in LMIC

Study Conduct: Provision of Routine Clinical Care to LMIC Research Subjects

After Study Closure: Provision of Therapies Proved Effective in LMIC Research Studies

Conflict of Interest Between Scientific And protective Priorities

Unintended Adverse Societal Effects of the Conduct of Clinical Research in LMIC: "Brain Drain"

Use of Tissue Samples From LMIC

Navigating the Ethical Challenges of Clinical Research in LMIC

Investigator Awareness: Education About the Ethical Challenges of Clinical Research In Lmic

Study Design: Conduct of Research Responsive to LMIC Needs

Augmentation of LMIC Research Infrastructure

Collaboration With Host Country Investigators and Community Leaders

Subject Enrollment: Blended Models of Informed Consent

Realistic Goals That do not Encumber Lmic Researchers With Responsibility for Fixing All LMIC Challenges

Budgetary Restrictions on Ethical Conduct of Clinical Research in LMIC

The Consideration of "Ethical Imperialism"

Conclusions

References

Chapter 26: The Ethics of Surgically Invasive Neuroscience Research

Statement of the Problem

Degrees of Invasiveness

Special Considerations of Side-Effects and Harms

What Populations are We Justified in Studying and for Which Purposes?

Value-Rich Interpretations: Metrics for Success and Assumptions

Cross-Cultural Values

Concluding Remarks

References

Chapter 27: The Ethics of Neuroenhancement

Statement of the Problem

Enhancements

Movement

Cognition

Mood and Affect

Noninvasive Brain Stimulation

Ethical Dilemmas

Safety

Character and Individuality

Distributive Justice

Coercion

Special Populations

Children

Soldiers

Future Considerations

References

Chapter 28: Neuroethical Issues in Clinical Neuroscience Research

Introduction

Ethical Challenges in Neuroimaging Research: An Overview

Neuroimaging Research Involving Festnis

Ethical Challenges in Neuroimaging Research Involving Festnis

Assessment of Risks and Burdens

Risks Associated With the Scan Itself

Risks Associated With Treatment Delays

Risks Associated With Incidental Findings

Assessment of Benefit

Direct Benefit

Social Value and Scientific Quality

Subject Selection

Justice

Responsiveness and Poststudy Access

Consent and Capacity

Summary of Recommendations

Conclusion

References

Chapter 29: Neurologic Disorder and Criminal Responsibility

Introduction

Voluntary Action

Mens Rea

The Insanity Defense

Conclusion

Further-Reading

References

Chapter 30: Pragmatic Neuroethics: the Social Aspects of Ethics in Disorders of Consciousness

Introduction

Part 1: Social Dimensions of Ethics: a Pragmatic Perspective on Neuroethics and Bioethics

Part 2: Examining the Social Aspects of Ethics in Disorders of Consciousness

The Impact of Public Understanding of Disorders of Consciousness on Clinical decision-making

Media Reports of the Case of Terri Schiavo

Other Media Depictions of Disorders of Consciousness

Understanding the Impact of Social Context and Relationships on Clinical Decision-Making

Furthering the Commitment to the Social Nature of Ethics

Acknowledgments

References

Chapter 31: The Nature of Consciousness

Concepts

Consciousness in Context

Senses of Consciousness and Self-Consciousness

The Etymology of "Consciousness" and "Conscience"

What is Meant By "Conscious"?

Consciousness as the Waking State

Consciousness as Awareness

What is Meant By Self-Conscious?

Self-Consciousness as Proneness To Embarrassment

Self-Consciousness as Self-perception

Self-Consciousness as Self-monitoring

Self-Consciousness as Self-recognition

Self-Consciousness as Awareness of Awareness

Self-Consciousness as Self-knowledge

The Neurobiology of Conscious States and Contents

States of Consciousness

The Electric Correlates of Conscious States

The Control of Conscious States

Anatomy: the Reticular Activating System

Physiology: Patterns of Neuronal Discharge and Brain Metabolism

Pharmacology: Modulation of Sleep and Wakefulness

Awareness: the "Contents of Consciousness"

Do We Know what We Experience?

Exquisite Correlations

Visual Awareness

Changing Experience Without Altering Stimuli

Internal and External Awareness, the "Resting State" and the "Default Network"

Unconscious Processes

The Concept of Unconscious Processes

Changing Behavior Without Altering Experience

Concepts of Impaired and Altered Consciousness

Pathologies of Conscious State

A Taxonomy of Impairments

State Boundary Dissociation

Pathologies of Awareness

Pathologies of self-awareness

Contemporary Models and Theories of Consciousness

Anatomy and Physiology: the "where" and "how" of Consciousness?

Cognitive/Information-processing Approaches

Social Theories

A theory of Theories?

The Philosophy of Consciousness

Three Intuitions About Consciousness

Philosophic Approaches

Dualism

Mind–Brain Identity Theory

Functionalism

Broadening the Explanatory Horizon

References

Chapter 32: Dementia and Personal Identity: Implications for Decision-Making

Introduction

The "Someone Else" Problem

Is Personal Identity Really What matters?

Contemporaneous Expression of Values and Preferences

Temporally Distant Expression of Values and Preferences, Without Interval Change

Temporally Distant Expression of Values and Preferences, With Interval Change

Dementia and Concern for One's Own Future

Difficulties With Critical Interests and Precedent Autonomy

Conclusions

References

Chapter 33: The Definition and Criterion of Death

Introduction

History

The Role of Technology in the Rise of Brain Death

The Role of Organ Transplantation

The Role of Withdrawal of Ventilator Support

The Advent of Organ Donation After the Circulatory Determination of Death

Biophilosophic Analyses and Formulations of Death

The Paradigm of Death

The Definition of Death

The Criterion of Death

The Whole-Brain Criterion of Death

The Brainstem Criterion of Death

The Higher-Brain Criterion of Death

The Circulatory Criterion of Death

Organ Donation After the Circulatory Determination of Death

Other Areas of Controversy

Religious Perspectives

Christianity

Judaism

Islam

Hinduism and Other Religions

Legal Perspectives

American Death Laws With Religious Provisions

The Future

Acknowledgment

References

Index

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