Breast Cancer: Sharing the Decision

Anna M. Maslin with Trevor J. Powles, eds. New York (NY): Oxford University Press, 1999. 263 pp., illus. $34.50. ISBN 0-19-262967-0

During the last 20 years, it has become routine for cancer patients to expect to share the decision making regarding their treatments. In practice, doctor–patient relationships are often not as open as patients wish. Breast Cancer: Sharing the Decision is a book that assumes that most clinicians pay only lip service to informed patient choice, so it sets out to instruct medical personnel on the facts of shared decision making. Although the book was written by several British clinicians about the British medical system, there are several references to American research, and, in any case, the problems discussed are universal.

A. M. Maslin, formerly a senior nurse specialist at a breast cancer clinic and currently on the health faculty of the University of Northumbria, opens the discussion with five essays that review the subject literature. Thus, the reader first gains the philosophic bases for an ethical position about a patient’s ability to access needed information and, subsequently, her ability to participate in treatment decision making. These bases are the duty-based action from Immanuel Kant, utilitarian action from Jeremy Bentham et al., and autonomy theories dating as far back as Aristotle. Surprisingly, Maslin is able to make all of this material both accessible and interesting in 15 pages. The next three essays cover the impact of evidence-based medicine on women’s choices, the role of communication and how it affects the psychologic states of women who face decisions, and the practicalities of gaining good-quality information. The last chapter of the literature review surveys the various approaches to shared decision making: verbal, written, audio or video tapes, and now computer programs. The conclusion is that, while any form of communication is better than none, it appears that psychologic support and treatment options are best provided by a clinician trained in communication skills, with the emphasis on “trained.”

The subsequent chapters, contributed by clinical specialists, discuss the aspects of such training. Chapter 7 examines studies that discuss the information that patients need and offers an ordered list of nine items that women need to know before making a breast cancer treatment decision.

Chapters 8–13 comprise the personal experiences of various clinicians and the views of patients while participating in the decision-making process. A breast-care nurse (often the first clinician a patient sees in the U.K.) concludes that specially trained nurses, who are respected members of the medical team, can improve patients’ knowledge and decrease their levels of anxiety. A radiologist discusses the complexity of breast cancer screening and a patient’s understanding of the delicate balance between advantages and disadvantages. Two geneticists cover genetic factors in breast cancer. Oncologist and editor Trevor Powles surveys the efficacy of tamoxifen in treating women. A surgeon discusses surgical options based not only on tumor characteristics but on the patient’s preferences, advising that the patient be given meticulous risk–benefit information. A medical oncologist reviews adjuvant treatments, which are often based on value judgments that can only be made if the appropriate information is shared between doctor and patient. He concludes that doctors often underestimate what patients are prepared to go through, even for a small increase in the chance of cure. And finally, a radiologist examines information that patients need about his specialty.

All of the information is imparted in formal scientific style, with parenthetic documentation inside sentences. Although this style can be annoying to a speed reader, it gives authenticity to the various views. To make the information easily digestible, the tone is informal, the vocabulary, although often technical, is unpretentious, and each essay is short. Each contributor has accomplished, in about 10 pages, remarkable feats of summarizing the pertinent scientific studies, incorporating his or her own clinical experience, and honoring patients’ case studies, as told in their own voices. Patient stories lean toward an emphasis on how their decisions were affected by information withheld or given to them. Because of the current medical system in the U.K., patients were often at the mercy of chance when meeting the clinicians who helped them. Although most American women can choose their doctors and hospitals, they will have similar experiences because of the emotional difficulty of changing doctors during a stressful time. By the time you realize your doctor isn’t giving you the time or the attention that you need, you are midjourney and not eager to change captains.

The editors expect this book to be given to medical personnel during their training. Since it is a relatively small book with a thorough index, it should also find a place on the personal shelf of doctors now engaged in informed decision making with their patients.