Communications and Decision Making

As a medical anthropologist, I study the culture of medicine as it affects patients, healthcare providers, and society at large. I am interested broadly in the problem of clinical uncertainty, and the complex social dynamics and moral problems that arise from it.  Medical practice often must balance precariously on the knife’s edge between offering healing and doing harm, because many of our most powerful therapeutic tools contain the potential for both.  Deciding what can be risked in the hope of helping cannot rely on scientific data alone, but is powerfully guided by social norms and moral values as well.  My research looks to understand how such difficult decisions are made and experienced by the patients, clinicians, and policy-makers faced with them. 

I have explored these issues in two areas of medicine where the balance between saving life and risking it can be uncertain: organ transplantation and pain management.  As an anthropologist, I am interested in comparing how different cultures respond to the problem of clinical uncertainty, and so have studied these issues in the U.S., Mexico, and Spain.

Organ Transplantation

My research on organ transplantation focuses primarily on the social and ethical questions raised by living organ donation.  I have conducted in-depth interviews with living kidney and liver donors in the U.S. to explore how they came to donate and what their post-donation experiences have been.  I have also carried out extensive fieldwork in Mexico to study the development of living donor kidney transplantation there, and its impact on families, the healthcare system, and national politics.  My work on transplantation appears in numerous journal articles and is published in my recent book Domesticating Organ Transplant: Familial Sacrifice and National Aspiration in Mexico.

Pain

Pain is the most common reason for seeking medical care in the U.S.  Yet the subjectivity of pain and the risks that accompany many pain medications often leave clinicians uncertain about how best to assess and treat it.  This uncertainty can produce frustration and even conflict with patients, making pain management a highly contentious area of both clinical practice and public policy.  Using shadow observations and in-depth interviews, I have been studying how clinicians and patients interact and make decisions around pain.  This ongoing research seeks to shed light on these difficult dynamics, and forms the basis of my second book project.

For more information, please see my faculty profile.

Publications

See publications in PubMed.

Contact

Contact Megan Crowley-Matoka, PhD, at 312-503-7962.

Ethical issue in Pediatric Cardiology

I am interested in issues that affect decision-making, informed consent, and implications of policy recommendations in pediatric cardiology. To this end, I have pursued research relating to:  

• Implications of universal lipid screening and statin therapy in children
• Pediatrician attitudes towards universal electrocardiogram screening and its implications
• Variations in practices for heart transplant listing among pediatric transplant cardiologist
• Presence of concomitant genetic abnormalities in neonates undergoing surgery for congenital heart disease and its potential impact on parental decision making
• Parental refusal of surgery for congenital heart disease

Bioethics Certificate Program

I am involved in creating a bioethics certificate program for graduate medical trainees.  Clinical medical ethics or bioethics has long been recognized as an important component of residency education and requires that residents are provided educational experiences to demonstrate competency in professionalism and interpersonal and communication skills. Specifically, understanding ethical principles, identifying ethical issues encountered in medicine, and demonstrating the ability to perform ethical analysis is critical in clinical decision-making when it involves consideration of patient and family values.   Training physicians to do this well and be leaders in the future in biomedical ethics education can be challenging.  My goals for this program are to: 

• Evaluate the current landscape of trainee education with a rigorous needs assessment
• Explore methodologies to develop a curriculum that will not only effectively teach ethics to medical trainees but will also identify tools that will translate to trainees’ future careers

For more information, please see my faculty profile.  

Publications

See publications in PubMed.

Contact

Contact Angira Patel, MD/MPH, at 312-227-4100.

My work looks to understand the roles of fear and doubt in scientific and clinical medicine. I want to know the effect of anxiety on the decisions made by biomedical scientists, clinical professionals, health policy makers, and by patients. In short, how does healthcare think, and what should it do, about the things we all fear?

Furthering our understanding of how the anxious imagination affects medicine underpins my first book, A Condition of Doubt: The Meanings of Hypochondria (Oxford University Press, 2012), and is further developed in my current project on the emotion of horror in medicine.

Hypochondria Project Publications

A Condition of Doubt: The Meanings of Hypochondria. New York: Oxford University Press, 2012. 

• Awarded Kendrick Memorial Prize for best book of 2012, Society for Literature, Science, and the Arts.
• Listed in New York Daily News  “10 Best Books of 2012”
• Alexander Nazaryan, “Internal Affairs: On Hypochondria.” New Yorker “Page-Turner” Blog, August 3, 2012.
• Belling C. “Hypochondriac Hermeneutics: Medicine and the Anxiety of Interpretation.” Literature and Medicine.; 25 (2006): 376-401. PMID: 17649838.
• Belling C. “Overwhelming the Medium: Fiction and the Trauma of the 1918 Influenza Pandemic.” Literature and Medicine 28 (2009): 55-70. PMID: 20446644.
• Belling C. “Narrating Oncogenesis: The Problem of Telling When Cancer Begins.” Narrative 18 (2010): 229-247. Won 2010 Schachterle Essay award (SLSA)
• Belling C. “The Living Dead: Fiction, Horror, and Bioethics.”  Perspectives in Biology and Medicine, 53(2010): 439-451. PMID: 20639610.
• Belling C. “Depth Perception: Narrative, Metaphor, Medicine.” Genre 2011; 40(3): 239-261.

Current Scholarship

My work focuses on horror as a specific affective response by both patients and healthcare providers to the content of medicine: disease, suffering, deformity, and death. Initial findings have been that while the content of popular horror stories is extremely similar to the content of patients’ fears and the events of clinical experience, horror itself tends to be discounted or ignored in the medical literature and in medical education. Two levels of further analysis are now underway: qualitative study of practitioners’ own experience of horror in clinical contexts, and a theoretical study of the cultural and philosophical understanding of horror as a way to represent and respond to human experience.

The work has several implications, both for better understanding of patients’ needs and motivations, and for the ethical delivery of care.

• Clinical Setting: Offer a clearer understanding of the unspoken fears—regarding disease and medical interactions—that patients bring to healthcare and that can affect their decision making and adherence to treatment; present the implications of public health discourse’s use of horror tactics to influence population and patient behavior
• Undergraduate Medical Education: Forge an argument that horror needs to be attended to in training (the first manuscript ready for submission will be a study of anatomy lab as a training in the repression of horror in medical students)
• Continuing Education and Professional Development: Argue for the recognition of horror as a valid and normal response in clinicians, who should be trained that to acknowledge and analyze this reaction rather than suppress it is to deliver more ethical care and to facilitate self-care and reduce the risk of burnout

Questions I’m exploring include:

• What events or experiences in patient care provoke the emotional reaction of horror?
• What is horror? Is the reaction of horror morally or ethically weighted?
• How can we ensure that one's visceral (and by definition involuntary) horror reaction to a patient's physical state does not get in the way of one's compassionate connection with the person who is that patient?
• Are there ways to reflect on the experience of horror that might foster compassionate patient care rather than threaten it?

For more information, visit my faculty profile.

Publications

See publications on PubMed.

Contact

Contact Catherine Belling, PhD, at 312-503-3215.

My research incorporates my training in law, clinical ethics and medical humanities, and my background in theater.

Reproductive Ethics

Clinicians and patients across the spectrum of reproductive medicine deserve assistance with their ethical questions, and support in delivering and receiving high quality care. Since abortion is a legal procedure that almost one-third of American women (3 in 10) undergo, much of my current work focuses on the individual, professional, institutional, and social ethics of abortion care in the US. In 2017 Oxford University Press will publish my book on this topic, tentatively titled Scarlet A: The Ethics, Medicine, Law and Politics of Ordinary Abortion.

Medical Communication

In 2002, I created “medical improv,” a training method that adapts theatrical improv exercises and principles and applies them to medical skills such as communication, teamwork, and cognition in healthcare. I have taught Feinberg students this 10-hour medical improv course for 15 years. For four years, I have taught an International Train-the-Trainer workshop for clinicians and standardized patients who want to learn to teach my course. I currently am pursuing outcomes research on the method’s effectiveness. ​This work draws on my role as an adjunct faculty member at The Second City Training Center, and has been published in Academic Medicine and Annals of Internal Medicine.

For more information, please see my faculty profile.

Publications

See publications in PubMed.

Contact

Contact Katie L Watson, JD, at 312-503-1675.

As director of the NUgene Project within the Center for Genetic Medicine, I oversee all activities of the genomic biobank at Northwestern. My research includes the ethical, legal, and social implications (ELSI) associated with biobanking practices and large-scale genomics research (through Northwestern’s participation in the Electronic Medical Records and Genomics (eMERGE) Network), including those related to informed consent and responsible data management and sharing practices.

Additionally, I work with a multi-disciplinary team to develop tools and processes that enable the implementation of genomic medicine at Northwestern Medicine. Through these tools, we can incorporate genetic information into electronic health records (EHR) and MyChart for patient communications, that are most beneficial to care and outcomes. Refining these points of interaction with genetic information is crucial to bringing personalized medicine into broader clinical use.

Current Research

The aims of the multiple studies in which I’m currently involved include:

• Developing and testing effective genetic risk messaging to improve patient outcomes
• Assessing patient preferences for consent for future research and to understand which biospecimen and biobanking-related research practices are likely to have the greatest impact on willingness to participate in this research (study includes 90,000 participants from across 11 eMERGE  institutions). 
• Improving the effectiveness and efficiency of informed consent through electronic consenting technology
• Evaluating the implementation of the genomic testing, specifically as it relates to pharmacogenomics variants (i.e., potential drug response and reaction) at the point of care; initiating a multi-site test of concept
• Understanding expectations, concerns and informational needs of healthy patients who undergo genetic sequencing

For more information, my faculty profile or visit the NUgene Project.

Publications

See publications in PubMed.

Contact Us

Contact Maureen Smith, MS, at 312-695-0700.

As a medical anthropologist with training in clinical medical ethics, my research draws upon anthropological perspectives to illuminate tacit assumptions in medicine and ethical issues as cultural systems. My research leverages ethnographic research methods to assess and express patients’ and healthcare providers’ constructs of risk and benefit to develop and implement patient-centered educational materials to optimize informed consent in the transplant setting. Additionally, my research aims to reduce health disparities among minorities by developing and implementing culturally-sensitive healthcare practices. I develop ehealth interventions (e.g., a bilingual website and a mobile app) to facilitate patient treatment decision-making and informed consent.

Current Research

I am the Principal Investigator on an NIH-funded R01 study entitled, “A Culturally Targeted Transplant Program to Increase Live Kidney Donation in Hispanics.” The Hispanic population faces a disparity in access to kidney transplantation, particularly in living donor kidney transplantation. Through this multi-site, five-year study, my co-Principal Investigator and I are implementing Northwestern’s culturally-targetedHispanic/Latino Kidney Transplant Program at two transplant centers to evaluate whether the Hispanic Kidney Transplant Program is associated with increases in Hispanic living kidney donor transplantation and a reduction in Hispanic disparities in living donation.

I am the Principal Investigator on an NIH-funded R03 study entitled, “Ethical and Sociocultural Implications of Genetic Testing in Transplantation.” African American potential living kidney donors are disproportionately more likely to get kidney failure post-donation than European Americans. Apolipoprotein L1 (APOL1) gene variants may explain this disparity as they are significantly associated with kidney failure chiefly in African Americans. This study aims to assess the ethical and sociocultural implications of the controversial practice of APOL1 testing for African American living donors, and develop culturally-sensitive educational materials for genetic counseling about APOL1 testing in order to improve living donors’ safety, informed consent, and reduce disparities in African American living donor outcomes.

I am also a co-investigator on two studies that are funded by the Greenwall Foundation.

• “The Social Support Criterion in Transplantation: Considerations for Distributive and Procedural Justice”
  PI: Keren Ladin, PhD, Tufts University
• “Balancing Non-Maleficence and Autonomy: Establishing Ethical Risk Threshold for Living Kidney Donors”
  PI: Sanjay Kulkarni, MD, Yale University

For more information, please see my faculty profile.

Publications

See publications in PubMed.

Contact

Contact Elisa Gordon, PhD, MPH, at 312-503-5563.

PICU Supports: Intervention for PICU Parents

Pediatric Intensive Care Units (PICUs) are places of tragedy and hope. Approximately 16,000 children die annually in PICUs, forcing traumatized parents to make challenging end-of-life decisions. Even the parents of children who return home often face serious life-changing decisions in the PICU. For every PICU parent the experience is unforgettable, emphasizing the importance of high quality communication during the most intense decision-making moments. This Patient-Centered Outcomes Research Institute-funded study seeks to improve communication and decision making in the PICU by testing the impact of an intervention, PICU Supports, on the quality of the decision making process. PICU Supports uses a navigator to aid parental decision making by addressing parents’ needs, removing communication barriers, enhancing care coordination, and providing emotional support.looks to improve communication, decision making, and the overall experience for parents of critically-ill children.

 Find more information on PICU Supports t via the Lurie Children’s site.

Communication and Decision-making in the Pediatric Intensive Care Unit

Parents of children admitted to the pediatric intensive care unit (PICU) must endure the emotional challenges associated with the illness while remaining involved, knowledgeable, and coherent enough to make decisions affecting their child’s quality of life. These parents work with a multidisciplinary PICU team who could support parents’ psychosocial and spiritual needs and help parents participate in decisions by improving communication between parents and the healthcare team.

This American Cancer Society funded study looks to characterize perceived roles of SWs/Cs in the care of and decision making for critically-ill cancer patients from the perspectives of healthcare team and parents, and to identify opportunities to improve and deepen their role.

Learn more about this project via the American Cancer Society website.

Greater Illinois Pediatric Palliative Care Coalition (GIPPCC)

I’m involved in two collaborative projects with the Greater Illinois Pediatric Palliative Care Coalition (GIPPCC).

Identifying Strengths, Opportunities, Barriers and Education Needs in Pediatric Palliative Care in Rural Illinois

The goal of this project is to evaluate the current landscape of pediatric palliative care in more rural areas of Illinois. With this information we hope to develop and provide educational programing to clinicians through a physician and nurse-mentoring curriculum that specifically and thoughtfully address the needs of clinicians in providing pediatric palliative care to families in rural areas of Illinois.

Increasing Clinician Understanding Regarding the Needs of Children with Life-Limiting Illnesses and Their Families

This project seeks to design, validate, and improve the Parent/Child Needs (PC Needs) Tool which accesses unmet needs for parents of children in pediatric palliative care programs. The potential uses of such a tool include screening and assessment, improved synchronicity between child and family needs and care received, program evaluation, comparing groups, and evaluating interventions.

For more information, please see my faculty profile.

Publications

See publications in PubMed.

Contact

Contact Kelly Michelson, MD/MPH, at 312-227-4800.

The focus of my work is to improve health outcomes by increasing our understanding of processes and social structures which shape health behaviors and illness experiences. I’m particularly interested in patient understandings of cancer and cancer treatments.

Current Research

My current research examines the growing use of contralateral prophylactic mastectomy (CPM) by breast cancer patients. The use of CPM has increased dramatically in recent years, but the value of the procedure doesn’t seem to support its popularity in that:

• Most women will not obtain a survival benefit from the procedure
• Patients will face increased risk for surgical complications following the procedure
• The National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines in Oncology for Breast Cancer and the Society of Surgical Oncology discourage CPM except for women considered to be high risk

In our current, mixed methods study, funded by the National Cancer Institute (“Contralateral Prophylactic Mastectomy: The Patient Decision Making Process”, PI: Kaiser, R21 CA175950), we aim to better understand patients’ and breast surgeons’ perspectives regarding CPM and identify factors leading women to choose CPM.

Our goal is to design interventions aimed at both physicians and patients to support informed and effective decision making for women with breast cancer.

Recent Findings

A focus of our work is to develop an understanding of the lesser known surgeons’ view of CPM, as well as that of the patient. Through our interviews from around the country we’ve found a range of perspectives.

Patients Perspective

• Many greatly overestimate their risk of future cancer
• Often reference gut feelings about the likelihood of future cancer

Surgeon Perspective

• An emphasis on concern for women potentially making uninformed decisions
• A belief of some surgeons that CPM was a viable option for managing cancer worries

For more information, please see my faculty profile.

Research Collaborators

• Seema Khan, MD
• Lindsey Karavites, MD
• Kenzie A. Cameron, PhD, MPH
• Sofia Garcia, PhD

Publications

See Kaiser Tegel publications in PubMed.

Contact

Contact Karen Kaiser Tegel, PhD, at 312-503-3521.