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Thu, September 24, 2015

Sarah Hawley, Ph.D., professor of internal medicine, is featured in "Hour Detroit" discussing BRCA1 and BRCA2 mutations and the subsequent odds of developing breast cancer later in life. For women who test positive for either mutation, the conventional recommendation is to have preventive surgery.

Research Topics: 
Tue, September 29, 2015

Jeffrey Kullgren was invited to write a piece for the Measuring Costs and Outcomes in Health Care, a six-week online forum designed to explore cutting-edge ways to improve quality and reduce waste, co-sponsored by the Harvard Business Review and the New England Journal of Medicine. Dr. Kullgren’s article focused on "How to Teach People About Healthcare Pricing".

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.

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.

Fri, April 10, 2015

Dr. Jagsi was interviewed by MedicalResearch.com, discussing her study which finds many breast cancer patients have an unmet need to discuss genetic testing with their healthcare provider. The study found that 35 percent of women with breast cancer expressed a strong desire for genetic testing, but 43 percent of those women did not have a relevant discussion with a healthcare professional. "By more routinely addressing genetic risk with patients, we can better inform them of their true risk of cancer returning or of developing a new cancer," Dr. Jagsi explains in the interview. "This could potentially alleviate worry and reduce confusion about cancer risk."

CBSSM Seminar: Jacob Solomon, PhD

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

Jacob Solomon, PhD


CBSSM Postodoctoral Fellow

Title:

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

Abstract:

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

"Still Alice" Film Screening & Moderated Discussion

Thu, October 15, 2015, 7:00pm to 9:30pm
Location: 
Forum Hall, Palmer Commons

"Still Alice" Film Screening & Moderated Discussion

Free Admission

Moderator:    Raymond De Vries, PhD

Panelists:     Nancy Barbas, MD
                  J. Scott Roberts, PhD

Refreshments provided.

Based on Lisa Genova’s bestselling novel. In an Oscar winning performance, Julianne Moore plays Alice Howland, a renowned neurolinguistics professor at Columbia University who is diagnosed with familial, early onset Alzheimer’s Disease. The film provides insight into the patient’s perspective and the challenges patients, families, and caregivers face. The film also raises important bioethical questions related to patient autonomy, genetic testing, and personhood in the face of dementia.

Thu, September 10, 2015

Beth Tarini, associate professor of pediatrics and communicable diseases, is launching a study to see whether the martial art of tae kwon do could be an effective therapy - or even an alternative to prescription medication - for kids with attention deficit/hyperactivity disorder. Dr. Tarini is working with Master Dan Vigil on the “Martials Arts as ADD/ADHD Treatment Trial (aka the MAAT Trial)”

She is using the online crowdfunding site Crowdrise to raise money  for the research.
 

Research Topics: 

CBSSM Seminar: Kayte Spector-Bagdady, JD

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

Kayte Spector-Bagdady, JD


CBSSM Postdoctoral Fellow

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

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

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