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Brian Zikmund-Fisher,  Angela Fagerlin, Nicole Exe, and Knoll Larkin have been involved in the Visualizing Health Project, which has recently launched an online style guide  for communicating health data. You can check it out at: www.vizhealth.org

The Visualizing Health project was a short and highly intense project funded by the Robert Wood Johnson Foundation designed to push the envelope both in considering visual designs for communicating health risk data and in developing iterative research approaches for testing them. The project involved a large team combining researchers and staff from both the University of Michigan's Center for Health Communications Research and the Center for Bioethics and Social Sciences in Medicine. The UM team then worked closely on a week by week basis with Thomas Goetz (former editor of Wired magazine) who envisioned the project, Tim Leong (graphic designer, author of Super Graphic), Andrea Ducas from the Robert Wood Johnson Foundation, and teams of graphic designers that Tim recruited.

They created 16 distinct visual data display tasks related to health risks, had teams of graphic designers develop display concepts, and iteratively tested these displays using multiple online survey methodologies. The resulting designs and data were then assembled in a project website that included all the images, plus commentary and additional features such as a design "wizard" to help guide users to visual displays that best fit their personal needs.

Also, see the Robert Wood Johnson Foundation Culture of health blog.

Alan R. Tait, PhD

Faculty

Dr. Tait is the Department of Anesthesiology Endowed Professor of Clinical Research. Dr. Tait is a former long-standing member of the Institutional Review Board and a current member of the Medical School Admissions Executive Committee. In addition, Dr. Tait is the Chair of the Research Committee for the Society for Pediatric Anesthesia.

Last Name: 
Tait

Give me colostomy or give me death! (Aug-06)

Click to decide between death and living with a colostomy. Which would you choose? Are you sure?

Given the choice, would you choose immediate death,or living with a colostomy (where part of your bowel is removed and you have bowel movements into a plastic pouch attached to your belly)?

  •  Immediate Death
  •  Colostomy

Think about what it would be like if you were diagnosed with colon cancer. You are given the option of choosing between two surgical treatments.The first is a surgery that could result in serious complications and the second has no chance of complications but has a higher mortality rate.

Possible outcome Surgery 1
(complicated)
Surgery 2 
(uncomplicated)
Cure without complication 80% 80%
Cure with colostomy 1%  
Cure with chronic diarrhea 1%  
Cure with intermittent bowel obstruction 1%  
Cure with wound infection 1%  
No cure (death) 16% 20%

If you had the type of colon cancer described above, which surgery do you think you would choose?

  • Surgery 1
  • Surgery 2

How do your answers compare?

In fact, past research has shown that 51% people choose the surgery with a higher death rate, even though most of them initially preferred each of the four surgical complications, including colostomy, over immediate death.

Are you saying what you really mean?

CBDSM investigators Brian Zikmund-Fisher, Angela Fagerlin, Peter Ubel, teamed up with Jennifer Amsterlaw, to see if they could reduce the number of people choosing the surgery with the higher rate of death and therefore reducing the discrepancy. A large body of past research has shown that people are notoriously averse to uncertainty. The investigators had a hunch that uncertainty could account for some of the discrepancy. Surgery 1 has a greater number of ambiguous outcomes, perhaps causing people to be averse to it. In an effort to minimize this uncertainty, the investigators laid out a series of scenarios outlining different circumstances and presentations of the two surgeries. For example the research presented some of the participants with a reframing of the surgery information, such as:

Possible outcome Surgery 1
(complicated)
Surgery 2 
(uncomplicated)
Cured without complication 80% 80%
Cured, but with one of the following complications: colostomy, chronic diarrhea, intermittent bowl obstruction, or wound infection 4%  
No cure (death) 16% 20%

The investigators believed by grouping all of the complications together that people would be more apt to chose the surgery with the lower mortality rate, because seeing a single group of undesirable outcomes, versus a list, may decrease some of the ambiguity from previous research.

Although none of the manipulations significantly reduced the percentage of participants selecting Surgery 2, the versions that yielded the lowest preference for this surgery all grouped the risk of the four possible complications into a single category, as in the example shown above.

Why these findings are important

Over the past several decades there has been a push to give patients more information so they can make decisions that are consistent with their personal preferences. On the other hand there is a growing psychological literature revealing people's tendency to make choices that are in fact inconsistent with their own preferences; this is a dilemma. Because the present research suggests that the discrepancy between value and surgery choice is extremely resilient, much research still needs to be done in order to understand what underlies the discrepancy, with the goal of eliminating it.

The research reported in this decision of the month is currently in press. Please come back to this page in the near future for a link to the article.

Read the article:

Can avoidance of complications lead to biased healthcare decisions?
Amsterlaw J, Zikmund-Fisher BJ, Fagerlin A, Ubel PA. Judgment and Decision Making 2006;1(1):64-75.

 

 

 

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.

 

Edward Goldman, JD, BA

Faculty

From 1978 to 2009, Ed was head of the U-M Health System Legal Office.  In 2009 he moved into the Medical School Department of ObGyn as an Associate Professor to work full-time on issues of sexual rights and reproductive justice.  He has teaching appointments in the Medical School, the School of Public Health, the Law School, and LSA Women's Studies.  He teaches courses on the legal and ethical aspects of medicine at the Medical School, the rules of human subjects research at the School of Public Health and reproductive justice in LSA and the Law School..  In 2011, Ed went to Ghana and helpe

Research Interests: 
Last Name: 
Goldman

Leaving the Emergency Room in a Fog (Sep-09)

Consider this scenario:

Alfred made a visit to his local Emergency Room. What was his diagnosis? What did the medical team do for his problem? What was he supposed to do to continue care at home? And what symptoms was he supposed to watch for to alert him to return to the ER?

Alfred woke up at 4 am on Sunday morning with pain in his left foot. That place where his new running shoes had rubbed a raw spot earlier in the week was getting worse. By 9 am, the foot was red and swollen, with a large oozing sore, and Alfred decided to go to the Emergency Room at his local hospital.

Late on Sunday afternoon, Alfred returned home from the ER. He crutched his way into the house and collapsed on the sofa. His teenage son quizzed him.

"What did they say was wrong?"
"Oh, an infection," replied Alfred.
"Well, what did they do for it?"
"I think they cut a chunk out of my foot," said Alfred.
"Whoa! Did they give you any medicine?"
"Yeah, a shot," said Alfred.
"And what’s with the crutches?"
"I’m supposed to use them for a while," said Alfred, looking annoyed.
"How long a while?"
"It’s written down," said Alfred, digging a crumpled sheet of paper out of his pocket.
"Says here you should take some prescription and elevate your left leg for two days."
"Two days? I have to go to work tomorrow," groaned Alfred.
"And you’re supposed to go back to the ER if you have a fever or pain in your leg. Where’s the prescription?"
"Here, look through my wallet. Maybe I stuck it in there," said Alfred.
The good news is that Alfred recovered completely, with some assistance and cajoling from his son. But how common is it for people who go to the Emergency Room to be foggy about what happened and what they should do once they leave the ER?
What do you think is the percentage of ER patients who do not understand at least one of the following: their diagnosis, the emergency care they received, their discharge care, or their return instructions?
 
  • 38%
  • 48%
  • 78%
  • 88%

How do your answers compare?

A recent study in the Annals of Emergency Medicine found that 78% of emergency room patients showed deficient comprehension in at least one of these areas:
 
  • Diagnosis
  • Emergency care that was given
  • Post-ER care needs
  • Symptoms that would require a return to the ER
51% of patients showed deficient comprehension in two or more areas. Only 22% of reports from patients were in complete harmony with what their care teams reported in all four areas. The biggest area of misunderstanding was in patients' post-ER care needs, such as medications, self-care steps, follow-up from their regular doctors, or follow-up with specialists.
 
Even more alarming is that, according to the study, "most patients appear to be unaware of their lack of understanding and report inappropriate confidence in their comprehension and recall." The patients were quite sure of what they knew 80% of the time—even when what they knew was not right.
 
These results suggest that Emergency Room teams need to do a better job of making sure that patients go home with clear information and instructions—and that patients and their loved ones shouldn't leave until they fully comprehend their situation.
 
Lead author Kirsten G. Engel, MD, conducted this study, "Patient Comprehension of Emergency Department Care and Instructions," with Michele Heisler, MD, Dylan M. Smith, PhD , Claire H. Robinson, MPH, Jane H.Forman, ScD, MHS, and Peter A. Ubel, MD, most of whom are affiliated with CBDSM.
 
The researchers carried out detailed interviews with 140 English-speaking patients who visited one of two Emergency Departments in southeast Michigan and were released to go home. These interviews were compared with the patients' medical records, and the comparisons revealed serious mismatches between what the medical teams found or advised and what the patients comprehended.
 
"It is critical that emergency patients understand their diagnosis, their care, and, perhaps most important, their discharge instructions," says Kirsten Engel, a former UM Robert Wood Johnson Clinical Scholar who is now at Northwestern University. "It is disturbing that so many patients do not understand their post-Emergency-Department care, and that they do not even recognize where the gaps in understanding are. Patients who fail to follow discharge instructions may have a greater likelihood of complications after leaving the Emergency Department."
 
Peter A. Ubel, the study's senior author, agrees: "Doctors need to not only ask patients if they have questions, but ask them to explain, in their own words, what they think is wrong with their health and what they can do about it. And patients need to ask their doctors more questions, and even need to explain to their doctors what they think is going on."
 
Read the article:

 

Internet Survey Lab

Overview

The Internet Survey Lab at the Center for Bioethics and Social Sciences in Medicine (CBSSM), led by Dr. Brian Zikmund-Fisher, facilitates the programming of complex experimental designs, using the graphical and interactive capabilities of the Internet. CBSSM has extensive experience in developing, programming and conducting survey research using Internet-based methodologies. 

Why We Use the Internet

A key advantage of Internet surveys is that they can shape and direct a user's experience in response to computer generated randomization and/or respondents' own answers to questions earlier in the survey. Additionally, page and answer order can be truly randomized as appropriate to limit cognitive biases. The unique advantage of Internet surveys, however, is that many different types of stimuli can be randomized or varied; static visual images, movies, or sounds can all be used in addition to text. Furthermore, the nature of the browser interface enables user-directed interactivity, such as user-adjustable risk communication graphics, that provide unique opportunities for both knowledge communication and response assessment.

Using the Internet to conduct survey research is also very efficient: we can develop and test surveys in only a few months' time, and once a survey is ready, large scale data collection (e.g., 1500-3000 completed surveys) can be completed in only 2-3 weeks.  Such surveys can also be cost effective, since while significant effort goes into development, creation, and testing of the survey, almost no personnel effort is required for data collection, entering, coding, or cleaning.  In addition, oftentimes several small surveys can be combined into a single instrument, creating further efficiencies.

Sometimes, our studies use large, demographically diverse samples obtained through commercial survey research firms. This methodology allows us to tailor the population being surveyed on multiple demographic variables (e.g., sampling only women age 40-75 for a study about breast cancer treatments) and provides us with ample statistical power to conduct multi-factorial experimental tests. Other times, we use more inexpensive samples from Amazon Mechanical Turk (MTurk) for quick pilot testing or to enable rapid, iterative testing of designs. Regardless, the use of randomized designs ensures high internal validity for the research despite the use of an Internet-only sample.

CBSSM Surveys

CBSSM has had considerable success using this methodology, publishing multiple manuscripts in highly regarded peer-reviewed journals. Studies that have used this methodology have addressed a variety of topics, including:

  • The use of pictographs to display risk (20082008, 2014) including in comparison to other graphical formats (2008, 2010, 2010). 
    Note: to create your own pictographs, see www.iconarray.com.
  • Misprediction of happiness between younger and older adults (2005)
  • Elicitation of utility and willingness to pay (200720072008)
  • Research ethics, e.g., participation of mentally vs. medically ill in research (2005)
  • Risk communications that emphasize incremental risks instead of absolute risks (2008)
  • Simplifying risk communications about adjuvant therapy options (2008).
  • Effect of risk labels on prenatal screening decisions (2007).
  • Time-insensitivity in people's understanding of survival curves (20052007)
  • Self-other discrepancies in medical decisions (20062008)
  • Sequential vs. all at once presentations of risk information (2011)
  • Testing of animated or interactive risk graphics (2011, 2012, 2014)
  • Optimal levels of precision in risk communications (2011, 2012)
  • Framing of health promotion messages (2012)
  • Exploration of role of narratives in decision making (2010)
  • Values Clarification (2015)
  • Intuition and Deliberation in Decision Making (2015)

Contact Us

For questions about our methods or inquiries about potential Internet survey research collaborations, please contact Brian Zikmund-Fisher at bzikmund@umich.edu.

Supporting information for: 2015 CBSSM Research Colloquium and Bishop Lecture (Lawrence O. Gostin, J.D., LL.D Hon.)

Natalie Bartnik, MPH, Research Associate, HBHE Genetics Research Group, UM School of Public Health: "Why, how and when oncologists disclose genome sequencing results in clinical practice"

Abstract: Integrating an individual’s clinical history with genome sequencing data can inform diagnostic and treatment strategies tailored to the patient’s mutational landscape. In oncology, precision medicine offers the additional opportunity to characterize novel gene targets for patients with cancer who lack known or viable targets. It is not known whether oncologists communicate sequencing results to patients, or how and why oncologists integrate sequencing profiles into clinical practice. In a survey of 43 oncologists who referred 111 patients to the MIONCOSEQ Study, we found that nearly a quarter of oncologists planned to make changes to their patient’s treatment based on genomic findings. Prominent barriers to the integration of sequencing results into clinical practice were a lack of findings with perceived clinical significance, as well as limitations in locally available clinical trials. The majority of physicians planned to communicate sequencing results to their patients, mostly via in-person clinic visits.


Michele Gornick, PhD, MICHR PTSP Postdoctoral Fellow, VA HSRD Fellow & CBSSM Research Investigator: "Information and deliberation make a difference: The public’s preferences for the return of secondary genomic findings"

Abstract: As genome sequencing becomes a part of clinical practice, how best to disclose sequencing results –including secondary findings-- raises significant issues. Expert consensus panels have been convened to provide recommendations, but what do members of the public want? In order to address this gap, we organized a deliberative democracy (DD) session to educate members of the public on genome sequencing, to engage them in dialogue about the benefits and risks of the clinical implementation of this technology, and to elicit their informed perspectives about policies governing the return of secondary findings. A significant shift in participants’ perspectives on the disclosure of adult onset conditions from the baseline survey, that remained stable after a month follow-up (response rate = 87%; Χ2(1, N=60) = 4.26, p =0.039), suggests the value of education and deliberation for the appreciation of the scientific and ethical complexities of genome sequencing.


Aaron Scherer, PhD, CBSSM Postdoctoral Fellow: "Elephants, Donkeys, and Medicine: Political Differences in Health Risk Perceptions and Adherence to Medical Recommendations"

The relationship between political ideology and health is often relegated to discussions of health care policy. But what if political ideology affects much more than health care policy preferences? I will discuss two studies that provide some initial evidence that political ideology influences our perceptions of health risks and adherence to medical recommendations. In one study examining risk communication strategies, political ideology was related to differences in perceptions of Ebola and influenza risk, as well as willingness to vaccinate against these two infectious diseases. In a second study examining beliefs in medical conspiracies, political ideology was related to differences in self-reported adherence to doctor’s recommendations and prescription use. The psychological differences between conservatives and liberals that may help illuminate why these differences exist will be discussed.

Stephanie Kukora, MD and Nathan Gollehon, MD, Fellows, Division of Neonatal-Perinatal Medicine, Department of Pediatrics, UM Mott Children’s Hospital: "Epidemiology of outpatient prenatal consultation: implications for decision-making and perinatal outcomes"

Abstract: Neonatologists provide anticipatory guidance and support decision-making for complicated pregnancies, in which poor/ambiguous prognostication can lead to over-/under-treatment.  Referral to antenatal palliative care consultation (PCC) is not standard; little is known about the basis for referral, and their role in perinatal decision-making.

117 women had outpatient neonatology consultation, with decision-making for 146 fetuses with multiple anomalies/genetic, single major anomaly, or obstetric complications. 18(12%) were given a prognosis of uniform non-survival and 41(28%) had anticipated survival with intervention. Remaining fetuses were given unknown prognoses 87(60%), some qualified “likely survivable” 17(12%) or “likely poor” 33(23%). Most prognoses aligned with outcomes, though outcomes were better than predicted in 3(2%) infants and worse in 10(7%).  Mismatches between prognosis and decision occurred in 10(7%) infants who were provided resuscitation despite “non-survival” or “likely poor” prognoses.

23 (19.7%) of the 117 mother/fetus pairs received antenatal PCC.  Prognoses included: 11(48%) non-survivable, 11(48%) unknown but likely poor, 1(4%) survivable with surgical intervention. Fetal/neonatal outcome included: fetal demise 5(22%), in-hospital death 16(70%), survival to discharge 2(9%). 22 maternal/fetal pairs with 3(13%) non-survivable and 19(86%) likely poor prognoses were not referred, but had similar outcomes: fetal demise 4(18%), in-hospital death 15(68%), survival to discharge 3(14%). Those with PCC were more likely to choose comfort-care than those without (61% vs. 18%, p < 0.01). Of non-survivors, 94% with PCC died within 4 days while 27% without PCC received >14 days of intensive care.

We identified relatively few cases of mismatch between prognosis and outcome; however, rare cases of prognostic failure warrant caution. Although allowing parents to pursue aggressive neonatal care respects autonomy, it may delay rather than prevent death. Long-term outcomes with and without PCC were similar for infants with poor prognoses, though non-survivors with PCC were more likely to have a comfort care plan and shorter time to in-hospital death.


Minnie Bluhm, PhD, MPH, Assistant Professor, School of Health Sciences, Eastern Michigan University: "Oncologists' decisions about administering late chemotherapy: What makes it so difficult?"

Abstract: Background. An estimated 20-50% of incurable cancer patients receive chemotherapy in the last 30 days of life, although little data support this practice.  Continued use of chemotherapy typically precludes hospice enrollment.  It may also result in more symptoms, increased use of aggressive treatments, and worsening quality of life.  Despite this, few studies have explored oncologists' rationales for administering chemotherapy during the last weeks of life.  The purpose of this study is to examine factors that oncologists report influence their decisions about late chemotherapy.

Methods. In-depth individual interviews were conducted with 17 oncologists using a semi-structured interview guide.  Interviews were audio-recorded and transcribed verbatim.  Transcripts were coded and content analyzed for themes and patterns.

Results.  Three key findings emerged.  1) Clinical factors drive oncologists’ late chemotherapy decisions when they point to clear treatment choices, along with patient preferences.  When clinical factors are ambiguous, non-clinical factors become more salient.  2) Late chemotherapy is patient-driven.  It is used to palliate physical and emotional symptoms and maintain patient hope, even when physical benefit is not expected.  3) Caring for dying patients is difficult and impacts oncologists and their treatment decisions.  Difficulties also cited as influences favoring treatment include: emotional exhaustion, difficulty communicating about stopping or not starting chemotherapy, overwhelming sense of responsibility for life and death, feeling badly about the limits of oncology to heal, and prognostic uncertainty.

Conclusions.  Findings reveal a nuanced understanding of why it can be so difficult for oncologists to refuse chemotherapy to patients near death.  Doing so adds to the existing burden of caring for dying patients.  Therefore, at times, oncologists prescribe chemotherapy to simply help everyone feel better, regardless of expected clinical benefits or costs.  Future work is needed on the impact of caring for dying patients on oncologists and on supportive interventions that promote optimal treatment decisions.

Danielle Czarnecki, PhD Candidate, UM Department of Sociology: "Moral Women, Immoral Technologies: How Devout Women Negotiate Maternal Desires, Religion, and Assisted Reproductive Technologies"

Abstract: Catholicism is the most restrictive world religion in its position on assisted reproductive technologies (ARTs). The opposition of the Church, combined with the widespread acceptability of ARTs in the U.S., creates a potentially profound moral dilemma for those who adhere to Church doctrine. Drawing on interviews from 33 Catholic women, this study shows that devout women have different understandings of these technologies than non or less religious women. These differences are rooted in devout women’s position of navigating two contradictory cultural schemas (Sewell 1992) —“religious” and “secular”—regarding the meaning of reproductive technologies in the contemporary U.S. Religious schemas provide devout women with different cultural resources that allow them to develop strategies to avoid the use of ARTs. Yet they must still reckon with the ideal of biological parenthood. I show how devout women draw on religious doctrine to find value and meaning in their suffering , to move beyond biological motherhood,  and to ultimately achieve a moral femininity. While religion increases the burden of reproduction for devout women, it also provides the cultural resources to resist the financial, emotional, and physical difficulties experienced by women who use ARTs.


Uchenna Ezeibe, MD, Resident Physician, UMHS Department of Pediatrics & Communicable Diseases: "Pediatric Ethics Consultation Service at a Tertiary Hospital: A Retrospective Review"

Abstract: Background: Published data about hospital ethics consultation services focus primarily on adult patients. There is little information on pediatric ethics consultations – specifically whether patient demographics were related to type and prevalence of consults.

Objective: To review recent ethics consults at a large children’s hospital and explore associations with patient demographics.

Design/Methods: We reviewed ethics consults between 7/1/2009 – 12/31/2013 at a Midwest children’s hospital. We used Armstrong Clinical Ethics Coding System 2013©, modified for pediatrics, to code consults. We collected data on patient race, age, and insurance status (private vs. public) as a proxy for socioeconomic status. We used Microsoft Excel 2013© to generate descriptive statistics.

Results:, approximately 321,713 inpatient visits, and 29 ethics consults were reviewed. Most consults (72.5%) concerned inpatients. Of these, 82% originated from 1 of 3 ICUs (neonatal, pediatric, and pediatric-cardiothoracic). The most common reasons for consultation were: 1) treatment-based decision-making (31%),); 2) end-of-life decisions (28%); & 3) substitute decision-making (24%).  The mean patient age for treatment-based and substitute decision-making consults were similar at 6.8 and 7.9 years, respectively.  Younger patients (mean age: 2.4 years) were involved in end-of-life dilemmas. Patients receiving consults differed from the general patient population in that fewer patients with consults were White (52% vs. 71%) and more were  African-American (34.5% vs 9%).  Approximately 76% of patients with ethics consults had public insurance compared to approximately 29% amongst all inpatient admissions.

Conclusion:  In this single-center retrospective review, we found that African-Americans and patients with public insurance were over-represented in receipt of ethics consultations compared to the general patient population. We also found that dilemmas about end-of-life decisions were more common for younger children. Given our small numbers, strong conclusions cannot be drawn from this data. Nevertheless, our findings do point to areas where communication between family and medical team can be improved.
 

Matthew A. Corriere MD, MS

Faculty

Dr. Corriere’s research seeks to develop novel treatment approaches that incorporate patient-centered, cultural, and societal perspectives.  His current work is focused on helping doctors understand what matters most to patients so that this information can be used to make shared treatment decisions based on their goals and values.  Dr. Corriere also conducts research evaluating clinical treatment outcomes and imaging for arterial and venous disease.  Dr.

Last Name: 
Corriere

Supporting information for: 2016 CBSSM Research Colloquium and Bishop Lecture (William Dale, MD, PhD)

Katrina Hauschildt, MA, PhD Candidate, Department of Sociology: “Language and Communication as Professionalization Projects in Clinical Ethics Consultation”


Although sociologists have examined the field of bioethics broadly, less empiric research has explored the process of clinical ethics consultation (CEC) in practice. This paper seeks to describe how UMHS’ CEC service focuses on communication, language, and terminology in professionalizing their membership and broadening the scope of their services. The CEC service established a specific communication standard for its written recommendations that emphasizes specificity and clarity for patients and their families, other providers, and members of the ethics committee. By identifying and reinforcing the importance of language and word choice in their own recommendations, newer members of the CEC are “trained” in how to craft recommendations, develop a specific jargon, and establish communication standards that differ from those used in other aspects of medical practice and documentation. The CEC service is often involved in addressing a variety of communication issues that arise in patient care, and these problems are thusly considered within the professional scope of the CEC service. By establishing the CEC service as an appropriate resource for dealing with communication issues between patients and their care team, the CEC service expands the professional boundaries of their work beyond strictly ethical expertise. The implications of these processes for professionalization and communication may be applicable to CEC services more broadly.


Devan Stahl, PhD, Assistant Professor of Clinical Ethics, Center for Ethics and Humanities in the Life Sciences, MSU: "Is there a right not to know?"


There is a widespread presumption within medicine that terminally ill patients have a “right not to know” their prognosis. Guidelines for giving bad news (SPIKES; ABCDE) all require that the patient be asked first. There may be a dark side to this practice, however: terminally ill patients’ ignorance or denial of their prognosis too often lasts to the very end, one important factor discouraging timely referral and use of palliative and hospice care. Because of a possible link between a right not to know one’s prognosis and the aggressive treatment that patients with advanced illness too often receive at the end of life, the claim that there is a right not to know needs much more serious examination than it has received.

The authors argue that patients with advanced illness do not have a right not to know their prognosis. Withholding prognostic information in deference to a right not to know impedes patients’ capacity to make informed autonomous decisions about their treatment, encourages denial, and increases the likelihood of poor end of life care.

Chithra Perumalswami, MD MSc, Robert Wood Johnson Foundation/Veterans Affairs Clinical Scholar: "Insurance Status of Elderly Americans and Location of Death"


Context:  The decision to forego curative treatments (which includes the Medicare Skilled Nursing Facility Medicare benefit) is not financially neutral for terminally ill patients who do not have concurrent insurance (Medicaid or private insurance) in that they are subsequently asked to pay for room and board of the nursing home if they choose the Medicare hospice benefit.  The association between insurance status and location of death is currently unknown.  
Purpose: To determine whether the concurrent insurance status with Medicare (Medicaid vs. private insurance) of decedents is associated with location of death in a nationally representative survey of elderly Americans.
Methods: Longitudinal analysis of 7,979 decedents aged 50 years or older in the Health and Retirement Study from 2000-2010 (6 biennial waves). We examined associations between insurance status and location of death (home, hospital, nursing home, hospice) using multinomial logistic regression models and adjusting for demographic, socioeconomic, and clinical variables.
Results:  Decedents with dual eligible insurance before or at the time of death were significantly more likely to die in a nursing home than to die in a hospital (relative risk ratio (RRR) 2.6; 95% CI, 1.9-3.6, p<0.001). 
Those dying in a nursing home tended to be unpartnered (widowed, separated or divorced, never married), cognitively impaired or with dementia. Elderly Americans less likely to die in a nursing home were blacks and Hispanics, individuals with cancer, and those with the highest wealth.
Conclusions:  Dual eligible patients are substantially more likely to die in a nursing home than a hospital, and therefore may miss out on valuable services at the end of life, including hospice care. This study may have several implications for current proposed Medicare policy changes to allow patients access to both curative care and hospice care at the same time. 

Lauren B. Smith, MD, Associate Professor, Department of Pathology/Ginny Sheffield, UM Medical Student (M3): "Special treatment for the VIP patient:  Is it ethical?  Is it dangerous?"


The care of VIP patients is often prioritized at medical centers and this prioritization may lead to disparate access to care and patient safety issues. VIP patients may be donors, celebrities, or other physicians. Allowing VIP patients access to earlier care or “special treatment” not only raises social justice issues, but also has been shown to lead to medical error and suboptimal treatment. Ethical considerations will be discussed and recommendations will be presented.

Naomi Laventhal, MD, MA, Assistant Professor, Department of Pediatrics and Communicable Diseases: "Roman Charity Redux: The Moral Obligations of the Breastfeeding Physician"


Female physicians must often reconcile the seemingly contradictory goals of valuing the health and well-being of their patients above all else, and actively mothering young children. One of the fundamental ethical precepts in medicine is for the physician to put the best interests of her patient ahead of her own.  For example the Fellowship Pledge of the American College of Surgeons states, “I pledge . . . to place the welfare and the rights of my patient above all else.” The challenge of weighing the needs of one’s own children against those of a patient is painfully acute for the breastfeeding physician. Is it ethically permissible to leave a busy clinic - or a patient in the under anesthesia in the operating room - in order to express breastmilk? Pragmatic strategies, such as mandates for appropriate space and time to pump, offer modest gains. However, we will suggest the need to re-envision the concept of “patient-first”, which is a vestige of the patriarchal hegemony that gave rise to our modern medical ethos, whereby nursing mothers are highly disadvantaged and virtually unable to reach the highest moral ideals of the profession.  Is the “right” to breastfeed absolute, or if should it be superseded by the needs of the patient? We will explore whether this issue is deeply personal, to be reconciled by affected individuals, or warrants an “outside-in” approach in which  physicians and bioethicists collectively and more philosophically consider whether and how to support women who choose to work and breastfeed.

Archana Bharadwaj, Graduate Student, UM School of Public Health: "Patient understanding and satisfaction regarding the clinical use of whole genome sequencing: Findings from the MedSeq Project"


Background: The expanded use of Whole Genome Sequencing (WGS) has generated excitement due its potential to tailor medical treatment. However, clinical use of WGS poses challenges for informed consent and disclosure of results. Few empirical studies have examined patients’ understanding of and satisfaction with the clinical communication of WGS results.
Methods: The MedSeq Project is a randomized clinical trial examining the impacts of WGS in primary care and cardiology. We analyzed survey data from patients’ initial enrollment and at multiple time points following physician disclosure of results. Domains of interest included understanding of informed consent, subjective understanding, satisfaction with communication of results, and decisional regret.
Results: Survey responses were provided by 202 participants (mean age = 55 years; 51% male; 80% college graduates). At enrollment, participants understood the majority of key facts about the study (mean = 19.6 / 22 items answered correctly), although some incorrectly answered items addressing results to be returned (e.g., 18% believed they would receive their entire DNA sequence. Higher informed consent knowledge scores were associated with female gender and higher genomic knowledge, subjective numeracy, and education levels (all p < .05). After results disclosure, participants had low scores of decisional regret regarding study participation; they also reported high levels of satisfaction with their physicians’ disclosure of results (mean = 5.9 on a 6-point scale), although ~20% of participants reported receiving “too much” information. Satisfaction with communication did not vary by participants’ demographics or other characteristics (e.g. genomic knowledge).
Conclusions: This study suggests that the intervention was well understood by patients, with low levels of decisional regret and high satisfaction with communication. Future research will need to examine these issues in more diverse samples, where misconceptions about the clinical WGS and concerns about information overload may be magnified.

Kayte Spector-Bagdady, JD, MBioethics, CBSSM Postdoctoral Research Fellow: "Direct‐to‐Consumer Biobanking"


23andMe is back on the market as the first direct‐to‐consumer genetic testing company that “includes reports that meet Food and Drug Administration standards for being clinically and scientifically valid.” Its current product includes 36 health‐related carrier‐status reports and consumers’ raw genetic data. But while its front‐end product is selling individual genetic tests online, its back‐end business model is amassing one of the largest privately owned genetic databases in the world.
This article argues that as the Department of Health and Human Services revises its regulation of research with human subjects as well as its proposal to exempt autosomal recessive carrier screens from premarket authorization it should contemplate the intersection of these areas of rulemaking—and consider how enhancing the security of federally funded research but loosening private access to biospecimens will drive more research into the private sector and result in less, not more, protection for human subjects.

Panel Presentation (Susan Goold, MD, MHSA, MA & colleagues): "Community engagement in setting research priorities: Representation, Participation and Evaluation"


We describe a 5-year project that engaged minority and underserved communities throughout the state of Michigan in deliberations about health research priorities to increase community voice in how limited health research resources are allocated. DECIDERS (Deliberative Engagement of Communities in DEcisions about Research Spending) formed a state-wide Steering Committee (SC) to develop a version of the deliberative exercise CHAT for health research priorities, then convened 47 groups to evaluate the tool and describe community research priorities.
Facilitators: Susan Goold and Zachary Rowe, Co-Directors
Panelists: Karen Calhoun, Charo Ledon, Esther Onaga, Lisa Szymecko

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