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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.

2017 Bishop Lecture featuring Norman Daniels, PhD

Tue, April 25, 2017, 11:15am
Location: 
Great Lakes Room, Palmer Commons, 100 Washtenaw Ave, Ann Arbor, MI 48109

The 2017 Bishop Lecture in Bioethics was presented by Norman Daniels, PhD, Mary B Saltonstall Professor and Professor of Ethics and Population Health in the Department of Global Health and Population at Harvard School of Public Health. Dr. Daniels will present a talk entitled, "Universal Access vs. Universal Coverage: Two models of what we should aim for." The Bishop Lecture served as the keynote address during the CBSSM Research Colloquium.

Abstract: We contrast two models of health care insurance, the Universal Coverage model underlying the Affordable Care Act and the Universal Access model underlying the (now withdrawn) American Health Care Act. Our goal is to evaluate the strongest argument for the Universal Access model. That model suggests that if people have real choices about health care insurance, some will buy it and some will not, and no one should be mandated to buy it. We argue that the Universal Access model presupposes that people can afford insurance, and that means subsidizing it for millions of people as the Universal Coverage model underlying the ACA does. These costs aside, the strongest argument for the Universal Access model is that giving people true choice may make the population level of well-being higher. Some people will have other priorities that they prefer to pursue, especially if they can free ride by enjoying the benefits of a system that provides health care without their contributing to it. If the additional costs that third parties have to pay as a result of the increase in real choice are significant, then the strongest argument for Universal access fails: the benefits of choosing not to be insured are outweighed by the imposed costs on others from these choices.

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.

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 Associate 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

The Institute for Healthcare Policy and Innovation is sponsoring a pilot R01 Boot Camp program in conjunction with the Medical School's "Mentored Research Academy: R01 Boot Camp." Seven junior faculty were selected to be coached by two mentors during the 12-month program. Sarah Hawley (Dept. of Internal Medicine) and Mark Igen (Dept. of Psychiatry) are serving as mentors.

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

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

J. Scott Roberts, PhD, received an R01 grant from NHGRI for a project that will describe the characteristics of consumers of DTC genetic services and to evaluate the psychological and behavioral impact of these services.

J. Scott Roberts, PhD, received an R01 award from NHGRI for a multi-site, randomized controlled clinical trial to examine the impact and efficacy of a genetic risk assessment program that educates people with mild cognitive impairment about their chances of developing Alzheimer's disease.

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

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