Your Right to Weigh Risks and Benefits
YOUR body is yours. Your life is yours. These statements may seem obvious, but they point to a basic right of yours bearing on medical treatment. That is your right to decide what will be done to you. Many exercise this right by getting a second opinion and then deciding; others refuse some particular therapy. A 1983 study by Dr. Loren H. Roth revealed that ‘20 percent of hospital patients refuse treatment.’
But if you were ill or injured, how could you decide? Not being a physician, how could you know the best therapy? Usually we turn to the experts, to doctors who have specialized education, experience and a commitment to help people. Doctor and patient should consider the “risk/benefit ratio.” What is that?
Let us say that you have a bad knee. A physician recommends surgery. Yet what are the risks of the anesthesia and surgery or the risks to your leg function later? On the other hand, what are the potential benefits and the chances that those benefits will be achieved in your case? Once the risk/benefit picture has been explained, you have the right to decide: to give your informed consent or to refuse the treatment.
Weighing Risks and Benefits
Consider the risk/benefit ratio in a real situation, that of Giuseppe and Consiglia Oneda, mentioned earlier.
Their daughter Isabella was very ill, and doctors recommended (even demanded) that she be given periodic blood transfusions. The loving parents objected primarily because of their knowledge of Bible law. Still, how might the matter of risk/benefit ratio have affected things?
Nowadays most people assume that the transfusing of blood into a patient is a safe, effective therapy. We should not forget, though, that in the 17th century bloodletting was a common medical practice, for young and old alike, often with fatal consequences. What would have happened in those days if a parent had refused to allow his child to undergo bloodletting?
Bloodletting has had its day; now medical men espouse transfusing blood. Although doctors have accomplished a lot in recent years, they have to acknowledge that transfusions are risky. Dr. Joseph Bove (chairman of the American Association of Blood Banks’ committee on transfusion-transmitted diseases) recently said that contracting hepatitis from blood was first brought up in 1943. He added:
“Now, some 40 years later, the transmission of hepatitis by at least four different blood-borne viruses is a recognized risk of transfusion, and numerous other infectious agents are listed as being transmissible by blood and blood products.”—The New England Journal of Medicine, January 12, 1984.
If you are to weigh matters relating to your health and life, or that of your family, how much risk do such diseases pose? Even doctors cannot say, because death from these diseases can occur long after a transfusion is given. Take as an example just one type of hepatitis (B), for which screening is only partially successful. A news report (January 10, 1984) said:
“In 1982, some 200,000 Americans came down with hepatitis B, according to the Center for Disease Control (CDC) in Atlanta; 15,000 people were hospitalized due to the acute stage of the illness, and 112 died. Another 4,000 victims died from chronic complications attributed to the disease.”
How many others in Italy, Germany, Japan and elsewhere have died of hepatitis caused by transfusions? Yes, death from transfusions is a serious risk to be weighed.
Also in the risk/benefit ratio of transfusions, the risk is growing. “As our knowledge increases,” stated Professor Giorgio Veneroni (of Milan) in May 1982, “we are finding an ever greater number of risks connected with homologous blood transfusions.” One discovery causing alarm among doctors is AIDS (Acquired Immune Deficiency Syndrome), which has an extremely high death rate. Dr. Joseph Bove continued:
“For recipients, physicians must weigh the risk of transfusion against the expected benefit. This concept is not new but has become more pressing, since one can no longer assure an anxious patient that he or she will not get AIDS from transfusion.”
Doctors did not discuss that risk with the Onedas in 1978; it was not then recognized. But we know of it now. Should not such knowledge of the greater risks of transfusions make the Onedas’ decision less subject to criticism?
Parents Must Weigh Risks and Benefits
As an adult you have the right to weigh the risks and benefits of blood transfusions or any therapy. “Every competent adult is considered to be the master of his own body. He may treat it wisely or foolishly. He may even refuse life-saving treatment, and it’s nobody else’s business. Certainly not the state’s.” (Willard Gaylin, M.D., president of The Hastings Center) But who will weigh risks and benefits for a child?
Loving parents is the answer shown by general experience. For example, what if your child had problems with his tonsils and surgery was suggested. Would you not want to know about the advantages and risks of a tonsillectomy? Next, you might compare that with risk/benefit information about antibiotic therapy. Then you could reach an informed conclusion, as so many parents have.
Look at a more serious situation. Doctors bring you the sad news that your dear child has a virtually incurable form of cancer. They say that chemotherapy could be used, but the chemicals would make your child very, very ill, and the chances of arresting the disease at this stage would be almost nil. Would you not have the right to make the final decision?
Yes is the answer that you would draw from an article by Dr. Terrence F. Ackerman.* He admitted that many court orders have been obtained on the claim that the state must protect minors. Yet, in a number of cases the famed M.D. Anderson Hospital and Tumor Institute followed ‘the policy of not seeking court-ordered transfusions.’ Why? Partly because “each of these children had a potentially fatal disease, and we could not predict a successful outcome.” Was that not true also of Isabella?
Ackerman stressed the value of “respect for the authority of parents to raise their children in a manner that they consider appropriate.” He reasoned: “It is axiomatic in pediatric practice that the physician has a moral duty to support the parents and family. The diagnosis of a potentially fatal illness in their child places enormous stress upon parents. If parents must contend, in addition, with what they believe to be a transgression of God’s law, their ability to function might be further impaired. Moreover, the well-being of the family directly affects the well-being of the sick child.”
To avoid the many risks of transfusion, researchers have developed surgical techniques that limit the need for blood. In fact, the Witnesses’ stand on blood has encouraged this research. In late 1983, newspapers in the United States told of a report to a convention of the American Heart Association: No blood was used in heart surgery on 48 children, ages three months to eight years. The patient’s body temperature was lowered and the blood diluted with water containing minerals and nutrients. But no blood was given! Initially, this technique was used only on children of Jehovah’s Witnesses. When the surgeons noticed that Witness children survived these operations much better than those where conventional methods were used, they decided to extend this technique to all their patients.
Understandably, there are cases in which doctors consider a blood transfusion indispensable. It can, however, be objectively held that: (1) Even many doctors admit that cases where they are convinced that transfusions are truly vital are very rare; (2) there is a long-standing harmful habit of administering blood unnecessarily; (3) the grave risks of transfusions make it impossible to be dogmatic as to the risk/benefit ratio for them. Hence, some hospitals report that even many who are not Jehovah’s Witnesses are demanding that blood not be given them.
Hope for the Future
Happily, more and more attention is being focused on the rights and dignity of the individual. Enlightened countries, such as Italy, are putting forth effort to ensure the widest possible freedom, including the freedom to make informed medical decisions. A booklet produced by the American Medical Association explains: “The patient must be the final arbiter as to whether he will take his chances with the treatment or operation recommended by the doctor or risk living without it. Such is the natural right of the individual, which the law recognizes.”
This applies, too, in the case of minors. If you are a parent, you should take an active part in making medical decisions affecting your children. A council of judges in the United States wrote in “Guides to the Judge in Medical Orders Affecting Children”:
“If there is a choice of procedures—if, for example, the doctor recommends a procedure which has an 80 per cent chance of success but which the parents disapprove, and the parents have no objection to a procedure which has only a 40 per cent chance of success—the doctor must take the medically riskier but parentally unobjectionable course.”
Such advice can be most meaningful if you recognize your right—yes, your obligation—to obtain accurate medical information. Often it is wise to get a second opinion. Inquire as to the various ways in which a medical problem can be treated, and the potential risks and benefits of each therapy. Then, knowing the risk/benefit ratio, you can make the informed medical decision. The law establishes that you have that right. God and your conscience say that you have that obligation.
“The Limits of Beneficence: Jehovah’s Witnesses & Childhood Cancer,” Hastings Center Report, August 1980.
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A Frightened Pediatrician
Professor James Oleske recently admitted:
“What is frightening to me as a pediatrician and immunologist . . . is that we’re still in an alarming period when a large number of blood transfusions have been given to premature infants before we knew about AIDS . . . If in the late 70s and early 80s our blood supply was in fact contaminated with the AIDS agent, then a lot of preemies may have been exposed . . . The problem is there is no simple screening test for AIDS and without that diagnostic test there really is no way of telling who may be incubating it but feels healthy and can donate blood.”—Data Centrum, January 1984.
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Blood—Gift of Life?
“When Sam Kushnick died last October, his family wanted to bury him in a Jewish prayer shawl and in his favorite shoes. But undertakers didn’t want to touch his body; the death certificate said that he had died of AIDS—Acquired Immune Deficiency Syndrome.
“What is unusual about the Kushnick case isn’t that an AIDS victim was treated in death as a pariah. What is remarkable is that Sam was only three years old and belonged to none of the principal risk groups for the disease—promiscuous homosexuals, Haitians and heroin addicts. The little Los Angeles boy was one of a small but growing number of AIDS casualties who contracted the disease after receiving blood.” (The Wall Street Journal, March 12, 1984, page 1.) Sam was born prematurely. As doctors in the hospital drew some of his blood for testing, they replaced it with transfusions of donor blood. After he developed AIDS at age two, the donors were traced. One was a homosexual who still manifests no symptoms of the disease that killed little Sam.