The Fears Of Disclosure

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One of the reasons why relatives are wary of the patient being told their diagnosis is the fear that the dementia sufferer will develop increased symptoms of anxiety and depression. Fifty-one percent of family members in the study by Maguire et al. felt that informing the patient of their diagnosis would depress or agitate the patient; only 4% said that the patient would cope better if told their diagnosis (Maguire et al., 1996). It is known that depression is increased by up to 23% in cognitively impaired geriatric outpatients, most commonly in the early stages (Reifler et al., 1982). Sevush reported a negative correlation between denial and depression, suggesting that depression in AD may be reactive in nature (Sevush and Leve, 1993).

There is no established evidence that informing patients of their diagnosis results in a significant increase in behavioral disturbance. Behavioral disturbance including agitation, depression, and anxiety are common in dementia, and it could as easily be argued that such symptoms might be reduced by informing the patient that they are suffering from an organic disease process and by involving them in the diagnosis and management of such symptoms. Ethical guidelines including those issued by the British General Medical Council state that one should not withhold information necessary for decision making unless one judges that disclosure of some relevant information would cause the patient serious harm. In this context, however, serious harm 'does not mean the patient would become upset, or decide to refuse treatment' (Seeking patients' consent: the ethical considerations, 1999).

Another reason quoted for withholding the diagnosis from cognitively impaired or demented patients is the fear that the patient might consider suicide if told about their illness. Four percent of patients attending a memory disorders clinic report suicide ideation or the 'wish to die' (Draper et al., 1998). Although the incidence of suicide in AD is rare, probably due to impaired decision making capability, cases of suicide in patients told their diagnosis have been described (Ferris et al., 1999; Rohde et al., 1995). One of four patients described by Rohde et al. committed suicide with physician assistance. All four patients were highly educated professionals with mild AD and had good insight as to the nature of their disease and their future severe disability. All were participating in trials of pharmacological treatment for AD and were aware of not responding to the treatment. The traumatic effects of caring for a patient with dementia are illustrated by the finding that 6% of family members in the study by Maguire et al. said that they would want to be told their diagnosis so that they could commit suicide. A further 2% stated that they would not want to be told their diagnosis in case it would lead them to commit suicide (Maguire et al., 1996). This sentiment was also expressed by some older adults in Holroyd's study (Holroyd et al., 1996).

The fact that suicide is raised as a consideration should individuals develop AD indicates that the disease is still perceived as devastating by many, particularly by relatives of sufferers. It does not mean, however, that information should be widely withheld from patients for fear that they might commit suicide. Individuals who are perceived as high suicide risk, irrespective of their underlying diagnosis, should be referred for specialist management and intervention as part of the process of imparting information.

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