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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.

Edward Goldman, JD, BA

Faculty

From 1978 to 2009, Ed was head of the U-M Health System Legal Office.  In 2009 he moved into the Medical School Department of ObGyn as an Associate Professor to work full-time on issues of sexual rights and reproductive justice.  He has teaching appointments in the Medical School, the School of Public Health, the Law School, and LSA Women's Studies.  He teaches courses on the legal and ethical aspects of medicine at the Medical School, the rules of human subjects research at the School of Public Health and reproductive justice in LSA and the Law School..  In 2011, Ed went to Ghana and helpe

Research Interests: 
Last Name: 
Goldman

What is the price of life? (Aug-03)

Do you think that your life is worth more than the amount that the government usually uses as the maximum to spend to provide one year of life?

Imagine that you are a member of a government panel that is trying to decide how cost-effective a medical treatment must be in order for the government to cover the costs of the treatment. Suppose that a certain treatment could provide one additional year of life to an otherwise healthy person. What is the highest amount the government should be willing to pay per person for this treatment?

How do your answers compare?

For the past twenty years, the figure most often used as the maximum amount to spend to provide one year of life has been $50,000. This figure was originally proposed since it was the cost of a year of kidney dialysis, a lifesaving treatment that the U.S. government funds in Medicare.

Should the number be higher or lower than the current standard?

Conventional wisdom would suggest that the number be higher to take into account the inflation that has occurred in the years since the standard was developed. Current practices such as annual Pap smear screening for women with low risk for cervical cancer, which has a cost of $700,000 per year of life gained, also suggest that society is willing to pay more than the current standard for a year of life. The authors of the cited article recommend, based on current treatment practices and surveys of the general public, that the cost-effectiveness threshold should be revised to be around $200,000.

Should the number increase, decrease, or stay the same over time?

Again, it seems that the threshold amount should increase over time due to inflation. However, other factors come in to play that affect the value.

Since new technologies are emerging all the time, some of which will be deemed cost-effective, there will be more and more treatments to be offered in the future. Also, the rate of use of treatments is an important consideration, because even if a new treatment is more cost-effective than an old one, if it is used more often it will end up costing more to society overall. With more treatments becoming available and more people being given treatments, the threshold cost will probably have to decrease so that insurance companies and the government can keep up with the increasing availability and demand.

Why is this important?

Insurance companies and government health care entities face a continuing struggle when trying to determine which medical treatments to cover. Health care costs are increasing rapidly, so these groups will be facing even tougher decisions in the future. Establishing cost-effectiveness guidelines would be extremely helpful as an aid to making the decisions about treatment coverage. Evidence shows that the current threshold is probably not an accurate reflection of the desires of society or actual prescribing practices. It needs to be adjusted to become useful once again, and must be reevaluated periodically to make sure the value keeps up with trends in the health care market, rather than being left alone without question for two decades as is the current situation.

For more information see:

Ubel PA, Hirth RA, Chernew ME, Fendrick AM. What is the price of life and why doesn't it increase at the rate of inflation? Archives of Internal Medicine. 163:1637-1641, 2003.

Mick Couper, PhD, and Brian Zikmund-Fisher, PhD, have received additional funding from the Foundation for Informed Medical Decision Making for continuing analysis of their groundbreaking National Surveyof Medical Decisions. This telephone survey of 3,010 English-speaking adultsover the age of 40 targeted decisions related to nine issues: hypertensionmedication, hypercholesterolemia medication, depression medication, colorectal cancer screening, breast cancer screening, prostate cancer screening, knee/hip replacement surgery, cataract surgery, and surgery for lower back pain. Drs.Couper and Zikmund-Fisher seek to clarify how details of patients' decision-making processes might vary across a variety of conditions.

CBSSM Seminar: Barbara Koenig, PhD

Thu, October 23, 2014, 3:00pm to 4:00pm
Location: 
NCRC 16-266C

Barbara Koenig, PhD
Professor of Medical Anthropology & Bioethics Dept. of Social & Behavioral Sciences
Institute for Health & Aging, UCSF

“Revisiting the “Race” Issue in Genomics”

Summary: Throughout the post-genomic era, efforts to categorize human populations according to geographical ancestry have been contentious. How does genetic variation map on to social categories of difference? How can researchers seeking to understand health disparities—or to interrogate diseases associated with particular genetic variants—pay attention simultaneously to race as social identity, and biological characteristic?

CBSSM Seminar: Stephanie Kukora, MD

Wed, November 05, 2014, 3:00pm to 4:00pm
Location: 
NCRC 16-266C

Stephanie Kukora, MD
Neonatal-Perinatal Medicine Fellow

"Choosing Wisely: using past medical decisions in allocating scarce ECMO resources"

This talk will examine the ethical complexities of distributing limited ECMO resources to a growing population of eligible patients across the age spectrum and varying prognosis, describe the ramifications of influenza vaccine refusal among otherwise healthy adults, and explore the moral permissibility of allocating scarce ECMO resources based on previous medical decision-making, such as declining the seasonal influenza vaccine.

CBSSM Seminar: Kevin Kerber, MD

Wed, December 03, 2014, 3:00pm to 4:00pm
Location: 
NCRC 16-266C

 Kevin Kerber, MD
Associate Professor of Neurology, Medical School
Director, Dizziness Clinic

Title: Implementation of Evidence-Based Practice for Benign Paroxysmal Positional Vertigo

Summary: A wide gap exists between the evidence-base for processes to diagnose and treat Benign Paroxysmal Positional Vertigo (BPPV) and the use of these processes in real world medicine. The investigators will present their work-in-progress regarding an implementation strategy to increase the use of BPPV processes in emergency department presentations of dizziness.

CBSSM Seminar: Jacob Solomon, PhD

Thu, November 19, 2015, 3:00pm to 4:00pm
Location: 
NCRC, Building 16, Room 266C

Jacob Solomon, PhD


CBSSM Postodoctoral Fellow

Title:

Designing the information cockpit: The impact of customizable algorithms on computer-supported decision making

Abstract:

Intelligent systems that provide decision support necessitate interaction between a human decision maker and powerful yet complex and often opaque algorithms. I will discuss my research on end-user control of these algorithms and show that designing highly customizable decision aids can make it difficult for decision makers to identify when the system is giving poor advice.

CBSSM Seminar: Kayte Spector-Bagdady, JD

Wed, December 09, 2015, 3:00pm to 4:00pm
Location: 
NCRC, Building 16, Room B004E

Kayte Spector-Bagdady, JD


CBSSM Postdoctoral Fellow

From the Guatemala STD Experiments to the NPRM for Revisions to the Common Rule: Why We Still Don’t Have Human Subjects Research Ethics Right

While much has been made of scandals, and academics zealously deliberate nuances, we still find ourselves revisiting the most basic of human subjects research ethics questions: What is a research subject? What is informed consent? This talk will address this ongoing debate but also the less often asked question of why—what are the structural pressures that bring us time and again to step one and is human subjects research ethics a zero sum game?

PIHCD: Jessica Mellinger

Thu, February 11, 2016, 4:00pm
Location: 
B004E NCRC Building 16

Alcoholic liver disease represents a large and growing portion of the liver disease in the US and worldwide, and the most powerful treatment shown to improve outcomes for patients with ALD is complete abstinence from alcohol.  Unfortunately, many patients with ALD continue to drink or relapse to alcohol use, even after their diagnosis, worsening liver-related outcomes and  mortality. Jessica Mellinger will be speaking about her K award project to improve outcomes for patients with ALD by developing and testing a pilot intervention designed to increase engagement in alcohol use disorder treatment.

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