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Funded by Foundation for Informed Medical Decision Making

Funding Years: 2007 -2008

 

The National Survey of Medical Decisions (the DECISIONS study), co-led by CBDSM investigators Mick Couper (PI) and Brian Zikmund-Fisher (co-I), is a unique effort to collect nationally representative data about when and how middle-aged and older adults manage the medical decisions they face.

The DECISIONS study consisted of a random digit dial telephone survey of 3,010 adults over the age of 40 in the United States conducted between November 2006 and May 2007.  Participants were asked a series of screening questions to identify which of 10 common medical decisions they may have discussed with their health care providers in the previous two years and then completed 2-3 question modules regarding specific decisions that were relevant to each individual. 

Its initial screening module gathered highly generalizeable data regarding the prevalence of different types of common medical decisions in the experience of older Americans.  Its dynamically-administered modules then requested detailed information regarding how and when patients discuss key medical decisions with their health care providers and whether variations in decision-making processes may have influenced patients’ medical care. 

Funded by the Foundation for Informed Medical Decision Making (FIMDM), the DECISIONS project has been a highly collaborative project that has included investigators from Institute for Social Research and FIMDM, as well as CBDSM. In addition, FIMDM-affiliated researchers from around the country are analyzing DECISIONS data to inform their research. While the initial papers from the DECISIONS dataset will be by core investigators, the study team intends to make the dataset publicly available for more widespread use sometime in 2009.

Mick Couper (PI)

Sarah Hawley, PhD, MPH

Faculty

Dr. Sarah T. Hawley is a Professor in the Division of General Medicine at the University of Michigan and a Research Investigator at the Ann Arbor VA Center of Excellence in Health Services Research & Development. She holds a PhD in health services research from the University of North Carolina and an MPH from Yale University Department of Public Health. Her primary research is in decision making related to cancer prevention and control, particularly among racial/ethnic minority and underserved populations.

Last Name: 
Hawley

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

Funded by NIH: National Cancer Institute

Funding Years: 2008-2014

Prostate cancer is a leading cause of cancer death among men, and thousands of men must make treatment decisions every year. Decision making for localized prostate cancer is especially challenging as clinical trials have shown that the standard treatment options of active surveillance, surgery and radiation are comparable in terms of survival. Thus, treatment for prostate cancer is a preference-sensitive decision, with the best choice depending in part on patient attitudes towards the risks and benefits of treatment alternatives. Therefore, ideally the treatment decision will be made with full consideration of patient preferences. As such, it is recommended that patients and their physicians discuss any preferences patients have that might be relevant to the treatment decision. This dialogue is complicated by patients’ lack of experience with sharing in these types of decisions. Additionally, physicians often use medical jargon, making it more difficult for patients to understand their diagnosis and treatment options.  Research is needed to determine the best methods for helping patients communicate their preferences to their physicians so that patient values hold considerable weight in treatment decisions.

The goals of this study are two-fold:

  • To demonstrate to patients some of the issues that might arise during their diagnosis visit that may prevent them from communicating preferences to physicians.
  • To provide solutions that would enable greater patient participation in medical decision making.

PI(s): Angela Fagerlin, PhD and Peter A. Ubel, MD

Co-I(s): John T. Wei, MD; Brian Zikmund-Fisher, PhD; Margaret Holmes-Rovner, PhD; James Tulsky, MD; Stewart Alexander, PhD

Parent grantMichigan Center for Health Communication Research II

Announcement of Position: Clinician Ethicist

Announcement of Position: Clinician Ethicist


Background
The Program in Clinical Ethics within the Center for Bioethics and Social Sciences in Medicine (CBSSM) represents an expansion of existing services designed to promote a culture of patient-centered excellence by developing a comprehensive set of ethics-related activities. The aims of this program are to: liaise with and provide support to the adult and pediatrics ethics committees; streamline clinical ethics consultation; assist with ethics-related policy development on a regular and proactive basis; organize and administer structured educational programs in clinical ethics; and coordinate empiric research with relevance to clinical ethics within CBSSM.


Program Organization
The Program in Clinical Ethics is co-directed by the chairs of the adult and pediatric ethics committees and consultation services, Christian J. Vercler, MD MA and Andrew G. Shuman, MD. A dedicated clinician ethicist will manage the program on a daily basis. A cadre of eight faculty ethicists will rotate on service throughout the year and work closely with the clinician ethicist. Trainees and students will rotate as well. Dedicated administrative support will be organized through CBSSM.


Position
One individual will serve as the program’s clinical ethicist. This individual will serve as the “first responder” and contact person for all ethics consults during business hours, ensure continuity with consults, and work in conjunction with faculty ethicists. The role will include arranging team/family meetings, ensuring follow-ups on all consults, and arranging additional consultations as needed for selected cases. He/she will also regularly review relevant institutional policies and attend all ethics committee meetings. Another major component of this role will be to organize and participate in educational efforts and preventative ethics rounds. This position will provide $50,000 of direct salary support annually, to be distributed and allocated in conjunction with their home department. The initial appointment will last two years and is renewable.


Qualifications
Candidates are expected to be employees or faculty at UMHS with a master’s or equivalent terminal degree in their field; any professional background is acceptable. Direct experience with clinical ethics consultation is required. Familiarity with ethics education and related clinical research would be helpful. Excellent organizational and communication skills across multidisciplinary medical fields are required. Candidates are expected to have qualifications that meet the standards outlined by The American Society for Bioethics and Humanities (ASBH) for accreditation for clinical ethics consultants.


Application Process
Candidates will be vetted, interviewed and chosen by a nomination committee. Candidates are asked to submit:

  • Curriculum vitae or resume
  • One page maximum summary of (1) education/training related to ethics consultation; (2) clinical ethics consultation experience; and (3) motivation/interest in the position
  • Letter of support from Department Chair/Division Head/Center Director or equivalent
  • Submit formal application via email to: valkahn@med.umich.edu


Timeline

  • Application is due December 11, 2015 with interviews shortly thereafter
  • Appointment will take effect January 1, 2016


Contacts

  • Co-Directors of the Program in Clinical Ethics: Christian J. Vercler, MD MA & Andrew G. Shuman, MD
  • Administrative contact: Valerie Kahn – valkahn@med.umich.edu 734 615 5371

Announcement of Position: Faculty Ethicist

Announcement of Position: Faculty Ethicist


Background
The Clinical Ethics Service within the Center for Bioethics and Social Sciences in Medicine (CBSSM) promotes a culture of patient-centered excellence by performing a comprehensive set of ethics-related activities. The aims of this service are to: liaise with and provide support to the adult and pediatric ethics committees; provide clinical ethics consultation and engage in preventative ethics endeavors; assist with ethics-related policy development on a regular and proactive basis; organize and administer structured educational programs in clinical ethics; and coordinate empiric research with relevance to clinical ethics within CBSSM.

Program Organization
The Clinical Ethics Service is led by Christian J. Vercler, MD MA and Andrew G. Shuman, MD. A dedicated clinical ethicist will manage the program on a daily basis. A cadre of faculty ethicists will rotate on service throughout the year and work closely with the clinical ethicist. Trainees and students will rotate as well. Dedicated administrative support is organized through CBSSM.


Position
The Clinical Ethics Service employs a roster of faculty ethicists who are responsible for staffing ethics consultations arising from any of the clinical venues (inpatient and outpatient; adult and pediatric) within Michigan Medicine during their time on service. They will supervise and participate in the institutional educational endeavors and preventative ethics rounds in a regular and on-going manner. Faculty ethicists will also develop and provide clinical rotations for medical students and house officers on a cohesive ethics service. Each faculty member will be expected to rotate on service for four to six weeks per year, and attend/participate in committee meetings and other events throughout the academic year (this will not necessarily require suspension of other activities when on-service). Depending on the total number appointed, each faculty ethicist will receive $15,000-$20,000 of direct salary support annually, to be distributed and allocated in conjunction with their home department. The initial appointment will last two and a half years and is renewable. Additional appointments will last two years.


Qualifications
Candidates are expected to have faculty appointments at University of Michigan and be in good academic standing; any professional background is acceptable. Candidates are expected to have qualifications that meet the standards outlined by The American Society for Bioethics and Humanities (ASBH) for accreditation for clinical ethics consultants. Direct experience with clinical ethics consultation is required. Familiarity with ethics education and related clinical research would be helpful. Excellent organizational and communication skills across multidisciplinary medical fields are required.


Application Process
Candidates will be vetted and chosen by a selection committee. Candidates are asked to submit:

  • Curriculum vitae or resume
  • One page maximum summary of (1) education/training related to ethics consultation; (2) clinical ethics consultation experience; and (3) motivation/interest in the position
  • Letter of support from Department Chair/Division Head/Center Director or equivalent
  • Submit formal application via email to: lynnam@med.umich.edu


Timeline

  • Application is due September 25, 2017
  • Appointment will take effect January 1, 2018

Contacts

  • Leaders of the Clinical Ethics Service: Christian J. Vercler, MD MA & Andrew G. Shuman, MD
  • Administrative contact: Valerie Kahn – valkahn@med.umich.edu 734 615 5371

The University of Michigan School of Public Health has received federal funding to launch an integrated, interdisciplinary fellowship program that will provide training in the ethical, legal, and social implications (ELSI) of genomic science.

Led by Scott Roberts, professor of health behavior and health education at Michigan Public Health, the ELSI Research Training Program is funded by a T32 training grant from the National Institutes of Health’s National Human Genome Research Institute and will launch in fall 2018. Raymond De Vries, Wendy Uhlmann, Brian Zikmund-Fisher, Jodyn Platt, Kayte Spector-Bagdady are among the faculty who will serve as faculty mentors.

More information can be found here.

Research Topics: 

Get it out of me! (Dec-05)

A 5% chance of death or a 10% chance of death:  which would you choose?

Imagine that you have been diagnosed with a slow growing cancer. Right now, the cancer is not causing you to feel sick. For most people, the cancer will grow so slowly it will never cause them any trouble. For others, the cancer will grow to the point that it makes them sick. Untreated, five percent (5 out of 100) will die of the cancer. Your doctor tells you that you have two treatment options: watchful waiting or surgery. Watchful waiting means you will not do any treatment right away, but your doctor will follow your cancer closely and treat any symptoms that you have if it begins to spread. Although it would be too late to be cured, you would be comfortable and free of pain. There are no side effects to watchful waiting, but five percent (5 out of 100) of the people who choose this treatment will develop symptoms and die from their cancer within five years. On the other hand, the surgery would cure your cancer permanently. Following surgery you will feel more tired than usual and will experience stomach upset occasionally for the three months following your surgery. However, surgery has a ten percent (10 out of 100) risk of death during the surgery.

Imagine that both of these treatments are completely covered by your health insurance. Which would you choose?

  •  I would not take the surgery and accept the 5% chance of dying from this cancer.
  •  I would take the surgery and accept the 10% chance of dying from the surgery.

How do your answers compare?

In the real world, cancer patients sometimes choose treatments that may have devastating side effects over less invasive, yet equally or more effective, approaches. One explanation for this is that people may feel a strong need to "get the cancer out" of their bodies. Surgical removal of all potentially cancerous tissues may satisfy this desire so thoroughly that people end up ignoring important statistical information about adverse outcomes.

Making a choice not in their best interest

CBDSM investigators Angela Fagerlin, Brian Zikmund-Fisher, and Peter Ubel hypothesized that people perceive cancer diagnoses as a call to action, and more specifically, a call to get rid of the cancer through surgery, regardless of what statistical information might say to the contrary. Consequently, they predicted that when presented with hypothetical cancer diagnoses, many people would say they would pursue surgery even if such an action would decrease their chance of survival.

To explore the relative frequency of people's willingness to choose surgery when it wasn't in their best interest, the investigators designed a cancer scenario similar to the one you read on the previous page. Participants were presented either a surgery or a medication treatment that would either increase or decrease their chance of survival.

The investigators found that participants who were presented with the opportunity to rid themselves of their cancer through surgery were significantly more inclined to take action than those who were presented with the medication treatment. For example, when the treatment reduced their overall chance of survival, 65% chose the surgery, whereas only 38% chose the medication treatment. This suggests that people's treatment decisions may be based not on the effectiveness of the treatments, but rather on their beliefs about how cancer should be treated. Specifically, cancer diagnoses seem to conjure up a strong desire for active treatment. And people seem to have an intuitive belief that action should not just involve treatment, but surgical removal of the cancer.

Why these findings are important

The results of this study may resonate with many clinicians who have encountered cancer patients who seem to desire treatment for treatment's sake, or who have a preference for surgical intervention even before they learn about the pros and cons of their treatment alternatives. This study should serve to remind clinicians that patients' preference for action can be strong enough, at times, to be a bias. At a minimum, it is important for health care professionals to be aware of the potential for such biases, so they can decide whether to accept patients' preferences at face value, or try to convince patients that aggressively treating a tumor may not be in their best interests.

Read the article:

Cure me even if it kills me: Preferences for invasive cancer treatment.
Fagerlin A, Zikmund-Fisher BJ, Ubel PA. Medical Decision Making 2005;25(6):614-619.

Funded by Department of Veterans Affairs

Funding Years: 2009-2012

Because CRC-predictive genetic tests offer the potential to optimize CRC screening efforts, improving the communication and use of such tests by the millions of veterans who are screened for CRC each year could result in both improved cancer surveillance and more efficient (and potentially reduced) VA resource utilization. Our study will provide empirical data about practical risk communication methods that can be used in the future by VA clinicians to present genetic tests to veterans and about patient-level barriers which will inhibit acceptance of genetic tests that predict colorectal cancer risk within the VA patient population. By evaluating alternate methods of communicating genetic test results before such tests actually become available, we hope to identify optimal approaches that can be integrated into VA genomics initiatives from the very start.

Angela Fagerlin (PI)

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