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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.

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4

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

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It would bother me tremendously to touch a dead body.

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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

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I am bothered by the odor caused by passing gas.

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The smell of other persons' bowel movements disgusts me.

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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.

 

Funded by the NIH

The overarching goal of our research is to improve opioid analgesic safety and efficacy by optimizing opioid risk recognition, informed analgesic decision-making, and drug storage/disposal behaviors among parents of youth who are prescribed these agents for home use. With this proposal, we aim to demonstrate that our Scenario-Tailored Opioid Messaging Program (STOMP?) will: 1) Improve parents' opioid risk understanding and their analgesic decision-making; 2) Enhance parents' analgesic self-efficacy, analgesic use, storage behaviors and their children's pain outcomes, and 3) To demonstrate that the STOMP? plus provision of a method to get rid of left-over medications will effectively nudge parents to safely dispose of left-over opioid analgesics. For more info: http://grantome.com/grant/NIH/R01-DA044245-01A1

PI: Terri Lewis-Voepel

CBSSM Co-Is: Brian Zikmund-Fisher & Alan Tait

Mon, June 23, 2014

Brian Zikmund-Fisher was interviewed by Reuters Health for the article "Shared decision making still lacking for cancer screening." He discusses his research and trade-offs in cancer screenings. "What this study does is it shows that despite all of the initiatives and the discussion of shared decision making that has been going on, we don't seem to be moving the needle very much," he states. 

His interview also received press in the Chicago Tribune and New York Daily News.

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

Megan Knaus, MPH

Research Associate

Megan joined CBSSM in 2014 and has worked on multiple grant funded research projects related to health communication, patient-provider decision making, and health interventions driven by behavioral economics. She currently works with Dr. Brian Zikmund-Fisher on a National Science Foundation grant testing infectious disease communication strategies.

Last Name: 
Knaus
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: 
Mon, January 06, 2014

Dr. Reshma Jagsi worked on a study detailing the decline of US research spending versus the increase in spending in Japan and China. In the UMHS article, she says, "The United States has long been a world leader in driving research and development in the biomedical science. It's important to maintain that leadership role because biomedical research has a number of long term downstream economic benefits, especially around job creation," 

Research Topics: 

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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