Just another test?
Subject: Informed consent (Medical law) (Analysis)
Physicians (Practice)
Medicine (Practice)
Medicine (Analysis)
Pub Date: 01/01/2010
Publication: Name: The Hastings Center Report Publisher: Hastings Center Audience: Academic; Professional Format: Magazine/Journal Subject: Biological sciences; Health Copyright: COPYRIGHT 2010 Hastings Center ISSN: 0093-0334
Issue: Date: Jan-Feb, 2010 Source Volume: 40 Source Issue: 1
Topic: Event Code: 200 Management dynamics
Product: Product Code: 8011000 Physicians & Surgeons NAICS Code: 621111 Offices of Physicians (except Mental Health Specialists)
Geographic: Geographic Scope: United States Geographic Code: 1USA United States
Accession Number: 220560579
Full Text: Samantha is a pale and withdrawn fourteen-year-old brought to the emergency room by her mother. She is fatigued, nauseated, and has been vomiting. Her mother tells the physician on call in the ER that she's very worried; Samantha lately refuses to eat, has lost weight, has stopped going to soccer practice, and has missed several days of school. The doctor examines Samantha and then asks if she may speak to her alone. Samantha and her mother agree and her mother leaves the room, but Samantha is clearly uncomfortable.

In response to the doctor's questions, Samantha says that she first menstruated at age eleven, that her periods have been regular, and that she last had one four weeks ago. When the doctor asks whether she is sexually active, she admits that she had her first sexual contact right before her last period. She says it was consensual and that her partner used a condom. She then says that she knows she's not pregnant--she took a home pregnancy test the day before, and the results were negative. The doctor asks if she can test Samantha again, and Samantha starts to cry. "I already told you, the test said I'm not," she says. "I'm not pregnant!"

The doctor looks at her ER sheet, which includes a list of tests commonly ordered as a result of the physical exam--complete blood count and culture, urine analysis and culture, x-ray, MRI, CT scan. She strongly suspects Samantha is pregnant and could easily order the test without Samantha's knowledge as part of her workup. Should she?

commentary

By Herbert J. Bonifacio

The ER sheet at our hospital is efficient: divided into thirds, with each third devoted to triage, history, and physical exam. The back is similar to the front. The top third lists standard orders. The doctor can check a box for a complete blood count, urine analysis and culture, or chest x-ray. Below this is a blank space where one can specify another type of test if so desired. Once filled out, the form is left on the nurse's clipboard. Medical staff can later view the results from any computer in the hospital. The simplicity of checking off boxes or filling in the blank perhaps enables the belief many doctors hold that whatever test is ordered is routine and requires little, if any, explanation. But is the pregnancy test just another test?

Some physicians view an adolescent as too young to make decisions for her own good or to understand their consequences. But physicians tend to underestimate the ability of adolescents to make an informed decision. In a study comparing adolescents aged fourteen and twenty-one years, there was not much difference between their understanding of treatment for diabetes, epilepsy, enuresis, and depression. From a developmental perspective at least, research has thus demonstrated that adolescents are generally competent to make a decision by the age of fourteen years.

Another reason to require informed consent in this case stems from the ongoing precedent within bioethics and law that protects the rights and decision-making of adolescents concerning their sexual and reproductive health. In North America, the constitutional right to privacy protects a minor's right to obtain contraception without parental consent. There is no state that explicitly prohibits minors from receiving contraception.

Parents are ethically and legally obligated to care for their minor children, and this responsibility includes health care and medical treatment. Such a duty, however, is not permanent. The maturity and experience of the child invariably increase as she gets older, as does her ability to make decisions. This capacity brings the eventual complete loss of her parents' decision-making duties. The change, however, does not take place overnight. The legal system has taken into account the gradual process through which it occurs, but because every adolescent is different, the transition will always remain imperfect.

Are there any precedents to draw upon in asking an adolescent's informed consent for a pregnancy test? An exploration of HIV testing can help elucidate this matter further. In the early 1980s, patients were often tested for HIV without their knowledge. By the late 1980s, though, medical practitioners would discuss their very limited knowledge of HIV/AIDS with the patient before ordering a test. The HIV test was not just another test.

Of course, being pregnant and having HIV are not the same, but common themes emerge. First, the psychosocial risks of a positive HIV test can at times be similar to a positive pregnancy test in teenagers. Pregnant adolescents can be ostracized by their families, discriminated against by friends and teachers, and fired from their jobs. The pregnant teenager's personal health and safety may also be compromised if the teenager chooses--or is forced--to hide her pregnancy. Second, both involve vulnerable populations. HIV primarily arose among two already marginalized and discriminated groups--homosexuals and intravenous drug users. Adolescents can also be seen as a vulnerable population. There is a stigma toward teenagers in North America--they are often perceived as reckless and irresponsible-- that is even more pronounced among teenagers who are pregnant. And most adolescents are not economically self-sufficient, so their choices may be coerced by those who pay their bills. This vulnerability is even more reason to get Samantha's informed consent before ordering the pregnancy test, since by this reasoning, she is the one best placed to deal with a positive test's ramifications.

commentary

By Annie Janvier

Ideally, the doctor in this case would get Samantha's informed consent. This would allow Samantha to feel like she is part of the decision-making process and that the doctor respects her bodily integrity. Not having full capacity as an adolescent does not mean that this requirement is negated in Samantha's case. Presumably, she will have to make decisions regarding her health care and well-being in the near future. By asking her for informed consent, her doctor would be giving her the chance to develop--and to appreciate the importance of--her decision-making skills. Her doctor would also avoid having to tell Samantha the test was done without her knowledge if it comes back positive. The consequences of losing trust in one's health care provider can leave an indelible mark on one's perception of the medical community as a whole. This is all true in theory, but what does it mean in practice?

Informed consent requires her doctor to inform Samantha of all her alternatives and the pros and cons of each so she can choose her best option. But how much information should the doctor give? Should she discuss all the ramifications of a possible pregnancy: termination, becoming a parent, or placing the child up for adoption? The prerequisites of informed consent imply that she should. But is that extent of information needed in all cases?

In this case, Samantha clearly does not want a pregnancy test, and she may have reason to refuse it. She may already know about her pregnancy without wanting to share this information with her mother. She may be an incest victim or a victim of rape. She may suffer abuse and fear for her own safety, refusing the test because she knows she may be pregnant. In such situations, performing a pregnancy test without consent may be the only way that a health care professional would know about such abuse, and the only way to help her.

She may also be in denial, or sexually naive. In these situations, an adolescent may feel insulted, humiliated, or embarrassed if asked to do a urine pregnancy test, and these feelings may intensify if the alternatives of abortion and adoption are discussed. Although meant to empower the female adolescent in making decisions about her health, such a discussion could thus have the opposite effect. It might cause her to avoid seeking health care or to lie to physicians in the future. And the discussion might not always be possible. In this case, Samantha was seen without her mother in the room. This ideal situation may not present itself: some parents refuse to leave, and some adolescents ask their parents to stay.

How, then, can we inform adolescents of pregnancy tests without hurting some of them? It is impossible to know with certainty if an adolescent is sexually active of her own accord, if she is a victim of rape or incest, or if she is sexually naive. Our judgments on which type of adolescent we are facing are apt to be faulty. But an opt-out approach might provide a happy medium. The pregnancy test would then appear to be both standard and automatic. For example, we could tell Samantha: "We see a lot of abdominal pain and vomiting in the emergency room. Many things can cause these symptoms, and we do a number of tests when patients complain of them. These include blood tests of your liver and kidneys to check if they are working well, a sugar level to be sure you are not diabetic, and a urine test to be sure you do not have an infection. This urine test, for abdominal pain, always includes a pregnancy test. Are these tests okay with you?" If the tests were presented in such a way, both the adolescent who wishes to be informed and the adolescent who does not would benefit. Her privacy would be preserved, along with her integrity to make her own autonomous decisions.
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