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CBSSM Colloquium 2016-- call for abstracts

2016 CBSSM Research Colloquium – University of Michigan

 

Call for Abstracts

 

The Center for Bioethics and Social Sciences in Medicine (CBSSM) Research Colloquium will be held Wednesday, April 27, 2016 at the Founders Room, Alumni Center, 200 Fletcher Street, Ann Arbor, MI 48109.

The CBSSM Research Colloquium will feature the Bishop Lecture in Bioethics as the keynote address.  This year CBSSM is delighted to announce that William Dale, MD, PhD will present the Bishop Lecture with a talk entitled: "Why Do We So Often Overtreat, Undertreat, and Mistreat Older Adults with Cancer?"

William Dale, MD, PhD is Associate Professor of Medicine and Chief, Section of Geriatrics & Palliative Medicine & Director, SOCARE Clinic at the University of Chicago. A geriatrician with a doctorate in health policy and extensive experience in oncology, Dr. Dale has devoted his career to the care of older adults with cancer -- particularly prostate cancer. Dr. Dale has a special interest in the identification and treatment of vulnerable older patients who have complex medical conditions, including cancer. He is actively researching the interactions of cancer therapies with changes associated with aging.
 

 

Abstract submissions are welcome from all disciplines both within UM, as well as other institutions. CBSSM is an interdisciplinary center focusing on bioethics and social sciences in medicine. Our research program areas of interest include:

  • Clinical and Research Ethics - committed to empirical research in ethics (what some have called empirical ethics) by providing an evidence base for informed policy and practice.
  • Health Communication and Decision Making – using techniques from basic and applied research, determines the best practices for communicating health information to patients.
  • Medicine and Society - examines the way health care and bioethics are influenced by social structures and cultural ideas.
  • Health, Justice, and Community - aims to improve knowledge, understanding and practice in resource allocation and distributive justice, ethics of health policy (public and private) and community engagement, with the overarching goal of improving health equity.
  • Genomics, Health, and Society - examines the ethical, social and behavioral implications of advances in genomics.

For more information about our program areas: http://cbssm.med.umich.edu/


Submission Details: (Form is below)

  • Abstracts should contain a title, followed by the names and designations of all contributing authors and the contact details of the corresponding author.
  • Abstracts are to be a maximum of 300 words in length (exclusive of title and author information).
  • Presentations should last no more than 20 minutes, with an additional 5 minutes for questions.  The total time allotted is therefore 25 minutes per presentation. 
  • Abstracts should be submitted on the attached Abstract Submission form.  Submit abstracts via email to Kerry Ryan, kryanz@med.umich.edu. If you have questions about the abstract, please contact CBSSM at 734-615-8377 or email Kerry Ryan.
  • Deadline for abstract submission is Friday, March 11, 2016.
  • Notification:  Applicants will be notified by Friday, March 25, 2016.


Tentative Schedule for the Colloquium:


9:00-10:30 Presentations
10:45-12:00 Bishop Lecture:  William Dale, MD, PhD
12:00-1:15 Lunch
1:15-4:30 Presentations

Click here for Abstract Submission Form.

Funded by: NIH

Funding Years: 2016-2021

 

There is a fundamental gap in understanding how Mild Cognitive Impairment (MCI) influences treatment and Decision Making for serious illnesses, like Cardiovascular disease (CVD), in older patients. Poor understanding of Clinical Decision Making is a critical barrier to the design of interventions to improve the quality and outcomes of CVD care of in older patients with MCI. The long-term goal of this research is to develop, test, and disseminate interventions aimed to improve the quality and outcomes of CVD care and to reduce CVD-related disability in older Americans with MCI. The objective of this application is to determine the extent to which people with MCI are receiving sub-standard care for the two most common CVD events, Acute myocardial infarction (AMI) and acute ischemic stroke, increasing the chance of mortality and morbidity in a population with otherwise good quality of life, and to determine how MCI influences patient preferences and physician recommendations for treatment. AMI and acute ischemic stroke are excellent models of serious, acute illnesses with a wide range of effective therapies for acute management, Rehabilitation, and secondary prevention. Our central hypothesis is that older Adults with MCI are undertreated for CVD because patients and physicians overestimate their risk of dementia and underestimate their risk of CVD. This hypothesis has been formulated on the basis of preliminary data from the applicants' pilot research. The rationale for the proposed research is that understanding how patient preferences and physician recommendations contribute to underuse of CVD treatments in patients with MCI has the potential to translate into targeted interventions aimed to improve the quality and outcomes of care, resulting in new and innovative approaches to the treatment of CVD and other serious, acute illnesses in Adults with MCI. Guided by strong preliminary data, this hypothesis will be tested by pursuing two specific aims: 1) Compare AMI and stroke treatments between MCI patients and cognitively normal patients and explore differences in Clinical outcomes associated with treatment differences; and 2) Determine the influence of MCI on patient and surrogate preferences and physician recommendations for AMI and stroke treatment. Under the first aim, a health services research approach- shown to be feasible in the applicants' hands-will be used to quantify the extent and outcomes of treatment differences for AMI and acute ischemic stroke in older patients with MCI. Under the second aim, a multi-center, mixed-methods approach and a national physician survey, which also has been proven as feasible in the applicants' hands, will be used to determine the influence of MCI on patient preferences and physician recommendations for AMI and stroke treatment. This research proposal is innovative because it represents a new and substantially different way of addressing the important public health problem of enhancing the health of older Adults by determining the extent and causes of underuse of effective CVD treatments in those with MCI. The proposed research is significant because it is expected to vertically advance and expand understanding of how MCI influences treatment and Decision Making for AMI and ischemic stroke in older patients. Ultimately, such knowledge has the potential to inform the development of targeted interventions that will help to improve the quality and outcomes of CVD care and to reduce CVD-related disability in older Americans.

PI: Deborah Levine

CO(s): Darin Zahuranec, MD & Ken Lenga, MD. PhD.

2017 CBSSM Research Colloquium and Bishop Lecture (Norman Daniels, PhD)

Tue, April 25, 2017, 8:30am
Location: 
Great Lakes Room, Palmer Commons, 100 Washtenaw Ave, Ann Arbor, MI 48109

The Center for Bioethics and Social Sciences in Medicine (CBSSM) Research Colloquium was held Tuesday, April 25, 2017 at the Great Lakes Room, Palmer Commons, 100 Washtenaw Ave, Ann Arbor, MI 48109.

The CBSSM Research Colloquium featured the Bishop Lecture in Bioethics as the keynote address.  Norman Daniels, PhD presented the Bishop Lecture with a talk entitled: “Universal Access vs Universal Coverage: Two models of what we should aim for."

Norman Daniels, PhD is Mary B. Saltonstall Professor of Population Ethics and Professor of Ethics and Population Health in the Department of Global Health and Population at the Harvard School of Public Health. Formerly chair of the Philosophy Department at Tufts University, his most recent books include Just Health: Meeting Health Needs Fairly (Cambridge, 2008); Setting Limits Fairly: Learning to Share Resources for Health, 2nd edition, (Oxford, 2008); From Chance to Choice: Genetics and Justice (2000); Is Inequality Bad for Our Health? (2000); and Identified versus Statistical Lives (Oxford 2015). He has published 200 peer-reviewed articles and as many book chapters, editorials, and book reviews. His research is on justice and health policy, including priority setting in health systems, fairness and health systems reform, health inequalities, and intergenerational justice. A member of the IOM, a Fellow of the Hastings Center, and formerly on the ethics advisory boards of the CDC and the CIHR, he directs the Ethics concentration of the Health Policy PhD at Harvard and recently won the Everett Mendelsohn Award for mentoring graduate students.

2017 Colloquium Schedule:

  • 8:30     Check in, refreshments
  • 9:05     Welcome
  • 9:10     Presentation 1: “Setting priorities for Medicaid: The views of minority and underserved communities” Susan Goold, MD, MHSA, MA & Zachary Rowe, Executive Director, Friends of Parkside
  • 9:35     Presentation 2: ““How Acceptable Is Paternalism? A Survey-Based Study of Clinician and Non-clinician Opinions on Decision Making After Life Threatening Stroke” Kunal Bailoor, MD Candidate
  • 10:00   Medical Student in Ethics Award
  • 10:10   Presentation 3: “Ethical Challenges Faced by Providers in Pediatric Death: A Qualitative Thematic Analysis” Stephanie Kukora, MD
  • 10:35   Presentation 4: “Capacity for Preferences:  An overlooked criterion for resolving ethical dilemmas with incapacitated patients” Jason Wasserman, PhD & Mark Navin, PhD
  • 11:00   Break
  • 11:15  Bishop Lecture: Norman Daniels, PhD
  • 12:45  Lunch

How would you adapt? (Nov-05)

Could you cope and find happiness if you were living with paraplegia? Think about what it would be like to have paraplegia and to imagine the impact of this disability on your life. Although some aspects of your life will become more difficult, there are ways to make your daily life a little easier.

List something that would help you to adapt physically if you had paraplegia. (For example, if you lost your eyesight, you could learn Braille, and/or use a cane). Just as there are ways to help you to adapt physically to paraplegia, there are also ways to help handle the immediate and long-term emotional reactions. List a strategy that you would use to emotionally cope with having paraplegia.

Please think about the two most upsetting things about developing paraplegia. Do you think these two things would become more or less upsetting over time?

  • More upsetting over time
  • Less upsetting over time
  • Equally upsetting over time

Please rate paraplegia on a scale from 0 to 100, where 0=quality of life as bad as death and 100=quality of life as good as perfect health.

How do your answers compare?

Those who were given the adaptation exercise rated paraplegia much higher, 62. That means considering adaption tends to have people look more favorably on paraplegia than they otherwise would. For most people, the adaptation exercise resulted in higher ratings. Let's take a closer look at the actual study and explore the importance of considering adaptation.

A discrepancy in perceptions of quality of life

When people first think about a disability, it might seem pretty catastrophic. At first glance, you might think that people living with paraplegia must be miserable. Patients who actually have paraplegia, however, report their quality of life to be significantly better than the public estimates that it would be. It appears, then, that there is a discrepancy between the self-rated quality of life of people with paraplegia, and healthy people's estimates of what their quality of life would be if they had this condition.

Why this discrepancy?

CBDSM director Peter Ubel teamed up with researchers Christopher Jepson and George Loewenstein to conduct a series of studies that aimed to explain why this discrepancy exists. Past research has suggested that patients do not overestimate their good mood, which led the researchers to hypothesize that, in fact, non-patients truly underestimate the quality of life experienced by people with disabilities. The researchers speculated about two explanations that could account for this underestimation. One possibility is that non-patients may be subject to a focusing illusion. That is, they might fail to appreciate that not all life domains or life events will be affected by the disability. Another possibility is that non-patients may be failing to consider adaptation, unable to realize how their feelings and their ability to cope will change over time.

In one study, each subject received one of several defocusing tasks in addition to rating paraplegia. For example, one of these tasks asked subjects to rate how much better or worse their life would be with regards to eight specific life events (e.g., visiting with friends). Another task asked subjects to think of five events that took up the largest amount of their time the preceding day and to rate how much better or worse these events would be if they had paraplegia. In a second study, subjects received one of several adaptation exercise in addition to rating paraplegia. One of these was similar to what you read on the previous page, although more extensive. Another had subjects consider their quality of life both 1 month and 5 years after developing paraplegia. In both studies, sujects rated paraplegia either before and after or only after completing an intervention.

The researchers found that none of the defocusing tasks had any effect on ratings of paraplegia. In fact, these tasks actually caused many participants to give lower ratings than they would have otherwise. All of the adaptation exercises, on the other hand, increased subjects' ratings of paraplegia. Taken together, these results support that the tendency of nonpatients to underestimate the quality of life associated with disabilities is not the result of a focusing illusion, but rather the result of failure to consider adaptation.

Read the article:

Disability and sunshine: Can predictions be improved by drawing attention to focusing illusions or emotional adaptation?
Ubel PA, Jepson C, Loewenstein G. American Journal of Psychiatry 2005;11:111-123.

The Importance of First Impressions (Jun-05)

How do your risk estimate and your actual level of risk impact your anxiety? Please answer the following question to the best of your ability:

What is the chance that the average woman will develop breast cancer in her lifetime?

The average lifetime chance of developing breast cancer is actually 13%.

How does this risk of breast cancer (13% or 13 out of 100 women) strike you?
 
As an extremely low risk 1       2       3       4       5        6        7        8       9       10 As an extremely high risk
 

How do your answers compare?

Making a risk estimate can change the feel of the actual risk

CBDSM investigators Angela Fagerlin, Brian Zikmund-Fisher, and Peter Ubel designed a study to test whether people react differently to risk information after they have been asked to estimate the risks. In this study, half the sample first estimated the average woman's risk of breast cancer (just as you did previously), while the other half made no such estimate. All subjects were then shown the actual risk information and indicated how the risk made them feel and gave their impression of the size of the risk. The graph below shows what they found:

 

As shown in the graph above, subjects who first made an estimated risk reported significantly more relief than those in the no estimate group. In contrast, subjects in the no estimate group showed significantly greater anxiety. Also, women in the estimate group tended to view the risk as low, whereas those in the no estimate group tended to view the risk as high.

So what's responsible for these findings? On average, those in the estimate group guessed that 46% of women will develop breast cancer at some point in their lives, which is a fairly large overestimate of the actual risk. It appears, then, that this overestimate makes the 13% figure feel relatively low, leading to a sense of relief when subjects find the risk isn't as bad as they had previously thought.

Why this finding is important

Clinical practice implications - The current research suggests that clinicians need to be very deliberate but very cautious in how they communicate risk information to their patients. These results argue that a physician should consider whether a person is likely to over-estimate their risk and whether they have an unreasonably high fear of cancer before having them make a risk estimation. For the average patient who would overestimate their risk, making a risk estimation may be harmful, leading them to be too relieved by the actual risk figure to take appropriate actions. On the other hand, if a patient has an unreasonably high fear of cancer, having them make such an estimate may actually be instrumental in decreasing their anxiety. Physicians may want to subtly inquire whether their patient is worried about her cancer risk or if she has any family history of cancer to address the latter type of patient.

Research implications - Many studies in cancer risk communication literature have asked participants at baseline about their perceived risk of developing specific cancers. Researchers then implement an intervention to "correct" baseline risk estimates. The current results suggest that measuring risk perceptions pre-intervention will influence people's subsequent reactions, making it difficult to discern whether it was the intervention that changed their attitudes or the pre-intervention risk estimate. Researchers testing out such interventions need to proceed with caution, and may need to add research arms of people who do not receive such pre-tests.

For more details: Fagerlin A, Zikmund-Fisher BJ, Ubel PA. How making a risk estimate can change the feel of that risk: shifting attitudes toward breast cancer risk in a general public survey. Patient Educ Couns. 2005 Jun;57(3):294-9.

 

 

2016 CBSSM Research Colloquium and Bishop Lecture (William Dale, MD, PhD)

Wed, April 27, 2016, 8:30am
Location: 
Founders Room, Alumni Center, 200 Fletcher St., Ann Arbor, MI

The Center for Bioethics and Social Sciences in Medicine (CBSSM) Research Colloquium was held Wednesday, April 27, 2016 at the Founders Room, Alumni Center, 200 Fletcher Street, Ann Arbor, MI 48109.

The CBSSM Research Colloquium featured the Bishop Lecture in Bioethics as the keynote address.  William Dale, MD, PhD presented the Bishop Lecture with a talk entitled: "Why Do We So Often Overtreat, Undertreat, and Mistreat Older Adults with Cancer?"

William Dale, MD, PhD is Associate Professor of Medicine and Chief, Section of Geriatrics & Palliative Medicine & Director, SOCARE Clinic at the University of Chicago. A geriatrician with a doctorate in health policy and extensive experience in oncology, Dr. Dale has devoted his career to the care of older adults with cancer -- particularly prostate cancer. Dr. Dale has a special interest in the identification and treatment of vulnerable older patients who have complex medical conditions, including cancer. He is actively researching the interactions of cancer therapies with changes associated with aging.

 

The 2016 Research Colloquium Presentation Schedule:

  •     8:30 AM -- Check in & refreshments
  •     9:00 AM -- Welcome
  •     9:05 AM -- Katrina Hauschildt, MA, PhD Candidate, Department of Sociology: "Language and Communication as Professionalization Projects in Clinical Ethics Consultation"
  •     9:30 AM -- Devan Stahl, PhD, Assistant Professor of Clinical Ethics, MSU: "Is there a right not to know?"
  •     9:55 AM -- Chithra Perumalswami, MD MSc, Robert Wood Johnson Foundation/Veterans Affairs Clinical Scholar: "Insurance Status of Elderly Americans and Location of Death"
  •     10:20 AM -- Break
  •     10:35 AM -- William Dale, MD, PhD, 2016 Bishop Lecture in Bioethics: "Why Do We So Often Overtreat, Undertreat, and Mistreat Older Adults with Cancer?"
  •     12:00 PM -- Lunch
  •     12:45 PM -- Lauren B. Smith, M.D., Associate Professor, Department of Pathology/Ginny Sheffield, UM Medical Student (M3): "Special treatment for the VIP patient:  Is it ethical?  Is it dangerous?"
  •     1:10 PM -- Naomi Laventhal, MD, MA, Assistant Professor, Department of Pediatrics and Communicable Diseases: "Roman Charity Redux: The Moral Obligations of the Breastfeeding Physician"
  •     1:35 PM -- 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"
  •     2:00 PM -- Kayte Spector-Bagdady, JD, MBioethics, CBSSM Postdoctoral Research Fellow: "Direct‐to‐Consumer Biobanking"
  •     2:25 PM -- Break
  •     2:40 PM --Panel Presentation (Susan Goold, MD, MHSA, MA & colleagues) : "Community engagement in setting research priorities: Representation, Participation and Evaluation"
    • Why (and how) was CBPR supported in DECIDERS?
    • How were communities represented in DECIDERS decision making?
    • Why and how was the partnership evaluated?
    • How were the 47 focus groups engaged in setting research priorities?

Should this patient get a liver transplant? (Nov-08)

There aren't enough donor organs to go around for patients who need aliver transplant. This sometimes forces doctors to make tough choices.If you were the doctor, how would you decide in the following scenario?  There aren't enough donor organs to go around for patients who need a liver transplant. This sometimes forces doctors to make tough choices. If you were the doctor, how would you decide in the following scenario?Suppose there is a person who develops acute liver failure (ALF). While waiting for a liver transplant, this person gets sicker and sicker. When an organ is finally available, the chance that this person will survive WITH a transplant is only 42% at five years after the transplant. Since the average survival for most patients who receive a liver transplant is 75% at five years, the doctor wonders if it would be better to save the liver for someone else. Two possible ethical principles may guide the doctor in making this decision. 

Using the principle of URGENCY, the doctor would give the first available organ to the sickest patient on the transplant waiting list, the ALF patient, because she/he is otherwise likely to die within a few days.

Using the principle of UTILITARIANISM, the doctor would try to maximize the quality and quantity of life of all the people on the transplant list. Let's say there are 25 other patients currently on the waiting list, and transplanting the ALF patient increases their risk of death by 2% each, for a cumulative harm of 50%. Since this harm of 50% is more than the benefit to the ALF patient (42%), the liver should be saved for someone else on the list.

A third possibility is for the doctor to weigh both URGENCY and UTILITARIANISM in making a decision about a transplant.

If you were the ALF patient's doctor, what would you base your decision about a transplant on?
 
  • URGENCY (sickest patient on the list gets preference)
  • UTILITARIANISM (maximize benefit for the entire waiting list)
  • A combination of URGENCY and UTILITARIANISM

How do your answers compare?

There's no absolutely right or wrong answer in this case—the choice depends on which of several competing ethical principles or which combination of principles you follow. In choosing a combination of URGENCY and UTILITARIANISM, you've decided to try to balance the needs of the sickest patient with the needs of all the people on the transplant waiting list.

CBDSM researcher Michael Volk, MD, is the lead author on a recent article that tackles difficult decisions like this one. Volk and his colleagues examined a method to incorporate competing ethical principles in a decision analysis of liver transplantation for a patient with ALF. Currently, liver transplantation in the United States is determined by the principle of “sickest first," with patients at highest risk for death on the waiting list receiving first priority. In other words, the principle of URGENCY is paramount. However, most experts agree that, given the limited supply of organs, there should be a cutoff for posttransplant survival below which transplantation is no longer justified.

Where does society draw this line? And what framework can we use for ethical guidance?

Decision analysis of resource allocation would utilize the principle of UTILITARIANISM, to maximize the broad social benefit. But surveys of the general public have shown that most people prefer to temper utilitarianism with other considerations, such as equal opportunity, racial equity, and personal responsibility. Another factor that might be considered is the principle of fair chances. This is the idea that patients who have not had a chance at a liver transplant should receive priority over those who have already had once chance at a transplant.

Volk constructed a mathematical model (Markov model) to test the use of competing ethical principles. First he compared the benefit of transplantation for a patient with ALF to the harm caused to other patients on the waiting list, to determine the lowest acceptable five-year survival rate for the transplanted ALF patient. He found that giving a liver to the ALF patient resulted in harms to the others on the waiting list that cumulatively outweighed the benefit of transplantation for the ALF patient. That is, using UTILITARIANISM as the sole guiding ethical principle gave a clear threshold for the transplant decision: if the ALF patient did not have a five-year survival rate of at least 48%, she/he should not receive a transplant under this principle.

But UTILITARIANISM is not always the sole guiding ethical principle. When Volk adjusted the model to incorporate UTILITARIANISM, URGENCY, and other ethical principles such as fair chances, he got different thresholds. Depending on the combination of ethical principles used, Volk and his colleagues have shown that the threshold for an acceptable posttransplant survival at five years for the ALF patient would range from 25% to 56%.

The authors of this study conclude:

"Our model is an improvement over clinical judgment for several reasons. First, the complexity of the various competing risks makes clinical decision making challenging without some form of quantitative synthesis such as decision analysis. Second, a systematic approach helps ensure that all patients are treated equally. Most important, this study provides moral guidance for physicians who must simultaneously act as patient advocates and as stewards of scarce societal resources."

Volk ML, Lok ASF, Ubel PA, Vijan S, Beyond utilitarianism: A method for analyzing competing ethical principles in a decision analysis of liver transplantation, Med Decis Making 2008;28, 763-772.

Online: http://mdm.sagepub.com/cgi/content/abstract/28/5/763

More information:

Beyond utilitarianism: A method for analyzing competing ethical principles in a decision analysis of liver transplantation.
Volk M, Lok AS, Ubel PA, Vijan S. Medical Decision Making 2008;28(5):763-772.

 

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.

Supporting information for: 2012 CBSSM Research Colloquium

Making a baby in the 21st century: An updated user manual

Presenting author: Melissa Constantine, PhD, Postdoctoral Research Fellow, CBSSM

Genetic testing has had a major role in prenatal care for decades.  Aneuploidy screening tests use non-invasive measurements of maternal serum markers to indicate whether a fetus is at increased risk for Down syndrome (trisomy 21) and Edward syndrome (trisomy 18), chromosomal abnormalities for which there are no curative or interventional treatments.  Prenatal screening is often a starting point on a pathway of decision making regarding invasive testing – with associated non-negligible miscarriage risks – and the termination of pregnancy.  As such, decisions to accept or refuse prenatal screening are preference sensitive and patient informed consent or informed refusal is warranted.

In the last year, new methods of genetic analysis for fetal diagnosis for multiple conditions have been introduced for clinical use, and the array of detectable fetal conditions is expanding.  Clinically, the new methods substantially improve on current diagnostic protocols; they are non-invasive, safe, easy to use, have sensitivity and specificity approaching 100% and can be administered as early as 7-10 weeks gestation.  Yet the uptake of a prenatal diagnostic testing for genetic conditions will continue to be a value-laden, preference sensitive choice and the need for informed consent will remain.

Ostensibly, the purpose of offering testing and the subsequent decision is to increase a woman’s control in her reproductive choices.  Some characteristics of the new testing technologies, such as earlier, confirmatory diagnosis, may enhance this control, although research on the process and experience of decision making for prenatal testing has consistently identified several aspects of current testing protocols that actually diminish control and obfuscate the perception of choice.  This presentation will explore how the clinical integration of the new genetic tests may mitigate, or exacerbate, women’s control in decision making and choice for prenatal diagnosis.

Dr. Melissa Constantine earned her Ph.D. in Health Service Research from the University of Minnesota and is currently a Postdoctoral Research Fellow at the Center for Bioethics and Social Sciences in Medicine at the University of Michigan.  Dr. Constantine’s work in measurement and psychometrics includes development and validation of health-related scales such as the Pelvic Organ Prolapse and Incontinence Sexual Questionnaire (PISQ-IR).  Her research interests focus on the ethical and social implications of the clinical integration of prenatal genetic tests.

 

Using community-based participatory research and user-centered design approaches in developing an interactive diabetes decision aid

Presenting authors: Vida A. Henderson, PharmD, MPH, MFA, Center for Health Communications Research; and Deliana Ilarraza

Co-authors: Kathryn LC Barr, MPH; Lawrence An, MD; William Newhouse; Michele Heisler, MD, MPH

Background: Together, community-based participatory research (CBPR), user-centered design (UCD) and health information technology (HIT) offer promising approaches to improve health disparities.

Objectives: This presentation will describe the application of CBPR and UCD principles to the development of iDecide/Decido, an interactive, tailored, web-based decision aid delivered by community health workers (CHWs) to African-American and Latino participants with diabetes in Southwest and Eastside Detroit. The decision aid is offered in English or Spanish and is delivered on an iPad in participants’ homes.

Methods: The overlapping principles of CBPR and UCD used to develop iDecide/Decido include: a community or user-focused approach; equitable academic and community partnership in all study phases; an iterative development process that relies on input from all stakeholders; and a program experience that is specified, adapted, and implemented with the target community.

Results: Collaboration between community members, researchers, and developers are especially evident in the program’s: design concept, animations, pictographs, issue cards, goal setting, tailoring, and additional CHW tools.

Conclusions:  Applying the principles of CBPR and UCD can be successfully employed in developing health information tools that are easy to use and understand, interactive, and target health disparities.

Vida Henderson, PharmD, MPH, MFA, currently works with the behavioral science team at the Center for Health Communications Research where she writes and tests tailored content for multi-media health behavior interventions. She has worked as a clinical pharmacist providing health education and medication counseling to low-income communities; and she has served as a faculty member at Xavier University of Louisiana College of Pharmacy in New Orleans.  Vida has recently received a Master of Public Health degree in Health Behavior and Health Education from the University of Michigan. Her research interests include health communications, spirituality and health, and health disparities.

Deliana Ilarraza is a Community Health Worker for the Community Health and Social Services Center (CHASS)/REACH Detroit Partnership.  Deliana works with community organizations, schools and churches, establishing sites for physical activity classes and conducting diabetes awareness and prevention programs and studies.  She has worked with the National Kidney Foundation of Michigan, the Adolescent Diabetes Health Literacy Study, and the Journey to Health diabetes management and empowerment program, facilitating workshops, teaching curricula, and evaluation.

 

Resident attitudes toward ethical and medical decision-making for neonates born at the limit of viability

Presenting author: Naomi Laventhal, MD, MA, Clinical Lecturer, Department of Pediatrics and Communicable Diseases, CBSSM faculty

Co-author: Stephanie Kukora, MD

Background: Existing guidelines call for consistent resuscitation practices for extremely preterm infants based on epidemiologic data, but appropriate frameworks for value-driven decision-making in this context are still debated. Neonatologists’ attitudes are well-studied, but those of resident physicians are poorly understood.

Objectives: To describe residents’ knowledge of our practices, attitudes toward gestational age (GA) based resuscitation thresholds, and ethically relevant considerations for decision-making at the margin of gestational viability.

Methods: We surveyed our pediatric residents anonymously, asking them to identify current practices and ideal GA thresholds for offering and insisting on resuscitation, and the importance of contributing factors in decision-making for extremely preterm infants. Results: Response rate 61% (n =36).  Many (62%) residents correctly identified 23 weeks as the lower threshold for resuscitation in our NICU (range 21 - 24), despite finding our practices inconsistent (84%) and unclear (89%). Fewer (21%) correctly identified 24 weeks as the latest GA that parents may refuse resuscitation (range 23 - 42, 32% 25 weeks, 21% 26 weeks, 16% >26 weeks). Most disagreed with our current practices, identifying a preferred older GA for the lower threshold: 48% at 24 weeks, and 18% at 25 weeks (range 23-27). Most thought the upper threshold for elective resuscitation was too low, with 24% and 28% indicating 25 and 26 weeks, respectively, and 33% ≥28 weeks (range 24-40).  Compared to current considerations, they reported scientific evidence to be undervalued (p<.0001), and attendings’ personal beliefs to be overvalued (p<.0001). Responses trended toward family social and financial situations being undervalued. 

Conclusions: Our residents recognize decision-making for extremely preterm infants that is supported by known epidemiology, but attribute it to physicians’ personal beliefs, rather than scientific evidence. This suggests educational deficits, and a need for further study in a larger sample.  Preferences for a higher GA threshold for initiating resuscitation and a wider GA range in which parents may refuse it may reflect disproportionate pessimism about preterm infants.

Dr. Naomi Laventhal joined U-M in 2009, after completing her residency in pediatrics, fellowships in neonatology and clinical medical ethics, and a master’s degree in public policy at the University of Chicago.  In the Brandon Neonatal Intensive Care Unit at C.S. Mott Children’s Hospital she cares for critically ill newborns, provides prenatal consultation for parents expecting to deliver premature infants, and teaches neonatal-perinatal medicine and bioethics to residents and medical students.  Her research is in neonatal clinical ethics, and is currently focused on decision making for infants born at the margin of gestational viability.   Dr. Kukora is a resident in Pediatrics, having completed her MD at the University of Texas Southwestern Medical School.

 

Distrust of pediatricians’ sleep advice: Focus group results from the Project for African American Infant Safety

Presenting author:  Kathryn L. Moseley, MD, MPH, Assistant Professor, Department of Pediatrics and Communicable Diseases, CBSSM faculty

Co-author: Jennifer C. Sanchez, MPH

Background: Sudden Infant Death Syndrome (SIDS) is the number one cause of death for infants from birth to one year of age and can be reduced by placing the infant in the supine sleeping position. Although the number of SIDS-related deaths is decreasing, it still remains a significant issue, especially in the African American population where the supine sleep position is used less.  PrAAIS (Project for African American Infant Safety) is a randomized controlled trial promoting infant supine sleep among African American parents of newborns in Detroit, Michigan through the creation and distribution of tailored health educational materials.



Methods: We conducted six exploratory focus groups with a total of 29 African American parents of young infants to identify barriers and facilitators to infant supine sleep. 

Results: A prominent barrier that emerged during data analysis was distrust of physicians’ advice about supine sleep. This distrust stemmed from: a) skepticism of the validity of information provided by childless pediatricians, b) the paternalistic instructional style of pediatricians’ sleep advice (“you must do this”), and c), the frequent changes in sleep position recommendations that are not consistent with mothers’ lived experience, where the only rationale provided is that “studies show…”

Discussion: Parental distrust is not surprising, given these assessments.  Our results suggest that physicians may become more trustworthy sources of information about supine sleep if they: a) openly acknowledge parental confusion about the guidelines, b) provide concrete advice on methods to successfully achieve infant supine sleep in a more participatory manner, and c) place the danger of ignoring the guidelines in context through a discussion of both the relative and absolute risk to their infant of dying from SIDS or suffocation.

Dr. Kathryn Moseley is a clinical bioethicist as well as board-certified pediatrician and neonatologist.  For eleven years, Dr. Moseley was the Director of Bioethics for the Henry Ford Health System in Detroit, Michigan, overseeing a busy ethics consultation service.  She joined U-M in 2002 with a joint appointment in the Program in Bioethics and the Child Health Evaluation and Research Unit to conduct research on the racial differences in health care decision-making she discovered doing clinical ethics consultations and how those decisions are affected by culture and trust.  She recently received a grant from the NIH to conduct a 5-year trial of a culturally-tailored intervention to decrease the incidence of Sudden Infant Death Syndrome in the African American community.  She co-chairs the Pediatric Ethics Committee and directs the ethics consultation service at C.S. Mott Children’s Hospital.

 

What’s in a name? The effect of a disease label on parents’ decision to medicate a colicky infant

Presenting author: Laura D. Scherer, PhD, Postdoctoral Research Fellow, CBSSM and VA

Co-authors: Brian K. Zikmund-Fisher, PhD; Angela Fagerlin, PhD; Beth A. Tarini, MD

It is common for physicians to diagnose infants who have excessive regurgitation and associated crying with Gastroesophageal Reflux Disease (GERD).  From 1999-2004 there was a 7-fold increase in the use of prescription medications to treat GERD in infants <1 year old (Hassal, 2012).  However, clinical trials have shown that existing medications are no better than placebo in treating these symptoms (Orenstein et al., 2009) and the majority of infants grow out of this behavior without medical intervention.  Given this, it is unclear why medical treatment of GERD persists.  One possibility is that the way that physicians frame their assessment of the symptoms influences parents’ perceived need to medicate their child.  In the present study, we examined how a doctor’s explanation—in particular, the doctor’s use of the diagnostic label “GERD”—influences parents’ desire for medical interventions. To explore this question, we asked parents in the waiting room of a general pediatrics clinic to read a scenario (2x2 randomized design) in which they were asked to imagine they had an infant who cried and spit up excessively.  The scenario then described a pediatric appointment in which the infant either received a formal diagnosis of GERD, or not.  In addition, half of parents were explicitly told that existing medications are ineffective at treating the symptoms, or not.  Results showed that the presence of a GERD diagnosis made parents more interested in medicating their infant, even when they were explicitly told that the medications do not work.  Moreover, the GERD diagnosis made parents less likely to think that their infant would get better without medication, relative to parents who received no diagnosis.  In conclusion, physician labeling of normal infants as “diseased” may increase parents’ willingness to medicate their child.

Dr. Laura Scherer is a Postdoctoral Research Fellow at the VA Center for Clinical Management Research and the Center for Bioethics and Social Sciences in Medicine at the University of Michigan.  She received her PhD in Social Psychology from Washington University in St. Louis, and will soon be an Assistant Professor of Psychology and Health Sciences at the University of Missouri in Columbia.  Her interests include the impact of emotions and intuition on medical decision making, and the psychological phenomena that lead to medicalization and overtreatment.

 

Cracking the code: Ethical issues involved in the decision to undergo genetic testing

Presenting author: Lauren B. Smith, MD, Assistant Professor, Department of Pathology, CBSSM faculty

Advances in molecular diagnostics have led to the capability of sequencing an individual’s germline DNA or exome for as little as $1000. An ethical analysis and discussion of genetic testing, both historically and as it relates to this new technology, will be presented.  The discussion will include factors related to the decision to undergo testing, possible benefits and harms, and issues surrounding research protocols and commercial testing services.  The discussion will include an overview of testing for Huntington disease, breast-ovarian cancer syndromes, and Alzheimer’s disease as illustrative examples.

Dr. Lauren Smith is an Assistant Professor in the Department of Pathology at the University of Michigan, specializing in hematopathology.  She has been a member of the University of Michigan Adult Ethics Committee since 2005 and also serves as a member of the Michigan State Medical Society Ethics Committee.  Her research interests include ethical issues in clinical medicine and pathology.

 

The myth of individual risk    

Presenting author: Ralph Stern, MD, PhD, Clinical Assistant Professor, Department of Internal Medicine

Co-author: Zachary Goldberger, MD

Medical decision-making often relies upon clinical prediction models to estimate individual risk.  Morbidity and mortality predictions (e.g.  Framingham for ischemic heart disease in healthy patients or APACHE for mortality in critically ill patients) are often used for treatment decisions (e.g. statins, aspirin, hypoglycemic therapy).  As such, their prognostic value carries particular importance for shared decision-making with patients and their families.  However, it remains underappreciated that clinical prediction methods were developed to analyze disease in populations, not individuals.  The notion that such models can give individual patients a unique probability of a health outcome is highly debatable.  When the goal is allocating treatments to high risk subgroups to reduce costs, these models may be useful.  But when the goal is allocating treatments to high risk individuals, none of the models should be the sole basis for clinical decisions.

 Because risk cannot be measured in an individual, there is no way to experimentally verify any of the individual predictions provided by a model.  This can only be achieved by assembling a group of patients similar to the individual in question.  That each of these groups may have a different risk means there is no such thing as individual risk, an issue identified by John Venn in 1866 and known as the reference class problem.  Different models may yield substantially different individual risk estimates.  This is an inherent limitation, which is not eliminated by inclusion of more risk factors in the model or other proposed solutions.

While these models are widely used, it remains unclear how best to apply them.  Clinicians who use these models to make patient care decisions need to be aware of their limitations. 

Dr. Ralph Stern is an Assistant Professor of Medicine in the divisions of Cardiovascular Medicine and Molecular Medicine and Genetics.  His clinical interests are hypertension and medical and cancer genetics.  His research interests include risk stratification and the clinical utility of new risk factors.

Dr. Zachary Goldberger is a 4th year cardiology fellow and Robert Wood Johnson Clinical Scholar.  His research interests center on antiarrhythmic therapy.  Specifically, he is interested in understanding the attitudes and experiences of patients receiving implantable cardioverter-defibrilators (ICDs), and creating a decision aid to enhance shared decision-making for patients receiving ICDs for primary prevention of sudden cardiac death.  He is also studying utilization of antiarrhythmic therapy and drug toxicity, as well as patterns of care in resuscitation during in-hospital cardiac arrest.  His teaching interests center on improving ECG literacy and cardiac physical examination skills in trainees.

 

The swinging gate: Genetic testing and ethical issues

Presenting author: Wendy R. Uhlmann, MS, CGC, Clinical Assistant Professor, Departments of Internal Medicine and Human Genetics

Advances in genetic testing have resulted in an exponential increase in the number of genetic tests that are available.  Given the rapid pace of genetic test introduction, few tests have practice guidelines.  As a result, healthcare professionals who order these tests and the genetic testing laboratories have gate-keeper roles with genetic testing.  Genetic tests, unlike most medical tests, present some unique considerations given the potential familial implications in addition to the fact that genetic testing is a moving target.  Communication of genetic information and genetic test results along with medical record documentation of this information raises several ethical and policy issues, including: Who needs to know?  What information should be communicated?  Who is obligated to inform whom?  What factors need to be considered in the communication of genetic information?  Cases from the University of Michigan Medical Genetics Clinic will be used to illustrate ethical issues that clinicians encounter with patients pre-testing and post-testing, including: competing obligations, testing children, carrier testing for rare autosomal recessive genetic conditions, predictive genetic testing and broader insurance issues.  Weighing risks and benefits and resolving ethical issues with genetic testing decisions and communication of test results involves consideration of the core ethical principles in addition to assessment of both professional and patient obligations.  Careful consideration is needed in weighing competing obligations.  Understanding ethical issues currently experience din genetics clinics will help guide the handling of similar and novel future challenges that will arise with advances in genetic testing and genomic medicine.

Wendy R. Uhlmann, MS, CGC, is the genetic counselor/clinic coordinator of the Medical Genetics Clinic at the University of Michigan.  She is a Clinical Assistant Professor in the Departments of Internal Medicine and Human Genetics and an executive faculty member of the genetic counseling training program.  Wendy Uhlmann is a past president of the National Society of Genetic Counselors and currently serves on the National Center for Biotechnology Information (NCBI) Board of Scientific Counselors (BOSC), Medical Genetics Working Group.

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