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CBSSM Working Group Meeting- Leslie Skolarus, MD

Tue, April 10, 2018, 4:00pm
Location: 
NCRC bldg 16 266C

Acute stroke treatments are highly effective and very timesensitive (ie. Time is brain).  One barrierto timely treatment is tpa discussion induced delay/refusals. Based onqualitative data from a safety net hospital we think this is due to: 1) lowhealth literacy of the patient population and 2) physician framing of theconversation that may overemphasize the risks. We are seeking to build patientand provider guides to expedite the discussion.

CBSSM Working Group Meeting-Tanner Caverly, MD

Tue, March 06, 2018, 4:00pm
Location: 
NCRC bldg 16 266C

Tanner is seeking feedback on patient vignettes designed to be realistic and vivid, to help us test how different types of vignettes (activated patient vs.not; complex patient vs. not) influence the way oncologists, nurses, and other cancer care team providers use a new web-application we are developing called the “Patient data dashboard.” This dashboard aims to integrate different health technologies to improve the patient experience of cancer care.

CBSSM Working Group Meeting- Lesli Skolarus

Tue, April 10, 2018, 4:00pm
Location: 
NCRC-16 266C

Acute stroke treatments are highly effective and very time sensitive (ie. Time is brain).  One barrier to timely treatment is tpa discussion induced delay/refusals. Based on qualitative data from a safety net hospital we think this is due to: 1) low health literacy of the patient population and 2) physician framing of the conversation that may overemphasize the risks. Lesli will be seeking input to build patient and provider guides.

CBSSM Seminar: Geoffrey Barnes, MD

Tue, October 30, 2018, 3:00pm
Location: 
NCRC, Building 16, 266C

Geoffrey Barnes, MD
Assistant Professor, Internal Medicine

Title: Peri-endoscopy Antithrombotic Management: Using Systems Engineering to Improve Clinical Decision-Making

Abstract: Surgical procedures, such as gastrointestinal endoscopy, present management challenges for patients taking chronic antithrombic medications. Following an in depth analysis of current practices, we re-organized care delivery to standardize clinical decision making for these patients using health systems engineering and implementation science methods.

CBSSM Seminar: Amy Pienta, PhD

Tue, November 27, 2018, 3:00pm
Location: 
NCRC, Building 16, 266C

Amy Pienta, PhD
Research Scientist and Director, Business and Collection Development
ICPSR, University of Michigan

Title: Sharing, Finding, and Using Health Data at ICPSR

 

The focus of the presentation includes - 1) discussing the importance of data-sharing,  2) reaching out to investigators who may be interested in depositing their data, and 3) introducing investigators to data that are available in the ICPSR repository.

 

CBSSM Working Group Meeting - Eric Weinlander

Wed, August 15, 2018, 4:00pm
Location: 
NCRC bldg 16 B003E

Eric is second-year ophthalmology resident seeking advice on a medical ethics research project concerning patient selection practices for high-risk ocular surgery.  Eric would like to develop a quantitative survey of ophthalmologists that would give insight into the actual decision-making behind patient selection. Eric will be seeking guidance in the particulars of defining an ethics questions amenable to surveys, and then designing a survey to answer the question.

CBSSM Working Group Meeting-Jacob Kurlander, MD

Tue, September 11, 2018, 4:00pm
Location: 
NCRC bldg 16 266C

Jacob Kurlander, MD, of the Dept. of Gastroenterology, Internal Medicine, previously presented a survey on patient perceptions of PPI harms to the group for feedback. They have since analyzed the results and are in the process of revising and resubmitting the resulting article to the American Journal of Gastroenterology. Jacob will be seeking feedback from the group on how to respond to some of the reviewers’ comments.

When Money is Tight (Jul-04)

Because of the high cost of many prescription drugs, some people take fewer pills than prescribed. What are the health implications?

Imagine that four months ago, you started getting chest pains whenever you exerted yourself physically, and at the time you decided this was serious enough to see a doctor. After your doctor examined you and ran some tests, you were told that you have angina, a kind of heart disease. This disease can develop when the coronary arteries become narrow and clogged from high cholesterol and the heart can't get the oxygen that it needs. Your doctor helped you plan some lifestyle changes to treat your condition. You have been very devoted to the new way of life, eating healthier and doing the proper kinds of exercise regularly. Also, part of your treatment involves regularly taking the medication that your doctor prescribed for you. You were told to take one pill each day.

The trouble is your prescription drug insurance is limited and you find yourself having to pay the majority of the cost for the angina medication out of pocket. What's more, you have been struggling just to break even every month after accounting for all of your living expenses. Now you are worried about being able to afford the medication if you take it as regularly as prescribed. A pill a day may be doctor's orders, but it is getting costly for you.
 
Would you take the pill as often as prescribed or would you skip some days to try to save money?
 
  • I would take the pill every day as prescribed.
  • I would skip some days to save some money.

How do your answers compare?

You have to save money somehow, right? Perhaps you would just have to cut back on other expenses in your life, but apparently you felt the medication had to be taken as prescribed. Research has found, however, that especially among the elderly, a significant portion of the population reports restricting medications due to cost. An important question is whether this leads to adverse health outcomes. Policy debates have been largely divided on this issue.

Do those who restrict their medications due to cost experience adverse health outcomes?

A research team led by Dr. Michele Heisler and Dr. Kenneth Langa conducted a study to investigate this question. Prior to this study, no one had examined this question by studying the same individuals at different points in time to see if those who restricted medication due to cost were more likely to develop adverse health outcomes. The researchers obtained nationally representative data that was the result of nearly 8000 interviews. Each respondent was interviewed in 1995 or 1996 and then re-interviewed in 1998. At both times, individuals were asked about cost-related medication restriction and about their health. The health questions assessed overall health, angina and other cardiovascular diseases, diabetes, arthritis, and depression.

The researchers found that cost-related medication restriction was associated with almost twice the odds of experiencing a significant decline in overall health. The association between restricting medication due to cost and poor health outcomes was strongest for those who had cardiovascular disease. Of these individuals, those who restricted their medication had a 50% increased odds of suffering angina and a 51% increased odds of having a stroke. Aren't you glad on the previous page you said you wouldn't restrict your angina medication?

Those who had arthritis or diabetes and restricted their medication due to cost did not report worse disease-related outcomes at the second interview. For arthritis, this might have been because of equally effective over-the-counter pain medications, and for diabetes, higher rates of kidney disease would likely require a longer period of follow-up to detect. When looking at age as a factor, the results showed that older adults experienced significant declines in overall health, worse cardiovascular outcomes, and increased depression. The study showed that younger people who restrict are also at risk for a decline in their health.

One limitation of this study is the lack of data about how often individuals restricted medications. If an individual restricted only once or twice, it is not clinically plausible that this would have led to an adverse health outcome. Also, the data on health outcomes were self-reported, and thus subject to bias. Previous studies, however, have shown excellent agreement between medical records and self-reports for conditions such as hypertension, diabetes, and stroke.

Implications on policy

This study provides evidence that, contrary to some claims, adults with chronic illnesses who restrict medications due to cost experience adverse health outcomes. As drug costs continue to escalate and individuals continue to lack full prescription coverage from their health insurance, it will be increasingly important for healthcare systems and physicians to develop strategies to screen patients for cost-related underuse of medications and to provide assistance to these patients. Moreover, insurance companies will need to create benefit packages that provide appropriate coverage, taking into account the cost of prescription medications.

For more information see:

Michele Heisler, Kenneth M. Langa, Elizabeth L. Eby, A. Mark Fendrick, Mohammed U. Kabeto, John D. Piette. The Health Effects of Restricting Prescription Medication Use Because of Cost. Medical Care, 42(7). 2004.

Sorry, Doc, that doesn't fit my schedule (Feb-04)

Patients sometimes skip treatments because they just feel too busy. What should physicians do when their patients ignore their recommendations?

Imagine you are a businessperson who works long hours and you are on your way up to having a successful and lucrative career. You have a major business deal that will consume nearly all of your time over the upcoming month and your boss is relying on you to make sure the deal goes through. This is your chance to really make your mark and show your corporation that you are the kind of person that can handle deals as big as this one. Also suppose you have been smoking on and off for 25 years. You know it's a bad habit that could destroy your lungs, but you just can't quite kick it. Lately, you have been feeling tired, you have been experiencing chest pains when you are really busy at work and when you exercise, and you have had trouble breathing when climbing a flight of stairs. The chest pains are usually relieved by a little rest, but you decide it's time to get this examined by a doctor.

One day after work, you go to see Dr. Coral, who gives you a stress test and determines that you'll need an appointment for an angiogram to better evaluate your coronary arteries. Fortunately, you find one free day right before things get hectic at work, so you schedule the angiogram. Now imagine you have just had the angiogram and you are recovering in a paper gown waiting for Dr. Coral to come back with the results. Dr. Coral enters the room to speak with you and he has a serious look on his face. He says,

"I have both good and bad news for you. The angiogram shows that your 3 main coronary arteries are all severely blocked. The good news is that we caught this before you had a major heart attack."

"The bad news is that I am recommending you have triple bypass surgery as soon as possible. Your heart is working overtime, and it is just a matter of time until it gives out."

The news is shocking, but in addition to your health concerns, you also have the business deal to worry about. This deal is an opportunity to make a name for yourself, and your boss has been very vocal that he was counting on you, trusting that you'd be the one for the job. You find yourself having to weigh your work ambitions against the recommendation from Dr. Coral because if you get surgery, there is no way you'd be able to take on your current work responsibility.
 
Which of the following decisions would you be most likely to make?
 
  • I would put aside Dr. Coral's recommendation and instead take responsibility at work for the current deal. I'll wait to have surgery in about a month.
  • I would follow Dr. Coral's recommendation by having surgery immediately, even though this forfeits the current opportunity at work.

A little feedback on what you chose.

It's not that physician's don't care about your other values, but they are primarily concerned about your health, and you might not even have lived long enough to finish the business deal if you didn't have this surgery immediately. This does, however, bring up an important fact: patient's do sometimes reject their physician's medical judgment, and it can be at a great cost to their health.
 
Why should a patient be part of the decision-making process?
 
Why shouldn't Dr. Coral just tell you that you need surgery and leave no alternative? Efforts to share decision-making with patients are important because they acknowledge patients' rights to hold views, to make choices, and to take actions based on personal values and beliefs. In addition to being ethically-sound, this shared decision-making process also leads to improved patient health outcomes.
 
What can a physician do to help the patient choose surgery?
 
To answer this question, first it needs to be emphasized that in order for a patient to be able to participate in the decision-making process, the patient must be able to soundly make decisions. This sounds abstract and subjective, but it can be broken down into something a little more concrete. Decision-making capacity (DMC) is based on four guidelines:
 
The patient is able to:
 
  • understand the information about the condition and the choices available;
  • make a judgment about the information in keeping with his or her personal values and beliefs;
  • understand the potential outcomes or consequences of different choices; and
  • freely communicate his or her wishes
Based on these four elements, it is possible to see what a physician can do to help facilitate a "good" health decision. In order to make sure a patient fully understands the situation, a physician can ask him or her to state their understanding of the problem and of the treatment options. Also, a physician should use clear and unambiguous language with the patient at all times. Although a report might be quite clear from a physician's perspective, a patient might not be as clear about all the details. In the situation you were asked to imagine, Dr. Coral should tell you that you will die without this surgery and that waiting is not a safe option.
Also, there might be other factors keeping a patient from following a physician's recommendation. Again, in your hypothetical situation, your boss was putting a lot of pressure on you not to let him down. Also, this decision would potentially have an effect on your advancement at work. You might not have felt free to elect surgery even if you knew it was the only good decision for your health. By directly acknowledging and addressing a patients' concerns, physicians may facilitate a decision for the surgery.
 
In conclusion, if a physician feels that a patient is not able to fulfill one or more of the elements of DMC then his or her ability to make that decision should be brought into question and surrogate decision makers should be sought. For more serious decisions, the standards for DMC should be higher than for less important decisions or those with less significant outcome differences among the choices.
 
For more information see:

 

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.

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