Correspondence

Telling the Diagnosis of Alzheimer's Disease

N Engl J Med 1993; 328:736March 11, 1993

Article

To the Editor:

Drickamer and Lachs (April 2 issue)1 thoughtfully discuss the ethics of telling patients with Alzheimer's disease their diagnosis, but they do not tell of the agony of knowing, nor of its possible consequences.

As a doctor who has suffered personally from the horrible effects of Alzheimer's disease -- my wife died of this scourge last year -- I have something to say about whether it is right to tell a victim the truth about his or her disease and prognosis. I think we should look at it this way: Do any of us really want to know how we are going to die and approximately when? And if we had a crystal ball that would tell us this particularly discouraging news, would we want to look into it?

When it became clear that my wife had Alzheimer's disease, I decided to tell her that she had a condition of forgetfulness and that she was no more to blame than a person with heart disease or arthritis. I shielded her from television programs and articles that discussed her dismal future. While still rational, she went along with making a living will and giving me power of attorney because I did the same at the same time for her. There was therefore no reason to cause her to suffer the dreadful anticipation that she would otherwise have had to bear.

Had it been necessary for her to know her diagnosis in order to cooperate with treatment, as in the case of cancer, of course that would have been different. But we have no effective treatment for Alzheimer's disease.

What Drickamer and Lachs did not address was that, given the distressing facts, many patients, while still able, would simply shoot themselves. I would.

George B. Markle, IV, M.D.
1003 North Shore Dr., Carlsbad, NM 88220

1 References

1. 1

   Drickamer MA, Lachs MS. Should patients with Alzheimer's disease be told their diagnosis? N Engl J Med 1992;326:947-951
   Full Text | Web of Science | Medline

Author/Editor Response

The authors reply:

To the Editor: Patients may waive their right to informed consent, which includes their right to be informed of their diagnosis. This is, in effect, an expression of autonomy. In the best interests of a person's well-being, three conditions should be met before such a decision is made: there should be an explicit understanding between the person and his or her clinician that the person believes the decision to be in his or her own self-interest; the decision should be made without the undue influence of another person's needs (e.g., the need of a spouse or a care provider not to talk about the subject); and the decision should be made after other emotional factors that are overwhelming the person (e.g., fear, depression, or distracting symptoms) are identified and addressed so that the person has the opportunity to face the situation from a position of strength.1

There are undoubtedly people who do not wish to know all or any of the medical details about themselves. What is disturbing about Dr. Markle's letter is that it would appear he decided what information his wife would want or not want to know. We do not know whether this would have been his wife's decision. We also do not know about the interaction between Dr. Markle's wife and her clinician, but we believe it would be a breach of confidentiality if her husband was informed of the patient's diagnosis and not the patient, unless this was her explicit, uncoerced directive.

Fearful of what their reaction may be to the diagnosis of dementia, some may request not to be told. Others will want to know their diagnosis in order to retain their right to react to it, whatever form this reaction may take.

Margaret Drickamer, M.D.
West Haven Veterans Affairs Medical Center, West Haven, CT 06516

Mark Lachs, M.D.
Yale University School of Medicine, New Haven, CT 06520

1 References

1. 1

   The Hastings Center. Guidelines on the termination of life-sustaining treatment and the care of the dying: a report. Bloomington: Indiana University Press, 1987.
   

Citing Articles (1)

Citing Articles

1. 1

   Orit Karnieli-Miller, Perla Werner, Judith Aharon-Peretz, Shmuel Eidelman. (2007) Dilemmas in the (un)veiling of the diagnosis of Alzheimer's disease: Walking an ethical and professional tight rope. Patient Education and Counseling 67:3, 307-314
   CrossRef