•  Medication Errors •  Navigating Health Plan Options

The Rights of Patients: The Authoritative ACLU Guide to the Rights of Patients (American Civil Liberties Union Handbook)
By George J. Annas
Southern Illinois University Press
Third Edition
432 pp $19.00

When my grandmother died of colon cancer more than 30 years ago, her doctors decided (for her own good, in their minds) not to tell her that she was suffering from a fatal illness. Perhaps she would have preferred it that way, perhaps not. In any event, their silence deprived her of the opportunity to make some final peace with her life and her troubled relationships with her children. Most important to me, it also deprived her of the chance to say goodbye to the four young grandchildren she adored.

Times have certainly changed. A similar scenario would be virtually inconceivable today. Any physician who withheld such vital information from a mentally competent individual -- even with the approval of other family members -- would be considered guilty of a gross violation of trust. These days it's a given that patients have the right to know everything about their diagnosis and treatment. And that's just the beginning.

The Rights of Patients, by George Annas, a professor and chairman of the health law, bioethics, and human rights department at Boston University's School of Public Health, is one of a series of handbooks on the rights of individuals in different areas of the law, published in cooperation with the American Civil Liberties Union. The first edition of this book came out in the 1970s, and Annas decided the time was ripe for a fresh look at the subject.

"Twenty-five years ago, patient rights was in its infancy and the term itself was contested," he writes in the preface to the new edition. "It was not uncommon for physicians to assert that patients had needs, not rights, and that asserting rights brought unnecessary conflict and discord into the doctor-patient relationship. This attitude has almost entirely disappeared -- so much so that the term 'patient rights' is now taken for granted."

In this comprehensive survey, Annas touches all the critical bases. He discusses such key topics as informed consent, access to medical records, privacy and confidentiality, the rights of research subjects, care of the dying, the right to pain relief, the Americans with Disabilities Act, organ donation, living wills and health care proxies, the right to refuse treatment, and a whole lot more.

In addressing each issue, Annas clearly specifies which rights are grounded in law -- whether through legislation or court rulings -- and which are simply considered ethical or moral obligations on the part of health care providers. He humanizes his account with details of key lawsuits and legal decisions, and on certain topics makes it clear that he believes current law is inadequate, contradicts common sense, or violates ethical and moral principles.

Annas also grounds his account in present-day political and health care realities. For example, although he applauds public anger over treatment limits imposed by managed-care companies, he argues that it is disingenuous to call any legislative effort to correct these problems a "patient bill of rights." It would be far more accurate to refer to such laws as "managed-care reform," he notes, as they only guarantee rights to people covered by managed-care plans. But that term clearly has less political appeal in a country that has steadfastly refused to ensure universal access to health care.

"It is... a strange and uniquely American phenomenon that although we take rights in health care seriously and try to design more effective ways of promoting and enforcing them, we resist the most central patient right of all: the right to health care," writes Annas. "There is no excuse for this... That the United States has not yet found a way to make health care accessible to all remains an international scandal."

Annas spends a great deal of time discussing the concept of informed consent, which holds that patients have the right to be told as much as possible about their medical situation and the treatment alternatives, including each option's potential benefits and risks. He cites the 1996 case of Donna Johnson, a patient in Wisconsin who underwent surgery for an enlarging brain aneurysm. Although she did not suffer from physical disabilities beforehand, the operation left her vision impaired and her speech and mobility damaged. She could no longer control her bladder and bowel movements.

Johnson sued, claiming that her surgeon had not fully disclosed the possible consequences of the operation. She also argued that he had not told her of his limited experience performing such procedures, thereby depriving her of the option of finding a physician with more experience. Not surprisingly, the court found in her favor.

Even if doctors follow the principle of informed consent, it doesn't mean that patients will always choose the course they suggest. Well-informed patients also have the right to refuse treatment -- even a potentially life-saving one, and even when such a refusal contradicts the recommendations of doctors, other health care providers, and family members. The major exception is when a person is found to be incompetent to make medical decisions, and by law such a finding cannot be based solely on the perceived irrationality of someone's medical choices.

"People have a right to decide whether or not to have their bodies invaded because of their overwhelming interest in bodily integrity and self-determination," writes Annas. "The patient is the one who must experience the medical invasion and live with its consequences. Physicians have no roving mandate to treat whoever they believe is in need of their services."

One of the major changes in this edition of The Rights of Patients is an increased emphasis on the idea that even patients with all their mental faculties should have an "advocate" -- someone, whether family member, friend, or trusted adviser, who can stay by their side in the hospital or the doctor's office and help represent their interests. Annas lets readers know that he is not referring to an advocate in the legal sense of the person who controls the affairs of someone deemed incompetent. Rather, he means someone who can be a trusted advisor and information broker at a time when a patient may be forced to make critical decisions while under enormous emotional stress.

Although a doctor is, theoretically, an advocate for the patient, Annas notes that physicians in today's health care system are under increasing pressure from those who actually pay the bills and don't necessarily have the individual patient's best interests at heart.

"The advent of managed care... means that treatment decisions are no longer made just between the physician and patient but may be constrained by insurance rules about eligibility and coverage for specific procedures," he writes. "Under many managed-care fee arrangements, physicians may also get paid more if they do not order tests or recommend expensive medical procedures than if they do."

The Rights of Patients is clearly written with the layperson in mind. It explains difficult ideas in easy-to-understand language, employs a reader-friendly question-and-answer format, and includes tips and suggestions for patient advocates at the end of each chapter. But while it is an invaluable resource for patients, it should also be required reading for physicians and everyone else involved in providing, and paying for, health care in the United States.

-- David Tuller reports regularly on health for The New York Times. A former staff writer for the San Francisco Chronicle, he has written for the Washington Post and Salon.com and is the author of Cracks in the Iron Closet: Travels in Gay and Lesbian Russia (Faber &Faber 1996).

First published March 4, 2004
Last updated February 28, 2008
Copyright © 2004 Consumer Health Interactive

Back to top of page