The woman phoned about her husband's ordeal with cancer.
The ordeal, she explained, was not just the cancer. It was lack of information -- not once but twice.
He was operated on, she said, and after the surgery -- but evidently before thorough study -- his surgeon told them, "We're 99 percent sure we got it all."
They had not. And the first she and her husband learned that was when another doctor, one they had never before seen, came into the patient's room and asked, "Would you take part in our chemotherapy treatment program?"
"The shock was tremendous," she said. "Our surgeon never showed up that day, and only after I found and confronted him did he tell us about the spread."
Her husband indeed had further treatment, both radiation and chemotherapy. "And while he was on chemotherapy, his cancer spread to his liver. And now we had not been warned in any way, nobody had ever explained that it could spread while he was on chemotherapy. We felt that while he was on chemotherapy, he was perfectly safe. I went to pieces. I can take anything if I'm prepared, but I was not prepared."
A misunderstanding, of course. Many patients understand that being on chemotherapy or any other treatment is no guarantee against simultaneous spread. But obviously some do not, and doctors evidently need to explain what may seem to them a perfectly obvious fact.
Many problems arise in cancer care. Problems come up in all care, but cancer therapy more often requires heroic treatments -- chemotherapy, radiation, surgery -- or combinations of treatment which require tough decisions by doctors and patients.
Which form of treatment is best for you? Should you enter a research study in which you may, by random selection, get one of two or more kinds of treatment to help learn which is best?
If your chance of recovery is small or almost nil, should you stay on a treatment that itself makes you sick? If your chance of recovery is small, should doctors encourage you to stay on a difficult treatment to complete a research study?
One of the world's major cancer centers -- the University of Texas System Cancer Center-M.D. Anderson Hospital in Houston -- has adopted a code of ethics to guide its staff and help patients in some of these and other matters.
"Our code gives the power of final decision to the patient and places the health care team in an advisory role," said the committee of doctors and others who drew up the code.
The code also views medicine "not as a business but as an enterprise engaged in helping patients in time of need."
The items in the following code may help tell any cancer patient -- or any patients -- what kind of care any patient is entitled to expect. It may be of help to all care-givers too.
I've taken the liberty of italicizing what seem to me some of the most important passages for staffs and patients, and slightly abridging a few parts:
"PREAMBLE. Our institution is a specialized center devoted to the care of patients with cancer and to the prevention and eradication of malignant disease. We strive to combine the activities of patient care, education and research to benefit not only patients currently receiving care but also future generations. In this diversity, there is often tension; therefore, we hold before us this code of basic moral principles against which to measure our service and to bond patients and staff together in the difficult task of contending with cancer.
"1. Reverence for the patients for whom we are privileged to care is our primary concern. Such reverence affirms the value and dignity of life.
"2. Acknowledging the value and dignity of life, we dedicate ourselves to provide our best care and to use our knowledge to attempt cure of the disease in each patient while pursuing understanding of the basic biologic nature and eradication of cancer.
"3. The presence of cancer may justify, but not demand, heroic measures. Curing disease, reducing suffering and sustaining an acceptable quality of life, as defined by the patient with the help of health care professionals, are central goals of this institution.
"4. All who serve in this instituion have specific tasks and roles, yet all are equal as potential friends to patients. Because of these vocational and personal bonds, each of us bears individual moral obligations to each patient.
"5. Knowledge-seeking research and knowledge-disseminating instruction . . . require at least three conditions: participants who are informed about risks and benefits; actions that do not undermine the patients' therapeutic needs; the transmission of truthful information that is based on sound evidence.
"6. The diagnosis of cancer is not just an identification of a disease, but also carries with it a potential burden for patients, who may feel stigmatized, and for those close to them, who share the impact. We must understand their perceptions and help them to come to terms with their altered lives. "7. Patients justly expect personal information to be confidential, yet their medical records are accessible to all health care providers. All information must be recorded responsibly. Access also confers a moral obligation. Access must be justified and not harmful to the patients' interest.
"8. Since our specialized roles result in varying levels of function and decision-making, we affirm the need to demonstrate mutual respect, and to acknowledge interdependence as co-workers responsible for the welfare of patients.
"9. The immediacy of patient care tends to obscure the relevance of basic biologic research. We affirm that research, responsibly conceived and scientifically sound, establishes an environment of learning, encourages exacting practice, fosters new knowledge and creates realistic prospects of eradicating cancer, thus promoting a favorable balance of risks and benefits.
"10. Cancer therapy and research are expensive endeavors demanding conscientious stewardship; however, financial considerations should never dictate the quality of care offered to each patient."
The code says to me: Research is important, but my chances for recovery are more important still. If entry into a research study is proposed, I am entitled to ask, "If you were not doing this research, what would you say is best for me?" And doctors are not permitted to place me in a randomized trial of more than one treatment unless they are sure that neither treatment has been established as better.
Whether I'm in a research study or not, the code also says, I can always say no. I can say, "I don't want this treatment." I do not need to suffer, though I must take the consequences, and I may want to weigh the odds of various consequences.
The code also says to me: Because research is important, I may be able to make a contribution even if I cannot be cured. But, again, I need not suffer for this sake alone if I do not want to do so.
It says: I need information if I want the best chance either for cure or the best possible fate. In many cases, doctors are required to give me a good deal of information. I may always ask -- and I may have to ask; codes are not always obeyed -- "What will this treatment do to me? What are the chances it will succeed?"
But, again, I may say, if I want -- as many patients do say -- "Don't bother me with any more details. Do what you think is best."