The Rights of Patients: The Authoritative ACLU Guide to the Rights of Patients, Third Edition (American Civil Liberties Union Handbook)
The Rights of Patients begins with the following vignette: Boston Globe medical reporter Betsy Lehman undergoes a stem cell transplant to treat her breast cancer. A young physician misreads the protocol, and she is given four times the proper dose [of chemotherapy] over a period of days. Desperately ill, she calls a friend to say "something's wrong"; a little more than an hour later she is found dead in her room. She was thirty-nine years old and one of forty-four thousand to ninety-eight thousand patients who die each year in the United States from medical errors. According to George Annas, the Lehman case and others that he cites demonstrate that "patient rights are not just abstractly important: they can literally save your life." (Figure) This book is a fairly comprehensive examination of patients' rights, from reproductive health and research to care of children and the dying. It provides useful information regarding laws and court cases that delineate patients' rights. But it is primarily concerned with legal rights, rather than the moral rights that would interest bioethicists. Accordingly, Annas enumerates five "core patient rights": the right to make informed decisions, the right to privacy and dignity, the right to refuse treatment, the right to emergency care, and the right to have an advocate. In this edition, he especially emphasizes the right of patients to have an advocate because "when people are very sick they are not physically or psychologically capable of . . . exercising their own rights." Consequently, at the end of most chapters, he includes a very useful section called "tips for advocates." One problem with Annas's approach is that the emphasis on patients' rights frequently seems excessive and misdirected; almost every aspect of health care is examined through the lens of such rights. For instance, it is unclear why Annas believes that paying more attention to patients' rights could have saved Lehman's life. She received and signed an extensive informed-consent document, one that included a warning that death was a possible outcome of the study; she had an advocate in her husband, a knowledgeable cancer researcher; and she was closely monitored. Experts on medication errors believe that such mistakes are unrelated to neglect or a violation of patient rights but, rather, are a "systems" problem. The solution to such tragic, iatrogenic deaths is improved systems and information technology for the dispensing of drugs and more standardized hospital protocols and operations. Ultimately, Annas acknowledges that even with more emphasis on patients' rights, "Betsy Lehman might still have had one or more overdoses." Patients' rights do not encompass or protect against all the problems with the health system that Annas highlights. Even when the rights of patients are relevant, the restricted focus of this book obscures an appreciation of other relevant considerations and the problems that patients' rights themselves might generate. For instance, in discussing informed consent, Annas argues that patients have a right to a clear, concise explanation . . . of all proposed treatments; all reasonable medical alternatives (whether or not they are covered by the patient's health plan); the risks of death and serious complications associated with each proposed treatment and alternative (including no treatment); likely problems of recuperation; and the probability of a successful outcome (including the physician's own experiences with the treatments, risks, benefits, and outcomes) . . . as well as the existence of any research protocols that are relevant to the patient's condition and their availability. . . . For procedures that entail a risk of death or serious disability, all aspects of informed consent will be explained on a written form . . . that requires the signature of the patient. The need to include all this information is the reason that informed-consent documents have expanded to 4 to 5 single-spaced pages for simple interviews and 10 or even 15 pages for medical interventions. Indeed, taking this requirement seriously would mean that the dispensing of almost all medications, including antibiotics, would require a signed written form. This recommendation also fails to acknowledge that substantial data indicate that such written documents are not particularly effective in enhancing patients' understanding of their medical choices. More important, emphasizing patients' rights requires time and entails opportunity costs. The time of highly trained physicians, nurses, pharmacists, and technicians is expensive. Spending more time ensuring informed consent or privacy means less time spent on other things and more money devoted to health care. And one major opportunity cost of this allocation of time seems to be worse care for the poor, either because more people are uninsured as health premiums rise or because the uncompensated care they receive gets squeezed out. There has to be a balance between patients' rights and other values and priorities. In health care, no one should dispute that the rights of patients are important, but so are information technology, hospital operations, physicians' and nurses' competence and communication skills, cost-effectiveness, outcomes research, clinical research, and a multitude of other things. All these factors need to be weighed against each other; having patients' rights dominate all other considerations invites its own set of problems. Only by addressing all these things can deaths like Lehman's be prevented and high-quality care be dispensed to all people in a humane and respectful manner. If you want to know your rights as a patient, consult Annas's book. However, if you want to know how to ensure that you get appropriate, high-quality care and avoid adverse outcomes, you will need to do much more than insist on your rights.Ezekiel J. Emanuel, M.D., Ph.D.Copyright © 2004 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.--This text refers to an out of print or unavailable edition of this title.