Walter Davis, M.D.Center for Biomedical Ethics

Truth Telling:

From Physician Ethics to Bioethics

A Case of Disclosure

Miss A has chondrosarcoma. “Tell me,” she pleads with Dr. B, “do I really have a cancer?”

• “He (the surgeon) may exaggerate…if the patient has a bold and hardy spirit, or he may temper and soften the warnings, or keep silent altogether if the patient is faint hearted or good natured.”

• “If the patient is defiant, seldom will the result be successful.”

Henri de Mondeville,14th C Physician

Benjamin Rush, 18th C American physician

• “The people rule here in medicine as well as government.”

• “…truth is simple upon all subjects….strip our profession of everything that looks like mystery and imposture, and clothe medical knowledge in a dress so simple and intelligible, that it may become…obvious to the meanest capacities.”

Thouvenal, 19thC French physician

• “It is important for the happiness of all that man be placed under the sacred power of the physician. That he be brought up, nourished, clothed after his counsel and that the systems according to which he should be governed, educated, punished, etc., be designed by him....Who is better qualified to play this role than the physician who has made a profound study of his physical and moral nature?”

Physician’s note in 1855 record of New York Hospital case of 6 year old boy

after a train had crushed his arm

• “Patients friends strongly refuse to give their consent, and would rather the child should die than loose (sic) its arm.”

Legal Theories, Ethical Standard-by 1900

Legal Standards–Battery–Negligence

Ethical Standard–Beneficence

“Therapeutic privilege” provided grounds for physician discretion

Scholendorff v. Society of New York Hospital, 1914

• Every person of sound mind has the right to determine what shall be done with his own body….the surgeon who fails to honor this right “commits an assault.”

– Justice Benjamin Cardozo

Minimal Legal Requirements

• Disclosure

• Authorization

“What to Tell Cancer Patients” 1956

• Case 10: Concealing the Nature of His (sic) Disease from a Patient

• Miss A has chondrosarcoma. “Tell me,” she pleads with Dr. B, “do I really have a cancer?” Dr. B., knowing that Miss A has ample time to prepare for death and wishing to spare her needless mental suffering, answers, “Your pains are due arthritis.”

• Solution. If Miss A actually has arthritis, or if Dr. B is convinced that everyone at her age does have at least a mild case of arthritis, his answer is not morally wrong.

Explanation: Dr. B does not affirm that Miss A’s pains are due solely to arthritis. If she does have arthritis, even in a mild form, Dr. B is justified in thinking that her pain is due in part to the arthritis, and hence is answer is not a lie. If Miss A really wanted the entire truth, she would ask, “Are all my pains due to arthritis?” In such cases patients often do not wish to pursue the matter, preferring to accept an answer which leaves them with some ray of hope, even though in their hearts they know what the facts are.

»Healy, 1956

“What to Tell Cancer Patients,” 1961

• “…whether or not physicians tell their patients they have cancer….[there is] a strong and general tendency to withold this information. Almost 90 percent of the group is within this half of the scale. Indeed, a majority tell only very rarely, if ever.

• “Euphemisms are the general rule.”

• “The modal policy is to tell as little as possible in the most general terms consistent with maintaining cooperation in treatment.”

• “The vast majority of these doctors feel that almost all patients really do not want to know regardless of what people say.”

• “But the total number of those [physicans] who said they wished to be told (73 out of 122) is far greater than those who tend to tell their patients.”

» Oken, JAMA 175, 1961

“Changes in Physicians’ Attitudes Toward Telling the

Cancer Patient,” 1979

• 98% of those surveyed reported a policy of disclosure to cancer patients.

» Novack et al., JAMA 241, 1979

• Reasons for these changes– more treatment options for cancer– improved survival rates for some forms of

cancer– fear of malpractice suits– involvement of team members in hospitals– altered societal attitudes about cancer– greater attention to patients’ rights– physicians’ increased recognition of

communication as an effective means of enhancing patient understanding and compliance

» Beauchamp and Childress, 2001

Modern Elements of Informed Consent

• Threshold Elements (Preconditions)– Competence (to understand and decide)– Voluntariness (in deciding)

• Information Elements

– Disclosure (of material information)– Recommendation (of a plan)– Understanding (of disclosure and recommendation)

• Consent Elements– Decision (in favor of a plan)– Authorization (of the chosen plan)

» Beauchamp and Childress, 2001

What counts as disclosure?

• Professional practice

• Reasonable person

• Particular patient

Possible exceptions to disclosure requirement

• “Therapeutic exception/privilege”

• Emergency

• Placebo

• Waiver

Clinical research scandals and lack of disclosure

• (A modest selection in order of discovery)– Brooklyn Jewish Chronic Disease Hospital,

1963– Willowbrook State Hospital, 1966– U.S. Public Health (Tuskegee) Syphilis Study,

1932-72– Fernald School, early 1950s– Plutonium injections, 1944-45

Truth-telling and Third Party Payers

• 70% of physicians in a study indicated that they would use the words “rule out cancer” rather “screening mammography” so that a patient’s insurance would cover costs

• “Rule out cancer” was to be used only if there was evidence of a breast mass or objective clinical evidence of breast cancer.

• 85% of respondents did not think that “rule out cancer” was deceiving the company.

» Novak et al., JAMA 261, 1989

• In 1999, nearly 50% of physicians admitted to exaggerating severity of their patients medical condition for insurance coverage.

• Late 1990s, 39% of physicians reported exaggerating severity, altered diagnoses, and/or reported symptoms patients did not have to help them obtain coverage.

Truth-telling in Clinical Research

• Single and double-blinded designs

• Placebo controls

• “Sham” interventions

• Adverse events

• Financial conflicts of interest