Wendy R. Uhlmann, MS, CGC is the genetic counselor/clinic coordinator of the Medical Genetics Clinic at the University of Michigan. She is a Clinical Professor in the Departments of Internal Medicine and Human Genetics and an executive faculty member of the genetic counseling training program. Wendy Uhlmann is a Past President of the National Society of Genetic Counselors and previously served on the Board of Directors of the Genetic Alliance and as NSGC’s liaison to the National Advisory Council for Human Genome Research.
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Carl E. Schneider is the Chauncey Stillman Professor for Ethics, Morality, and the Practice of Law and is a Professor of Internal Medicine. He was educated at Harvard College and the University of Michigan Law School, where he was editor in chief of the Michigan Law Review. He served as law clerk to Judge Carl McGowan of the United States Court of Appeals for the District of Columbia Circuit and to Justice Potter Stewart of the United States Supreme Court. He became a member of the Law School faculty in 1981 and of the Medical School faculty in 1998.
Beth Tarini and Scott Roberts spoke at the Michigan State Medical Society’s 17th Annual Conference on Bioethics, "Putting the Me in Medicine: The Ethics of Personalized Medical Care" The conference examined moral and ethical issues which face physicians and other health care professionals daily.
For more information on the conference, you can visit its website here.
Raymond De Vries is co-author on a new publication in Academic Medicine, highlighting a successful model for collaboration which was developed in the early phases of a grant funded by the Bill & Melinda Gates Foundation nearly five years ago. The Collaborative Health Alliance for Reshaping Training, Education, and Research (CHARTER) project expanded the partnerships between the University of Michigan and several Ghanaian academic institutions to enhance health care provider education and build and/or increase research capacity. One of the early goals of the grant was to establish guiding principles for engagement through a Charter of Collaboration.
Tell us how you'd respond to the results of a blood test for fetal chromosomal problems. And find out how your response compares with that of participants in a national survey.
Consider the following
Imagine that you are four months pregnant. You and your partner have talked with your doctor about prenatal screening tests for your fetus. Based on your family history and personal medical history, your doctor has told you that you're at low risk (2 in 1000) of having a fetus with chromosomal problems. Chromosomal problems include such conditions as Down Syndrome. In talking further with your doctor, you decide to have a routine blood test for chromosomal problems in your fetus. This test will help to give you a better estimate of the chance that your fetus would have a chromosomal problem.
Your doctor tells you that the results of this blood test have come back "abnormal." She clarifies that the blood test showed that your risk of fetal chromosomal problems is about 5 in 1000, which is higher than the number she had told you before the test. She next asks if you are interested in amniocentesis, a medical procedure in which a small amount of amniotic fluid is extracted from the amniotic sac surrounding the fetus. This procedure can tell you for sure whether or not the fetus has chromosomal problems. However, amniocentesis has its own risks. Your doctor explains that the risk of miscarriage as a result of amniocentesis may be as high as 5 in 1000.
- Definitely No
- Probably No
- Probably Yes
- Definitely Yes
How do your answers compare?
Many women decide to go ahead and have amniocentesis. There are two things in this scenario that could influence women's decisions about amniocentesis. First, the doctor described the test as "abnormal", a label that may increase worry about the possibility that the fetus would have a chromosomal problem. Second, the risk estimate of 5 in 1000 was higher than the original estimate of 2 in 1000, which also may increase concern.
CBDSM researchers, led by Brian Zikmund-Fisher, wanted to know how much influence labels such as "abnormal", "normal", "positive", or "negative" might have on people's decisions in situations like the one described above. To test this, they gave one group of women a scenario just like the one you read. In this scenario, the test results were described as either "abnormal" or "positive" before the risk estimate of 5 in 1000 was given. A second group of women read the same scenario, but in their scenario, the doctor presented only the numeric risk estimate, without any label.
Women whose test results were introduced using a qualitative label ("positive/abnormal") were significantly more worried - and significantly more likely to choose to have amniocentesis - than women who were told only the numeric risk estimate, without any label. Note that all of the women in this survey were told that they had the same final risk: 5 in 1000. The decision of the women in each group should have been the same, but adding that one qualitative label significantly changed what the women in the study decided to do.
Interestingly, the CBDSM researchers also found a reverse effect when test results were introduced with the labels "negative" or "normal." These labels tended to make women less worried and less likely to have amniocentesis than women in a comparison group. Again, these results show that adding a one-sentence introduction with a qualitative label could significantly change people's decisions.
Read the article:
Does labeling prenatal screening test results as negative or positive affect a woman's responses?
Zikmund-Fisher BJ, Fagerlin A, Keeton K, Ubel PA. American Journal of Obstetrics and Gynecology 2007;197(5):528.e1-528.e6.
Are opinions on whether health care funding should be rationed dependent on an individual's perspective? Imagine that there are two regional health systems, each responsible for providing health care for one million people. The Director of each system has enough money to fund only one of two medical treatment programs. The health systems have the same limited budget and are the same in every way except for the treatment program that each Director decides to fund.
- Director who funded Program A (moderate shortness of breath)
- Director who funded Program B (severe shortness of breath)
- Both choices were equally good
- strongly agree
- strongly disagree
- strongly agree
- strongly disagree
How do your answers compare?
Before we analyze your responses to the scenario, we'd like to offer some background information about this area of research.
In an environment of scarce health care resources, policy makers and leaders of health care organizations often must make difficult choices about funding treatment programs. Researchers find out how people value different health states by asking questions like the ones you've answered. This area of research is called "person tradeoff elicitation."
The problem is that many people refuse to give a comparison value, saying that both choices are equal ("equivalence refusal") or saying that millions of people would have to be cured of one condition to be equal to the other treatment choice ("off-scale refusal"). Sometimes these responses are appropriate, but many times these responses seem inappropriate. Furthermore, the frequency of these decision refusals depends on how the questions are asked.
What were the specific goals of this research study?
In an article published by Laura J. Damschroder, Todd R. Roberts, Brian J. Zikmund-Fisher, and Peter A. Ubel (Medical Decision Making, May/June 2007), the authors explored whether people would be more willing to make health care tradeoffs if they were somewhat removed from the decision making role. As part of their study, the researchers asked people to comment on choices made by others, in this case, the Directors of two identical regional health systems. For this study, the researchers anticipated that asking participants to judge someone else's decision would make it easier for the participants to compare the benefit of curing two conditions that have a clear difference in severity. The researchers thought that adopting a perspective of judging someone else's decision might lessen the participants' feeling about making "tragic choices" between groups of patients and hence result in fewer refusals to choose. The researchers also hypothesized that respondents taking a non-decision-maker perspective would be more detached and would feel less outraged about the idea of having to ration medical treatments. As we will explain below, the researchers were surprised to learn that their hypotheses were wrong!
What did this research study find?
Some people surveyed in this study were asked to decide for themselves which of two treatment programs for shortness of breath should be funded. Others, like you, were asked which health system Director made the better decision about treatment programs for shortness of breath. Significantly, the respondents who had the evaluator perspective had nearly two times higher odds of giving an equivalence refusal�that is, saying that the decisions were equal. Why did this evaluator perspective fail to decrease these decision refusals? One possibility is that respondents did not feel as engaged in the decision. It's also possible that respondents felt that they were judging the Directors who made the decision rather than the decision itself. Or maybe respondents didn't want to second-guess the decisions of people they perceived as experts. The researchers predicted that people who had to make the decision about treatment themselves would be more outraged about the idea of rationing health care treatments. This prediction was also wrong! 69% of all respondents agreed that rationing is sometimes necessary, and yet 66% of all respondents also felt outraged about the idea of having to ration. The percentages were nearly the same for those deciding directly and those evaluating the decision of Directors of health care systems.
What conclusions did the researchers draw?
The researchers in this study concluded that perspective definitely matters in making hard choices about allocation of health care resources. They attempted to increase people's willingness to make tradeoffs by changing their perspective from decision maker to evaluator of someone else's decision. These attempts backfired. Contrary to the researchers' predictions, people were dramatically more likely to give equivalence refusals when they were assigned to a non-decision-maker perspective. The researchers also concluded that the degree of emotion aroused by health care rationing also plays a role in people's willingness to make tradeoffs.
So, how does your response to the Directors' decision in the shortness-of-breath scenario compare with the responses of the people surveyed for this study?
If you responded that the choices of both Directors were equal, you were not alone! Overall, with this scenario and related ones, 32% of respondents in the published study refused to make the tradeoff. These were the equivalence refusals. In comparison, 21% of respondents in the study who were asked to decide themselves between two patient groups gave an equivalence refusal.
If you made a choice of Directors in the shortness-of-breath scenario, how does your numerical answer compare with the responses of people surveyed for this study?
In the study, 15% of respondents gave a number of one million or more as the point at which the Directors' decisions about the two treatment programs would be equal. These were the off-scale refusals. In comparison, 19% of respondents in the study who were asked to decide themselves about the two programs gave an off-scale refusal.
What about your level of outrage?
In the study, 69% of respondents agreed that rationing of health care treatment is sometimes necessary, but 66% also felt outraged about the idea of having to ration. These attitudes were the same whether the respondents were assigned an evaluator perspective (as you were) or a direct decision maker perspective.
Read the article:
Why people refuse to make tradeoffs in person tradeoff elicitations: A matter of perspective?
Damschroder LJ, Roberts TR, Zikmund-Fisher BJ, Ubel PA. Medical Decision Making 2007;27:266-288.
Scott Kim, MD, PhD, is a Senior Investigator in the Department of Bioethics at the National Institutes of Health and Adjunct Professor of Psychiatry at the University of Michigan. Dr. Kim studies research ethics, especially the ethics of involving decisionally impaired persons in research, the ethics of high-risk research, and methodological issues in empirical bioethics research. He is also interested in the interface of conceptual and empirical methods of bioethics scholarship. Prior to joining the NIH, Dr.
Amanda Dillard, PhD, was awarded a $25,000 George Bennett Postdoctoral Grant by the Foundation for Informed Medical Decision Making. With this funding, Dr. Dillard will conduct surveys to examine whether certain types of patient testimonials have a beneficial influence on knowledge, satisfaction, and interest in shared health care decision making, specifically in the context of a decision aid related to colon cancer screening. She will use social cognitive theory, social comparison theory, and risk processing perspectives to guide her hypotheses about testimonials.
Dr. DillardÃ¢â‚¬â„¢s postdoctoral position at CBSSM was funded by VA Health Services Research and Development, Ann Arbor, Michigan.