Megan joined CBSSM in 2014 and has worked on multiple grant funded research projects related to health communication, patient-provider decision making, and health interventions driven by behavioral economics. She currently works with Dr. Brian Zikmund-Fisher on a National Science Foundation grant testing infectious disease communication strategies.
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Co-sponsored by the Center for Ethics in Public Life and the Center for Bioethics and Social Sciences in Medicine, the 2nd annual Bioethics Colloquium took place on Friday, May 20, 8:30-3:30 pm, in the Alumni Center. The colloquium featured presentations of research in or about bioethics conducted by U-M faculty, fellows, and students.
The keynote speaker was Susan Dorr Goold, MD, MHSA, MA, who gave a talk entitled, "Market failures, moral failures, and health reform."
Nearly 70 people attended the event, which featured 10 presentations by faculty, graduate students, and undergraduate students drawn from a variety of disciplines.
Wendy Uhlmann, Scott Roberts, and Ray De Vries will serve as panelists on Monday, September 11th for FINDING COMMON GROUND: A Conversation on Genetics and Religion at the Ann Arbor Downtown Library.
More information can be found here.
What do subjects need to know in order to agree to participate in research? An informed consent document is assumed to communicate the essential information, but it is not clear how carefully research participants read these documents.
Traditional ethical teaching suggests that a physician's assessment of a patient's best interest should guide the decision of whether to administer emergency life-sustaining therapy, absent guidance by the patient or family members. In pediatric medicine, physicians may insist on life-saving therapy if they believe it is in a child's best interest to receive it, even if the parents seek to refuse it. It is unclear exactly how physicians make such assessments, however, and whether/how these assessments influence decision-making in critical situations. Consider the following scenario:
The government requires that potential kidney transplant recipients be informed if an organ donor engaged in CDC categorized "high risk" behaviors. Are these "high risk" donor kidneys associated with worse survival rates following transplantation? Does this label "high risk" result in usable kidneys being discarded?
People in the U.S. make decisions about their health on a regular basis. For example,they are often asked to consider taking medication to treat common health problems, such as hypertension. But do patients have sufficient information to make these decisions? And what factors might influence the knowledge patients have, and their treatment decisions?
Consider this scenario:
Bob is a 52-year-old man who went to see his physician for a routine check-up. Bob’s doctor told him his cholesterol levels were slightly elevated and suggested cholesterol medication. Bob wondered how long he would have to take the medication, and whether there would be any side effects. Please answer the following two questions about cholesterol medications.
When people start taking cholesterol medications, how long is it usually recommended that they take them?
- less than 6 months
- 6-12 months
- 1-3 years
- for the rest of their lives
How do your answers compare?
Making an informed medical decision about whether to take cholesterol medications depends, at least in part, on understanding how long a medication should be taken and whether there are side effects. CBSSM investigators Angela Fagerlin, Mick Couper, and Brian Zikmund-Fisher recently published an article on patient knowledge from the DECISIONS study, a large survey of U.S. adults about common medical decisions. One main objective of the study was to determine adults’ knowledge about information relevant to common types of medication, screening, or surgery decisions they recently made. Data were collected from 2575 English-speaking adults aged 40 years and older who reported having discussed common medical decisions with a health care provider within the previous two years. Participants answered knowledge questions and rated the importance of their health care provider, family/friends, and the media as sources of information about common medical issues.
People taking cholesterol medications usually should take them for about 3 or more years, and perhaps even for the rest of their lives. A little more than 60% of the study respondents accurately identified the time to take cholesterol medications.
Many people have trouble with this question and do not know that muscle pain is the most commonly reported side effect of cholesterol medications. Only 17% of DECISIONS study respondents were able to answer this question correctly. About 1 in 5 respondents incorrectly identified liver problems as the most common side effect of cholesterol medications.
Overall, the investigators found that patient knowledge of key facts relevant to recently made medical decisions was often poor. In addition, knowledge varied widely across questions and decision contexts. For example, 78% of patients considering cataract surgery correctly estimated typical recovery time, compared to 29% of patients considering surgery for lower back pain or 39% of patients considering a knee or hip replacement. Similarly, in thinking about cancer screening tests, participants were more knowledgeable of facts about colorectal cancer screening than those who were asked about breast or prostate cancer. Respondents were consistently more knowledgeable on questions about blood pressure medication than cholesterol medication or antidepressants.
The impact of demographic characteristics and sources of information also varied substantially. For example, black respondents had lower knowledge than white respondents about cancer screening decisions and medication, even after controlling for other demographic factors. Researchers found no race differences for surgical decisions, however.
The authors concluded by noting that improving patient knowledge about risks, benefits, and characteristics of medical procedures is essential to support informed decision making.
For more information:
Cancer screening is generally recommended for people over the age of 50. Screening tests, such as colonoscopies, mammograms and PSAs (prostatespecific antigen), can help detect cancer at an early stage andprevent deaths. These screening tests, however, do have risks so,along with their doctor, people need to make a decision about howoften to get screened and when or if one should stop gettingscreened.
Consider the question:
Now, imagine that you were screened for cancer about a year ago and no cancer was found. You and your doctor are talking about when you should come back for screening in the future. Your doctor explains that cancer screening guidelines recommend that you do come back for more screening tests but as you get older, screening for cancer is no longer a good option. Your doctor states that you should follow this recommendation as you age. Now, imagine that you were screened for cancer about a year ago and no cancer was found. You and your doctor are talking about when you should come back for screening in the future. Your doctor explains that cancer screening guidelines recommend that you do come back for more screening tests but as you get older, screening for cancer is no longer a good option. Your doctor states that you should follow this recommendation as you age.
How do your answers compare?
To learn more about this study, see:
A 5% chance of death or a 10% chance of death: which would you choose?
Imagine that you have been diagnosed with a slow growing cancer. Right now, the cancer is not causing you to feel sick. For most people, the cancer will grow so slowly it will never cause them any trouble. For others, the cancer will grow to the point that it makes them sick. Untreated, five percent (5 out of 100) will die of the cancer. Your doctor tells you that you have two treatment options: watchful waiting or surgery. Watchful waiting means you will not do any treatment right away, but your doctor will follow your cancer closely and treat any symptoms that you have if it begins to spread. Although it would be too late to be cured, you would be comfortable and free of pain. There are no side effects to watchful waiting, but five percent (5 out of 100) of the people who choose this treatment will develop symptoms and die from their cancer within five years. On the other hand, the surgery would cure your cancer permanently. Following surgery you will feel more tired than usual and will experience stomach upset occasionally for the three months following your surgery. However, surgery has a ten percent (10 out of 100) risk of death during the surgery.
Imagine that both of these treatments are completely covered by your health insurance. Which would you choose?
- I would not take the surgery and accept the 5% chance of dying from this cancer.
- I would take the surgery and accept the 10% chance of dying from the surgery.
How do your answers compare?
In the real world, cancer patients sometimes choose treatments that may have devastating side effects over less invasive, yet equally or more effective, approaches. One explanation for this is that people may feel a strong need to "get the cancer out" of their bodies. Surgical removal of all potentially cancerous tissues may satisfy this desire so thoroughly that people end up ignoring important statistical information about adverse outcomes.
Making a choice not in their best interest
CBDSM investigators Angela Fagerlin, Brian Zikmund-Fisher, and Peter Ubel hypothesized that people perceive cancer diagnoses as a call to action, and more specifically, a call to get rid of the cancer through surgery, regardless of what statistical information might say to the contrary. Consequently, they predicted that when presented with hypothetical cancer diagnoses, many people would say they would pursue surgery even if such an action would decrease their chance of survival.
To explore the relative frequency of people's willingness to choose surgery when it wasn't in their best interest, the investigators designed a cancer scenario similar to the one you read on the previous page. Participants were presented either a surgery or a medication treatment that would either increase or decrease their chance of survival.
The investigators found that participants who were presented with the opportunity to rid themselves of their cancer through surgery were significantly more inclined to take action than those who were presented with the medication treatment. For example, when the treatment reduced their overall chance of survival, 65% chose the surgery, whereas only 38% chose the medication treatment. This suggests that people's treatment decisions may be based not on the effectiveness of the treatments, but rather on their beliefs about how cancer should be treated. Specifically, cancer diagnoses seem to conjure up a strong desire for active treatment. And people seem to have an intuitive belief that action should not just involve treatment, but surgical removal of the cancer.
Why these findings are important
The results of this study may resonate with many clinicians who have encountered cancer patients who seem to desire treatment for treatment's sake, or who have a preference for surgical intervention even before they learn about the pros and cons of their treatment alternatives. This study should serve to remind clinicians that patients' preference for action can be strong enough, at times, to be a bias. At a minimum, it is important for health care professionals to be aware of the potential for such biases, so they can decide whether to accept patients' preferences at face value, or try to convince patients that aggressively treating a tumor may not be in their best interests.
Read the article:
Cure me even if it kills me: Preferences for invasive cancer treatment.
Fagerlin A, Zikmund-Fisher BJ, Ubel PA. Medical Decision Making 2005;25(6):614-619.
How do your risk estimate and your actual level of risk impact your anxiety? Please answer the following question to the best of your ability:
What is the chance that the average woman will develop breast cancer in her lifetime?
The average lifetime chance of developing breast cancer is actually 13%.
How do your answers compare?
Making a risk estimate can change the feel of the actual risk
CBDSM investigators Angela Fagerlin, Brian Zikmund-Fisher, and Peter Ubel designed a study to test whether people react differently to risk information after they have been asked to estimate the risks. In this study, half the sample first estimated the average woman's risk of breast cancer (just as you did previously), while the other half made no such estimate. All subjects were then shown the actual risk information and indicated how the risk made them feel and gave their impression of the size of the risk. The graph below shows what they found:
As shown in the graph above, subjects who first made an estimated risk reported significantly more relief than those in the no estimate group. In contrast, subjects in the no estimate group showed significantly greater anxiety. Also, women in the estimate group tended to view the risk as low, whereas those in the no estimate group tended to view the risk as high.
So what's responsible for these findings? On average, those in the estimate group guessed that 46% of women will develop breast cancer at some point in their lives, which is a fairly large overestimate of the actual risk. It appears, then, that this overestimate makes the 13% figure feel relatively low, leading to a sense of relief when subjects find the risk isn't as bad as they had previously thought.
Why this finding is important
Clinical practice implications - The current research suggests that clinicians need to be very deliberate but very cautious in how they communicate risk information to their patients. These results argue that a physician should consider whether a person is likely to over-estimate their risk and whether they have an unreasonably high fear of cancer before having them make a risk estimation. For the average patient who would overestimate their risk, making a risk estimation may be harmful, leading them to be too relieved by the actual risk figure to take appropriate actions. On the other hand, if a patient has an unreasonably high fear of cancer, having them make such an estimate may actually be instrumental in decreasing their anxiety. Physicians may want to subtly inquire whether their patient is worried about her cancer risk or if she has any family history of cancer to address the latter type of patient.
Research implications - Many studies in cancer risk communication literature have asked participants at baseline about their perceived risk of developing specific cancers. Researchers then implement an intervention to "correct" baseline risk estimates. The current results suggest that measuring risk perceptions pre-intervention will influence people's subsequent reactions, making it difficult to discern whether it was the intervention that changed their attitudes or the pre-intervention risk estimate. Researchers testing out such interventions need to proceed with caution, and may need to add research arms of people who do not receive such pre-tests.
For more details: Fagerlin A, Zikmund-Fisher BJ, Ubel PA. How making a risk estimate can change the feel of that risk: shifting attitudes toward breast cancer risk in a general public survey. Patient Educ Couns. 2005 Jun;57(3):294-9.