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Week 6: Flow of Medical Information

Introductory essay

The medical profession has traditionally regarded information as a kind of medicine. Indeed, we know from various studies, including studies of the placebo effect (see Brody H. 2000. The Placebo Response. New York: Cliff Street Books), that the control of information, and its significance for the patient, can have a profound impact on the patientĖ not only psychologically or socially, but physiologically as well. Physicians have always appreciated this, and for this reason traditionally been cautious in their communication with patients. Oliver Wendell Holmes, a prominent 19th century American physician, remarked that "the patient has no more right to all the truth than he has to all the drugs in your saddlebags." If information is medicine, then physicians should control its dispensation, just as they control other powerful therapeutic agents.

This traditional paternalistic ideaĖ that physicians should control information provided to the patient according to their judgment of its impact on the patientís welfareĖ was bound sooner or later to collide with respect for individual self-determination, a core American value. But this took longer than might have been expected. The court case which introduced the phrase "informed consent" didnít occur until 1957. (For an excellent history of the professionís attitudes toward truth-telling and the emergence of informed consent law, see Jay Katzís The Silent World of Doctor and Patient.)

This history frames two key ethical values relevant to how information about the patient should be treated. One of those is concern with the patientís welfareĖ physicians should not do things which threaten the patientís well-being. This concern has been most often used as a reason not to reveal information which might cause the patient to be fearful, anxious, depressed, or hopeless. Itís always important to remember, though, that the positive effects of providing information to the patient often provide a therapeutic reason to give more of it rather than less. A pair of studies documented a complete revolution in physiciansí disclosure of a patientís cancer diagnosis between 1961 and 1977. In 1961, 90% preferred not to tell; in 1977, 97% preferred to tell the patient. (Novack_DH et al. 1979. Changes in physicians' attitudes toward telling the cancer patient. JAMA. 241: 897-900) Undoubtedly, some of this shift had to do with the rise of informed consent legal requirements. But there was also a tremendous increase in the treatment options available for cancer patients. Itís hard to persuade people to take treatments that make them violently ill unless youíve given them a real good reason. The therapeutic usefulness of disclosing the diagnosis changed between Ď61 and Ď77, not just the law.

The other value of course is the respect owed to the patientís right to self-determination. A patient who lacks information about the realities of her circumstances and prospects cannot effectively make decisions about how to conduct her life. The right to information is thus a corollary to the right to self-determination, a right so fundamental as to make the right to information seem almost absolute.

And so, many people think that since 1957 weíve seen the utter triumph of autonomy over paternalism, and that these days the only value of relevance when it comes to truth-telling and informed consent is the patientís right to self-determination. Katz explains that this is not true as a legal matter, as courts continue to leave room for physicians to conceal information for therapeutic reasons. We know that in practice physicians often fail to provide the information needed for meaningful patient participation in treatment decisions (e.g., see Braddock et al. 1999. Informed Decision Making in Outpatient Practice. JAMA 282: 2313-2320.). Most importantly, concern for her patientís welfare will always rightly be at the heart of the physicianís values. So long as this is the case, situations will continue to arise in which the doctor feels torn between her twin commitments, to both patient welfare and patient autonomy.

The medical student John Boyer is worried about adding to his patientís already considerable anxiety. And heís not sure this can be justified if the information that heís not a physician may be utterly tangential to the decisions that are more at the heart of the patientís need for self-determination.

Decisions about what to tell the patient with osteosarcomaĖ and when to tell itĖ require a deft interpretation of what the patientís undoubted right to autonomy demands. Itís easy to say that autonomy demands nothing short of complete disclosure of everything known to the physician. But this strategy collides with the psychology of human decision-making. Delivery of information in bulk, in a way that does not discriminate between the important and the insignificant, threatens to overwhelm rather than empower the patientís capacity to make choices which serve his values and goals.

As important as the values of patient welfare and autonomy are, they are not the whole story. First, we believe that we have a basic obligation (even if not an absolute one) to tell the truth rather than to lie. A general practice of truthfulness is necessary to any social system, and especially to a system of health care, where others rely on the sincerity and honesty of reports and judgments made about the patient by those caring for her. Even if lying may sometimes be justified, doing so requires that we give a good and persuasive reason.

Second, the patient is not the only one to whom we may owe the truth. Sometimes others have a right to information because it has been promised to them. Perhaps explicitly in a contract, as when a student receiving a Federal education loan promises to keep the US Department of Education informed of his enrollment status. Perhaps it is promised implicitly, as part of our social understanding of the obligations owed those who are not mere strangers. More honesty may be owed our spouses than our acquaintances.

The physician whose patient has severe angina is tempted to misreport the patientís symptoms because in this case he thinks that lying is vital to the patientís welfare. But this course of action is ethically complicated by the effects that lying might have on others in the system (which relies on physician honesty). It also requires some argument which weakens or eliminates any obligation of truthfulness owed to the insurance company, with whom both the physician and the patient have a contractual relationship.

The last case, involving Harry and his sister Louise, also poses a tension between a felt duty to the patient and duties owed to others. The promise of confidentiality is in general an essential condition of effective care. In addition, Harry wants to control information about himself which could threaten his welfare and interests. But are there limits to this exercise of autonomy when the welfare of others might be at stake? And does Harry have special obligations to his sister that limit his freedom to decide however he wants?

As these cases illustrate, decisions about providing information invoke many values, not just one, and require us to make informed and sensitive judgments which balance these competing ethical considerations.

Essay by Tom Tomlinson

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