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Scenario 2: When Patient Choice Outweighs Proven Advantages of Testing

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Making Informed Decisions for Better Health

Overview | Health Outcomes | EBM | Patient-centered Care | Informed Decisions | Examples | Talking to Your Doctor | Resources | Sources | Return to main article (use browser Back button)

Various factors can influence the decisions made and actions taken by patients and their healthcare practitioners regarding testing. No decision can be viewed as entirely clear-cut and the elements influencing decision-making can be seen as existing along a continuum among a spectrum of possibilities. Balancing these influences according to a given situation can be central to improving healthcare.

The following is the second set of examples in a series of three. These are testing situations along the spectrum of care in which patient-centered considerations may be the priority if the patient chooses, regardless of the evidence:

Example one EBM supports testing, but only the patient can determine its usefulness
Test First or second trimester screening for fetal abnormalities
Outcome goal Better management of pregnancies
Evidence Early detection of abnormalities can lead to managed pregnancy, better newborn care
Standard care Offer screening to all pregnant women
Patient considerations Some women want testing in order to know about abnormalities; others know results will not make a difference in their care so choose to forego testing
Healthcare improvement Patient is in control of healthcare decision

For pregnant women in the U.S., the standard of care is for practitioners to offer screening for fetal chromosomal abnormalities, regardless of personal or medical history. This may be done as part of first trimester and/or second trimester screening tests. Each patient who is confronted with the choice of testing or not will have different needs, values, and preferences and these will override any evidence that supports testing. While one woman will want the test in order to manage her pregnancy, another woman with different values may choose to forgo testing because the results of the test will make no difference in the management of her pregnancy. In this case, the values and needs of the patient override the evidence. Yet, in the patient's viewpoint, her health care needs have been met and her care is appropriate for her.

Example two Testing and actions based on results are patient's choices
Test BRCA1 and BRCA2 testing
Outcome goal Identify people at increased risk for breast and ovarian cancer
Evidence People with BRCA mutations have increased risk of hereditary breast cancer and ovarian cancer
Standard care Offer test to people who have a strong family history of breast or ovarian cancer or have a close family member with a BRCA mutation
Patient considerations Patient may opt to have testing or not; genetic counselor can provide guidance and help patient decide
Healthcare improvement Patients who are well-informed about their risks can decide whether or not to have testing done, depending on their risk tolerance and preferences regarding interventions they would consider if they have a mutation

Testing for mutations in the BRCA gene may be offered to people who have a family history of breast or ovarian cancer, or close family member with a BRCA mutation. The results of testing can inform women (and some men) about whether they have a significant greater risk of having breast or ovarian cancer over the general population. It does not, however, absolutely determine whether or not they will develop one of these cancers. This information from BRCA testing, however, can give them the power to then make decisions about their care, depending on their preferences and risk tolerances. Options for risk reduction range from greater surveillance (more frequent screenings) to invasive procedures such as removal of breasts (mastectomy) or ovaries. The choice of these options, and indeed about testing itself, is a personal one. Some people who are offered testing may not want it because they know the result would not affect their decision-making or cause them to choose a different course of action. Conversely, other individuals might choose testing to gain information about their genetic predisposition so they can decide whether or not to take action. Opting for predictive BRCA testing for breast cancer is an example of an important health decision and a good illustration of when a well-informed patient is an empowered one. Moreover, a genetic counselor is often a good resource for understanding genetic test results, but perhaps more importantly, can provide guidance when making the decision about whether or not to be tested.

Example three Patients may decide to opt out of testing based on their personal risk tolerance
Test Hepatitis C virus (HCV) screening for “baby boomers," people born from 1945 through 1965
Outcome goal Decrease number of deaths due to complications of chronic hepatitis C
Evidence People born from 1945 through 1965 have the highest incidence of chronic hepatitis C; screening everyone in this age group will identify more of those infected and allow for treatment with new, effective drugs, decreasing the number of complications and deaths due to HCV
Standard care Offer testing to all people born from 1945 through 1965 regardless of risk factors
Patient considerations Some people may consider themselves at very low risk and may see no benefit in undergoing testing
Healthcare improvement Though evidence shows the general population of baby boomers will benefit from screening, an individual in this age group may choose to opt out of what they may perceive as unnecessary testing because of very low risk

More Americans today die from hepatitis C than from HIV, according to the Centers for Disease Control and Prevention (CDC), and the rise in deaths disproportionately affects people born from 1945 through 1965, so-called "baby boomers." Over 3.2 million Americans are living with chronic HCV infection, which can cause long-term liver damage, and two-thirds were born from 1945 through 1965. Without treatment, it is estimated that as many as half with chronic infection will develop cirrhosis and/or liver cancer, both of which can be fatal. The virus is usually spread through sharing needles or other equipment when injecting drugs but may also be transmitted through other means, including snorting drugs or risky sexual behavior such as having multiple sex partners. Before 1992, when widespread screening of the blood supply began in the U.S., HCV was also commonly spread through blood transfusions and organ transplants. Many people who may have contracted the virus 40 years ago are unaware of their condition as it is a slow-progressing disease and can be relatively asymptomatic for decades until late, incurable complications develop. Detecting infections early through screening allows for treatment with newly-available drugs that are safe and effective. In 2012, the CDC undertook a study to determine whether routine age-based screening would raise the rate of cure. The study concluded that routine screening of all individuals born from 1945 through 1965, regardless of risk factors, would significantly reduce deaths. Nevertheless, some individuals in this age group may perceive their risk of having HCV to be so low that there is no benefit in undergoing screening. Though the evidence shows that this population in general would benefit from screening, each individual must make a decision on whether screening would be useful for him or her.

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