Ethical and Legal Issues in Neurology

Handbook of Clinical Neurology 3rd Series

Foreword

Preface

Contributors

Chapter 1. Ethical principles and concepts in medicine

Abstract

Introduction

Overview of ethics

Ethical theories

Ethical principles

Alternative approaches to medical ethics

Conclusion

References

Further reading

Chapter 2. The analysis and resolution of ethical dilemmas

Abstract

Introduction

A Structured approach to analyzing ethical dilemmas

Relevant legal and professional considerations

Next steps in the absence of resolution

Conclusion

Acknowledgment

References

Chapter 3. Ethics committees and consultants

Abstract

Introduction

Clinical EC

Ethics committees

Maintenance of ethics committees and services

The reported experience with ethics consultation in patients with neurologic diseases

Value of ethics consultation

Conclusion

References

Chapter 4. Legal process, litigation, and judicial decisions

Abstract

Introduction

Autonomy and law

Beneficence and law

Justice and law

Concluding commentary

References

Chapter 5. Law, ethics, and the clinical neurologist

Abstract

Introduction

Law

Ethics

Interplay between ethics and law

Ethics manifested in law – examples relevant to neurology practice

Respect for autonomy

Emerging issues

References

Chapter 6. Religion and medical ethics

Abstract

Introduction

Theonomous decision-making

Transvaluing suffering

Spiritual or mystical beliefs and values

Current areas of debate

Conclusion

References

Chapter 7. Professional conduct and misconduct

Abstract

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

Abstract

Introduction

Definitions

Epidemiology

Causes of medical error

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

Abstract

Introduction

Defining medical professionalism

Three hallmarks of professionalism

Challenges to professionalism

Addressing the challenges

Future directions

References

Chapter 10. Palliative treatment of chronic neurologic disorders

Abstract

Introduction

Parkinson's disease and related conditions

Dementia

Multiple sclerosis

Amyotrophic lateral sclerosis

References

Chapter 11. Care of the dying neurologic patient

Abstract

Introduction

Causes of death

End-of-life decisions

Optimizing care of the dying

Medication at the end of life

References

Chapter 12. Withdrawing and withholding life-sustaining treatment

Abstract

Introduction

Distinctions between withholding and withdrawing treatment

Decision-making regarding life-sustaining treatment: principles

Decision-making regarding life-sustaining treatment: practice

Recent research regarding forgoing LST in neurologic practice

References

Chapter 13. European perspectives on ethics and law in end-of-life care

Abstract

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

Abstract

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

Abstract

Introduction

Regulations of physician-assisted suicide and euthanasia

The ethical debate

Public and medical-professional opinions

Practices

Concluding remarks

References

Further reading

Chapter 16. Brain death

Abstract

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

Abstract

Introduction

Managing pain in patients with disorders of consciousness

Ethical challenges in end-of-life care

Assessing quality of life in severely dependent patients

Conclusions

References

Chapter 18. Ethical issues in the care of the neurologically devastated infant

Abstract

Introduction

History

Legal guidelines

The Groningen protocol

Professional codes and bioethics reviews

Religious beliefs

Commentary

Conclusions

References

Further Reading

Chapter 19. Ethical issues in states of impaired communication with intact consciousness and language

Abstract

Introduction

Currently available alternative/augmentative communication strategies

Disorders that may reduce communication while sparing cognition

Medical decision-making once communication is established

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

Abstract

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

Abstract

Introduction

Part I: Neurodevelopmental disabilities

Part II: Ethical and social questions in neurodevelopmental disability

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

Abstract

Background

Targeted genetic testing (Sanger sequencing)

Next-generation sequencing (Whole exome and whole genome sequencing)

Research diagnostic testing

Genetic therapies

Conclusions

References

Chapter 23. Public policy and healthcare systems

Abstract

Introduction

Comparing national systems

Society's healthcare costs

Coding and documentation

Concluding remarks

References

Further reading

Chapter 24. Research involving human subjects: ethical and regulatory issues

Abstract

Some history

Key conceptual foundations

Ethical review boards

IRB Structure and operation

Vulnerable subjects

Conclusion

Author's note

References

Chapter 25. The ethics of clinical research in low- and middle-income countries

Abstract

Introduction

Motivations to conduct clinical research in LMIC

Specific ethical challenges of clinical research in LMIC

Navigating the ethical challenges of clinical research in LMIC

Conclusions

References

Chapter 26. The ethics of surgically invasive neuroscience research

Abstract

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

Abstract

Statement of the problem

Enhancements

Noninvasive brain stimulation

Ethical dilemmas

Special populations

Future considerations

References

Chapter 28. Neuroethical issues in clinical neuroscience research

Abstract

Introduction

Ethical challenges in neuroimaging research: an overview

Neuroimaging research involving festnis

Ethical challenges in neuroimaging research involving festnis

Summary of recommendations

Conclusion

References

Chapter 29. Neurologic disorder and criminal responsibility

Abstract

Introduction

Voluntary action

Mens rea

The insanity defense

Conclusion

References

Further Reading

Chapter 30. Pragmatic neuroethics: the social aspects of ethics in disorders of consciousness

Abstract

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

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

Abstract

Concepts

Senses of consciousness and self-consciousness

The neurobiology of conscious states and contents

Contemporary models and theories of consciousness

The philosophy of consciousness

References

Further Reading

Chapter 32. Dementia and personal identity: implications for decision-making

Abstract

Introduction

The “someone else” problem

Is personal identity really what matters?

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

Abstract

Introduction

History

Biophilosophic analyses and formulations of death

The definition of death

Other areas of controversy

Religious perspectives

Legal perspectives

The future

Acknowledgment

References

Index