The treacherous path of truth-telling with demented patients.

Research in dementia has never been more intensive as we approach a better understanding of the dominant form of dementia, Alzheimer disease, through scientific work with transgenic mouse models, vaccine trials, gene localization, and new technologies for early recognition. Although we are still in the early investigative stages, it may not be long before genetic and neuroradiologic tests will provide unimpaired persons with reliable information about their likelihood of developing Alzheimer disease.1 There will be important ethical issues concerning the role of premorbid diagnoses, as there are issues now about disclosing the diagnosis of dementia to symptomatic patients. Marzanski addresses the latter concern and highlights an important and challenging clinical area—appropriate and effective communication with dementia sufferers. The question of whether there is adequate disclosure of information to patients regarding their diagnosis of dementia is explored in a survey of 30 consecutive patients with dementia. Fourteen of 30 patients appeared to have adequate insight by Dr Marzanski's criteria, based on the ability to correctly state their diagnosis or describe their symptoms. Twenty reported that no one had ever talked to them about their illness, and a similar number (21/30) desired more information. Estimating the reliability of responses from cognitively impaired patients is a formidable challenge. Without more detailed information about cognitive assessment, beyond the MMSE, few conclusions can be drawn regarding how these responses relate to the content and quality of communication with their physicians. We do not know—from what is reported—how many of those who desired more information also met criteria for adequate insight. Nor do we know whether the type of impairment and level of severity influenced the responses. Although this study design does not evaluate the quality and quantity of physician disclosure about dementia, the struggle of how to discuss dementia with patients and caregivers resonates for all physicians caring for older patients. The presence of sensitive and honest discussion about dementia may, in fact, be a quality indicator of caring for older patients. It reflects a level of effective communication and psychosocial therapeutics administered by health care professionals to older patients. In citing the work of Novak and colleagues,2 Marzanski aptly draws parallels between this issue and truth-telling about cancer. The cognitive dissonance for physicians is similar here. The fear of facing loss and death in our patients and, thus, in ourselves can be inhibitory, and medical school curricula likely still have some distance to travel before all physicians are appropriately trained in effective and appropriate communication regarding these issues.3 This distance is even greater when considering sensitive communication with those who are cognitively impaired. We might assume that several of the patients in Marzanski's study had moderate to severe dementia. This assumption is based on what we know about US medical practice. Patients are not typically recognized as cognitively impaired before they are moderately to severely affected.4 Furthermore, even among patients with moderate to severe forms of impairment, only 25% are likely recognized by physicians as having dementia.5 Dementia is not usually identified in earlier stages without formal cognitive testing, and cognitive screening tests are performed infrequently in general clinical practice in the United States.6 The reasons for inadequate recognition likely include the lack of appropriate training, reinforced by a sense of therapeutic nihilism about treatment. Such barriers may explain why there is less than full disclosure with patients about their diagnosis and prognosis, and these may have been present in Marzanski's study. Possible barriers to appropriate discussions include a reasonable estimation that impaired comprehension will limit the meaningfulness of discussions. This is further justification for an earlier diagnosis because the best time to discuss life-altering and life-threatening disease is when patients can remember the conversation, understand its significance, and participate in health care decisions. Marzanski identifies a substantial limitation in his study design: the lack of verification from caregivers and physicians that these patients were never told about their diagnosis. Despite that concern, there is other evidence that the picture is not always bleak in terms of patients being given diagnostic information. One study conducted in the United Kingdom explored the issue of disclosure through surveys of 20 memory disorders clinics.7 Six of 16 who returned questionnaires had policies for sharing diagnoses, and staff members generally perceived themselves as speaking openly, yet sensitively, about diagnoses. Marzanski leaves us with more questions than answers. This is appropriate for exploratory research. This study should cause health care professionals to stop and think about how they handle the issue of truth-telling with dementia sufferers and their families. If such pause occurs, Marzanski has helped us take an important step toward improving care for those with dementia.