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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.

Bioethics Grand Rounds -Scott Grant MD, MBE

Wed, May 24, 2017, 12:00pm
Location: 
UH Ford Auditorium

Scott Grant, MD, MBE, University of Chicago: "Dealing with complications and poor outcomes and surgical futility"

Scott Grant, MD, MBE, University of Chicago

Abstract: Surgical complications are ubiquitous and effect all surgeons. This talk will review how surgical ethics is distinct from traditional medical ethics in that surgeons have a greater and more direct responsibility for the outcomes of their patients than medical doctors. It will review how surgery harms before healing and the importance of weighing risks and benefits in decision making. Ways of assessing perioperative risk and preventing complications will be reviewed. Strategies for coping with complications will be described. Human error theory and the "Swiss cheese" model of human error will briefly be discussed. The SPIKES protocol for breaking bad news will be reviewed. Different definitions of futility will be described. Various procedural approaches to futility disputes will be analyzed. The best tool in approaching challenging "futility" situations will be described - open and honest communication between the patient or surrogate and the physician.

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
Mon, June 11, 2018

A new study shows how to personalize the lung cancer screening decision for every patient. The results could help doctors fine-tune their advice to patients, so that it’s based not just on a patient’s individual lung cancer risk and the potential benefits and harms of screening, but also a likely range of patient attitudes about looking for problems and dealing with the consequences.

Published in the Annals of Internal Medicine, the study forms the backbone for new free online decision tools aimed at physicians and their teams, and at members of the public.

http://ihpi.umich.edu/news/scan-or-not-scan-research-shows-how-personali... tool for clinicians, called Lung Decision Precision, was designed by a University of Michigan and Veterans Affairs team to help clinicians talk with patients and their loved ones about whether to a lung CT scan might be a good idea for them.

The same team has also launched a website for patients and their loved ones, www.shouldiscreen.com, that gives easy-to-understand information about the positives and potential negatives of lung cancer screening, and allows individuals to calculate their personal risk of lung cancer.

Tanner Caverly, M.D., M.P.H., led the team that did the new computer-based simulation analysis using data from major studies of lung cancer screening, and national data on the potential screening population under the current guidelines.

Joel Howell, MD, PhD

Faculty

Joel D. Howell is a Professor at the University of Michigan in the departments of Internal Medicine (Medical School), Health Management and Policy (School of Public Health), and History (College of Literature, Science, and the Arts), as well as the Victor C. Vaughan Professor of the History of Medicine. He received his M.D. at the University of Chicago, and stayed at that institution for his internship and residency in internal medicine. At the University of Pennsylvania, he was a Robert Wood Johnson Clinical Scholar, and received his Ph.D. in the History and Sociology of Science.

Research Interests: 
Last Name: 
Howell

PIHCD: Michele Gornick

Wed, January 25, 2017, 4:00pm
Location: 
NCRC bldg 16 B001E

Michele Gornick/ Tolu Olorode will be seeking feedback on a draft of our survey for a project “Eliciting Veterans’ perspectives on informed consent processes for sharing big data”

Thu, April 04, 2013

Babies cry and spit up … and too often those common symptoms are labeled as disease, according to a new study conducted by U-M researchers. Frequent use of the GERD label can lead to overuse of medication. The study was published online today in the journal Pediatrics.

Stories have already been published by Reuters,  Yahoo News!MedPage TodayNPRMSN Healthy Living,  CBS News, and the Chicago Tribune, among others. Laura Scherer, PHD, Brian Zikmund-Fisher, PhD, Angela Fagerlin, PhD and Beth Tarini, MD are authors on this study.

Mon, June 23, 2014

Brian Zikmund-Fisher was interviewed by Reuters Health for the article "Shared decision making still lacking for cancer screening." He discusses his research and trade-offs in cancer screenings. "What this study does is it shows that despite all of the initiatives and the discussion of shared decision making that has been going on, we don't seem to be moving the needle very much," he states. 

His interview also received press in the Chicago Tribune and New York Daily News.

Naomi Laventhal, MD, MA

Faculty

Dr. Naomi T. Laventhal joined the University of Michigan in August 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. She is a Clinical Associate Professor in the Department of Pediatrics and Communicable Diseases in the Division of Neonatal-Perinatal Medicine, and in the Center for Bioethics and Social Sciences in Medicine (CBSSM).

Last Name: 
Laventhal

Andrew Shuman, MD

Faculty

Andrew G. Shuman, MD is an Assistant Professor in the Department of Otolaryngology - Head and Neck Surgery at the University of Michigan Medical School.  He is also the Chief of the ENT Section of the Surgery Service at the VA Ann Arbor Health System.  He is a service chief of the Clinical Ethics Service in the Center for Bioethics and Social Sciences in Medicine (CBSSM).  His current research interests explore ethical issues involved in caring for patients with head and neck cancer, and in managing clinical ethics consultations among patients with cancer.

Research Interests: 
Last Name: 
Shuman

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