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Susan Goold is a newly elected Hastings Center Fellow. The Fellows are an elected association of researchers from around the world whose distinguished contributions in their fields have been influential in bioethics. They come from a wide range of disciplines, including medicine, nursing, the sciences, and law. For more information, visit the Hastings Center website.

On Thursday, March 22,3:30-4:45, at the School of Public Health (SPH I, Rm 1655), we are pleased to announce that Amy McGuire, JD, PhD, of Baylor College of Medicine will give a talk entitled, “Biobanking and Genomic Research: Ethical Challenges and Policy Implications." Dr. McGuire is Associate Professor of Medicine andMedical Ethics and Associate Director of Research at the Center for Medical Ethics and Health Policy at Baylor College of Medicine.  Her research focuses on legal and ethical issues in genomics.  She is currently studying participant attitudes toward genomic data sharing, investigators' practices and perspectives on the return of genetic research results, ethical issues in human microbiome research, and ethical and policy issues related to theclinical integration of genomics.  Her research is funded by the NIH-NHGRI and the Cancer Prevention and Research Institute of Texas.  The talk is co-sponsored by the School of Public Health and will be followed by a reception.

CBSSM recently hosted the 2014 Research Colloquium held Thursday, May 15, 2014 at the Vandenberg Meeting Hall (2nd floor), The Michigan League, 911 N. University Ave, Ann Arbor, MI 48109.

The CBSSM Research Colloquium featured the Bishop Lecture in Bioethics as the keynote address.  Myra Christopher presented the Bishop Lecture with a talk entitled: "The Moral Imperative to Transform the Way Pain is Perceived, Judged and Treated." Myra Christopher holds the Kathleen M. Foley Chair in Pain and Palliative Care at the Center for Practical Bioethics. The Bishop Lecture is made possible by a generous gift from the estate of Ronald C. and Nancy V. Bishop.

The 2014 Research Colloquium presenters included:

  • Andrew G. Shuman, MD, Assistant Professor, Department of Otolaryngology, University of Michigan: "When Not to Operate: The Dilemma of Surgical Unresectability"
  • Phoebe Danziger, MD, University of Michigan Medical School: "Beliefs, Biases, and Ethical Dilemmas in the Perinatal Counseling and Treatment of Severe Kidney Anomalies"
  • Kathryn L. Moseley, MD, MPH, Assistant Professor, Pediatrics and Communicable Diseases, University of Michigan: "Electronic Medical Records: Challenges for Clinical Ethics Consultation"
  • Helen Morgan, MD,  Department of Obstetrics and Gynecology, University of Michigan: "Academic Integrity in the Pre-Health Undergraduate Experience"
  • Tanner Caverly, MD, MPH, Health Services Research Fellow, Ann Arbor VA Medical Center and Clinical Lecturer, University of Michigan: "How Transparent are Cancer Screening & Prevention Guidelines about the Benefits and Harms of What They Recommend?"
  • Susan D. Goold, MD, MHSA, MA , Professor of Internal Medicine and Health Management and Policy, School of Public Health, University of Michigan: "Controlling Health Costs: Physician Responses to Patient Expectations for Medical Care"

H. Myra Kim, ScD

Faculty

H. Myra Kim is a Research Scientist at the Center for Statistical Consultation and Research and and Adjunct Professor at the Department of Biostatistics. She received her Sc.D. in Biostatistics from Harvard University in 1995 and worked at Brown University as an Assistant Professor from 1995 to 1997. She has worked at UM since 1997 and has collaborated with various researchers from around the UM community as well as from other universities.

Research Interests: 
Last Name: 
Kim

Wendy Uhlmann, MS, CGC

Faculty

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 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 previously served on the Board of Directors of the Genetic Alliance and as NSGC’s liaison to the National Advisory Council for Human Genome Research.

Last Name: 
Uhlmann

Timothy R. B. Johnson, MD

Faculty

Timothy R. B. Johnson, M.D. served as Chair of Obstetrics and Gynecology at the University of Michigan from 1993-2017.  He is Bates Professor of the Diseases of Women and Children; and also Arthur F. Thurnau Professor; Professor, Women’s Studies, and Research Professor, Center for Human Growth and Development.  His education and training have been at the University of Michigan, University of Virginia and Johns Hopkins.

Research Interests: 
Last Name: 
Johnson

Carl Schneider, JD

Faculty

Carl E. Schneider is the Chauncey Stillman Professor for Ethics, Morality, and the Practice of Law and is a Professor of Internal Medicine. He was educated at Harvard College and the University of Michigan Law School, where he was editor in chief of the Michigan Law Review. He served as law clerk to Judge Carl McGowan of the United States Court of Appeals for the District of Columbia Circuit and to Justice Potter Stewart of the United States Supreme Court. He became a member of the Law School faculty in 1981 and of the Medical School faculty in 1998. 

Last Name: 
Schneider

PIHCD: Sarah Alvarez

Thu, November 05, 2015, 2:00pm
Location: 
B004E NCRC Building 16

Sarah Alvarez, a fellow at Stanford and formerly of Michigan Radio, will  present her work on creating a news product that can meet the information needs of low-income news consumers. Specifically her focus is on how to use data to discover which issues or systems information gaps exist for low-income news consumers and once the gaps are identified how the information should be presented to help people understand the information and use it to make decisions.

If you plan to attend this meeting please e-mail Nicole Exe at nexe@umich.edu by Monday November 2. If you decide to attend after that date you are still welcome and do not need to e-mail.

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.

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