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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.

Funded by Health and Human Services, Department of-Agency for Health Care Research and Quality

Funding Years: 2013 - 2018.

The 2011 HHS report on multiple chronic conditions highlighted the prevalence, morbidity, and cost associated with clusters of co-occurring chronic conditions, both physical and mental. Collaborative chronic care models (CCMs) are effective in treating chronic medical and mental illnesses at little to no net healthcare cost. To date CCMs have primarily been implemented at the facility level and adopted by larger, public healthcare organizations. However, the vast majority of primary care and behavioral health practices providing commercially insured care are far too small to implement such models. Health plan-level CCMs can address this unmet need. Based on a groundbreaking partnership with Aetna Inc., the goal of this study is to implement a cross-diagnosis CCM designed to improve outcomes for persons with mood disorders with an eye towards developing a business case for a generalizable plan-level CCM for solo or small practices. Mood disorders (depression and bipolar disorder) were identified by Aetna as priority conditions because of their chronic nature and high healthcare costs. While evidence-based care parameters have been well established, quality of medical and psychiatric care and health outcomes are suboptimal for persons with mood disorders. We will conduct a randomized controlled trial of the cross-diagnosis CCM vs. education control among Aetna beneficiaries across the country who were hospitalized for unipolar depression or bipolar disorder and treated in solo or small primary care or behavioral health practices. At hospitalization discharge a total of 172 solo or small practices involving a total of 344 patients will be randomized to one year of outpatient treatment augmented by the CCM or education control. CCM care management will be fully remote from practice venues and patients, implemented by the Aetna care management center in Salt Lake City. The primary health outcomes are mood disorder symptoms, health-related quality of life, hospitalizations, and guideline-based mood disorders and cardiometabolic management. Secondary outcomes include determining the provider and organizational factors associated with CCM uptake and outcomes, cost effectiveness of the CCM compared to education control, and development of a business plan based on empirical data and stakeholder input. This proposed R18 addresses AHRQ?s research demonstration and dissemination priorities, particularly around prevention and care management. In addition to this groundbreaking practice-research partnership focused on solo or small practices to further implement CCMs at the health plan level, this study may also lead to the evolution of the business case for cross-diagnosis CCMs in general, and the utility of plan-level panel management and remote technologies, especially with the advent of accountable care organizations and similar initiatives.

PI(s): Amy Kilbourne

Co-I(s): Daniel Eisenberg, H. Myra Kim

CBSSM Colloquium 2016-- call for abstracts

2016 CBSSM Research Colloquium – University of Michigan


Call for Abstracts


The Center for Bioethics and Social Sciences in Medicine (CBSSM) Research Colloquium will be held Wednesday, April 27, 2016 at the Founders Room, Alumni Center, 200 Fletcher Street, Ann Arbor, MI 48109.

The CBSSM Research Colloquium will feature the Bishop Lecture in Bioethics as the keynote address.  This year CBSSM is delighted to announce that William Dale, MD, PhD will present the Bishop Lecture with a talk entitled: "Why Do We So Often Overtreat, Undertreat, and Mistreat Older Adults with Cancer?"

William Dale, MD, PhD is Associate Professor of Medicine and Chief, Section of Geriatrics & Palliative Medicine & Director, SOCARE Clinic at the University of Chicago. A geriatrician with a doctorate in health policy and extensive experience in oncology, Dr. Dale has devoted his career to the care of older adults with cancer -- particularly prostate cancer. Dr. Dale has a special interest in the identification and treatment of vulnerable older patients who have complex medical conditions, including cancer. He is actively researching the interactions of cancer therapies with changes associated with aging.


Abstract submissions are welcome from all disciplines both within UM, as well as other institutions. CBSSM is an interdisciplinary center focusing on bioethics and social sciences in medicine. Our research program areas of interest include:

  • Clinical and Research Ethics - committed to empirical research in ethics (what some have called empirical ethics) by providing an evidence base for informed policy and practice.
  • Health Communication and Decision Making – using techniques from basic and applied research, determines the best practices for communicating health information to patients.
  • Medicine and Society - examines the way health care and bioethics are influenced by social structures and cultural ideas.
  • Health, Justice, and Community - aims to improve knowledge, understanding and practice in resource allocation and distributive justice, ethics of health policy (public and private) and community engagement, with the overarching goal of improving health equity.
  • Genomics, Health, and Society - examines the ethical, social and behavioral implications of advances in genomics.

For more information about our program areas:

Submission Details: (Form is below)

  • Abstracts should contain a title, followed by the names and designations of all contributing authors and the contact details of the corresponding author.
  • Abstracts are to be a maximum of 300 words in length (exclusive of title and author information).
  • Presentations should last no more than 20 minutes, with an additional 5 minutes for questions.  The total time allotted is therefore 25 minutes per presentation. 
  • Abstracts should be submitted on the attached Abstract Submission form.  Submit abstracts via email to Kerry Ryan, If you have questions about the abstract, please contact CBSSM at 734-615-8377 or email Kerry Ryan.
  • Deadline for abstract submission is Friday, March 11, 2016.
  • Notification:  Applicants will be notified by Friday, March 25, 2016.

Tentative Schedule for the Colloquium:

9:00-10:30 Presentations
10:45-12:00 Bishop Lecture:  William Dale, MD, PhD
12:00-1:15 Lunch
1:15-4:30 Presentations

Click here for Abstract Submission Form.

Funded by: NIH

Funding Years: 2016-2021


There is a fundamental gap in understanding how Mild Cognitive Impairment (MCI) influences treatment and Decision Making for serious illnesses, like Cardiovascular disease (CVD), in older patients. Poor understanding of Clinical Decision Making is a critical barrier to the design of interventions to improve the quality and outcomes of CVD care of in older patients with MCI. The long-term goal of this research is to develop, test, and disseminate interventions aimed to improve the quality and outcomes of CVD care and to reduce CVD-related disability in older Americans with MCI. The objective of this application is to determine the extent to which people with MCI are receiving sub-standard care for the two most common CVD events, Acute myocardial infarction (AMI) and acute ischemic stroke, increasing the chance of mortality and morbidity in a population with otherwise good quality of life, and to determine how MCI influences patient preferences and physician recommendations for treatment. AMI and acute ischemic stroke are excellent models of serious, acute illnesses with a wide range of effective therapies for acute management, Rehabilitation, and secondary prevention. Our central hypothesis is that older Adults with MCI are undertreated for CVD because patients and physicians overestimate their risk of dementia and underestimate their risk of CVD. This hypothesis has been formulated on the basis of preliminary data from the applicants' pilot research. The rationale for the proposed research is that understanding how patient preferences and physician recommendations contribute to underuse of CVD treatments in patients with MCI has the potential to translate into targeted interventions aimed to improve the quality and outcomes of care, resulting in new and innovative approaches to the treatment of CVD and other serious, acute illnesses in Adults with MCI. Guided by strong preliminary data, this hypothesis will be tested by pursuing two specific aims: 1) Compare AMI and stroke treatments between MCI patients and cognitively normal patients and explore differences in Clinical outcomes associated with treatment differences; and 2) Determine the influence of MCI on patient and surrogate preferences and physician recommendations for AMI and stroke treatment. Under the first aim, a health services research approach- shown to be feasible in the applicants' hands-will be used to quantify the extent and outcomes of treatment differences for AMI and acute ischemic stroke in older patients with MCI. Under the second aim, a multi-center, mixed-methods approach and a national physician survey, which also has been proven as feasible in the applicants' hands, will be used to determine the influence of MCI on patient preferences and physician recommendations for AMI and stroke treatment. This research proposal is innovative because it represents a new and substantially different way of addressing the important public health problem of enhancing the health of older Adults by determining the extent and causes of underuse of effective CVD treatments in those with MCI. The proposed research is significant because it is expected to vertically advance and expand understanding of how MCI influences treatment and Decision Making for AMI and ischemic stroke in older patients. Ultimately, such knowledge has the potential to inform the development of targeted interventions that will help to improve the quality and outcomes of CVD care and to reduce CVD-related disability in older Americans.

PI: Deborah Levine

CO(s): Darin Zahuranec, MD & Ken Lenga, MD. PhD.

2017 CBSSM Research Colloquium and Bishop Lecture (Norman Daniels, PhD)

Tue, April 25, 2017, 8:30am
Great Lakes Room, Palmer Commons, 100 Washtenaw Ave, Ann Arbor, MI 48109

The Center for Bioethics and Social Sciences in Medicine (CBSSM) Research Colloquium was held Tuesday, April 25, 2017 at the Great Lakes Room, Palmer Commons, 100 Washtenaw Ave, Ann Arbor, MI 48109.

The CBSSM Research Colloquium featured the Bishop Lecture in Bioethics as the keynote address.  Norman Daniels, PhD presented 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. 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.

2017 Colloquium Schedule:

  • 8:30     Check in, refreshments
  • 9:05     Welcome
  • 9:10     Presentation 1: “Setting priorities for Medicaid: The views of minority and underserved communities” Susan Goold, MD, MHSA, MA & Zachary Rowe, Executive Director, Friends of Parkside
  • 9:35     Presentation 2: ““How Acceptable Is Paternalism? A Survey-Based Study of Clinician and Non-clinician Opinions on Decision Making After Life Threatening Stroke” Kunal Bailoor, MD Candidate
  • 10:00   Medical Student in Ethics Award
  • 10:10   Presentation 3: “Ethical Challenges Faced by Providers in Pediatric Death: A Qualitative Thematic Analysis” Stephanie Kukora, MD
  • 10:35   Presentation 4: “Capacity for Preferences:  An overlooked criterion for resolving ethical dilemmas with incapacitated patients” Jason Wasserman, PhD & Mark Navin, PhD
  • 11:00   Break
  • 11:15  Bishop Lecture: Norman Daniels, PhD
  • 12:45  Lunch

How would you adapt? (Nov-05)

Could you cope and find happiness if you were living with paraplegia? Think about what it would be like to have paraplegia and to imagine the impact of this disability on your life. Although some aspects of your life will become more difficult, there are ways to make your daily life a little easier.

List something that would help you to adapt physically if you had paraplegia. (For example, if you lost your eyesight, you could learn Braille, and/or use a cane). Just as there are ways to help you to adapt physically to paraplegia, there are also ways to help handle the immediate and long-term emotional reactions. List a strategy that you would use to emotionally cope with having paraplegia.

Please think about the two most upsetting things about developing paraplegia. Do you think these two things would become more or less upsetting over time?

  • More upsetting over time
  • Less upsetting over time
  • Equally upsetting over time

Please rate paraplegia on a scale from 0 to 100, where 0=quality of life as bad as death and 100=quality of life as good as perfect health.

How do your answers compare?

Those who were given the adaptation exercise rated paraplegia much higher, 62. That means considering adaption tends to have people look more favorably on paraplegia than they otherwise would. For most people, the adaptation exercise resulted in higher ratings. Let's take a closer look at the actual study and explore the importance of considering adaptation.

A discrepancy in perceptions of quality of life

When people first think about a disability, it might seem pretty catastrophic. At first glance, you might think that people living with paraplegia must be miserable. Patients who actually have paraplegia, however, report their quality of life to be significantly better than the public estimates that it would be. It appears, then, that there is a discrepancy between the self-rated quality of life of people with paraplegia, and healthy people's estimates of what their quality of life would be if they had this condition.

Why this discrepancy?

CBDSM director Peter Ubel teamed up with researchers Christopher Jepson and George Loewenstein to conduct a series of studies that aimed to explain why this discrepancy exists. Past research has suggested that patients do not overestimate their good mood, which led the researchers to hypothesize that, in fact, non-patients truly underestimate the quality of life experienced by people with disabilities. The researchers speculated about two explanations that could account for this underestimation. One possibility is that non-patients may be subject to a focusing illusion. That is, they might fail to appreciate that not all life domains or life events will be affected by the disability. Another possibility is that non-patients may be failing to consider adaptation, unable to realize how their feelings and their ability to cope will change over time.

In one study, each subject received one of several defocusing tasks in addition to rating paraplegia. For example, one of these tasks asked subjects to rate how much better or worse their life would be with regards to eight specific life events (e.g., visiting with friends). Another task asked subjects to think of five events that took up the largest amount of their time the preceding day and to rate how much better or worse these events would be if they had paraplegia. In a second study, subjects received one of several adaptation exercise in addition to rating paraplegia. One of these was similar to what you read on the previous page, although more extensive. Another had subjects consider their quality of life both 1 month and 5 years after developing paraplegia. In both studies, sujects rated paraplegia either before and after or only after completing an intervention.

The researchers found that none of the defocusing tasks had any effect on ratings of paraplegia. In fact, these tasks actually caused many participants to give lower ratings than they would have otherwise. All of the adaptation exercises, on the other hand, increased subjects' ratings of paraplegia. Taken together, these results support that the tendency of nonpatients to underestimate the quality of life associated with disabilities is not the result of a focusing illusion, but rather the result of failure to consider adaptation.

Read the article:

Disability and sunshine: Can predictions be improved by drawing attention to focusing illusions or emotional adaptation?
Ubel PA, Jepson C, Loewenstein G. American Journal of Psychiatry 2005;11:111-123.

The Importance of First Impressions (Jun-05)

How do your risk estimate and your actual level of risk impact your anxiety? Please answer the following question to the best of your ability:

What is the chance that the average woman will develop breast cancer in her lifetime?

The average lifetime chance of developing breast cancer is actually 13%.

How does this risk of breast cancer (13% or 13 out of 100 women) strike you?
As an extremely low risk 1       2       3       4       5        6        7        8       9       10 As an extremely high risk

How do your answers compare?

Making a risk estimate can change the feel of the actual risk

CBDSM investigators Angela Fagerlin, Brian Zikmund-Fisher, and Peter Ubel designed a study to test whether people react differently to risk information after they have been asked to estimate the risks. In this study, half the sample first estimated the average woman's risk of breast cancer (just as you did previously), while the other half made no such estimate. All subjects were then shown the actual risk information and indicated how the risk made them feel and gave their impression of the size of the risk. The graph below shows what they found:


As shown in the graph above, subjects who first made an estimated risk reported significantly more relief than those in the no estimate group. In contrast, subjects in the no estimate group showed significantly greater anxiety. Also, women in the estimate group tended to view the risk as low, whereas those in the no estimate group tended to view the risk as high.

So what's responsible for these findings? On average, those in the estimate group guessed that 46% of women will develop breast cancer at some point in their lives, which is a fairly large overestimate of the actual risk. It appears, then, that this overestimate makes the 13% figure feel relatively low, leading to a sense of relief when subjects find the risk isn't as bad as they had previously thought.

Why this finding is important

Clinical practice implications - The current research suggests that clinicians need to be very deliberate but very cautious in how they communicate risk information to their patients. These results argue that a physician should consider whether a person is likely to over-estimate their risk and whether they have an unreasonably high fear of cancer before having them make a risk estimation. For the average patient who would overestimate their risk, making a risk estimation may be harmful, leading them to be too relieved by the actual risk figure to take appropriate actions. On the other hand, if a patient has an unreasonably high fear of cancer, having them make such an estimate may actually be instrumental in decreasing their anxiety. Physicians may want to subtly inquire whether their patient is worried about her cancer risk or if she has any family history of cancer to address the latter type of patient.

Research implications - Many studies in cancer risk communication literature have asked participants at baseline about their perceived risk of developing specific cancers. Researchers then implement an intervention to "correct" baseline risk estimates. The current results suggest that measuring risk perceptions pre-intervention will influence people's subsequent reactions, making it difficult to discern whether it was the intervention that changed their attitudes or the pre-intervention risk estimate. Researchers testing out such interventions need to proceed with caution, and may need to add research arms of people who do not receive such pre-tests.

For more details: Fagerlin A, Zikmund-Fisher BJ, Ubel PA. How making a risk estimate can change the feel of that risk: shifting attitudes toward breast cancer risk in a general public survey. Patient Educ Couns. 2005 Jun;57(3):294-9.



2016 CBSSM Research Colloquium and Bishop Lecture (William Dale, MD, PhD)

Wed, April 27, 2016, 8:30am
Founders Room, Alumni Center, 200 Fletcher St., Ann Arbor, MI

The Center for Bioethics and Social Sciences in Medicine (CBSSM) Research Colloquium was held Wednesday, April 27, 2016 at the Founders Room, Alumni Center, 200 Fletcher Street, Ann Arbor, MI 48109.

The CBSSM Research Colloquium featured the Bishop Lecture in Bioethics as the keynote address.  William Dale, MD, PhD presented the Bishop Lecture with a talk entitled: "Why Do We So Often Overtreat, Undertreat, and Mistreat Older Adults with Cancer?"

William Dale, MD, PhD is Associate Professor of Medicine and Chief, Section of Geriatrics & Palliative Medicine & Director, SOCARE Clinic at the University of Chicago. A geriatrician with a doctorate in health policy and extensive experience in oncology, Dr. Dale has devoted his career to the care of older adults with cancer -- particularly prostate cancer. Dr. Dale has a special interest in the identification and treatment of vulnerable older patients who have complex medical conditions, including cancer. He is actively researching the interactions of cancer therapies with changes associated with aging.


The 2016 Research Colloquium Presentation Schedule:

  •     8:30 AM -- Check in & refreshments
  •     9:00 AM -- Welcome
  •     9:05 AM -- Katrina Hauschildt, MA, PhD Candidate, Department of Sociology: "Language and Communication as Professionalization Projects in Clinical Ethics Consultation"
  •     9:30 AM -- Devan Stahl, PhD, Assistant Professor of Clinical Ethics, MSU: "Is there a right not to know?"
  •     9:55 AM -- Chithra Perumalswami, MD MSc, Robert Wood Johnson Foundation/Veterans Affairs Clinical Scholar: "Insurance Status of Elderly Americans and Location of Death"
  •     10:20 AM -- Break
  •     10:35 AM -- William Dale, MD, PhD, 2016 Bishop Lecture in Bioethics: "Why Do We So Often Overtreat, Undertreat, and Mistreat Older Adults with Cancer?"
  •     12:00 PM -- Lunch
  •     12:45 PM -- Lauren B. Smith, M.D., Associate Professor, Department of Pathology/Ginny Sheffield, UM Medical Student (M3): "Special treatment for the VIP patient:  Is it ethical?  Is it dangerous?"
  •     1:10 PM -- Naomi Laventhal, MD, MA, Assistant Professor, Department of Pediatrics and Communicable Diseases: "Roman Charity Redux: The Moral Obligations of the Breastfeeding Physician"
  •     1:35 PM -- Archana Bharadwaj, Graduate Student, UM School of Public Health: "Patient understanding and satisfaction regarding the clinical use of whole genome sequencing: Findings from the MedSeq Project"
  •     2:00 PM -- Kayte Spector-Bagdady, JD, MBioethics, CBSSM Postdoctoral Research Fellow: "Direct‐to‐Consumer Biobanking"
  •     2:25 PM -- Break
  •     2:40 PM --Panel Presentation (Susan Goold, MD, MHSA, MA & colleagues) : "Community engagement in setting research priorities: Representation, Participation and Evaluation"
    • Why (and how) was CBPR supported in DECIDERS?
    • How were communities represented in DECIDERS decision making?
    • Why and how was the partnership evaluated?
    • How were the 47 focus groups engaged in setting research priorities?

Should this patient get a liver transplant? (Nov-08)

There aren't enough donor organs to go around for patients who need aliver transplant. This sometimes forces doctors to make tough choices.If you were the doctor, how would you decide in the following scenario?  There aren't enough donor organs to go around for patients who need a liver transplant. This sometimes forces doctors to make tough choices. If you were the doctor, how would you decide in the following scenario?Suppose there is a person who develops acute liver failure (ALF). While waiting for a liver transplant, this person gets sicker and sicker. When an organ is finally available, the chance that this person will survive WITH a transplant is only 42% at five years after the transplant. Since the average survival for most patients who receive a liver transplant is 75% at five years, the doctor wonders if it would be better to save the liver for someone else. Two possible ethical principles may guide the doctor in making this decision. 

Using the principle of URGENCY, the doctor would give the first available organ to the sickest patient on the transplant waiting list, the ALF patient, because she/he is otherwise likely to die within a few days.

Using the principle of UTILITARIANISM, the doctor would try to maximize the quality and quantity of life of all the people on the transplant list. Let's say there are 25 other patients currently on the waiting list, and transplanting the ALF patient increases their risk of death by 2% each, for a cumulative harm of 50%. Since this harm of 50% is more than the benefit to the ALF patient (42%), the liver should be saved for someone else on the list.

A third possibility is for the doctor to weigh both URGENCY and UTILITARIANISM in making a decision about a transplant.

If you were the ALF patient's doctor, what would you base your decision about a transplant on?
  • URGENCY (sickest patient on the list gets preference)
  • UTILITARIANISM (maximize benefit for the entire waiting list)
  • A combination of URGENCY and UTILITARIANISM

How do your answers compare?

There's no absolutely right or wrong answer in this case—the choice depends on which of several competing ethical principles or which combination of principles you follow. In choosing a combination of URGENCY and UTILITARIANISM, you've decided to try to balance the needs of the sickest patient with the needs of all the people on the transplant waiting list.

CBDSM researcher Michael Volk, MD, is the lead author on a recent article that tackles difficult decisions like this one. Volk and his colleagues examined a method to incorporate competing ethical principles in a decision analysis of liver transplantation for a patient with ALF. Currently, liver transplantation in the United States is determined by the principle of “sickest first," with patients at highest risk for death on the waiting list receiving first priority. In other words, the principle of URGENCY is paramount. However, most experts agree that, given the limited supply of organs, there should be a cutoff for posttransplant survival below which transplantation is no longer justified.

Where does society draw this line? And what framework can we use for ethical guidance?

Decision analysis of resource allocation would utilize the principle of UTILITARIANISM, to maximize the broad social benefit. But surveys of the general public have shown that most people prefer to temper utilitarianism with other considerations, such as equal opportunity, racial equity, and personal responsibility. Another factor that might be considered is the principle of fair chances. This is the idea that patients who have not had a chance at a liver transplant should receive priority over those who have already had once chance at a transplant.

Volk constructed a mathematical model (Markov model) to test the use of competing ethical principles. First he compared the benefit of transplantation for a patient with ALF to the harm caused to other patients on the waiting list, to determine the lowest acceptable five-year survival rate for the transplanted ALF patient. He found that giving a liver to the ALF patient resulted in harms to the others on the waiting list that cumulatively outweighed the benefit of transplantation for the ALF patient. That is, using UTILITARIANISM as the sole guiding ethical principle gave a clear threshold for the transplant decision: if the ALF patient did not have a five-year survival rate of at least 48%, she/he should not receive a transplant under this principle.

But UTILITARIANISM is not always the sole guiding ethical principle. When Volk adjusted the model to incorporate UTILITARIANISM, URGENCY, and other ethical principles such as fair chances, he got different thresholds. Depending on the combination of ethical principles used, Volk and his colleagues have shown that the threshold for an acceptable posttransplant survival at five years for the ALF patient would range from 25% to 56%.

The authors of this study conclude:

"Our model is an improvement over clinical judgment for several reasons. First, the complexity of the various competing risks makes clinical decision making challenging without some form of quantitative synthesis such as decision analysis. Second, a systematic approach helps ensure that all patients are treated equally. Most important, this study provides moral guidance for physicians who must simultaneously act as patient advocates and as stewards of scarce societal resources."

Volk ML, Lok ASF, Ubel PA, Vijan S, Beyond utilitarianism: A method for analyzing competing ethical principles in a decision analysis of liver transplantation, Med Decis Making 2008;28, 763-772.


More information:

Beyond utilitarianism: A method for analyzing competing ethical principles in a decision analysis of liver transplantation.
Volk M, Lok AS, Ubel PA, Vijan S. Medical Decision Making 2008;28(5):763-772.


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.