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Supporting information for: 2016 CBSSM Research Colloquium and Bishop Lecture (William Dale, MD, PhD)

Katrina Hauschildt, MA, PhD Candidate, Department of Sociology: “Language and Communication as Professionalization Projects in Clinical Ethics Consultation”


Although sociologists have examined the field of bioethics broadly, less empiric research has explored the process of clinical ethics consultation (CEC) in practice. This paper seeks to describe how UMHS’ CEC service focuses on communication, language, and terminology in professionalizing their membership and broadening the scope of their services. The CEC service established a specific communication standard for its written recommendations that emphasizes specificity and clarity for patients and their families, other providers, and members of the ethics committee. By identifying and reinforcing the importance of language and word choice in their own recommendations, newer members of the CEC are “trained” in how to craft recommendations, develop a specific jargon, and establish communication standards that differ from those used in other aspects of medical practice and documentation. The CEC service is often involved in addressing a variety of communication issues that arise in patient care, and these problems are thusly considered within the professional scope of the CEC service. By establishing the CEC service as an appropriate resource for dealing with communication issues between patients and their care team, the CEC service expands the professional boundaries of their work beyond strictly ethical expertise. The implications of these processes for professionalization and communication may be applicable to CEC services more broadly.


Devan Stahl, PhD, Assistant Professor of Clinical Ethics, Center for Ethics and Humanities in the Life Sciences, MSU: "Is there a right not to know?"


There is a widespread presumption within medicine that terminally ill patients have a “right not to know” their prognosis. Guidelines for giving bad news (SPIKES; ABCDE) all require that the patient be asked first. There may be a dark side to this practice, however: terminally ill patients’ ignorance or denial of their prognosis too often lasts to the very end, one important factor discouraging timely referral and use of palliative and hospice care. Because of a possible link between a right not to know one’s prognosis and the aggressive treatment that patients with advanced illness too often receive at the end of life, the claim that there is a right not to know needs much more serious examination than it has received.

The authors argue that patients with advanced illness do not have a right not to know their prognosis. Withholding prognostic information in deference to a right not to know impedes patients’ capacity to make informed autonomous decisions about their treatment, encourages denial, and increases the likelihood of poor end of life care.

Chithra Perumalswami, MD MSc, Robert Wood Johnson Foundation/Veterans Affairs Clinical Scholar: "Insurance Status of Elderly Americans and Location of Death"


Context:  The decision to forego curative treatments (which includes the Medicare Skilled Nursing Facility Medicare benefit) is not financially neutral for terminally ill patients who do not have concurrent insurance (Medicaid or private insurance) in that they are subsequently asked to pay for room and board of the nursing home if they choose the Medicare hospice benefit.  The association between insurance status and location of death is currently unknown.  
Purpose: To determine whether the concurrent insurance status with Medicare (Medicaid vs. private insurance) of decedents is associated with location of death in a nationally representative survey of elderly Americans.
Methods: Longitudinal analysis of 7,979 decedents aged 50 years or older in the Health and Retirement Study from 2000-2010 (6 biennial waves). We examined associations between insurance status and location of death (home, hospital, nursing home, hospice) using multinomial logistic regression models and adjusting for demographic, socioeconomic, and clinical variables.
Results:  Decedents with dual eligible insurance before or at the time of death were significantly more likely to die in a nursing home than to die in a hospital (relative risk ratio (RRR) 2.6; 95% CI, 1.9-3.6, p<0.001). 
Those dying in a nursing home tended to be unpartnered (widowed, separated or divorced, never married), cognitively impaired or with dementia. Elderly Americans less likely to die in a nursing home were blacks and Hispanics, individuals with cancer, and those with the highest wealth.
Conclusions:  Dual eligible patients are substantially more likely to die in a nursing home than a hospital, and therefore may miss out on valuable services at the end of life, including hospice care. This study may have several implications for current proposed Medicare policy changes to allow patients access to both curative care and hospice care at the same time. 

Lauren B. Smith, MD, Associate Professor, Department of Pathology/Ginny Sheffield, UM Medical Student (M3): "Special treatment for the VIP patient:  Is it ethical?  Is it dangerous?"


The care of VIP patients is often prioritized at medical centers and this prioritization may lead to disparate access to care and patient safety issues. VIP patients may be donors, celebrities, or other physicians. Allowing VIP patients access to earlier care or “special treatment” not only raises social justice issues, but also has been shown to lead to medical error and suboptimal treatment. Ethical considerations will be discussed and recommendations will be presented.

Naomi Laventhal, MD, MA, Assistant Professor, Department of Pediatrics and Communicable Diseases: "Roman Charity Redux: The Moral Obligations of the Breastfeeding Physician"


Female physicians must often reconcile the seemingly contradictory goals of valuing the health and well-being of their patients above all else, and actively mothering young children. One of the fundamental ethical precepts in medicine is for the physician to put the best interests of her patient ahead of her own.  For example the Fellowship Pledge of the American College of Surgeons states, “I pledge . . . to place the welfare and the rights of my patient above all else.” The challenge of weighing the needs of one’s own children against those of a patient is painfully acute for the breastfeeding physician. Is it ethically permissible to leave a busy clinic - or a patient in the under anesthesia in the operating room - in order to express breastmilk? Pragmatic strategies, such as mandates for appropriate space and time to pump, offer modest gains. However, we will suggest the need to re-envision the concept of “patient-first”, which is a vestige of the patriarchal hegemony that gave rise to our modern medical ethos, whereby nursing mothers are highly disadvantaged and virtually unable to reach the highest moral ideals of the profession.  Is the “right” to breastfeed absolute, or if should it be superseded by the needs of the patient? We will explore whether this issue is deeply personal, to be reconciled by affected individuals, or warrants an “outside-in” approach in which  physicians and bioethicists collectively and more philosophically consider whether and how to support women who choose to work and breastfeed.

Archana Bharadwaj, Graduate Student, UM School of Public Health: "Patient understanding and satisfaction regarding the clinical use of whole genome sequencing: Findings from the MedSeq Project"


Background: The expanded use of Whole Genome Sequencing (WGS) has generated excitement due its potential to tailor medical treatment. However, clinical use of WGS poses challenges for informed consent and disclosure of results. Few empirical studies have examined patients’ understanding of and satisfaction with the clinical communication of WGS results.
Methods: The MedSeq Project is a randomized clinical trial examining the impacts of WGS in primary care and cardiology. We analyzed survey data from patients’ initial enrollment and at multiple time points following physician disclosure of results. Domains of interest included understanding of informed consent, subjective understanding, satisfaction with communication of results, and decisional regret.
Results: Survey responses were provided by 202 participants (mean age = 55 years; 51% male; 80% college graduates). At enrollment, participants understood the majority of key facts about the study (mean = 19.6 / 22 items answered correctly), although some incorrectly answered items addressing results to be returned (e.g., 18% believed they would receive their entire DNA sequence. Higher informed consent knowledge scores were associated with female gender and higher genomic knowledge, subjective numeracy, and education levels (all p < .05). After results disclosure, participants had low scores of decisional regret regarding study participation; they also reported high levels of satisfaction with their physicians’ disclosure of results (mean = 5.9 on a 6-point scale), although ~20% of participants reported receiving “too much” information. Satisfaction with communication did not vary by participants’ demographics or other characteristics (e.g. genomic knowledge).
Conclusions: This study suggests that the intervention was well understood by patients, with low levels of decisional regret and high satisfaction with communication. Future research will need to examine these issues in more diverse samples, where misconceptions about the clinical WGS and concerns about information overload may be magnified.

Kayte Spector-Bagdady, JD, MBioethics, CBSSM Postdoctoral Research Fellow: "Direct‐to‐Consumer Biobanking"


23andMe is back on the market as the first direct‐to‐consumer genetic testing company that “includes reports that meet Food and Drug Administration standards for being clinically and scientifically valid.” Its current product includes 36 health‐related carrier‐status reports and consumers’ raw genetic data. But while its front‐end product is selling individual genetic tests online, its back‐end business model is amassing one of the largest privately owned genetic databases in the world.
This article argues that as the Department of Health and Human Services revises its regulation of research with human subjects as well as its proposal to exempt autosomal recessive carrier screens from premarket authorization it should contemplate the intersection of these areas of rulemaking—and consider how enhancing the security of federally funded research but loosening private access to biospecimens will drive more research into the private sector and result in less, not more, protection for human subjects.

Panel Presentation (Susan Goold, MD, MHSA, MA & colleagues): "Community engagement in setting research priorities: Representation, Participation and Evaluation"


We describe a 5-year project that engaged minority and underserved communities throughout the state of Michigan in deliberations about health research priorities to increase community voice in how limited health research resources are allocated. DECIDERS (Deliberative Engagement of Communities in DEcisions about Research Spending) formed a state-wide Steering Committee (SC) to develop a version of the deliberative exercise CHAT for health research priorities, then convened 47 groups to evaluate the tool and describe community research priorities.
Facilitators: Susan Goold and Zachary Rowe, Co-Directors
Panelists: Karen Calhoun, Charo Ledon, Esther Onaga, Lisa Szymecko

How would you adapt? (Nov-05)

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.

On Thursday, May 19, at 4:30 pm in the Alumni Center, the Inaugural Bishop Lecture in Bioethics was held.  Established by a generous gift from the estate of Ronald C. and Nancy V. Bishop, both graduates of the University of Michigan Medical School (Class of '44), the inaugural address was given by John D. Lantos, MD, in a talk entitled, "The Complex Ethical Mess Surrounding Genetic Testing in Children." 

Dr. Lantos is the Director of the Children's Mercy Bioethics Center in Kansas City and is a leading voice in bioethics.  He has authored or edited five books and numerous publications, including Do We Still Need Doctors?, The Lazarus Case, Neonatal Bioethics, and The Last Physician: Walter Percy and the Moral Life of Medicine.  Lantos has discussed designer babies on Larry King Live, medical errors on Oprah, and ethics consultations on Nightline.  The Center for Bioethics and Social Sciences in Medicine co-sponsored the event.  Over 75 people attended the lecture, which was followed by a reception.

 

John D. Lantos, MD

 

Tue, July 26, 2011
The Department of Health and Human Services published an Advance Notice of Proposed Rulemaking to request comment on how current regulations for protecting human subjects who participate in research might be modernized and revised to be more effective.  Changes are proposed to seven aspects of the current regulatory framework:
 
  • refinement of the existing risk-based regulatory framework;
  • utilization of a single IRB review of record for domestic sites of multi-site studies;
  • improvement of consent forms and the consent process;
  • establishment of mandatory data security and information protection standards for all studies involving identifiable data;
  • establishment of an improved, more systematic approach for the collection and analysis of data on unanticipated problems and adverse events;
  • extension of Federal regulatory protections to all research, regardless of funding source, conducted at institutions in the U.S. receiving some Federal funding from a Common Rule agency for research with human subjects; and
  • improvement in the harmonization of regulations and related agency guidance

The paper, "Pruning the regulatory tree: For human subjects research, maximum regulation does not mean maximum protection," authored by CBSSM faculty Scott Kim, Peter Ubel, and Ray De Vries, was cited in the ANPRM.

 

Aisha Langford PhD, MPH

Alumni

Dr. Aisha Langford was a VA and CBSSM Postdoctoral Research Fellow, 2013-2015. She received her PhD from the department of Health Behavior and Health Education at the University of Michigan School of Public Health in Ann Arbor. From 2007 -2013, she directed the University of Michigan Comprehensive Cancer Center’s Community Outreach Program. Her research interests include chronic disease prevention and control, health communications, medical decision making, and clinical trial participation. Aisha is from the San Francisco Bay Area and earned her BA from the University of Virginia.

Last Name: 
Langford

CBSSM recently co-hosted the panel "Incidental Findings in Clinical Exome and Genome Sequencing: The Drama and the Data" featuring Robert C. Green, MD, MPH, Associate Professor of Medicine, Division of Genetics at Brigham and Women’s Hospital and Harvard Medical School, as the keynote speaker. The panel included a lively and interesting discussion. 

Panel presenters were Jeffrey W. Innis, MD, PhD, Morton S. and Henrietta K. Sellner Professor in Human Genetics and Director, Division of Pediatric Genetics, and Wendy R. Uhlmann, MS, CGC, Clinical Associate Professor, Department of Internal Medicine and Department of Human Genetics. The panel was moderated by Sharon L.R. Kardia, PhD, Director, Public Health Genetics Program and the Life Sciences and Society Program, School of Public Health, University of Michigan.

This event was co-sponsored by CBSSM, the Department of Human Genetics, Genetic Counseling Program, and Life Sciences and Society, Department of Epidemiology.

Kerry Ryan, MA

Research Associate

Kerry Ryan joined CBSSM in July 2010. Kerry has a BA in History (Kalamazoo College) and MA in Sociology (University of Michigan). Before joining CBSSM, Kerry worked as a research assistant and an academic advisor. She has been involved with research related to the effects of community violence and prenatal cocaine exposure; college student academic success and retention; at-risk women’s child-bearing decisions in the context of genetic testing and discrimination; surrogate consent for research; and therapeutic misconception. She currently works with Dr. Raymond De Vries and Dr.

Research Interests: 
Last Name: 
Ryan

Aaron Scherer, PhD

Alumni

Dr. Aaron Scherer was a CBSSM Postdoctoral Research Fellow, 2014-2016. Aaron earned his PhD in Psychology from the University of Iowa and utilizes methodologies from social psychology, social cognition, and neuropsychology to study the causes and consequencdees of biased beliefs. His current research has focused on the causes and consequences of biased beliefs regarding health and politics.

Last Name: 
Scherer

CBSSM Seminar: Cheryl A. Moyer, MPH, PhD

Thu, November 03, 2016, 3:00pm
Location: 
NCRC, Building 16, Room 266C

Cheryl A. Moyer, MPH, PhD
Assistant Professor, Learning Health Sciences
Assistant Professor, Obstetrics and Gynecology

Using GIS and Social Autopsy to understand where and why mothers and babies are dying in rural northern Ghana

Abstract: Cheryl Moyer, PhD, MPH, Assistant Professor of Learning Health Sciences and Obstetrics & Gynecology, will describe a 3-year, USAID-funded project that involves identifying all maternal and neonatal deaths and ‘near-misses’ (those who survive a life-threatening event) across four districts in northern Ghana and conducting detailed verbal and social autopsies to determine both the biomedical cause of death and the sociocultural contributors. The project, known as PREMAND (PREventing Maternal And Neonatal Deaths), also involves geocoding the location of births, deaths, health facilities, traditional healer compounds, and other important landmarks to explore the role of geography in influencing outcomes.

Ethical, Legal and Social Implications of Learning Health Systems Symposium

Fri, November 18, 2016, 8:30am to 3:30pm
Location: 
Taubman Biomedical Science Research Building (BSRB) 109 Zina Pitcher Place

This symposium will promote dialogue and contribute to a research agenda on how learning health system organizers should engage the ethical, legal and social implications of this work.

The next generation of health information technology organizes data into large, networked systems to address challenges of U.S. health systems: spiraling costs, poor health outcomes, safety issues, unproductive research enterprises, and failure to implement known clinical best practices. More than simply “Big Data,” these systems are arranged as “learning health systems,” multi-stakeholder federations that gather and analyze data to create useful knowledge that is disseminated to all stakeholders. Harnessing the power of health data for learning strains ethical, legal, and social paradigms for how health information should be collected, stored, accessed, used, and destroyed.

CBSSM is a co-sponsor, along with the Brehm Center, the Michigan Institute for Clinical and Health Research (MICHR), the School of Public Health, and Healthcare Information and Management Systems Society (HIMSS).

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