Telling patients they have Alzheimer's diseaseBMJ 1997; 314 doi: https://doi.org/10.1136/bmj.314.7077.321 (Published 01 February 1997) Cite this as: BMJ 1997;314:321
Important for planning their future, and no evidence of ill effects
- Barnett S Meyers, Professor of psychiatrya
Last year Conor et al reported that 83% of family members accompanying patients with Alzheimer's disease to a memory clinic did not want the patients informed of the diagnosis, despite 71% of relatives stating that they would want to be told themselves.1 This finding has stimulated controversy on how doctors should manage this diagnostic information.
In a letter in this week's BMJ, Barnes reports that 57% of first degree relatives in his smaller sample wished their relatives to be informed (p 375).2 Another letter, from Rice et al (p 376), reports a relation between severity of dementia and the self reported behaviour of consultants in the psychiatry of old age: over 80% of psychiatrists responding to a questionnaire stated that they rarely informed severely demented patients. In contrast, they reported nearly always sharing diagnostic information with patients with mild dementia.3 4 Another 40% reported sometimes telling their mildly affected patients. Not surprisingly, practice regarding informing “carers” differed in the opposite direction, with the relatives of more severely affected patients being more likely to be given the diagnosis.
Less is known about patient preferences, a fact that may reflect biases of both doctors and investigators. One survey of cognitively intact patients in primary care found a surprisingly high proportion of people stating that they would not want to know their diagnosis.5 Extrapolating from the findings of Conor et al, most relatives of patients with Alzheimer's disease, who would have varying degrees of awareness about the genetics of the disorder, would want to know their diagnosis. These reports raise important questions about the nature of doctors' responsibilities, to whom and under what circumstances.
In both Britain6 and the United States7 patients' right to know is a well established priority. The rationale for withholding information rests on preventing harm.8 Arguments that awareness of the diagnosis of Alzheimer's disease does damage by causing stigmatisation and depression9 are not based on empirical evidence. Thus, the greater than 20% prevalence of depression identified in early cases10 may result from a variety of causes, including awareness of memory loss symptoms and the pathophysiology of the disorder.11 Despite the association between confrontation of cognitive deficits and transient emotional reactions, there is no evidence of long term sequelae. Furthermore, the ability of patients with Alzheimer's disease to deny their illness through psychological defences12 or neuropsychological deficits13 mitigates against arguments that awareness of diagnosis leads to lasting psychological damage.
Arguments for informing patients often relate to maintaining the doctor-patient relationship and respecting patient autonomy.9 The greater than 90% accuracy of modern diagnostic criteria negates concern about unduly alarming people who have been misdiagnosed.14 The issue may rest more on how patients are told than the precise diagnostic information. Importantly, the results of surveys of the attitudes of family members and psychiatrists cited above occurred outside the context of the doctor-patient relationship. Communication through “patient led” discussions would diminish any adverse emotional effects of sharing painful diagnostic information, a responsibility all doctors share.
Telling a patient the diagnosis of Alzheimer's disease has important substantive benefits. Diagnostic information provides an opportunity for patients (at least, those with capacity to do so) to participate in important decisions about health care and financial planning before further cognitive loss occurs. Patients should know when and why to limit activities such as driving, which has been found to be significantly impaired in patients with mild Alzheimer's disease.15 Furthermore, the era of “no available treatment” is ending, with access to cholinesterase inhibitors (such as tacrine) that seem to turn back the clock to a point six to 12 months earlier in the disease process.16 The availability of new non-acridine agents (such as donepezil), which are both easier to administer and more tolerable,17 will offer additional treatment options.
Paradoxically, the fact that cholinesterase inhibitors are palliative rather than curative provides an additional argument for informing patients of their diagnosis. Access to a treatment that cures or stops the progression of Alzheimer's disease entirely will be available initially through randomised research protocols that require informed consent. Currently, most research settings rely on the consent of family members or next of kin. However, the interests of relations do not necessarily correspond with those of the patient. Furthermore, recent court rulings in New York State have rendered consent by family members legally unacceptable,18 a decision that may soon apply in other jurisdictions. Thus, patients may be required to arrange consent for potential future treatments before they lose the capacity to understand the nature, risks, and options related to experimental treatments.
Doctors, patients, and family members who share the responsibility for coping with Alzheimer's disease all require access to diagnostic information. Recent findings reported in this journal should be considered as initial research inquiries into an important topic. The need for additional information is crucial; what we do not know, including the attitudes of patients and the actual emotional consequences of having diagnostic information, outweighs the existing evidence. Furthermore, the risks and benefits of having diagnostic information will vary according to the severity of dementia. Additional research must aim to provide doctors with a knowledge base for their interactions with this truly victimised patient population.