As an oncologist, a physician who specializes in treating people suffering from cancer, I do not believe in telling patients how bleak their prospects really are. I agree that it is wrong to lie to people, even “for their own good,” but I also think it is wrong to be brutally frank. For example, when a worried patient asks, “What are my prospects?” I never lay out the statistical probabilities: “In your type of case and at this stage of the disease’s progression, about fifty percent die within one year and nearly all within three.” Instead I say something like: “Well, all of us will die sooner or later, but you still have some good time left, and if you cooperate fully with my treatment plan, we’ll stretch that out as much as possible.” Even in cases where treatment is quite successful, we know that very often a recurrence is probable. If patients don’t ask, I say nothing, though, of course, I schedule regular checkups. If they ask, I tell them: “There is no guarantee that anybody will stay healthy, but in cases like yours, patients sometimes live to a ripe old age with no more signs of cancer. And, with regular checkups, we’ll catch any problems before they develop very far.”
Some of my colleagues think my approach is dishonestly evasive and “paternalistic.” The trouble with telling the whole truth, however, is that it distresses all patients and their families, kills the incurable patient’s hope, and causes the successfully treated patient years of unnecessary anxiety—and there is evidence that anxiety worsens a cancer patient’s prognosis. As for so-called paternalism, I am not ashamed to take a fatherly attitude toward patients, whose illness often is too much for them. Even with my approach, moreover, conversations about patients’ prospects often are very time consuming and unpleasant, and, frankly, I have no desire to make my life more difficult.
So, my question is: Where should we draw the line?
This question concerns the duty of candor. Competent patients have the right to be in charge of their own health care, so as to integrate it with other legitimate concerns, which are comparatively more important as life wanes. Physicians should provide patients with the information they need to come to terms with reality and make important decisions. Therefore, communicating adequately with patients is an essential professional responsibility. In evading incurable patients’ questions about their prospects, the questioner wrongly precludes their choice about whether to accept treatment and prevents them from considering other things they perhaps should do. In reassuring successfully treated patients about the possibility of a recurrence, the questioner lies to them and deprives them of information they need.
I shall refer, as you do, to your partner in communication as the patient, but this use of the word must be clarified. Even if they are elderly or severely debilitated, competent adults are primarily responsible not only for their health care but for the whole of their lives, and physicians ordinarily should communicate directly with them. Sometimes, however, the person being treated is a minor or an adult unable to make decisions on his or her own behalf, and the physician must talk with one or both parents, a guardian, or some other person having the authority to make decisions for the individual. Very often, too, competent adults, especially but not only the elderly and severely debilitated, wish to discuss such important matters with someone else present—a spouse, one or more other family members, a friend, or some other trusted person. When the involvement of such persons is desired or freely accepted by the patient, the physician should welcome and even encourage it. However, as long as the patient is competent, a physician should not substitute communication with anyone else for talking with the patient, since the patient is entitled to direct communication with his or her physician and indirect communication makes misunderstandings and errors more likely. Moreover, patients should not evade their responsibility to make their own decisions; family members should not usurp the patient’s role in this matter; and a physician should not be a party to any such evasion or usurpation.
A physician always should bear in mind what a reasonable patient inquiring about his or her prospects really needs, namely, the information essential to come to terms with reality, to plan, and to make important decisions. Distressing details about a disease’s later stages that would not at present contribute to a patient’s practical reflection can be covered in very general terms or even omitted entirely, unless the patient asks specifically about them. Still, I agree with your colleagues who consider your approach evasive and paternalistic. While you rightly exclude lying to people, even “for their own good,” you are not supplying them with important information they need—information you have and should communicate—and you probably often seriously mislead them about their condition and prospects.
Of course, you should try to choose the best time and circumstances for talking with patients about their prospects. Avoid hurried conversations, situations where outsiders will overhear, or talking with patients when they are partially sedated or exhausted by prolonged or stressful examinations.
Then too, before saying anything, remind yourself of the limits of your knowledge and the virtual impossibility of foreseeing the course of any individual’s disease and suffering in precise detail and with absolute certainty. By humbly communicating to your patients a realistic awareness of your uncertainty about their prospects, you not only will avoid misleading them but will soften the harshness of bad news, whereas announcing it with dogmatic assurance is bound to cause greater distress.
You should clearly inform patients who have only a short time to live about their poor prospects, even if they do not ask, since they need that information to prepare in various ways for death—for example, by hoping more eagerly for heaven, receiving the sacraments, learning to join their suffering to Jesus’ passion, making peace with enemies, offering advice to loved ones, bidding them goodbye, paying debts, making a will, or planning a modest funeral. Deliberately withholding such needed information without some compelling reason is a very grave wrong—and I doubt that many physicians will encounter such a compelling reason even once in the whole of their professional practice.
When patients ask about their chances, an honest answer must include a statement of statistical probabilities. But because the mathematical neatness of a statistical statement is likely to convey specious clarity and precision, you should warn them that, since each case is unique, they should not draw overly firm conclusions from the statistics.
A patient asking about his or her prospects is cheated when you say: “Well, all of us will die sooner or later, but you still have some good time left, and if you cooperate fully with my treatment plan, we’ll stretch that out as much as possible.” Though this signals that the patient probably will die of cancer, it prevents a patient who will die soon from realizing the urgency of settling his or her affairs and preparing for death, and tends to preempt the choice he or she has the right to make about whether to accept and cooperate with your treatment plan. Plainly, whatever its benefits, cooperating with it also will involve considerable expense and other burdens, so that an incurable patient might prefer, not unreasonably, to forgo aggressive treatment and accept only palliative care, staying out of the hospital and meeting death, though somewhat sooner, in a residential hospice or at home amidst family and friends.
I also think you are being unfair to successfully treated patients who might suffer a recurrence in not telling them about that possibility when they do not ask and responding evasively when they do. You say, “We’ll catch any problems before they develop very far” but even with regular checkups, you will be unable to catch some problems before it is too late. Thus, while I trust you are sincere in saying you believe it wrong to lie to people, it seems to me that in this case you cross the line between withholding information and making statements you know to be false.
Besides, having been kept in ignorance by you, such patients are impeded in whatever planning and decision making they might wish to undertake. Furthermore, some of your patients undoubtedly move away or for other reasons do not return to you for scheduled checkups. Lacking a clear understanding of why these are important, some probably neglect them entirely or delay them too long, paying a high price for freedom from the anxiety you mean to spare them.
No doubt, when patients and their families are candidly informed of bad prospects, they sometimes do experience distress that evasions could have averted. I agree that such distress cannot be brushed aside as insignificant. However, patients and their families also sometimes are distressed by continuing vagueness and uncertainty, and are relieved when given clear and definite information, even about a fatal condition. Moreover, patients who find it hard to cope with their feelings, especially those who become depressed, can and should be offered suitable treatment and, if necessary, referred to a psychiatrist for appropriate help.211
Telling incurable patients the truth can involve a risk of killing their hope, and of course that is undesirable; but its undesirability does not warrant sustaining false hopes. Incurable patients need to be assured that you care about them, that you will do your best to ease their pain and alleviate other symptoms, and that you will never abandon them but will help and care for them to the end. Even more important, people whose prospects are very bad from the point of view of your technical capacities can have good prospects in other respects. You should encourage and help all patients to make the most of the time that remains to them, and remind Catholics and others who believe in an afterlife that their prospects for happiness are not limited to this life, and that they can hope for life beyond death.
Communicating honestly with patients about their prospects does take valuable time, and such conversations can be as difficult for physicians as for patients. But communicating with patients, not least about their prospects, is just as much part of sound medical practice as careful examination and skillful treatment. To omit appropriate communication is to withhold part of the service for which the physician is being paid, and that is a form of theft. You have a strict duty to invest the time and accept the stress of communicating to patients the truth to which they have a right.
The underlying point is that you, as a physician, are not in charge of your patients’ lives and their health. True, you are an authority, in the sense of having extensive education and experience, and it would be foolish and self-defeating for any patient to ignore your observations and advice. But patients also are in authority in their relationship with you, in the sense that they employ you and, within the bounds of morality, have every right to choose among the options your professional skills can offer them. Always, too, and not least when afflicted with a fatal illness, patients have important concerns other than life and health—their relationships with God and with other people, family and work responsibilities, and so on. They, not you, can and must decide how to integrate these other concerns, which you do not share with them, with their concern about survival and health, which you do share.
Someone might object that when patients’ lives are at stake, their other concerns pale in significance, so that physicians who meet all the standards of good medical practice can make any appropriate decision about treatment, without burdening patients with information they hardly will be able to absorb, understand, and use. In fact, however, reasonable people whose lives are waning realize that death is inevitable and resign themselves to it, with the result that the importance of some other concerns becomes comparatively greater, not less. As good servants, physicians and other health care providers should support and cooperate with such reasonable resignation rather than unilaterally make decisions about treatment. While physicians certainly should meet the standards of good medical practice, doing so includes giving patients the information about their prospects which they need if they are to judge for themselves the value of further treatment.
In sum. Should you tell patients the whole truth? No, insofar as you simply do not know the whole truth, and again no, insofar as some of the horrible truth you know will not be of any possible use to a patient. But while you need not and should not be brutally frank, you must not be evasive. Taking a fatherly attitude is entirely appropriate, provided you help patients come to terms with reality and respect their right to live their own lives, as would a good father of an adult son or daughter. Your role is to serve your patients’ true interest in caring for their health and dealing with the problems disease confronts them with, and fulfilling that role can require you not to spare their feelings. You must respect their dignity as free and responsible persons, entitled to the information they need both to choose how far they wish to go in accepting your professional help and to shape their own lives in other respects.212 In a word, do not reduce any person who uses your professional services to the status of a mere patient, but bear in mind that all your patients are also, and primarily, agents, bearing primary responsibility for their own health care and also for other matters, some of which, such as saving their souls, are more important than life itself.213
211. See The New York State Task Force on Life and the Law, When Death Is Sought: Assisted Suicide and Euthanasia in the Medical Context (New York, N.Y.: May 1994), 13–16, 175–77, 197–208.
212. On this view, though patient autonomy is only instrumentally good, it serves the intrinsic goods of authentic cooperation between physician and patient, and the upright patient’s sound choices regarding other aspects of his or her life; for elaboration of a similar view, see Edmund D. Pellegrino and David C. Thomasma, The Virtues in Medical Practice (New York: Oxford University Press, 1993), 95–97, 122–24, 129–33, and 193–94.
213. Naoko T. Miyaji, “The Power of Compassion: Truth-Telling among American Doctors in the Care of Dying Patients,” Social Science and Medicine, 36 (1993): 249–64, reports research showing that the questioner is typical; many American physicians tell patients the diagnosis and propose treatment without telling them about their prognosis unless they ask questions. Sheila Cassidy, Sharing the Darkness: The Spirituality of Caring (Maryknoll, N.Y: Orbis Books, 1991), 30–32, points out that British patients often are not told the truth about their prospects and illustrates by a telling example the injury caused by lying and evasion.