Skip to main content
Journal of Medical Ethics logoLink to Journal of Medical Ethics
. 2000 Apr;26(2):108–113. doi: 10.1136/jme.26.2.108

Would you like to know what is wrong with you? On telling the truth to patients with dementia

M Marzanski 1
PMCID: PMC1733205  PMID: 10786321

Abstract

Objectives—To discover what dementia sufferers feel is wrong with them; what they have been told and by whom, and what they wish to know about their illness.

Background—Ethical guidelines regarding telling truth appear to be equivocal. Declarations of cognitively intact subjects, attitudes of family members and current psychiatric practice all vary, but no previous research has been published concerning what patients with dementia would in fact like to know about their diagnosis and prognosis.

Design—Questionnaire study of the patients' opinions.

Setting—Old Age Psychiatry Service in Worcester.

Participants—30 consecutive patients with dementia.

Results—The quality of information received has been poor and many patients have no opportunity to discuss their illness with anybody. Despite that almost half of the participants in this study had adequate insight and a majority declared that they would like to know more about their predicament.

Conclusions—Although many patients would like to know the truth, the rights of those who do not want to know should also be respected. Therefore the diagnosis of dementia should not be routinely disclosed but (just as in other disorders) health care professionals should seek to understand their patients' preferences and act appropriately according to their choice.

Key Words: Dementia • telling truth • patients' perspectives

Full Text

The Full Text of this article is available as a PDF (100.5 KB).

Selected References

These references are in PubMed. This may not be the complete list of references from this article.

  1. Bakhurst D. On lying and deceiving. J Med Ethics. 1992 Jun;18(2):63–66. doi: 10.1136/jme.18.2.63. [DOI] [PMC free article] [PubMed] [Google Scholar]
  2. Barnes R. C. Telling the diagnosis to patients with Alzheimer's disease. Relatives should act as proxy for patient. BMJ. 1997 Feb 1;314(7077):375–376. doi: 10.1136/bmj.314.7077.375b. [DOI] [PMC free article] [PubMed] [Google Scholar]
  3. Drickamer M. A., Lachs M. S. Should patients with Alzheimer's disease be told their diagnosis? N Engl J Med. 1992 Apr 2;326(14):947–951. doi: 10.1056/NEJM199204023261410. [DOI] [PubMed] [Google Scholar]
  4. Erde E. L., Nadal E. C., Scholl T. O. On truth telling and the diagnosis of Alzheimer's disease. J Fam Pract. 1988 Apr;26(4):401–406. [PubMed] [Google Scholar]
  5. FITTS W. T., Jr, RAVDIN I. S. What Philadelphia physicians tell patients with cancer. J Am Med Assoc. 1953 Nov 7;153(10):901–904. doi: 10.1001/jama.1953.02940270007002. [DOI] [PubMed] [Google Scholar]
  6. Folstein M. F., Folstein S. E., McHugh P. R. "Mini-mental state". A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975 Nov;12(3):189–198. doi: 10.1016/0022-3956(75)90026-6. [DOI] [PubMed] [Google Scholar]
  7. Green R. S., Gantt A. B. Telling patients and families the psychiatric diagnosis: a survey of psychiatrists. Hosp Community Psychiatry. 1987 Jun;38(6):666–668. doi: 10.1176/ps.38.6.666. [DOI] [PubMed] [Google Scholar]
  8. Hope T. Deception and lying. J Med Ethics. 1995 Apr;21(2):67–68. doi: 10.1136/jme.21.2.67. [DOI] [PMC free article] [PubMed] [Google Scholar]
  9. Jackson J. On the morality of deception--does method matter? A reply to David Bakhurst. J Med Ethics. 1993 Sep;19(3):183–187. doi: 10.1136/jme.19.3.183. [DOI] [PMC free article] [PubMed] [Google Scholar]
  10. Jackson J. Telling the truth. J Med Ethics. 1991 Mar;17(1):5–9. doi: 10.1136/jme.17.1.5. [DOI] [PMC free article] [PubMed] [Google Scholar]
  11. Maguire C. P., Kirby M., Coen R., Coakley D., Lawlor B. A., O'Neill D. Family members' attitudes toward telling the patient with Alzheimer's disease their diagnosis. BMJ. 1996 Aug 31;313(7056):529–530. doi: 10.1136/bmj.313.7056.529. [DOI] [PMC free article] [PubMed] [Google Scholar]
  12. McKeith I. G., Galasko D., Kosaka K., Perry E. K., Dickson D. W., Hansen L. A., Salmon D. P., Lowe J., Mirra S. S., Byrne E. J. Consensus guidelines for the clinical and pathologic diagnosis of dementia with Lewy bodies (DLB): report of the consortium on DLB international workshop. Neurology. 1996 Nov;47(5):1113–1124. doi: 10.1212/wnl.47.5.1113. [DOI] [PubMed] [Google Scholar]
  13. Meyers B. S. Telling patients they have Alzheimer's disease. BMJ. 1997 Feb 1;314(7077):321–322. doi: 10.1136/bmj.314.7077.321. [DOI] [PMC free article] [PubMed] [Google Scholar]
  14. Novack D. H., Plumer R., Smith R. L., Ochitill H., Morrow G. R., Bennett J. M. Changes in physicians' attitudes toward telling the cancer patient. JAMA. 1979 Mar 2;241(9):897–900. [PubMed] [Google Scholar]
  15. Rice K., Warner N., Tye T., Bayer A. Telling the diagnosis to patients with Alzheimer's disease. Geriatricians' and psychiatrists' practice differs. BMJ. 1997 Feb 1;314(7077):376–376. [PMC free article] [PubMed] [Google Scholar]
  16. Rice Karl, Warner Nick. Breaking the bad news: what do psychiatrists tell patients with dementia about their illness? Int J Geriatr Psychiatry. 1994 Jun;9(6):467–471. doi: 10.1002/gps.930090605. [DOI] [PubMed] [Google Scholar]
  17. Rohde K., Peskind E. R., Raskind M. A. Suicide in two patients with Alzheimer's disease. J Am Geriatr Soc. 1995 Feb;43(2):187–189. doi: 10.1111/j.1532-5415.1995.tb06388.x. [DOI] [PubMed] [Google Scholar]

Articles from Journal of Medical Ethics are provided here courtesy of BMJ Publishing Group

RESOURCES