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Funded by National Institutes of Health.

Funding Years: 2014-2019.

The quality and cost of cancer care varies widely across hospitals and health systems. A large body of research indicates that hospitals with better outcomes tend to have large case volumes and a defined focus on cancer care. These and other data have prompted many to advocate for specialized cancer hospitals, so-called "focused factories", as the best delivery system for achieving more efficient cancer care. However, reforms in the Affordable Care Act, including Accountable Care Organizations (ACO), are moving care away from this model. Although proponents argue that ACOs will improve efficiency by encouraging previously unaligned hospitals and physicians to evolve toward integrated delivery systems, others worry that the intended benefits will not accrue for patients with complex cancer diagnoses, and that ACOs will discourage referrals to hospitals with the greatest cancer expertise. To explore this issue, we propose a study that evaluates comprehensively the relationship between care delivery models and the quality, outcomes, and cost of cancer care in the United States. In the first aim, we will examine the impact of care delivery models on the quality of cancer care. Using national Medicare claims and linked SEER-Medicare data, we will identify cohorts of patients with breast, lung, prostate, and pancreatic cancer. We will then compare the quality of cancer care provided in different care delivery models based on levels of adherence with guideline recommendations and/or nationally-endorsed quality measures. We posit that cancer-focused hospitals will often have higher levels of adherence, due in part to their greater concentration of disease-specific expertise. In the second aim, we will assess the association between care delivery models and outcomes, including operative mortality, complications, hospitalizations, and long-term survival. We hypothesize that patients treated in cancer-focused hospitals will have better mortality outcomes, while greater delivery system integration will correlate with fewer hospitalizations following initial cancer therapy. In the third aim, we will examine cancer-related expenditures for these patient cohorts as they vary over time after diagnosis. We will also assess payments related to different clinical services including surgical procedures, systemic therapy, end-of-life care, and non-cancer-related treatments. We expect that cancer-focused hospitals will achieve savings around episodes of surgical care, and that patients treated in more integrated delivery systems will have lower longitudinal costs for their cancer care. Results from this study will prove invaluable to CMS policymakers and other stakeholders as they debate whether delivery system reforms deemed good for healthcare in general are also good for patients with cancer.

PI(s): David Miller

Co-I(s): Mousumi Banerjee, John Birkenmeyer, Jennifer Griggs, Edward Norton, Yun Zhang


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.

MD vs. WebMD: The Internet in Medical Decisions (Dec-10)

With just a simple search term and a click of the mouse, a person can find a large amount of health information on the Internet. What role does the Internet play in how patients make medical decisions? Does using the Internet as a source for information to help patients make informed decisions vary by health condition? Does the Internet substitute for detailed discussions with a health care provider?

Consider the following:

Imagine that you recently visited your health care provider for an annual physical examination. During the exam your doctor told you that you are at the age where you should start thinking about getting a screening test for colon cancer. In this conversation your health care provider explained some of the reasons why you should get screened. At the end of the visit, you had more information about screening tests for colon cancer but had not yet decided whether or not you wanted to get tested.

As you think about how you would make a decision about whether or not to get screened for colon cancer:
How important is your health care provider as a source of information about screening tests for colon cancer?
Not at all important (1) (2) (3) (4) (5) (6) (7) (8) (9) (10) Extremely important
Would you use, or have someone else use for you, the Internet to find information on screening tests for colon cancer?
  • Yes
  • No
  • Don't know
How important is the Internet as a source of information screening tests for colon cancer?
Not at all important (1) (2) (3) (4) (5) (6) (7) (8) (9) (10) Extremely important

How do your answers compare?

In a recent study published in the journal Medical Decision Making, CBSSM investigators Brian Zikmund-FisherMick Couper, and Angela Fagerlin examined Internet use and perceived importance of different sources of information by patients making specific medical decisions.

In this study, US adults aged 40 years and older were asked about how they got information about 9 common medical decisions, including decisions about common prescription medication (for high blood pressure, cholesterol, and depression), cancer-screening tests (for colorectal, breast, and prostate cancer), and elective surgeries (for lower back pain, cataracts, and knee/hip replacement). In addition, they study compared participants' ratings of the Internet as a source of information with their ratings of other sources, such as their health care provider.

So, how did your responses compare to the average adult in this study's population?

Results from this study showed that most patients did not use the Internet to make specific medical decisions like the ones you considered. On average, about 26% of participants made use of the Internet for information to make decisions about colon cancer screening tests and about 47% used it to inform a decision about lower back pain surgery.

Among participants who chose to use the Internet for finding information about specific medical decisions, data show that Internet use varies significantly across different types of medical decisions. Internet users were more likely to use the Internet for information related to elective surgery (36%), such as lower back pain surgery, and prescription medication (32%) than for cancer-screening decisions (22%), such as colon cancer screening.

Another element of this study looked at participants' ratings of different information sources. You are unlike other participants in this study in that you did not consistently rate health care providers as the most important source for information about colon cancer screening and lower back pain surgery. The CBSSM study found that, for both Internet users and nonusers, health care providers were rated highest as a source for information for all 9 decisions studied. Among Internet users, however, the Internet was rated as their 2nd-most important source of information.

The researchers found that Internet use to inform specific medical decisions varied by age ranging from 38% for those aged 40 to 49 years to 14% for those aged 70 years or older. Approximately 33% of 50 to 59 year olds used the Internet to make these medical decisions and 24% for those in the 60 to 69 year age category. This result is consistent with previous research on the demographics of Internet use.

The study authors concluded that the Internet has an impact on people's access to health care information; however, "the data suggest that access is not the same as use, and use for one medical decision does not imply use for all health decisions." In other words, people use the Internet differently depending on the context. The authors end by stating, "Clinicians, health educators, and health policy makers need to be aware that we remain a long way away from having Internet-based information sources universally used by patients to improve and support the process of medical decision making."

For the full text of this article:

Couper M, Singer E, Levin CA, Fowler F, Fagerlin A, Zikmund-Fisher BJ. Use of the internet and ratings of information sources for medical decisions: Results from the DECISIONS survey. Medical Decision Making 2010;30:106S-114S.


Is your well-being influenced by the guy sitting next to you? (Nov-03)

Rating your satisfaction with your life may not be a completely personal decision. See how your satisfaction rating may be influenced by others.

When answering this question, imagine that there is someone in a wheelchair sitting next to you. They will also be answering this question, but you will not have to share your answers with each other.

How satisfied are you with your life in general?

Extremely satisfied 1       2       3       4       5       6       7       8       9       10 Not at all satisfied

How do you compare to the people surveyed?

You gave your life satisfaction a rating of 1, which means that you are extremely satisfied with your life. In a study done where people with a disabled person sitting next to them wrote down their life satisfaction on a questionnaire, they gave an average life satisfaction rating of 2.4, which means they were very satisfied with their lives.

What if you'd had to report your well-being to another person instead of writing it down?

In the study, half the people had to report their well-being in an interview with a confederate (a member of the research team who was posing as another participant). When the participants had to report in this way, and the confederate was not disabled, the participants rated their well-being as significantly better than those who reported by writing it on the questionnaire in the presence of a non-disabled confederate (2.0 vs. 3.4, lower score means higher well-being). The scores given when reporting to a disabled confederate elicited a well-being score that was no different than that when completing the questionnaire in the presence of a disabled confederate (2.3 vs. 2.4).

Mean life satisfaction ratings, lower score means higher satisfaction
Mode of rating well-being Disabled confederate Non-disabled Confederate
Interview (public) 2.3 2.0
Questionnaire (private) 2.4 3.4
What caused the difference in well-being scores?

When making judgments of well-being, people (at least in this study) tend to compare themselves to those around them. This effect is seen more when well-being was reported in an interview than when the score was privately written down, due to self-presentation concerns. A higher rating was given in public so as to appear to be better off than one may truly feel. Note that the effect was only seen in the case where the confederate was not disabled. While well-being ratings were better overall with a disabled confederate, there was no difference between the private and public ratings. Social comparison led to a better well-being judgment, but it appears that the participants were hesitant to rate themselves too highly in front of the disabled person for fear of making the disabled person feel worse.

Why is this important?

Subjective well-being is a commonly used measure in many areas of research. For example, it is used as one way to look at the effectiveness new surgeries or medications. The above studies show that SWB scores can vary depending on the conditions under which they are given. Someone may give a response of fairly high SWB if they are interviewed before leaving the hospital, surrounded by people more sick than they are. From this, it would appear as though their treatment worked great. But suppose that they are asked to complete a follow-up internet survey a week later. Since they do not have to respond to an actual person face-to-face, and without being surrounded by sick people, they may give a lower rating than previously. Is this because the treatment actually made their SWB worse over the longer term, or simply because a different method was used to get their response? The only way to really know would be to use the same methodology to get all their responses, which might not always be feasible. These are important considerations for researchers to keep in mind when analyzing results of their studies. Are the results they got the true SWB of their participants, or is it an artifact of how the study was done? And is there a way to know which measure is right, or are they both right which would lead to the conclusion that SWB is purely a momentary judgment based on a social context?

For more information see:

Strack F, Schwarz N, Chassein B, Kern D, Wagner D. Salience of comparison standards and the activation of social norms: Consequences for judgements of happiness and their communication. British Journal of Social Psychology. 29:303-314, 1990.

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.

Reshma Jagsi, MD, DPhil


Reshma Jagsi, M.D., D.Phil., is Professor and Deputy Chair in the Department of Radiation Oncology at Michigan Medicine and Director of the Center for Bioethics and Social Sciences in Medicine. In addition to her medical training at Harvard Medical School, she served as a fellow in the Center for Ethics at Harvard University and completed her doctorate in Social Policy at Oxford University as a Marshall Scholar. Dr. Jagsi is board-certified in Radiation Oncology by the American Board of Radiology.

Last Name: 
Press Coverage: 

Supporting information for: 2014 CBSSM Research Colloquium and Bishop Lecture (Myra Christopher)


Andrew G. Shuman, MD, Assistant Professor, Department of Otolaryngology, University of Michigan

"When Not to Operate: The Dilemma of Surgical Unresectability"

One of the most anguishing choices a surgeon can make is deciding not to embark upon an operation because a tumor is deemed unresectable.  Despite the widespread acceptance of patient autonomy and transparency in medical practice, there remains an unstated paternalism “behind the mask,” within the confines of the operating room.  The concept of surgical unresectability derives from a complex combination of tumor factors, patient factors, and surgeon factors.  In many cases, these decisions are intensely personal and subjective, with disagreements even among surgeons in the same field.  There is a risk that the voice of the patient may be lost in making these decisions, as surgeons weigh these intangible variables in ways that may be incommunicable.  However, the consequences of proceeding with an operation unlikely to achieve its intended outcome may be similarly terrifying.  In this presentation, a cancer surgeon and reconstructive surgeon will discuss these dilemmas from multiple perspectives using real-life case examples from their practice.  We will collectively try to tease out the inherent biases informing such decisions from the standpoint of doctors, patients, and clinical ethicists.  The theoretical underpinnings of the authority of surgical judgment will be explored, noting that pursuing goods internal to the practice of surgery requires such decisions, and asking whether Polanyi’s concept of tacit knowledge explains (or even permits) a degree of paternalism.  

Phoebe Danziger, BA, MD expected May 2014
"Beliefs, Biases, and Ethical Dilemmas in the Perinatal Counseling and Treatment of Severe Kidney Anomalies"

Anomalies of the kidney and urinary tract are the most common prenatally diagnosed fetal structural abnormalities, and are a major cause of end-stage kidney disease in children. Severe, prenatally diagnosed cases present a number of unique ethical issues with respect to the care of the pregnant woman, fetus, and neonate. We will use a case-based approach to explore these issues in the context of prenatal counseling, and in the neonatal period. On a case-by-case basis, efforts are made antenatally to coordinate counseling from appropriate consultants such as maternal-fetal medicine, neonatology, and pediatric urology and nephrology. We argue, however, that significant differences exist both between individual physicians and between subspecialties more broadly with regard to beliefs about prognosis, therapeutic interventions available, and appropriate utilization of palliative versus life-prolonging options. Unlike for other high-risk perinatal conditions such as extreme prematurity, no guidelines or standardized interprofessional processes exist for the provision of coordinated, timely, and non-directive care to these patients. This has implications for choices made regarding prenatal care, resuscitation efforts at birth, and utilization of palliative and life-prolonging care options, and we argue that the implicit biases and differences in both counseling and practice must be explicitly addressed and considered in order to facilitate more effective counseling for families facing these diagnoses. We will discuss the prenatal use of the term “lethal pulmonary hypoplasia,” a term that implies an unequivocal outcome but is a tissue-based diagnosis that can only be made after birth, not on the basis of obstetric ultrasound. We will also discuss the strikingly different rates of utilization of and attitudes towards dialysis initiated in the neonatal period, both between individual care providers and between institutions. 

Kathryn L. Moseley, MD, MPH, Assistant Professor, Pediatrics and Communicable Diseases, University of Michigan
"Electronic Medical Records: Challenges for Clinical Ethics Consultation"
Electronic medical records (EMRs) are rapidly replacing their paper counterparts. Their advantages include readability, access, organization, and comprehensiveness. The qualities that make EMRs so attractive also create new challenges for the clinical ethics consultant and the consultation process. This transition from a handwritten record of examinations and diagnoses that resided in close proximity to the patient to an electronic record that can be read remotely creates a number of concerns uniquely problematic for ethics consultation.  
We identify 4 hazards that EMRs present to ethics consultants:
Accessing significant medical information remotely, before face-to-face contact, can bias the consultant and lead to the premature development of conclusions/recommendations.
The ability to access medical information remotely can tempt the consultant to be less thorough in face-to-face information-gathering.
The paucity of nuanced information about the patient/family social and emotional situation and the content of patient/family meetings can misinform and mislead the consultant.
Remotely accessing information can delay communication with the patient and family, potentially undermining their trust in the objectivity of the ethics consultation process.
We propose the following 3 recommendations for training programs and ethics committee members to begin to address the concerns above:
1) Training programs for ethics consultants should emphasize the importance of face-to-face encounters with all stakeholders as soon as possible after receiving a consult.  Telephone only consults should be discouraged.
2) Hospital ethics committees should create procedures and processes that encourage and support face-to-face information gathering.
3) New consultants should be educated about the limitations of the EMR, especially as an accurate source of information about the emotional or social situation of the patient/family and the content of patient/family meetings.
Helen Morgan, MD,  Department of Obstetrics and Gynecology, University of Michigan
"Academic Integrity in the Pre-Health Undergraduate Experience"
Introduction: There is evidence that academic misconduct early in a student’s career can initiate a continuum of later unethical behaviors.  Multiple studies have reported that the best predictor of whether a student will cheat in medical school is whether they had a history of cheating in college.   Cheating in medical school has been found to be the strongest predictor of disciplinary action by state medical boards for practicing physicians. There is a paucity of data on perceptions of academic integrity in pre-health students. Methods: In the fall of 2013, we administered a survey on academic integrity to first-year pre-health students in the Health Science Scholars Program.  The curriculum for their course included sessions on academic integrity in the health care profession, and in the pre-health experience.  Follow-up assessments in the spring of 2014 included a re-administration of the same integrity survey, as well as a survey on students’ perceptions of what pressures and justifications lead to cheating behaviors. Results:  In the fall, students reported that 7.5% had cheated already in college, 26.2% had witnessed cheating in college, and 59.4% believed that academic misconduct was a problem at the University of Michigan.  In the spring, the percent of students who reported cheating in college was unchanged at 7.1%, and there was an increase in the number of students who reported witnessing cheating in college at 40.8% (p=0.027).    Students cited admissions requirements for graduate programs as the highest sources of pressure to cheat. Conclusion: This pilot data demonstrates that there is a need for curriculum development that could potentially prevent academic misconduct in vulnerable pre-health students.
Tanner Caverly, MD, MPH, Health Services Research Fellow, Ann Arbor VA Medical Center and Clinical Lecturer, University of Michigan
"How transparent are cancer screening & prevention guidelines about the benefits and harms of what they recommend?"
Transparent risk information -- that is, presenting absolute risks on both benefits and harms -- is essential for medical decision making. Without this information clinicians and policy-makers cannot know how much an intervention helps, whether the potential benefit is worth the potential harms, or whether one service is more helpful than another service. We recently did a structured review of clinical practice guidelines and two widely-used clinical resources. We found that few recommendations are accompanied by transparent risk information on the benefits and harms of the recommended cancer prevention service (only 23%). This talk focuses on how risk information WAS presented and the implications of our findings.
Susan D. Goold, MD, MHSA, MA , Professor of Internal Medicine and Health Management and Policy, School of Public Health, University of Michigan
"Controlling Health Costs:  Physician Responses to Patient Expectations for Medical Care"
Background: Physicians have dual responsibilities to make medical decisions that serve their patients’ best interests but also utilize health care resources wisely.  Their ability to practice cost-consciously is particularly challenged when faced with patient expectations or requests for medical services that may be unnecessary. Objective:  To understand how physicians consider health care resources and the strategies they use to exercise cost-consciousness to respond to patient expectations and requests for medical care. Design:  Exploratory focus groups of practicing physicians were conducted.  Participants were encouraged to discuss their perceptions of resource constraints, experiences with redundant, unnecessary and marginally beneficial services, and asked about patient requests or expectations for particular services. Participants:  Sixty-two physicians representing a variety of specialties and practice types participated in 9 focus groups in Michigan, Ohio, and Minnesota in 2012. Measurements:  Iterative thematic content analysis of focus group transcripts. Principal Findings:  Physicians reported making tradeoffs between a variety of financial and nonfinancial resources, considering not only the relative cost of medical decisions and alternative services, but the time and convenience of patients, their own time constraints, as well as the logistics of maintaining a successful practice.  They described strategies and techniques to educate patients, build trust, or substitute less costly alternatives when appropriate, often adapting their management to the individual patient and clinical environment. Conclusions:  Physicians often make nuanced trade-offs in clinical practice aimed at efficient resource use within a complex flow of clinical work and patient expectations.  Understanding the challenges faced by physicians and the strategies they use to exercise cost-consciousness provides insight into policy measures that will address physician’s roles in health care resource use.

How much will chemotherapy really help you? (Dec-08)

After breast cancer surgery, additional treatments such as chemotherapy can reduce the risk of cancer coming back. But do women understand how much (or little) benefit chemotherapy provides? Imagine that you're a woman who has recently been diagnosed with breast cancer and then had the cancerous breast tumor surgically removed. While you're at an appointment about 3 weeks after your surgery, your doctor says the following to you:

"Sometimes cancer cells remain after surgery and start to grow again. To try to prevent your cancer from growing again, you should consider having some additional treatment.

"One of our test results shows that you have a type of cancer that is estrogen receptive (ER) positive. This means that your cancer needs the hormone estrogen in order to grow.

"Because you have an ER-positive tumor, you should have hormonal therapy to block estrogen and make it harder for any remaining cancer cells to grow. Hormonal therapy is usually in pill form. It does not cause hair loss or fatigue and generally has very few short-term side effects. You'll start to take hormonal therapy after all other treatments are finished and continue to take it for at least 5 years.

"Although it's clear that you should have hormonal therapy, you'll still need to make a choice about chemotherapy treatments. You could decide to have additional chemotherapy treatments for several months before starting the hormonal therapy. Sometimes, adding chemotherapy can make a big difference in decreasing the risk of dying from cancer. Other times, there's almost no benefit from adding chemotherapy.

"If you decide to have chemotherapy, you'll have 2 to 4 months of fatigue, nausea, hair loss, and other side effects. You'll also face a small risk (less than 1% or less than 1 in 100) of getting a serious infection, a bleeding problem, heart failure, or leukemia. Only you can decide if the benefit of adding chemotherapy to hormonal therapy is worth the risks and side effects."

Next, your doctor shows you a graph that may help you to decide about chemotherapy.

Your doctor says, "The graph below may help you decide if the risk reduction you would get from adding chemotherapy is worth the side effects and risks that the chemotherapy would cause.

  • The green part shows the chance that you'll be alive in 10 years.
  • The red part shows the chance that you'll die because of cancer.
  • The blue part shows the chance that you'll die from other causes.
  • The yellow part shows how much your chance of being alive in 10 years would increase if you add a therapy.
"Remember, given your situation, I think you should definitely take hormonal therapy. What you need to decide is whether to take both chemotherapy and hormonal therapy."
In interpreting this graph, imagine that there are two groups of 100 women each. All of these women have the same type of cancer as your hypothetical cancer.
  • The first group all decides to take hormonal therapy only.
  • The second group all decides to take both chemotherapy and hormonal therapy

How many fewer women will die from cancer in the second group, as compared with the first group?

Your doctor continues, "Now, here is another graph that shows the same information in a different way. As before,

  • The green part shows the chance that you'll be alive in 10 years.
  • The red part shows the chance that you'll die because of cancer.
  • The blue part shows the chance that you'll die from other causes.
  • The yellow part shows how much your chance of being alive in 10 years would increase if you add a therapy.
Now we asked you to consider the following question:
How many fewer women will die from cancer in the second group, as compared with the first group?
Do you want to change your answer?

About the study

Many participants who saw this graph in a study conducted by CBDSM researchers had similar problems. However, when study participants saw GRAPH B (with the two pictographs), many more were able to correctly calculate the difference.

The CBDSM study compared tools intended to help cancer patients make informed decisions about additional therapies (also called "adjuvant" therapies). The 4 horizontal stacked bars were taken from an online tool called "Adjuvant!" that is often used by physicians to explain risk to cancer patients. The researchers compared comprehension of risk statistics from horizontal bars and from a pictograph format.

They found that study participants who viewed a 2-option pictograph version (GRAPH B in this Decision of the Month) were more accurate in reporting the risk reduction achievable from adding chemotherapy to hormonal therapy for the hypothetical cancer scenario. With GRAPH B, 77% of participants could identify that 2 fewer women out of 100 would die from cancer with both chemotherapy and hormonal therapy. With the 4 horizontal bars (GRAPH A), only 51% of participants could make this calculation. Participants who saw GRAPH B were also much faster at answering this question than participants who saw GRAPH A.
In addition, participants in this study strongly preferred the format of the pictograph you saw (GRAPH B) to the bar graphs you saw (GRAPH A).
The researchers comment:
"While decision support tools such as Adjuvant! use graphical displays to communicate the mortality risks that patients face with different adjuvant therapy options, our research shows that women had difficulty interpreting the 4-option horizontal bar graph format currently used by Adjuvant!. Two simple changes, displaying only risk information related to treatment options that included hormonal therapy...and using pictographs instead of horizontal bars, resulted in significant improvements in both comprehension accuracy and speed of use in our demographically diverse sample....The the concept that simpler information displays can make it easier for decision makers to implement optimal decision strategies. Specifically, focusing patients' attention on those treatment options currently under consideration while removing information related to options which have been already eliminated from consideration (for medically appropriate reasons) may be particularly beneficial. In the context of adjuvant therapy decisions, such an approach would imply that clinicians should discuss the decision in two stages: A first stage in which hormonal therapy is considered and a second stage in which the incremental benefit of chemotherapy is evaluated...Adjuvant! and other online risk calculators enable oncologists and patients to receive individually tailored estimates of mortality and recurrence risks, information that is essential to informed decision making about adjuvant therapy questions. Yet, the full potential of these modeling applications cannot be realized if users misinterpret the statistics provided."
Read the article:
Zikmund-Fisher BJ, Fagerlin A, Ubel PA. Cancer 2008;113(12):3382-3390.


Drilling for Answers (Sep-08)

Find out about some experimental treatments for Parkinson's Disease. And then decide how you'd respond if you had a chance to participate in this research. In this interactive decision, we’re going to ask you about some experimental treatments for Parkinson’s Disease.

What is Parkinson’s Disease?

Up to 1 million Americans are currently diagnosed with Parkinson’s Disease, a brain disease that gradually worsens over many years and causes tremors, stiffness, slowness of movement, and balance problems. Some people with Parkinson’s Disease also experience changes in memory, concentration, and mood.

The average age at onset of symptoms is 65, but 5% to 10% have onset before the age of 45. The symptoms are caused by the death of cells in the brain that make a chemical called dopamine. Medications that are available to treat Parkinson’s Disease provide more dopamine to the brain or mimic the action of dopamine in the brain. In early stages of Parkinson’s Disease, symptoms generally respond well to medications. Over time, the medications become less effective and may cause more side effects.

What treatments are researchers developing?

One experimental procedure to treat moderate to advanced Parkinson’s Disease is gene transfer, which involves neurosurgery to insert a gene into the brain, to lower the side effects of medications and to increase the effectiveness of medications. Note that no stem cells or fetal cells are used. The patient is sedated but remains awake. The scalp is numbed by injections of local anesthetics (like Novocaine), so the patient should not feel discomfort. The surgeon drills two small holes into the skull and injects a liquid containing the gene on each side of the brain into areas known to be affected in Parkinson’s Disease.

How would gene transfer surgery be tested?

To see if the gene transfer surgery is truly effective, investigators need to compare a group that receives the gene transfer surgery with a group that does not. People would be randomly assigned (e.g., by flipping a coin) to one of the two groups. This kind of study could be done in two ways.

  • An open study could be done, where everyone knows who has and who has not received the gene transfer. One half of the patients would receive their usual medications only. The other half would receive their usual medications plus the gene transfer surgery.

  • A blinded study could be done, where neither the patient nor the evaluating researcher knows who has and who has not received the gene transfer. One half of the patients would receive their usual medications plus gene transfer surgery. The other half of the patients would receive their usual medications plus “sham surgery.” Patients receiving sham surgery have the two small holes drilled into the skull. But the protective coverings in the brain are not disturbed, and there is no insertion of any material into the brain.

    In a blinded study, only the surgeon would know who has received the gene transfer surgery and who has received sham surgery. If the gene transfer surgery is found to be both safe and effective, those in the sham surgery group would have the option of receiving the gene transfer at a later date without cost, using the holes drilled during the sham surgery.

What are the risks of these studies?

For surgery patients in both an open study and a blinded study, the surgery poses potential risks. There is a 1% to 4% risk of bleeding into the brain (usually minor, but there is a less than 1% chance that it could result in death or substantial disability). There is also a 1% to 5% risk of infection developing in the skin or brain, which would be treated with antibiotics. Overall, the risk of bleeding and infection is smaller for sham surgery than for actual gene transfer surgery.

Those subjects receiving the gene transfer surgery would face additional risks, including the possibility of brain tumors, inflammation of the brain, and a worsening of the Parkinson’s Disease. Patients in pilot studies have been followed for only one year, so longer-term effects are not known.

What are the pros and cons of the two kinds of studies?

When deciding whether or not to adopt a new procedure, it’s important to get accurate, unbiased evidence. If we adopt a new procedure that is unsafe or ineffective, people will end up receiving unnecessary surgeries. If we fail to adopt an effective procedure, we miss the opportunity to offer people a treatment that could benefit them.

Most, but not all, researchers in the field believe that the blinded study, using sham surgery, would provide better quality data than the open study. These researchers worry that if people know which procedure they receive, the results of the study may be difficult to interpret because expectations of both the patient and the evaluating researcher can unintentionally bias the results.

However, some people, including some researchers, worry that a study using sham surgery may not be worth the risks and burdens. The patients with Parkinson’s Disease who get the sham surgery undergo a neurosurgical procedure that provides no benefit to them, while being exposed to the risks and burdens of the procedure. There is also the worry that people with moderate to advanced Parkinson’s Disease are vulnerable to exploitation because having a serious, incurable illness may put them in a desperate situation.

Now, you decide!

Imagine that you have moderate to advanced Parkinson’s Disease. You can do most things independently, but involuntary movements interfere with your routine activities. Daily chores take twice as long compared to people without Parkinson’s Disease. For some parts of the day, your movement is extremely slow and you need help with daily activities.

You are asked to participate in either an open study or a blinded (sham surgery) study. Which study would you choose to participate in?
  • Blinded study (sham surgery)
  • Open study
  • Would not participate

Researchers have found that only about 35% of the general population would choose, as you did, to participate in the blinded study. As reported in a 2008 article in the journal Movement Disorders, about 55% of the general population would choose the open study, and the remaining 10% said they would not participate.

When these same questions were posed to people who actually have Parkinson’s Disease, the response was quite different: 24.5% picked the blinded study, 41.5% picked the open study, and 34% said they would not participate. The researchers observe that patients with chronic illness adapt to their disabilities; the people with Parkinson’s Disease might have felt that they had less to gain or more to lose from the benefits and risks associated with a trial involving surgery. Alternatively, people without Parkinson’s Disease may have over-estimated the impact that disability might have on them or underestimated their ability to function.

In this study, people were also asked to imagine that they were members of an ethics review committee deciding whether to allow certain studies. About 81% of respondents said that they would definitely or probably allow the open study for gene transfer. 55% said that they would definitely or probably allow the blinded (sham surgery) study. These results were the same for both the general population and people with Parkinson’s Disease. In other words, a very large majority of both Parkinson’s patients and non-Parkinson’s patients endorsed the open study as ethically acceptable. A majority endorsed sham surgery as an ethically acceptable control condition.

In analyzing these results and reading the written remarks added by the respondents, the researchers comment, “Education seems to play a strong role in people’s willingness to take a more societal perspective and balance the burdens to participants with the overall scientific and societal benefit. . . Those opposed to sham surgery appeared to have an intrinsic objection to blinding, and to focus on the invasive nature of the sham surgery per se . . .Given the complexity of the topic, it may be that laypersons, especially those with less education, may need more opportunity to learn and deliberate on the issues.”

Interestingly, scientists researching Parkinson’s Disease were presented with these same questions in a related study (Kim SY, Frank S, Holloway R, Zimmerman C, Wilson R, Kieburtz K. Science and ethics of sham surgery: A survey of Parkinson disease clinical researchers. Arch Neurol 2005;62:1357-1360.) Only 50% of these clinical researchers would allow open studies, and 94% would support controlled studies using sham surgery.

In conclusion, “Future research needs to determine whether eliciting more considered judgments of laypersons would reveal different levels of support for sham surgery.”

For a complete discussion of this research, see Frank S, Wilson R, Holloway R, Zimmerman C, Peterson A, Kieburtz K, Kim SY. Ethics of sham surgery: Perspective of patients. Movement Disorders 2008;23(1):63-68. The senior author, Scott Y. Kim, MD, PhD, is a faculty member at the Center for Behavioral and Decision Sciences at the University of Michigan.

Read the article:

Ethics of sham surgery: Perspective of patients.
Frank S, Wilson R, Holloway RG, Zimmerman C, Peterson DR, Kieburtz K, Kim SY. Movement Disorders 2008;23:63-8.

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.