Losing My Mind: An Intimate Look at Life with Alzheimer's

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860 · N Engl J Med, Vol. 347, No. 11 · September 12, 2002 · www.nejm.org

The Ne w E n g l a nd Jo u r n a l o f Me d ic i ne

Book Reviews

THE ROLEOF COMPLEMENTARY & ALTERNATIVE

M^EDICINE: ACCOMMODATING P^LURALISM

(Hastings Center Studies in Ethics Series.) Edited by Daniel Callahan. 208 pp. Washington, D.C.,

Georgetown University Press, 2002. $44.95.

ISBN 0-87840-877-0.

OWEVER one regards complementary and alternative medicine, there is little question that it represents a major sociocultural phenomenon. Large numbers of the general public, including many patients, use the products and services of complementary and alternative medicine.

In 2000, Americans spent $10 billion on herbs, vitamins, and other dietary supplements. The estimated growth in the number of chiropractors, acupuncturists, naturopaths, optometrists, podiatrists, and other nonphysician clinicians between 1995 and 2005 is double that of physicians. This situation is replicated in most developed countries.

There is some research data and a great deal of specula- tion about what contributes to this substantive degree of in- terest in therapies often denounced by scientists and medical practitioners as unproved, nonsensical, or inconsistent with a scientific understanding of human physiology and disease. Most research projects attempt to define the problems

— desperation, depression, ignorance — that bring patients to complementary and alternative medicine. But if one moves away from the assumption that the behavior involved is like- ly to be deviant, other factors can be posited as having major if not primary roles.

Over the past few decades, patients have become increas- ingly interested in forgoing passivity in the doctor–patient relationship and demanding full information and something akin to a partnership role. There is a desire for more control over one’s own health care and an unwillingness to rely ex- clusively on health professionals. This is, after all, the era of do-it-yourself money management and house repair, a pref- erence for control and personal involvement that extends to health care and other areas of life. Furthermore, health information, albeit full of inaccuracies, is readily available on the Internet, and physicians today are familiar with patients who arrive for appointments with reams of printouts in hand.

Thanks in no small part to managed care, mainstream health care has become more impersonal, and time spent with physicians has diminished.

Complementary and alternative medicine and its practitioners offer something that patients want and do not get in mainstream medicine, which is the basic issue addressed in this very interesting book. In the introductory words of its editor, Daniel Callahan, the contributors to the book are

“sympathetic to CAM [complementary and alternative medicine], take it seriously, and yet are quite willing to subject it to criticism.” The chapter authors represent a spectrum of fields from which the sociocultural underpinnings and implications of complementary and alternative medicine

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come to light — medicine, philosophy, culture and folklore, research methodology, and sociology.

A contentious argument tackled early in the book reflects many of these perspectives. Marcia Angell and others have stated that studies must offer plausible biologic mechanisms for reported effects and that in the absence of plausible mechanisms, research on complementary and alternative medicine has no validity. Critics of this “prior plausibility”

requirement claim that it is spurious. An example of this type of clash is the moxibustion study reported in the Journal of the American Medical Association in 1998, in which 260 primigravidas in the 33rd week of pregnancy, all with fetus- es in breech presentation as diagnosed by ultrasonography, were randomly assigned to receive standard care or treatment with moxibustion, a traditional Chinese therapy for breech birth that involves burning moxa rolls on the corner of the fifth toe. It sounds absurd, but the results favored the Chi- nese method (P<0.001). Angell argued that burning Arte- misia vulgaris on the fifth toe (and presumably anywhere else) cannot affect a fetus, so that data showing it did so must perforce be wrong. Moxibustion is not supported by West- ern medical tenets, but it was supported by research data.

This clash of belief systems leads to questions discussed in this book. Is it appropriate to reject data on the basis of the- oretical inconsistencies? Should theory be given precedence over rational inquiry? How might mainstream medicine deal with such challenges? Certainly, controlled trials are neces- sary for complementary and alternative medicine, but how can we deal simultaneously with its often incompatible ex- planatory systems?

It is argued in this book that the value of positive results of research on complementary and alternative medicine is not impaired even if those results are discovered to be attrib- utable to placebo effects alone. Placebo effects add to the benefits of conventional therapies as well, and the goal, it is stressed, is to benefit patients, regardless of the placebo contribution. Placebo benefits stem from patients’ belief in the value of treatment but also from spiritual, cultural, or emotional aspects of the therapy — aspects of health care that are desired by the majority of patients across studies.

The conclusion of several contributors is that the health care system must adopt a philosophy better attuned to the need of patients for comprehensive care, a philosophy that can accommodate unusual beliefs and the desire for individ- ualized attention and cultural sensitivity. As someone em- bedded in mainstream science, working with patients who have major, potentially fatal illnesses and who are eager for such attention, I found wanting in this book attention to the practicalities of implementing the authors’ recommenda- tions. Patients deserve access to complementary therapies that have been shown to reduce pain and suffering. Health care programs should provide access to proven approaches in culturally sensitive ways and on an adjunctive basis. Bring- ing this level of sensitivity and effort directly into the doctor–patient relationship — “medicalizing” it and asking the physician to assume responsibility for the provision of sup- portive care — seems an impossible task. Others in the health care system can provide such adjunctive care.

That caveat aside, Callahan has brought together a thoughtful group of authors whose insights and conclusions, although controversial, are enlightening and challenge us to

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N O T I C E S

N Engl J Med, Vol. 347, No. 11 · September 12, 2002 · www.nejm.org · 861 adopt broader perspectives in seeking to understand the very

important sociocultural phenomenon that complementary and alternative medicine represents.

BARRIE R. CASSILETH, PH.D.

Memorial Sloan-Kettering Cancer Center New York, NY 10021 [email protected]

LOSING MY MIND: AN INTIMATE LOOK AT LIFE WITH ALZHEIMER’S

By Thomas DeBaggio. 224 pp. New York, Free Press, 2002. $24.

ISBN 0-743-20565-0.

ERBALIST and writer Thomas DeBaggio describes eloquently the terror evoked by the label “Alzheimer’s disease.” His book joins works of fiction, nonfiction, and alleged nonfiction that portray their authors’ struggles with the demon of dementia. In general, we should celebrate such attempts to highlight the perspective of the patient, client, or consumer with descriptions of the writer’s own experience with illness. Nevertheless, efforts to inform and influence the public through such books invite criticism as well as cele- bration.

Losing My Mind is intentionally written in several differ- ent voices. Incompletely referenced quotations from the Johns Hopkins White Papers, National Institute on Aging progress reports, and various journal articles pepper the book. Although they reflect a certain zest for science, they are ultimately distracting. The author’s research for the book did not prevent errors such as the claim that donepezil slows the death of nerve cells or oversimplifications of issues sur- rounding apolipoprotein E testing. Short aphorisms, high- lighted by italics, have been constructed with care to capture generalizations about the experience of dementia, but like much of the book, these sentences are excessively dramatic and overwritten. One example appears at the back of the book: “What better way to die than celebrating life?”

The main part of the book communicates DeBaggio’s powerful memories of earlier life and the current state of the author’s intelligence. Stories of his childhood — for example, the story of building a crystal radio when he was a Cub Scout — mingle with the anger and terror of his di- agnostic process. DeBaggio became a spokesperson for the Alzheimer’s Association, a favorite of Noah Adams on Na- tional Public Radio, and a reluctant but show-stealing speak- er at the World Alzheimer’s Congress held in Washington, D.C., in 2000. He is currently writing more books about his experience with dementia, perhaps inspired by the suc- cess of his first work.

This is not the first book that has caused me to question the appropriateness of a disease label either for a specific person or as a social construct. Could such an eloquent, in- telligent writer, especially one who so graphically describes the failing of his writing at the end of the book, have Alz- heimer’s disease? Perhaps he received assistance in writing, but if so, why was this assistance not listed in his acknowl- edgements? Could he have an Alzheimer’s disease variant?

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Hints are given about a family history, but the results of the research into the pedigree of this 57-year-old man are not fully shared. Is this a familial dementia or not? The issues of diagnosis and social construction of disease are essential to this book because of the fears expressed by the author about his label.

Perhaps DeBaggio is describing the normal aging of a 57-year-old. Might he have benign senile forgetfulness, aging-associated memory impairment, or even mild cognitive impairment? These are labels. Which of them are diagnoses of disease? None. Which might be a harbinger of further cognitive decline or even dementia? All of them, but so is aging itself, to one degree or another. Diminished mental powers, from one cause or another, will accompany aging for a long time to come. But we should not forget positive aspects of cognitive aging, such as opportunities for sharing wisdom among generations. Does the fear of Alzheimer’s disease overshadow efforts to enhance cognitive vitality as we age?

Between normality and dementias such as Alzheimer’s disease there are more hilly, continuous relations than chasms of categorical distinctions. Alzheimer’s disease is a social marker, and those who control this marker are powerful. As efforts to promote the early recognition of Alzheimer’s disease continue, how much age-related cognitive change will be medicalized?

Can it be that one of the listeners to the National Public Radio program on which DeBaggio was featured was correct in asking whether more suffering than we imagine is caused by the labels that doctors apply? Whatever the best label for DeBaggio, he does us a service in documenting the power of fear of Alzheimer’s disease. The treatment of the phobia of a disease is quite different at the levels of both the person and the society than the therapy for the disease itself.

What if someone had what we now call Alzheimer’s disease and was not so afraid? What if we could die in peace?

What if we really could celebrate life as we died?

PETER J. WHITEHOUSE, M.D., PH.D.

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