CA: A Cancer Journal for Clinicians, Vol 36, 85-94, Copyright
© 1986 by American Cancer Society
How Much Should the Cancer Patient Know and Decide?
Bettina Schoene-Seifert M.D.1 and
James F. Childress Ph.D.2
1 Pediatric Resident at the Universitaets-Kinderklinik in Goettingen, West Germany.
2 Professor of Religious Studies and Professor of Medical Education at the University of Virginia.
The answer to the question, "How much should the cancer patient know and decide?" depends, first of all, on whether the patient is competent to understand information and to make decisions. Paternalistic actions to withhold information from the patient, to disclose information to others, or to make decisions for the patient are not warranted unless he or she also suffers from some defect, encumbrance, or limitation in deciding, willing, or acting. When there are no serious internal limits on a patient's capacity to know and decide, the patient's wishes and preferences should be respected, subject to certain external limits.
In general, competent patients have a stronger and broader right to refuse than to choose procedures, because there are more justifiable external limits on choice than on refusal. Apart from a few conceivable situations where the patient's refusal of treatment would substantially harm others, the family's wishes and preferences do not constitute a defensible external limit on the patient's right to know and to decide, as in the case of Mr. X. The principle of respect for persons generates the right to control access to information that emerges in the medical relationship as well as the right to know and to decide. Thus, it is not appropriate, as in the case of Mr. X, to disclose information to the family without the patient's consent or to respect the family's wishes regarding disclosure to the patient or treatment of the patient. It is an insult and indignity to the competent patient to involve the family without his or her consent.
Nevertheless, the question is ambiguous. How much should the cancer patient know and decide? In affirming the competent patient's right to know, to decide about treatment, and to control access to confidential information, we do not deny the patient's right to decline to know or to decide. It is important to distinguish an ideal of patient participation from a right of patient participation. Whatever the appropriate model of the "good" patient, we have construed the right to know and decide as an option right, not a mandatory right. In principle, the competent patient may waive his or her right to know and to decide. Such waivers are usually partial, rather than complete; they transfer part of the right to know or to decide, and they are revocable. Space does not permit us to elaborate the complicated conditions and limits of morally valid waivers. It is sufficient to emphasize that the principle of respect for persons implies a patient's right to know and to decide but not necessarily a duty to know and to decide.
