Alzheimer's disease: to tell or not to tell.

A sentence stood out in the letter: "I will not allow you to examine me unless you promise not to, under any circumstance, disclose my diagnosis without my prior consent." The author of the letter wanted to find out whether our Clinic could help her. The letter was succinct: only four lines. After debating the issue and consulting our Ethics Committee, the emerging consensus was that as long as the patient does not present a threat to herself or to society, we should abide by her wish--under the principle of patient autonomy--and should not disclose the diagnosis without her consent.

Mrs. Stapelton looked older than her stated age of 52 years. She was standing as I walked into the examination room. I could feel she was tense. Before accepting the seat I offered her, she wanted to ascertain that I would not divulge her diagnosis without her prior consent. She appeared reassured by my statement and sat down. She looked quite nervous and was constantly fidgeting.

She could not determine when she first became aware of the memory impairment. Initially, she was not too concerned, thinking that it might be due to "stress." During the past few months, however, she had noticed that her memory was worsening and that this was beginning to interfere with her activities. She also was having difficulties making decisions. She was self-employed, running a successful business that she took over when her husband had died approximately 12 years ago. She has 3 children aged 17, 15, and 13 years. She is under tremendous pressure. She also noticed that she was becoming impatient, often irritable and short-tempered. A few days before seeking medical help, she had had an argument over a relatively trivial matter with one of her key people, whom she had known for at least 20 years, and abruptly terminated the contract. She subsequently felt guilty.

She scored 30 of a possible 30 on the Mini-Mental State Examination and 6 of a possible 30 on the Geriatric Depression Scale. She admitted to having some anomia, especially for words she does not often use. She volunteered that although she was good at crosswords, she had stopped doing them for the past few months because she had difficulties finding the correct words and was becoming too impatient. Neither the physical examination nor the psychiatric examination revealed any significant finding. The routine laboratory investigations and brain imaging studies were within normal limits. The neuropsychological examination, however, revealed deficits in line with a diagnosis of probable early Alzheimer's disease.

At the exit conference, Mrs. Stapelton reminded me of the promise not to divulge her diagnosis without her explicit authorization. I acquiesced, hesitated for a few seconds, and then told her the diagnosis we had reached: probable early Alzheimer's disease. I emphasized the word probable. She closed her eyes and remained silent for a few seconds. I could see her face become quite pale. She then opened her eyes and asked about the progression of the disease and whether there were any medications--even experimental--that could help. I tried to explain the lack of uniformity among patients, emphasized how the disease impairs judgment, and went over the available medications. But I knew she was not listening. I handed her some material to emphasize the various points I had made.

"What are my chances of being able to run my business in 5 years' time?" she asked in a subdued, husky voice. I tried to explain our state of ignorance. She interrupted me. "Tell me, doc, the way it is. I can take it." "I'm afraid, not too good, Mrs. Stapelton," I replied. "And ... 3 years?" she ventured. Her voice was wavering, her lips tremulous, and her eyes pleading. I could feel that she was grasping at straws. "With the medications we have and some luck, you should not be too cognitively disabled in 3 years' time, but it's difficult to determine at this stage," I answered. She seemed to perk up a little bit. "And what about 1 year?" I felt more comfortable. She thanked me and reminded me not to let anybody know the diagnosis.

Four months later, I read in the newspapers that her business had declared bankruptcy and that her two houses, boat, and two cars were being repossessed.

Ronald C. Hamdy, MD, FRCP, FACP 

Editor-in-Chief

Copyright [c] 2004 by The Southern Medical Association 0038-4348/04/9701-0001