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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.

Mon, January 06, 2014

Dr. Reshma Jagsi worked on a study detailing the decline of US research spending versus the increase in spending in Japan and China. In the UMHS article, she says, "The United States has long been a world leader in driving research and development in the biomedical science. It's important to maintain that leadership role because biomedical research has a number of long term downstream economic benefits, especially around job creation," 

Research Topics: 

Dr. Jason Karlawish, Professor of Medicine and Medical Ethics at the University of Pennsylvania, will discuss his forthcoming novel, "Open Wound: The Tragic Obsession of Dr. William Beaumont" on Thursday, October 20, 3-5 pm, at the Biomedical Research Science Building (BSRB), Room 1130.  "Open Wound" is a fictional account of true events along the early 19th century American frontier, tracing the relationship between Dr. William Beaumont and his illiterate French Canadian patient.  The young trapper sustains an injury that never heals, leaving a hole in his stomach that the curious doctor uses as a window both to understand the mysteries of digestion and to advance his career.  A reception will follow the talk, and books will be available for purchase on site from Nicola's Books.  The event is co-sponsored by the Center for Bioethics and Social Sciences in Medicine, the Center for the History of Medicine, and the University of Michigan Press.  Click here for more information about the book. 

Tue, September 20, 2011

The CBS News website recently featured 10 tips to make better decisions about cancer care from U-M’s Angela Fagerlin, Ph.D., associate professor of internal medicine. Below is an excerpt from the article:

Cancer is scary, and doctors sometimes sound as if they’re speaking a foreign language when talking about the disease and its treatment. But “people are making life and death decisions that may affect their survival and they need to know what they’re getting themselves into,” says Fagerlin “Cancer treatments and tests can be serious. Patients need to know what kind of side effects they might experience as a result of the treatment they undergo.”

 

Thu, September 11, 2014

NOVA (on PBS) broadcasted a special episode on vaccines. Brian Zikmund-Fisher was interviewed and prominently featured. Diseases that were largely eradicated in the United States a generation ago-whooping cough, measles, mumps-are returning, in part because nervous parents are skipping their children's shots. Amid the return of vaccine-preventable diseases, NOVA examined the science of immunization, tracked outbreaks, and shed light on the risks of opting out.

The program premired Wednesday, September 10, 2014 at 9 pm/8c on PBS. Watch the full program here.

You can read the press release here.

Research Topics: 
Tue, January 10, 2017

Geoffrey Barnes was featured in a recent MHealth Lab article, "Medication Adherence a Problem in Atrial Fibrillation Patients." Dr. Barnes is the lead author of JAMA Cardiology article, which reports that while anticoagulant therapy is important for stroke prevention in people with atrial fibrillation, many people don’t stick with it for various reasons (side effects, physician advice, etc.).

CBSSM affiliates will be presenting at the WMU Ethics Center Conference: "Bioethics: Preparing for the Unknown" (March 17-18th).

CBSSM Postdoc Kayte Spector-Bagdady: “The Google of Personalized Healthcare: 23andMe and Enabling the Privatization of Genetic Biobanking"

Lan Le, Natalie Bartnik, Michele C. Gornick and Nicole Exe: “Examining the Psychosocial and Ethical Issues Arising from the Identification, Disclosure and Communication of Genomic Results to Patients and Clinicians,” Chair: Raymond De Vries

Other presentations with CBSSM/UM bioethics connections include:

"Patient Understanding and Satisfaction Regarding the Clinical Use of Whole
Genome Sequencing: Findings from the MedSeq Project," Archana Bharadwaj, School of Public Health

"The Voice is As Mighty as the Pen: Integrating Conversations Into Advance Care
Planning Policies," Kunal Bailoor, UM Medical School

Here is the link to the the program: http://www.mywmu.com/s/1428/images/gid2/editor_documents/events/prelimin...

Here is the link to register: http://www.mywmu.com/s/1428/gid2/index.aspx?sid=1428&gid=2&pgid=2900&con...

Registration is now open for the April 25, 2017 CBSSM Research Colloquium & Bishop Lecture in Bioethics. This event is free and open to the public. Registration is encouraged, as it will help us to estimate numbers for catering and lunch. Please RSVP by April 18th.

The keynote address is the Bishop Lecture in Bioethics, an endowed lectureship made possible by a gift from the estate of Ronald C. and Nancy V. Bishop.  Norman Daniels, PhD will present 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.

Location: Great Lakes Room, Palmer Commons, 100 Washtenaw Ave, Ann Arbor, MI 48109
 
Click here to register for the Colloquium!

Click here for the Colloquium Schedule and Presentation Abstracts.

Thu, May 26, 2011

Raymond De Vries was appointed Professor of Midwifery Science at the University of Maastricht (Netherlands) in November 2010.  As is the custom in European universities, he delivered an inaugural lecture, outlining the educational and research goals of his professorship on May 26, 2011.  It was preceded by a research symposium focusing on risk in maternity care, with speakers exploring the way risk is measured and used by care providers and the way pregnant women respond to assessments of risk they are given. Click here to view a video of his inaugural address, which is in English. Click here for a news article about Dr. De Vries, in Dutch.

CBSSM recently co-hosted the panel "Incidental Findings in Clinical Exome and Genome Sequencing: The Drama and the Data" featuring Robert C. Green, MD, MPH, Associate Professor of Medicine, Division of Genetics at Brigham and Women’s Hospital and Harvard Medical School, as the keynote speaker. The panel included a lively and interesting discussion. 

Panel presenters were Jeffrey W. Innis, MD, PhD, Morton S. and Henrietta K. Sellner Professor in Human Genetics and Director, Division of Pediatric Genetics, and Wendy R. Uhlmann, MS, CGC, Clinical Associate Professor, Department of Internal Medicine and Department of Human Genetics. The panel was moderated by Sharon L.R. Kardia, PhD, Director, Public Health Genetics Program and the Life Sciences and Society Program, School of Public Health, University of Michigan.

This event was co-sponsored by CBSSM, the Department of Human Genetics, Genetic Counseling Program, and Life Sciences and Society, Department of Epidemiology.

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