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2016 Bishop Lecture featuring William Dale, MD, PhD

Wed, April 27, 2016, 10:30am
Location: 
Founders Room, Alumni Center, 200 Fletcher St., Ann Arbor, MI

The 2016 Bishop Lecture in Bioethics was presented by William Dale, MD, PhD, Associate Professor of Medicine; Chief, Section of Geriatrics & Palliative Medicine; and Director, Specialized Oncology Care & Research in the Elderly (SOCARE) Clinic at the University of Chicago. Dr. Dale presented, "Why Do We So Often Overtreat, Undertreat, and Mistreat Older Adults with Cancer?" The Bishop Lecture served as the keynote address during the CBSSM Research Colloquium.

Abstract: The US health care system is being confronted with the consequences of aging as the baby-boomers join Social Security and Medicare, with cancer care front-and-center.  Two recent IOM reports, Retooling for an Aging America and Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis, highlight these intersecting areas.  Delivering high quality care for older adults with cancer, at an affordable cost, in a transforming health delivery system will be addressed from a personal, clinical, and policy perspective.

William Dale, MD, PhD, is an Associate Professor of Medicine and the Section Chief of Geriatrics & Palliative Medicine at the University of Chicago, with a secondary appointment in Hematology/Oncology.  He is a board-certified internist and geriatrician with a doctorate in health policy. He completed his medical and graduate school training at the University of Chicago, did his residency in internal medicine and fellowship in geriatrics at the University of Pittsburgh, and then returned to the University of Chicago.

Dr. Dale has devoted his career to the care of older adults with cancer.  In 2006, He established, and now co-directs, the Specialized Oncology Care & Research in the Elderly (SOCARE) Clinic at the University of Chicago. SOCARE offers interdisciplinary, individualized, and integrated treatment for older cancer patients. It provides a special environment for addressing the issues relevant to older cancer patients and their loved ones and integrating research into this special clinic environment.

Dr. Dale is an international speaker who has published over 50 papers in top journals on medical decision making, behavioral economics, quality of life, and frailty assessment in older adults, particularly those with cancer. He and his team have shown the important role emotions like anxiety play in medical decisions for older adults. He has received grants from the National Institute on Aging (NIA), National Cancer Institute (NCI), American Cancer Society, and the Foundation of Informed Medical Decision Making. With NIH funding, he has co-led a series of national conferences with international experts on geriatric-oncology.  He is a co-investigator for the National Social Life, Health, and Aging Project (NSHAP), a survey and biomeasure collection on the health, well-being, and social life of over 3,000 older adults.

  • Click here for video-recording of the 2016 Bishop Lecture

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.

Wed, February 03, 2016

Beth Tarini, MD, MS and colleagues are back in the news regarding their 2013 article in Pediatrics entitled, “Blindness in Walnut Grove: How Did Mary Ingalls Lose Her Sight?” Their article was cited in CNNCBS NewsNew York TimesAnnarbor.com and many others. 

Citation: Allexan SS,  Byington CL, Finkelstein JI, Tarini  BA (2013 ). "Blindness in Walnut Grove: How Did Mary Ingalls Lose Her Sight?" Pediatrics; DOI: 10.1542/peds.2012-1438 [Epub ahead of print]

Research Topics: 

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 results...support 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.

 

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

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

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

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

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

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

How do your answers compare?

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

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

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

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

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

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

The authors of this study conclude:

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

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

Online: http://mdm.sagepub.com/cgi/content/abstract/28/5/763

More information:

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

 

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.

Is it disgusting? (May-08)

People vary in their attitudes toward physical disabilities. Give us your reactions, and we'll tell you the results of surveys of the general public--and of actual patients.

 

Strongly

disagree

Mildly

disagree

Mildly

agree

Strongly

agree

I try to avoid letting any part of my body touch the toilet seat in a public restroom, even when it appears clean.

1

2

3

4

It would make me uncomfortable to hear a couple making love in the next room of a hotel.

1

2

3

4

It would bother me tremendously to touch a dead body.

1

2

3

4

Even if I were hungry, I would not eat a bowl of my favorite soup if it had been stirred by a used-but thoroughly washed- fly-swatter

1

2

3

4

I am bothered by the odor caused by passing gas.

1

2

3

4

The smell of other persons' bowel movements disgusts me.

1

2

3

4

Consider the following

Now we'd like you to think about a specific health condition. Please read this scenario carefully so that you can answer some questions. Imagine you have a colostomy. A colostomy is an operation involving the surgical redirection of your bowels through a hole created in your gut. This hole is called a stoma. Waste passes through your intestines and out the stoma into a bag, which you must empty several times a day. If you wear relatively loose clothing, this bag won't be visible underneath your garments. Occasionally, you'll experience odors and noises caused by gas and waste passing through the stoma into the bag. There's also the chance that the colostomy bag may leak if it's allowed to fill past capacity. Although you'll be restricted from lifting very heavy objects, your daily activities won't otherwise be greatly affected by the colostomy.

To what extent does your colostomy make you feel embarrassed or socially uncomfortable?
Not at all 1       2       3       4       5       6       7       8       9        10 Very Much
 
To what extent does your colostomy make you feel stigmatized?
Not at all 1       2       3       4       5       6       7       8       9        10 Very Much
 

How do your answers compare?

Do your responses to the six questions on the disgust scale correlate with the stigmatization you expressed related to your imaginary colostomy?

In their national survey of the general public (people without colostomies), CBDSM researchers found that people who reported a higher level of disgust sensitivity responded more negatively to colostomy.

Current and former colostomy patients were also surveyed. In these groups, patients with higher disgust sensitivity had more difficulty adjusting to life with a colostomy. Specifically,colostomy patients with higher disgust sensitivity felt more stigmatized in society by their colostomy and felt more bothered by colostomy symptoms, such as leakage. Dr. Dylan Smith and his colleagues postulate that people who have a pre-existing high sensitivity to disgusting stimuli will be less likely to adjust well to life with a colostomy. Alternatively, it could be that people who adjust successfully to a colostomy do so in part by reducing their sensitivity to certain kinds of disgusting stimuli.

If future studies show that we can predict that patients with high disgust sensitivity are likely to have more difficulty adjusting to a colostomy, health-care teams can then seek ways to de-sensitize responses to bowel functioning, in order to aid patients in their adaptation to life with a colostomy. Further, many people with inflammatory bowel syndrome can choose whether or not to have a colostomy for relief of their symptoms. For these patients, a clear understanding of disgust sensitivity could be a factor in helping to make an informed choice about elective colostomy.

Certainly this research suggests that disgust plays a role in perceived and actual stigmatization of disabled patients. Previous studies of patients' adjustment to disability have focused on general responses to adversity, taking into account their social support, their coping style, or their optimism, for example. The uniqueness of this recent CBDSM study is that it considers how the specific challenges of a disability interact with a personality trait relevant to that disability: disgust sensitivity. This personality trait might also be linked to other health conditions, such as amputation or incontinence. In addition, personality traits other than disgust might affect patients' adaptation to other disabilities.

Read the article:

Sensitivity to disgust, stigma, and adjustment to life with a colostomy
Smith DM, Loewenstein G, Rozin P, Sherriff RL, Ubel PA. Journal of Research in Personality 2007;41(4):787–803.

The Disgust Scale used here is adapted from the work of Haidt J, McCauley C, Rozin P. Individual differences in sensitivity to disgust: A scale sampling seven domains of disgust elicitors. Personality and Individual Differences. 1994; 16(5): 701-713.

 

Michael Volk, MSc, MD

Alumni

Michael Volk was an Assistant Professor of Medicine in the Division of Gastroenterology and Hepatology at the University of Michigan. His clinical practice focuses on the care of patients with liver disease, including those undergoing liver transplantation and those with hepatocellular carcinoma. His research interests focus on the ethics of resource allocation, patient and physician decision making, and chronic disease management. In particular, he has conducted a series of studies designed to improve the way decisions are made about using high risk liver transplant organs.

Last Name: 
Volk

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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