Correspondence
Informed Consent, Cancer, and Truth in Prognosis
N Engl J Med 1994; 331:810-812September 22, 1994
- Article
To the Editor:
Annas provides a thoughtful analysis of the Arato case (Jan. 20 issue),1 in which physicians were sued for not informing a patient with pancreatic cancer of his prognosis. Since most Japanese doctors still withhold the truth from terminally ill patients, I became interested in how American physicians can be honest with patients. My interviews with American physicians surprised me, because I learned that they are not entirely candid with dying patients2. At least half those I interviewed said they deliver bad news to patients with the worst part (the prognosis) often left out and with an emphasis on treatment possibilities to counterbalance the negative information.
These physicians claimed to respect the principles of informed consent, emphasizing patients' unwillingness to know (premised on their not asking questions), the uncertainty of the prognosis, the irrelevance of the prognosis to immediate medical action, and the need to preserve patients' hope. The defendants in the Arato case employed similar justifications.
This type of information control works well in contemporary America, where medicine has great power to define the truth and provide hope for the future3. Under the informed-consent doctrine, doctors cannot change the truth but can emphasize hope, expanding their professional territory beyond their actual ability. By defining the uncertainty of prognosis as the possibility of cure, physicians attempt to reconcile the complex and conflicting role requirements of competence, compassion, and honesty.
I agree with Annas that withholding the prognosis can harm the patient-doctor relationship and serve the interests of oncologists and pharmaceutical companies at the sacrifice of patients' time, money, and quality of life. Patients are entitled to know their prognosis so that they are not kept in the hands of the medical profession by a distant (nearly false) hope in the last stage of life.
However, I am not sure whether Annas's remark that “concealment of prognosis from patients near death makes them feel abandoned and makes physicians feel estranged” is always true. Some physicians regard the provision of treatment information to patients as a way of saying, “I am not abandoning you, I am here to help you,” and for some patients this message must be crucial. Part of the complexity of the American culture's denial of death is that it works not only to the benefit of doctors but also for patients.
3 ReferencesNaoko T. Miyaji, M.D., Ph.D.
Kinki University Medical School, Oono-higashi Osakasayama 589, Japan1
Annas GJ . Informed consent, cancer, and truth in prognosis. N Engl J Med 1994;330:223-225
Full Text | Web of Science | Medline2
Miyaji NT . The power of compassion: truth-telling among American doctors in the care of dying patients. Soc Sci Med 1993;36:249-264
CrossRef | Web of Science | Medline3
Delvecchio-Good MJ ,Good BJ ,Schaffer C ,Lind SE . American oncology and the discourse on hope. Cult Med Psychiatry 1990;14:59-79
CrossRef | Web of Science | Medline
To the Editor:
Do American patients believe that detailed information and statistics concerning life expectancy will affect their decisions? European patients do not.
We agree that most patients are concerned about their prognosis, although doctors provide information about prognosis less often than they provide information about treatment or even diagnosis1. But giving more percentages on survival or response rates will not increase the quality of the information. We have coined the term “bearable truth” to refer to the information to be offered: doctors must not lie but must not put too much pressure on their patients. Patients usually give us clues about how much they want to know and when they want to know it. Giving them that information is a process that begins in the first interview and ends at the moment of death2. Even when a decision must be made quickly, we do not think that all the available data should be given at once. Too much information may swamp the patient's ability to cope with the bad news and make the decision more difficult. In Europe, detailed information is usually given to family members, who can then help the patient make a decision if required.
2 ReferencesE. Espinosa, M.D.
P. Zamora, M.D.
M. Gonzalez Baron, M.D.
Hospital La Paz, 28046 Madrid, Spain1
Espinosa E ,Gonzalez Baron M ,Poveda J ,Ordonez A ,Zamora P . The information given to the terminal patient with cancer. Eur J Cancer 1993;29:1795-1796
CrossRef | Web of Science2
Buckman R. Communication in palliative care: a practical guide. In: Doyle D, Hanks GWC, MacDonald N. Oxford textbook of palliative medicine. Oxford, England: Oxford University Press, 1993:47-61.
To the Editor:
In my few short years in medicine I have worked very hard to disclose difficult truths to patients. Their reactions range from a calm explicit request not to be informed to a complete breakdown. I have seen a physician physically attacked after implying that a patient might have a life-threatening condition. This makes me wonder just how much Shana Alexander's experience of medicine, as related by Annas, is shared by other Americans. The Harris survey to which Annas refers was conducted when the respondents were secure in their living rooms, not facing death in a hospital bed. Although we all hope that we could deal calmly and rationally with statistical information at a critical time, the survey responses do not indicate how we would react on being told we faced a 5 percent chance of survival.
Timothy Ferris, M.D.
Massachusetts General Hospital, Boston, MA 02114To the Editor:
Annas's article highlights the difficulties faced daily by clinical oncologists treating dying patients. The issue, however, should not center on whether to tell a patient with incurable cancer his or her prognosis, but on how to do so.
To allow for informed consent and the participation of the patient in medical decision making, the truth regarding a poor prognosis must be discussed. In this discussion, several factors require consideration. One factor is trust. A patient's trust of his or her oncologist is essential. Providing the truth about a poor prognosis will strengthen, not weaken, this trust.
A second factor is timing. If treatment is to be started, often there is little time for delay. However, the statistical information need not be outlined in detail at the time of the initial consultation. A more gradual introduction to a poor prognosis will allow the establishment of a physician-patient relationship and prepare the way for discussion about therapy.
Hope and despair must also be considered. Perhaps the greatest challenge is to tell the truth to the patient with cancer without eliminating hope. Especially for patients with a poor prognosis, the goal is to improve the quality, and perhaps the quantity, of life. The goal is not to prevent death but, by preserving hope, to prevent death with despair. Hope can be fostered and nurtured by the oncologist, in spite of the grim statistical reality.
A final consideration is therapy. The futility of therapy in patients with incurable cancer is frequently discussed1. Does it add to medical costs without providing an apparent benefit? Should off-label administration of chemotherapy even be allowed? Yet if the truth is discussed, trust established, and hope maintained, informed consent will result in the best decisions about treatment. The best choice -- no therapy, enrollment in a clinical trial sponsored by the National Cancer Institute, or standard chemotherapy -- will not be the same for all patients. Only if “truth in prognosis” is discussed can the correct decision be made in each case.
1 ReferencesRandall F. Holcombe, M.D.
Louisiana State University Medical Center, Shreveport, LA 71130-39321
Moertel CG . Off-label drug use for cancer therapy and national health care priorities. JAMA 1991;266:3031-3032
CrossRef | Web of Science | Medline
To the Editor:
Discussions of population-based statistics with patients should be avoided. If patients are told that their prognosis is dismal, they will seek (often at great expense and peril) practitioners who will give them what they desperately need and deserve: hope for the future. Patients who are told that there is no good conventional treatment will seek unconventional and unscientific approaches, often spending their life savings on that important element that mainstream medicine has failed to provide.
Fredric V. Price, M.D.
Joseph L. Kelley, M.D.
Robert P. Edwards, M.D.
University of Pittsburgh School of Medicine, Pittsburgh, PA 15213-3180Author/Editor Response
Professor Annas replies:
To the Editor: The California Supreme Court, in affirming a jury verdict in favor of the physician defendants in Arato, refused to require that physicians disclose statistical life-expectancy data to critically ill patients as part of the informed-consent process1. Although in my article I agreed with this blunt conclusion in the context of the evidence presented at trial, I nonetheless argued that both existing law and good medical practice require that critically ill patients for whom treatment is recommended be told the “success rate of the proposed treatment in terms of both the prospects for long-term survival and the patient's quality of life.” The correspondents do not seem to disagree, but note the difficulties in disclosing a poor prognosis.
Dr. Miyaji's comments contrasting Japanese and American practices are valuable, and her own study of American physicians is an important one2. The view of the Spanish physicians is also interesting, although they do not address the question of who defines “bearable truth” and when it is appropriate to give information to the family instead of the patient. The physicians from Pittsburgh make a similar point, and Dr. Holcombe appropriately worries about “hope and despair.” But one must question whether it is the patient's or the physician's hope and despair that are at issue and whether these physicians would use population-based statistics in talking to the patient if the statistics suggested a high probability of a cure.
Dr. Ferris is, of course, correct to note (as others have) that responding to a hypothetical question in a survey is different from confronting death in a hospital bed3. But this is the only type of data we have on this issue, and the question is not how the patient might react to a 5 percent chance of survival but whether the patient has a right to be given the opportunity to react to that information in his or her own way. Dr. Holcombe puts it correctly: The issue is not whether to tell a patient with incurable cancer his or her prognosis, but how to do so.
3 ReferencesGeorge J. Annas, J.D., M.P.H.
Boston University School of Public Health, Boston, MA 02118-23941
Arato v. Avedon, 5 Cal. 4th 1172, 23 Cal. Rptr. 2d 131, 858 P.2d 598 (1993).
2
Miyaji NT . The power of compassion: truth-telling among American doctors in the care of dying patients. Soc Sci Med 1993;36:249-264
CrossRef | Web of Science | Medline3
Kassirer JP . Incorporating patients' preferences into medical decisions. N Engl J Med 1994;330:1895-1896
Full Text | Web of Science | Medline
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