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What's in a Name? A Pregnancy Scenario (Nov-07)

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.

In these circumstances would you be interested in having an amniocentesis performed?
  • 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 you a numbers person? (Oct-07)

Many types of medical decisions involve making sense of numbers such as test results, risk statistics, or prognosis estimates. But people vary in their ability and confidence with numbers. How would you rate your own "numeracy"?

 

Not good at all

 

 

 

 

 

Extremely good

How good are you at working with fractions?

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How good are you at working with percentages?

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How good are you at calculating a 15% tip?

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How good are you at figuring out how much a shirt will cost if it is 25% off?

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Not at all helpful

 

 

 

 

Extremely helpful

When reading the newspaper, how helpful do you find tables and graphs that are parts of a story?

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Always prefer words

 

 

 

 

Always prefer numbers

When people tell you the chance of something happening, do you prefer that they use words ("it rarely happens") or numbers ("there's a 1% chance")?

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Always prefer percentages

 

 

 

 

Always prefer words

When you hear a weather forecast, do you prefer predictions using percentages (e.g., "there will be a 20% chance of rain today") or predictions using only words (e.g., "there is a small chance of rain today")

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Never

 

 

 

 

Very often

How often do you find numerical information to be useful?

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Why is it important for researchers to know how numerate you are?

When a doctor or health educator is trying to communicate complex statistical information to a patient, it's helpful to know how well the patient understands numbers. This is called numeracy-the ability to process basic probability and numerical concepts. People low in numeracy might want or need different types of explanations than people high in numeracy.

How is numeracy measured?

In the past, researchers have used surveys similar to math tests to evaluate the levels of numeracy of participants in research studies. These objective numeracy tests can be time-consuming to administer and are often seen by the participants as stressful and annoying. As an alternative, a CBDSM research team-including Angela Fagerlin, Brian Zikmund-Fisher, Dylan Smith, Aleksandra Jankovic, and Peter Ubel-recently designed and tested an eight-item self-assessment tool, called the Subjective Numeracy Scale (SNS), to measure numeracy. As you saw when you completed the tool, four of the questions on the SNS measure people's beliefs about their skill in performing various mathematical operations, and four measure people's preferences about the presentation of numerical information. When the CBDSM team tested the SNS, they found that it was moderately correlated with objective numeracy tests. In a variety of risk communication and preference elicitation tasks, the SNS also predicted people's behavior almost as well as an objective numeracy test did. The advantage of the SNS is that it is quick to administer and is less stressful to participants than objective tests. In addition, only the SNS is recommended for phone or Internet administration. The researchers also found that study participants who completed the SNS were much more likely to answer all the numeracy questions and were much more likely to say that they would be willing to participate in an additional research study.

Are their broader implications?

Research has shown that many Americans, including highly educated individuals, have low levels of numeracy. Low numeracy has significant implications for people's health care, especially when it comes to understanding the risks and benefits of treatments. Although we may not easily change people's numeric ability, it may be possible to create health education materials that help patients with low numeracy skills. Several CBDSM researchers are have been pursuing this subject.

Read the articles:

Measuring numeracy without a math test: development of the subjective numeracy scale (SNS).
Fagerlin A, Zikmund-Fisher BJ, Ubel PA, Jankovic A, Derry HA, Smith DM. Medical Decision Making 2007;27(5):672-680.

Validation of the subjective numeracy scale (SNS): Effects of low numeracy on comprehension of risk communications and utility elicitations.
Zikmund-Fisher BJ, Smith DM, Ubel PA, Fagerlin A. Medical Decision Making 2007;27(5):663-671.

Making numbers matter: Present and future research in risk communication.
Fagerlin A, Ubel PA, Smith DM, Zikmund-Fisher BJ. American Journal of Health Behavior 2007;31(Suppl. 1):S47-S56.

 

 

A Matter of Perspective (Jul-07)

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.

One Director decides to fund Program A, which will cure 100 people with moderate shortness of breath. People with this condition have shortness of breath when walking an average block with no hills.
The other Director decides to fund Program B, which will cure 100 people with severe shortness of breath. People with this condition have shortness of breath even when walking only short distances, such as from the bedroom to the bathroom.
Which Director made the better decision?
  • Director who funded Program A (moderate shortness of breath)
  • Director who funded Program B (severe shortness of breath)
  • Both choices were equally good
If you chose either the Program A Director or the Program B Director, how may how many people would have to be cured of other condition to make the two choices seem equally good to you? Reminder: Program A and Program B would both cure 100 people.
 
Next, please check your responses to these statements:
"The thought of only one group of people being able to get treatment while other people may not be able to get treatment makes me feel outraged."
  • strongly agree
  • agree
  • neutral
  • disagree
  • strongly disagree
"I believe that there are situations where health care has to be rationed because sometimes there are not enough financial resources (eg, money for health care programs)."
  • strongly agree
  • agree
  • neutral
  • disagree
  • 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.

 

Kathryn Moseley served as one of the judges at "The Big Ethical Question Slam 5" hosted by a2ethics.org. In addition, Naomi Laventhal, Michele Gornick, Christian Vercler, Lauren Smith, and Lauren Wancata served as judges at the "Michigan Highschool Ethics Bowl 2."

Thanks to all the CBSSM folks who contributed their time!

For more information about these events and other great ethics-related activites, go to a2ethics.org.

A short video about the Highschool Ethics Bowl can be found here.

Bioethics Grand Rounds: Musical Event "When Death Comes Callin"

Wed, October 26, 2016, 12:00pm
Location: 
UH Ford Amphitheater & Lobby

When Death Comes Callin': Songs and Reflections About Death

Charlotte DeVries, Jeanne Mackey, Merilynne Rush, and friends offer a program of songs and brief readings reflecting various perspectives on death - humorous, sad, thoughtful, and quirky.

Lunch is provided on a first-come, first-served basis.

Tue, April 08, 2014

Reshma Jagsi’s study in the Journal of Clinical Oncology about financial decline in breast cancer survivors has been cited by various health media outlets, including Bio-Medicine, Health News Digest, and various other outlets. The study found that after receiving treatment, a quarter of breast cancer survivors were found to be worse off financially. 

Supporting information for: 2017 CBSSM Research Colloquium and Bishop Lecture (Norman Daniels, PhD)


"Setting priorities for Medicaid: The views of minority and underserved communities"
Presenter: Susan Goold, MD, MHSA, MA


Co-authors: Lisa Szymecko, JD, PhD; H. Myra Kim, ScD; Cengiz Salman, MA; A. Mark Fendrick, MD; Edith Kieffer, MPH, PhD; Marion Danis, MD, Zachary Rowe, BBA


Setting priorities for state Medicaid programs challenges policy makers. Engaging beneficiaries affected by tradeoffs could make allocations more just and more sensitive to their needs. 

Academic-community partnerships adapted the simulation exercise CHAT (CHoosing All Together) to engage community members in deliberations about Medicaid spending priorities.  After an informational video about Medicaid, individuals and deliberating groups choose from a menu of spending options constrained by limited resources. We randomly assigned participants from low-income communities throughout Michigan to participate in CHAT with (n=209) or without group deliberations (n=181) in English, Spanish or Arabic. Data collection included pre- and post-CHAT individual priorities and group priorities.

Low-income participants ranged from 18 to 81 years old (Mean 48.3); 61.6% were women. Over half (56.7%) self-identified as white, 30.8% African-American, 17.3% Hispanic, 9.2% Native American, and 12.1% Arab, Arab-American or Chaldean. Most (65.9%) had a chronic condition and 30.3% reported poor or fair health.

Before CHAT, most participants prioritized eligibility consistent with Medicaid expansion. They also prioritized coverage for a broad range of services. Most accepted daily copays for elective hospitalization (71.6% deliberators, 67.9% controls) and restricted access to specialists (60.2% deliberators, 57.4% controls). Deliberators were more likely than controls to increase, after deliberations, what they allocated to mental health care (between arm difference in allocation=0.22, p=.03) and eligibility (between arm difference in allocation=0.18, p=.04). Deliberating groups also prioritized eligibility; only 3 of 22 chose pre-expansion eligibility criteria, and 9 of 22 chose to expand eligibility further.

Members of underserved communities in Michigan put a high priority on Medicaid expansion and broad coverage. When given the opportunity to deliberate about priorities,  participants increased the priority given to expanded eligibility and coverage for mental health services.


"How Acceptable Is Paternalism? A Survey-Based Study of Clinician and Non-clinician Opinions on Decision Making After Life Threatening Stroke"
Presenter: Kunal Bailoor, MD Candidate


Co-authors: Chithra Perumalswami, MD, MSc; Andrew Shuman, MD; Raymond De Vries, PhD; Darin Zahuranec, MD, MS


Complex medical scenarios may benefit from a more paternalistic model of decision making. Yet, clinicians are taught to value patient autonomy, especially at the end-of-life. Little empirical data exist exploring opinions on paternalism.

Methods: A vignette-based survey exploring surrogate decision making after hemorrhagic stroke was administered to clinicians (faculty, residents, and nurses) at an academic health center, and non-clinicians recruited through a university research volunteer website. The cases involved an urgent decision about brain surgery, and a non-urgent decision about continuation of life support one week after stroke. Respondents rated the acceptability of paternalistic decision making, including clinicians not offering or making an explicit recommendation against the treatment, on a 4 point Likert scale.

Results: Of 924 eligible individuals, 818 (649 non-clinicians, 169 clinicians) completed the survey (completion rate 89%).  A minority of respondents (15.3%) found it acceptable not to offer surgery. Most believed it was acceptable to make an explicit recommendation that would likely result in death (73% for avoiding surgery, 69% for stopping the ventilator). Clinicians were more likely than non-clinicians to consider not offering surgery acceptable (30% vs 11%, p<0.0001). Clinicians were more likely to consider recommendations against surgery acceptable (82% vs 71%, p=0.003) and to consider recommendations to discontinue the ventilator acceptable (77% vs 67%, p=0.02). There were no differences between the nurse and physician acceptability ratings (p=0.92).

Conclusions: Clinicians and the lay public differ on the acceptability of paternalistic decision making. Understanding these differences are vital to improving communication between clinicians, patients, and families.


"Ethical Challenges Faced by Providers in Pediatric Death: A Qualitative Thematic Analysis"
Presenter: Stephanie Kukora, MD


Co-authors: Janice Firn, PhD, MSW; Patricia Keefer, MD; Naomi Laventhal, MD, MA
 

Background: Care providers of critically ill patients encounter ethically complex and morally distressing situations in practice. Though ethics committees guide ethical decision-making when conflicts arise in challenging cases, they rarely address routine needs of individual providers. Without ethics education, providers may lack skills necessary to resolve these conflicts or insight to recognize these dilemmas.

Objective: We sought to identify whether providers remark on ethical dilemmas/moral distress without being specifically prompted, when asked to comment on a recent in-hospital pediatric death. We also sought to characterize the nature of dilemmas or distress if found.

Methods: Providers involved in a deceased child’s care in the 24 hours prior to death were electronically surveyed. Questions included demographic information and free-text response. Free-text responses were thematically analyzed in Dedoose.

Results: There were 307 (35%) free-text responses in 879 completed surveys (33% total response rate), regarding the deaths of 138 patients (81% of in-hospital pediatric deaths) from November 2014 to May 2016. Multidisciplinary care team members from diverse hospital units were represented. 52 respondents described ethical challenges and/or moral distress. Disagreement/regret was a major theme, with subthemes of futility, suffering, and “wrong” medical choice made. Failure of shared decision-making was also a major theme, with subthemes of autonomy and best interest, false hope, denial, and misunderstanding/disagreement between the family and medical team. Some providers revealed personal ethical struggles pertaining to their role, including medication provision for pain at the end of life, struggling to be “truthful” while not divulging information inappropriate for their role, and determining when providing comfort care is ethically permissible.

Discussion/Conclusion: Providers experience ethical conflicts with pediatric end-of-life care but may be unwilling or unable to share them candidly. Education assisting staff in identifying and resolving these dilemmas may be helpful. Further support for providers to debrief safely, without criticism or repercussions, may be warranted.


"Capacity for Preferences:  An overlooked criterion for resolving ethical dilemmas with incapacitated patients"
Presenters: Jason Adam Wasserman, PhD; Mark Navin, PhD
 

Clinical bioethics traditionally recognizes a hierarchy of procedural standards for determining a patient’s best plan of care. In broad terms, priority is given first to autonomous patients themselves and then to surrogates who utilize substituted judgments to choose as they believe the patient would have chosen. In the absence of good information about what the patient would have wanted, clinical ethicists typically retreat to the “best interest” standard, which represents a relatively objective assessment designed to maximize benefits and/or minimize harms.  In this paper, we argue that “capacity for preferences” is a conceptually distinct and morally salient procedural standard for determining a patient’s best plan of care.  We build our argument on the grounds that 1) that many patients who lack decisional capacity can nevertheless reliably express preferences (an empirical claim); 2) these preferences are distinct from best interest and not reducible to best interest considerations; 3) that capacity for preferences, at a minimum, has moral valence for situations in which best interest is undetermined (and we argue this happens more frequently than commonly recognized); and, finally, 4) that capacity for preferences in incapacitated patients lacking reliable or valid surrogates might even subvert a best interest course of action in some cases.  Some precedent for our analysis can be found in the concept of pediatric assent. However, the idea that patient preferences matter morally has broad application for adult patients, including for those with advanced dementia and other mental illnesses that preclude capacity for decision-making.

Dr. Andrew Barnosky stepped down from his role as Adult Ethics Committee chair, which is a position he has served for the last 16 years. CBSSM Faculty member Dr. Andrew G. Shuman will be the new committee chair. Dr. Barnosky will continue as a member of the faculty and a member of the Committee. The UMHS press release can be found here.

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