Perspectives in Biology and Medicine

SHOULD WE ALWAYS TELL CHILDREN THE TRUTH! JOHN D. LANTOS* Truth-telling, in medicine, is a peculiar cultural artifact. In America, we seem to endorse it more than most doctors in most other places, and today we endorse it more than ever before. It seems to play a central role in our conception of the proper relationship between patients and doctors. Any deviation from a standard of total honesty is seen as a doctor's way of preserving paternalistic power over patients. Truth-telling is thus necessary for patient empowerment, and patient empowerment is seen as a good thing. We want to demystify illness, and imagine that truth is the first step toward clarity. We are a truth-crazed society. We imagine that there are truths out there, that we can discover them, and that when we do, the knowledge will empower us and set us free. This way of approaching the issue of truthtelling is, of course, as American as apple pie, imagining, as it does, a fundamentally exploitative relationship between the empowered and the disempowered , and a set of rules which, we imagine, will level the playing field and will help the disempowered avoid abuse. Recently, a lot of bioethics cases have been coming across the Internet. When they do, it is interesting to see how people from all over the world have recognizably different approaches. Carl Elliot is a bioethicist from South Carolina, now living in Montreal, who has spent a lot of time in other countries—Germany, Scotland, New Zealand, South Africa. He has written about how hard it is to explain to foreigners the peculiar twists and turns of American bioethics, the focus on individualism, autonomy, privacy, and the suspicion of authority. He concludes that ethics is so embedded in culture that, to understand American bioethics, you have to understand baseball [I]. A recent case on one of the Internet lists raised a conflict about truthtelling and about the peculiarities of our modern American approach to such dilemmas. Here was the case: A 9-year-old girl has AIDS with chronic lung disease and AIDS nephropathy. She *Department of Pediatrics, The University of Chicago, La Rabida Children's Hospital, East 65th Street at Lake Michigan, Chicago IL 60649.© 1996 by The University of Chicago. All rights reserved. 0031-5982/96/3904-0965$01.00 78 John D. Lantos ¦ Tell Children the Truth? does not require supplemental oxygen. Her current kidney function less than 20% of normal and continuing to decline. It is likely that she will require dialysis within the next year if she does not die from other complications of AIDS sooner. She is receiving total parenteral nutrition through a central line. The patient is aware that she has a chronic illness but not that she has AIDS. But she wonders about it. When she asked her mother whether she had AIDS, her mother responded "No." The mother also has AIDS (the patient's AIDS was perinatally transmitted) . She is quite ill and likely to die before the patient. In a recent discussion, she stated to the doctors that she would like to tell her daughter that she [the patient] has AIDS. However, the patient's grandmother is adamant that the 9-year-old not be told. So far this request is being respected. The grandmother feels that "it is enough for the girl to know that she has kidney disease, why should you tell her that she is going to die [from AIDS]." The attending physician strongly believes that the patient should be told of her diagnosis. As stated above, the patient is already suspicious. The attending feels that continued concealment of information will be particularly harmful if/when the patient eventually finds out her diagnosis. The setting is a teaching hospital, with many consultants, students, residents, and support services involved. Someone will likely reveal the information to the patient, if only inadvertently, if she is an inpatient for a long enough time. The question, put to an international cyberethics community, was should the doctors continue to honor the grandmother's wishes that the nine-yearold not be told that she has AIDS? Well, what is this case about? On one level, it...