Error message

The page you requested does not exist. For your convenience, a search was performed using the query news events press coverage 2014 11 21.

Page not found

You are here

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.

 

A New Drug for the New Year (Jan-04)

Out with the old drugs and in with the new! How is your doctor prescribing for you?

Imagine that you are a physician and your patient is a 55-year-old white male with high blood pressure. He has no other medical problems, is on no medications, and has completed a 1-year program of diet and exercise to control his condition, but his blood pressure remains elevated at 170/105 (140/90 is the definition of high blood pressure).

As his physician, you have to decide on a medication to prescribe him in order to lower his blood pressure. You have the following options to choose from:

Diuretics: Diuretics are medications that lower blood pressure by getting rid of excess fluid in your body, making it easier for your heart to pump. They were first introduced in the 1950s.

Beta-blockers: Beta-blockers are medications that lower blood pressure by helping the heart to relax and pump more effectively, and by also reducing heart rate. They were first introduced in the 1960s.

ACE inhibitors: Angiotensin converting enzyme (ACE) inhibitors are medications that lower blood pressure by widening blood vessels and increasing blood flow. They were first introduced in 1981.

Calcium channel blockers: Calcium channel blockers are medications that lower blood pressure by relaxing blood vessels, reducing the heart's workload, and increasing the amount of blood and oxygen that reach the heart. They were also first introduced in 1981.
 
What type of medication would you prescribe this patient?
 
  • A diuretic
  • A beta-blocker
  • An ACE inhibitor
  • A calcium channel blocker

How do you compare to the physicians surveyed?

Of the physicians surveyed, 18% chose the same medication as you did. 38% chose an ACE inhibitor, 29% chose a beta-blocker, and 11% chose a calcium channel blocker. Most physicians chose an ACE inhibitor, a newer type of medication, rather than beta-blockers or diuretics, which are older types of medication.

Why is this important? When asked how they made their decision, the majority of physicians believed that diuretics were less effective and that beta-blockers were less likely to be tolerated by a patient's body than the other medications. However, a number of important studies have shown that beta-blockers and diuretics are as effective at lowering blood pressure as newer medications like ACE inhibitors and calcium channel blockers. Studies have also shown that beta-blockers and diuretics are equally or even better tolerated than the newer types of medications. Yet, the use of beta-blockers and diuretics has declined steadily in the past 15 years in favor of the newer and more expensive types of medications.

Why do physicians believe these things when the studies say otherwise?

The answer to this question is not fully known. One possibility is that physicians may be prescribing newer medications because these are the medications actively promoted by pharmaceutical companies. By providing free samples of the newer medications for physicians to give to patients, these companies may be influencing which medications physicians actually decide to prescribe. To test this possibility, after physicians had decided between diuretics, beta-blockers, ACE inhibitors, and calcium channel blockers, they were asked if they ever provide their patients with free medication samples from these companies to treat their high blood pressure. It was found that physicians who used free samples were more likely to believe that ACE inhibitors are more effective. This isn't proof that physicians are influenced by pharmaceutical companies when prescribing medication for high blood pressure, but it does urge us to seriously consider if physicians may need to be re-educated about the effectiveness and tolerability of beta-blockers and diuretics.

For more information see:

Ubel, PA, Jepson, C, Asch, DA. Misperceptions about beta-blockers and diuretics. Journal of General Internal Medicine, 18, 977-983. 2003.

 

Give or take a few years (Feb-05)

A longer life may result from the amount of social support present in your life, but is the longevity due to giving or receiving that support?

Imagine that in your busy schedule each week, you typically at least have Wednesday and Saturday nights free as time to spend however you want. Recently, however, one of your close friends had her car break down and now she is wondering whether you would be willing to drive her to and from a yoga class on Wednesday nights for the next three weeks while the car is in the shop. She told you that the class is only about a 15 minute drive each way. She said that you shouldn't feel pressured, and she just thought she'd ask if you had the time to help her out.

Would you be willing to drive your friend to and from her yoga class for the next three weeks?
  • Yes, I'd take the time to help her out.
  • No, I'd keep my Wednesday nights free.
Do you think that helping out others could at all affect your health?
  • Yes
  • No

Giving vs. receiving: effects on mortality

A research team of investigators at the U of M Institute for Social Research teamed up with CBDSM investigator, Dylan Smith, to conduct a study investigating whether giving or receiving help affects longevity. The researchers noted that receiving social support is likely to be correlated with other aspects of close relationships, including the extent to which individuals give to one another. Based on this, they hypothesized that some of the benefits of social contact, sometimes attributed to receiving support from others, may instead be due to the act of giving support to others.

Using a sample of 423 married couples from the Detroit area, the investigators conducted face-to-face interviews over an 11-month period. The interviews assessed the amount of instrumental support respondents had given to and received from neighbors, friends, and relatives, as well as the amount of emotional support they had given to and received from their spouse. Instrumental support included things like helping with transportation, errands, and child care, whereas emotional support involved having open discussions with a spouse and feeling emotionally supported. Mortality was monitored over a 5-year period by checking daily obituaries and monthly death record tapes provided by the State of Michigan. To control for the possibility that any beneficial effects of giving support are due to a type of mental or physical robustness that underlies both giving and mortality risk, the investigators also measured a variety of demographic, health, and individual difference variables, including social contact and dependence on the spouse.

The investigators found that those who reported giving support to others had a reduced risk of mortality. This was true for both instrumental supoprt given to neighbors, friends, and relatives, and for emotional support given to a spouse. They also found that the relationship between receiving social support and mortality depended on other factors. Specifically, receiving emotional support appeared to reduce the risk of mortality when dependence on spouse, but not giving emotional support, was controlled. Receiving instrumental support from others actually increased the risk of mortality when giving support, but not dependence on spouse, was controlled.

What can we make of these findings?

It appears from these results that the benefits of social contact are mostly associated with giving rather than receiving. Measures that assess receiving alone may be imprecise, producing different results as a function of dependence and giving support.

Given the correlational nature of this study, it is not possible to determine conclusively that giving support accounts for the social benefit traditionally associated with receiving support. Nevertheless, the results of the present study should be considered a strong argument for the inclusion of measures of giving support in future studies of social support, and perhaps more importantly, researchers should be cautious of assuming that the benefits of social contact reside in receiving support.

It's true that when helping others out, you might have to give up some of your own time, but based on the above findings, it looks like in the long run you may end up ultimately gaining more time.

Read the article:

Providing social support may be more beneficial than receiving it: results from a prospective study of mortality.
Brown S, Nesse RM, Vinokur AD, Smith DM. Psychological Science 2003;14:320-327.

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.

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

Pages