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Kayte Spector-Bagdady is an Assistant Professor in the Department of Obstetrics and Gynecology at the University of Michigan Medical School and the Service Chief of the Research Ethics Service in the Center for Bioethics and Social Sciences in Medicine (CBSSM). Her current research explores informed consent to emerging technologies with a focus on reproduction and genetics. Prof. Spector received her J.D. and M.Bioethics from the University of Pennsylvania Law School and School of Medicine respectively after graduating from Middlebury College.
Keynote Abstract: In some countries, governmental authorities have done little to prevent or punish violence against women. Examples of gender-based violence include not only intimate partner violence, but also rape as a weapon of war, civilian rape, and killing condoned in so-called "honor cultures." Can a theory of global justice shed light on whether external governments or non-governmental groups should take responsibility for remedying the situation? Who has the responsibility to respond to human rights violations?
The Bishop Lecture in Bioethics was jointly sponsored by the Bishop Lectureship in Bioethics fund and by the Center for Bioethics and Social Sciences in Medicine (CBSSM).
- Click here for the videorecording of the 2013 Bishop Lecture.
Joel D. Howell is a Professor at the University of Michigan in the departments of Internal Medicine (Medical School), Health Management and Policy (School of Public Health), and History (College of Literature, Science, and the Arts), as well as the Victor C. Vaughan Professor of the History of Medicine. He received his M.D. at the University of Chicago, and stayed at that institution for his internship and residency in internal medicine. At the University of Pennsylvania, he was a Robert Wood Johnson Clinical Scholar, and received his Ph.D. in the History and Sociology of Science.
Could you cope and find happiness if you were living with paraplegia? Think about what it would be like to have paraplegia and to imagine the impact of this disability on your life. Although some aspects of your life will become more difficult, there are ways to make your daily life a little easier.
List something that would help you to adapt physically if you had paraplegia. (For example, if you lost your eyesight, you could learn Braille, and/or use a cane). Just as there are ways to help you to adapt physically to paraplegia, there are also ways to help handle the immediate and long-term emotional reactions. List a strategy that you would use to emotionally cope with having paraplegia.
Please think about the two most upsetting things about developing paraplegia. Do you think these two things would become more or less upsetting over time?
- More upsetting over time
- Less upsetting over time
- Equally upsetting over time
Please rate paraplegia on a scale from 0 to 100, where 0=quality of life as bad as death and 100=quality of life as good as perfect health.
How do your answers compare?
Those who were given the adaptation exercise rated paraplegia much higher, 62. That means considering adaption tends to have people look more favorably on paraplegia than they otherwise would. For most people, the adaptation exercise resulted in higher ratings. Let's take a closer look at the actual study and explore the importance of considering adaptation.
A discrepancy in perceptions of quality of life
When people first think about a disability, it might seem pretty catastrophic. At first glance, you might think that people living with paraplegia must be miserable. Patients who actually have paraplegia, however, report their quality of life to be significantly better than the public estimates that it would be. It appears, then, that there is a discrepancy between the self-rated quality of life of people with paraplegia, and healthy people's estimates of what their quality of life would be if they had this condition.
Why this discrepancy?
CBDSM director Peter Ubel teamed up with researchers Christopher Jepson and George Loewenstein to conduct a series of studies that aimed to explain why this discrepancy exists. Past research has suggested that patients do not overestimate their good mood, which led the researchers to hypothesize that, in fact, non-patients truly underestimate the quality of life experienced by people with disabilities. The researchers speculated about two explanations that could account for this underestimation. One possibility is that non-patients may be subject to a focusing illusion. That is, they might fail to appreciate that not all life domains or life events will be affected by the disability. Another possibility is that non-patients may be failing to consider adaptation, unable to realize how their feelings and their ability to cope will change over time.
In one study, each subject received one of several defocusing tasks in addition to rating paraplegia. For example, one of these tasks asked subjects to rate how much better or worse their life would be with regards to eight specific life events (e.g., visiting with friends). Another task asked subjects to think of five events that took up the largest amount of their time the preceding day and to rate how much better or worse these events would be if they had paraplegia. In a second study, subjects received one of several adaptation exercise in addition to rating paraplegia. One of these was similar to what you read on the previous page, although more extensive. Another had subjects consider their quality of life both 1 month and 5 years after developing paraplegia. In both studies, sujects rated paraplegia either before and after or only after completing an intervention.
The researchers found that none of the defocusing tasks had any effect on ratings of paraplegia. In fact, these tasks actually caused many participants to give lower ratings than they would have otherwise. All of the adaptation exercises, on the other hand, increased subjects' ratings of paraplegia. Taken together, these results support that the tendency of nonpatients to underestimate the quality of life associated with disabilities is not the result of a focusing illusion, but rather the result of failure to consider adaptation.
Read the article:
Disability and sunshine: Can predictions be improved by drawing attention to focusing illusions or emotional adaptation?
Ubel PA, Jepson C, Loewenstein G. American Journal of Psychiatry 2005;11:111-123.
Funded by Health and Human Services, Department of-National Institutes of Health
Funding Years: 2013 - 2015.
With the aging of society and restructuring of families, it is increasingly important to understand how individuals become disabled. New disability is associated with increased mortality, substantial increases in medical costs (often borne by public payers), and a heavy burden on families and caregivers. While the disablement process?as theorized by Verburgge & Jette and their successors?has traditionally been seen as chronic and gradual, there is increasing recognition that acute events play a critical role in disability. Medical illnesses are not the only potentially disabling events. NIA & NINR recently posted PA-11-265, calling for ?Social and Behavioral Research on the Elderly in Disasters? in recognition that natural disasters are common, but we know little about their impact on health and disability. The National Research Council?s Committee on Population published a report in 2009 documenting not only our ignorance in this area, but, importantly, the potential value of studying disasters to understand fundamental processes in disability and health.
Our long-term research agenda is (a) to test the hypothesis that natural disasters cause enduring morbidity for survivors that is not fully addressed by existing health and welfare programs, and (b) to discover remediable mechanisms that generate that enduring morbidity. Here we propose a nationwide test of the association of living in a disaster area with individuals? long-term disability and health care use. To perform this test, we will combine the unique longitudinal resources of over 16,000 respondents in the linked Health and Retirement Study (HRS) / Medicare files with a newly constructed mapping of all FEMA disaster declarations between 1998 and 2012. We will address key gaps in the existing literature of detailed single-disaster studies with a generalizable perspective across time and space via these Specific Aims:
AIM 1: Quantify the association between the extent of a disaster ? measured as the repair cost to public infrastructure and increases in level of disability among survivors. We will follow respondents for an average of 5 years after the disaster. AIM 2: Quantify the association between the extent of a disaster and increases in the likelihood of hospitalization among survivors. AIM 3: Test the hypothesis that increases in level of disability and likelihood of hospitalization after disasters are worse for those living in counties with higher levels of poverty.
This proposal is specifically responsive to PA-11-265. This proposal is innovative because long-term effects of disasters, particularly for vulnerable older Americans, have been systematically neglected in previous research. It is significant because it will address the public health consequences of a relatively common but understudied exposure. Further, a key contribution of this R21 will be to evaluate the feasibility of the National Research Council conjecture that natural disasters can be studied as exogenous shocks to the environment, and that we can thereby test and elaborate usually endogenous mechanisms in the development of disability.
PI(s): Theodore Iwashyna
Co-I(s): Kenneth Langa, Yun Li, Anne Sales
I serve as Professor of Family Medicine, Director of Japanese Family Health Program, and Co-Director of the Michigan Mixed Methods Research and Scholarship Program at the University of Michigan. In addition to being a family/general doctor fluent in Japanese, I have long been interested in the influence of culture on medical decision making and ethics, and have conducted numerous health research projects, and published numerous papers in English and Japanese.