Book Review

Ethical Dilemmas in Neurology

N Engl J Med 2000; 343:975-976September 28, 2000

Article

Ethical Dilemmas in Neurology
(Major Problems in Neurology. Vol. 36.) By Adam Zeman and Linda L. Emanuel. 219 pp., illustrated. Philadelphia, W.B. Saunders, 2000. $95. ISBN: 0-7020-22276

Despite, or maybe because of, the fast pace necessitated by the increasingly complex structure of medical care, the clinical neurologist needs to reflect on the dilemmas that often arise in daily practice. The topics in this book resonate with situations frequently encountered in real life, and although the recommended guidelines may not suit everyone, the discussions are generally clear and provocative. This book can serve as a guide with respect to both the philosophical basis and the practicalities of clinical neurology.

The first chapter (by Grayling) gives a concise summary of the history of ethics in the Western philosophical tradition and presents concepts that are central to the subsequent essays. Grayling sees physicians as workers in a managed-care world who are threatened by conflicts of interest and issues involving money, power, and prestige. Against this background, he discusses the changing role of the medical practitioner, from a keeper of secrets to an educator and facilitator of access to information. In fact, the change from authority to supporter of patients' autonomy has brought about a vast change in the ethical landscape. Many of the contributors to this book struggle to provide a new definition of ethical behavior for this changing role.

The book is divided into sections corresponding to the broad areas of clinical practice in which one might encounter ethical dilemmas: diagnosis and communication; therapy; funding, research, and conflicts of interest; and end-of-life issues. The clarity and quality of the essays vary, but in general the authors clearly delineate the ethical issues and provide specific options, if not guidelines, for addressing them in clinical practice. The reader will find most chapters provocative, clearly illustrated by case examples, and helpfully summarized.

A number of the chapters stand out because of their clarity. In “Should Consent Be Required for an HIV Test?” Dresser summarizes the arguments for and against informed consent for testing when there are public health risks and potential support for society's right to know. Beginning with the assumption of the primacy of individual rights, she discusses the factors that might change views about compulsory testing: discrimination, effectiveness of educational tools, improved therapy, prophylaxis or the timing of interventions, and the ability to affect the rate at which disease is transmitted. Dresser focuses on infection with the human immunodeficiency virus, but many of the issues apply to mandatory screening programs for genetic or metabolic disease and to the assessment of genetic risk in individuals and families.

In their chapter on predictive testing for fatal inherited diseases, Wolf and Horejsi outline the physician's responsibility to provide genetic counseling or referral to a specialist. The examples they choose address predictive genetic testing in three types of neurologic disorders: late-onset, early-onset, and multifactorial disease. Not discussed, however, are nonfatal diseases for which an assessment of the genetic risk may be helpful in family counseling or planning; the assessment of risk in potential gene carriers before childbearing; and risk assessment for disorders in which early intervention may improve medical care and the outcome. The authors might also have included a section on preimplantation testing and selection of embryos in assisted reproduction.

The three chapters on disclosure of the diagnosis, by Wessely, Howard, and Berg, were written from medical and judicial perspectives, and they discuss important issues of confidentiality. The physician is often caught between a duty to the patient and a duty to the public. In these chapters, the authors provocatively highlight the distinction between the ethical requirement to maintain patients' confidentiality and the needs of society, family members, or even the patients themselves. Pertinent to neurologic practice, these dilemmas may involve public safety (e.g., patients with dementia or seizure disorders who drive), the protection of vulnerable persons (e.g., children or elderly persons) from abuse, registration of cases of disease (e.g., Creutzfeldt–Jakob disease), assessment and monitoring of the health of a population, or toxic or genetic risk (e.g., in the case of hypertensive stroke, multiple sclerosis, or inherited neurodegenerative disease).

Emanuel's excellent chapter on advance directives emphasizes the importance of the clinician's role in facilitating communication and planning before the patient's death. There is a clear discussion of how to engage in this process, with helpful case examples. Meier, Myers, and Muskin present an excellent and intellectually challenging case study of assisted suicide. They focus on the psychological aspects of the physician–patient relationship, highlighting the symbolic power of the physician's role as an advocate for health and life, and the conflict it can evoke. The discussion is educational rather than prescriptive with respect to the morality and ethics of assisted suicide.

Other essays address issues involving informed consent for testing, disclosure of the risk of genetic disease, the limits of medical knowledge and diagnosis, confidentiality, the conduct of clinical trials, conflict of interest, and end-of-life decisions and management. These provocative essays will give busy clinicians an opportunity to ponder issues they rarely have time to consider. In addition to neurologists, primary care physicians, nurse practitioners, research coordinators, and hospital administrators will find the book useful.

Katherine B. Sims, M.D.
Massachusetts General Hospital, Boston, MA 02114