2014 Readings

"How We Perform, Understand, and Learn From Stories of Health Care in Utah" with actress and playwright, Anna Deavere Smith, the 2014 David P. Gardner Lecturer in the Humanities and Fine Arts

Panel Discussion with Anna Deavere Smith and Samuel Brown, Joni Hemond, Antoinette Laskey, Sara Naeole,  and Chuck Norlin--local health care providers who recognize the importance of stories and performance techniques to educate students, medical providers, and patients and to improve medical practices.  Moderated by Gretchen Case.  

8:30-10:00AM, Eccles Institute of Human Genetics Auditorium, 15 North 2030 East,1st Floor, No tickets necessary, seating limited.  

Panelists included: 

Samuel Brown, MD, MS, FASE

Dr. Brown is Assistant Professor of Pulmonary and Critical Care Medicine at the University of Utah/Intermountain Medical Center and a member of the Division of Medical Ethics and Humanities.  His research focuses on humanizing the experience of life-threatening illness. As part of this work, he and his group emphasize the power of narrative in navigating an Intensive Care Unit (ICU) stay. Current research and clinical work by Dr. Brown's group is beginning to evaluate the role of narrative in overcoming delusional memories of life-threatening illness--distressingly common after an ICU stay--in order to prevent Post Traumatic Stress Disorder among survivors and families. 

Gretchen A. Case, PhD

Dr. Case is an Assistant Professor in the Division of Medical Ethics and Humanities.  With a PhD in Performance Studies, Dr. Case embraces the use of theatrical techniques and literature as well as everyday modes of performance in medical education.  She has developed numerous projects and pedagogical approaches that use Forum Theatre, Readers' Theater, improvisation, playwriting, storytelling and--just as importantly-- listening to stories. 

Joni A. Hemond, MD, FAAP

Dr. Hemond is an Assistant Professor of General Pediatrics at the University of Utah School of Medicine and Primary Children´s Medical Center and the Medical Director for the Teen Mother and Child Program/Teen Health Clinic.  Dr. Hemond partners with theater students from the Salt Lake Performing Arts High School, who help train medical residents by performing as patients in scenarios emphasizing the particular needs of adolescents and young adults.  The medical residents interview these young actors, who then provide feedback aimed at enhancing communication skills. 

Antoinette L. Laskey, MD, MPH, FAAP

Dr. Laskey, a child abuse pediatrician, is the Division Chief of the Division of Child Protection and Family Health and Medical Director of Safe and Healthy Families, the child abuse program for the University of Utah and Primary Children's Hospital.  Dr. Laskey uses actors for experiential learning on issues related to child fatalities and child abuse.  She has used actors for infant death scene investigation training with law enforcement, death investigators, and child welfare workers.  She also uses actors to educate healthcare workers on how to appropriately and sensitively evaluate suspected child physical and sexual abuse.

Sarah Nae'ole, MSHS, MBA

Ms. Nae`ole, who now manages the employee health clinic at ARUP Labs, served as a Practice Coach and Quality Improvement Specialist for several of UPIQ's learning collaboratives.  With Dr. Sydney Cheek-O'Donnell in the Department of Theatre and Dr. Chuck Norlin, she  coordinated the mental health project that leveraged Forum Theater to teach and engage participating practice teams.

Chuck Norlin, MD

Dr. Norlin  is a general pediatrician who directs the Utah Pediatric Partnership to Improve Healthcare Quality, aka UPIQ, which aims to assist and support primary care practices throughout Utah in improving the care they provide for children.

"Re-thinking Brain Death: Questions Raised by Current Cases in the Media"

The New York Times reports, "Jahi McMath was declared brain-dead after complications from surgery on Dec 9 and Children’s Hospital Oakland wanted to remove her from a ventilator.  But her heart continued to beat, and her family protested the removal in court, so she has remained connected to the machine.”  Are Jahi’s parents simply unwilling to accept the fact of death in their child or does their refusal to let go reflect a more fundamental problem with the notion of brain death?  Are people who have lost whole brain function really dead?  If so, why?

This Evening Ethics discussion will briefly review this case, and perhaps a very similar case at Primary Children’s Hospital, to explore the medical and philosophical foundations of the determination of death. Three articles to prepare for this session include  http://www.nytimes.com/2014/01/04/us/a-brain-is-dead-a-heart-beats-on.html?_r=0 ,  http://www.nytimes.com/2013/12/22/us/judge-orders-girl-be-kept-on-ventilator.html and Confusion in the Determination of Death: Distinguishing Philosophy from Physiology  

"Ethical Issues in Evidence-Based Medicine" with Alex Kemper, MD,MPH, MS, 2014 David Green Memorial Speaker

Preventive care is one of the core components of child health care delivery.  In this Evening Ethics, we will explore some of the challenges surrounding the use in evidence in guiding screening policy.  To what extent should the components of preventive care be standardized?  If so, what should the standards be based upon?  To focus the conversation, we will consider screening services provided through newborn screening programs and those recommended by the American Academy of Pediatrics / Bright Futures for routine well-child care.  How do the standards differ for public health programs versus personal health care services?  How much does evidence play in the recommendations?  How much evidence is sufficient?  How should harms, which are not usually considered, be evaluated?  How can harms and benefits be compared when they accrue to different individuals?  How should cost be considered, especially because the benefit may not happen for many years after the initial screening?  When is screening research?  When should consent be obtained?  What should the expectation be for payers after a recommendation is made?

In preparation for this discussion, please see the three links below:

http://brightfutures.aap.org/pdfs/AAP_Bright_Futures_Periodicity_Sched_101107.pdf  (This is the AAP Periodicity Schedule, which outlines recommended screening services)

http://www.nature.com/news/2011/110713/full/475156a.html (A news article – Newborn Screening: A Spot of Trouble)

http://nj1015.com/what-is-ankyloglossia-and-why-is-it-harmful-to-kids/  (New Jersey news article on ankyloglossia)

Dr. Alex Kemper, who will facilitate this discussion, is a practicing pediatrician at Duke Medical Center.  His research focuses on improving the quality of care that children receive by strengthening the linkages between primary care, specialty care, and public health services.

 

"Transparency and Clinical Trials" with Trudo Lemmens 

Should the results of clinical trials be made publicly available, whatever they may be?  What reasons support making results public?  Is there a human right to the information from clinical trials? What steps should be taken if researchers are less than fully transparent in disclosing clinical trial results?

As background reading for this discussion, please see “Access to Information and the Right to Health: The Human Rights Case for Clinical Trials Transparency,” by Trudo Lemmens & Candice Telfer, American Journal of Law & Medicine, 38 (2012): 63-112.

Trudo Lemmens is Associate Professor and Scholl Chair in Health Law and Policy at the University of Toronto Faculty of Law, with cross appointments in the Faculty of Medicine and the Joint Centre for Bioethics. Professor Lemmens holds a Licentiate in Laws (LL.L) from the KU Leuven  (Belgium) and both a Master of Laws (LLM, specialization bioethics) and Doctorate of Civil Law (DCL) from McGill University. His research focuses on the interface of law, ethics, and professional governance. He is visiting Utah as part of the  Symposium on Secrecy at the Tanner Humanities Center on Friday, March 21st.  

"Moral Fictions in End of Life Care" with Dan Brock, PhD, 2014 Max and Sara Cowan Memorial Speaker

Dan W. Brock, 2014 Max and Sara Cowan Memorial Speaker, was the Frances Glessner Lee Professor of Medical Ethics in the Department of Global Health and Social Medicine and Director of the Division of Medical Ethics at the Harvard Medical School. He retired from Harvard at the end of 2013. Previously he was Senior Scientist and a member of the Department of Clinical Bioethics at the National Institutes of Health.  We are honored to have Dr. Brock  facilitate  this Evening Ethics. 

 In “Moral Fictions and Medical Ethics,” by Franklin G. Miller, Robert D. Truog and Dan W. Brock (Bioethics, 2009), Dr. Brock and colleagues argue:

 Conventional medical ethics and the law draw a bright line distinguishing the permitted practice of withdrawing life-sustaining treatment from the forbidden practice of active euthanasia by means of a lethal injection. When clinicians justifiably withdraw life-sustaining treatment, they allow patients to die but do not cause, intend, or have moral responsibility for, the patient’s death. In contrast, physicians unjustifiably kill patients whenever they intentionally administer a lethal dose of medication. We argue that the differential moral assessment of these two practices is based on a series of moral fictions – motivated false beliefs that erroneously characterize withdrawing life-sustaining treatment in order to bring accepted end-of-life practices in line with the prevailing moral norm that doctors must never kill patients. When these moral fictions are exposed, it becomes apparent that conventional medical ethics relating to end-of-life decisions is radically mistaken.

Dr. Brock asks, “Are we correct about moral fictions? If so, what are the implications for public policy? What are other examples of moral fictions?” Please read “Moral Fictions and Medical Ethics” and join us for what is sure to be thoughtful discussion. 

"Medical Nihilism, Today?" facilitated by Jacob Stegenga, PhD

Medical nihilism—the thesis that we should have low confidence in the effectiveness of medical interventions—was expressed by the ancients (Heraclitus, Virgil, and Hippocrates), early moderns (Shakespeare, Dryden, Montaigne, and Molière), and by prominent physicians in the nineteenth century. With the discovery of insulin, antibiotics, and other effective medicines, medical nihilism fell out of favor by the middle of the twentieth century. In the last decade, however, many physicians, epidemiologists, and journalists have begun expressing views like medical nihilism. For instance, Marcia Angell claims that “only a handful of truly important drugs have been brought to market in recent years” while the majority are “drugs of dubious benefit.” Or consider the article by John Ioannidis, the most-viewed article of PLoS Med: “Why Most Published Research Findings Are False”. A prominent article by Ben Goldacre last year was simply titled “The Drugs Don’t Work”. This new wave of medical nihilism focuses on overdiagnosis and overtreatment, widespread bias in research, and the low effectiveness of widely prescribed classes of drugs as reported by recent clinical trials and meta-analyses. What should we make of this new medical nihilism? Are recent drugs as ineffective as Angell and others claim they are? What changes to the broader context of medical research can be made to address the problems articulated by this new wave of medical nihilism? Dr. Stegenga will provide background; there will be no prior background reading needed for this session.

"Safety in the Balance: The Role of Health Care Professionals in Weighing Patient Autonomy and Safety among Older Adults with Decisional Impairment"  facilitated by Tim Farrell, MD, and Maureen Henry, JD

Impaired abilities among the elderly can raise concerns about self-neglect, the capacity to consent to or refuse treatment, and the capacity to drive, manage money, or live alone.  Almost every healthcare provider will encounter circumstances in which a person’s decision-making abilities raise ethical challenges.   Providers often grapple with abstract rights and duties and their practical manifestations: the need to balance an individual's safety against the actual harm that providers or courts may cause when they take away an individual's rights to control his or her life. Is weighing these rights what is needed to best address these cases?  If so, how ought these differing rights be weighed and what ought—and ought not—to be considered? How might providers, healthcare teams, and families work together to better help the elderly when they appear to be failing? Tim Farrell, MD, geriatrician, and Maureen Henry, JD, DMEH associate, will facilitate this discussion.  We hope that you will join us with your insights, concerns, and questions about this important topic.

Two background readings that can be found on our DMEH website will help prepare us for this discussion: “Elder Self-Neglect—How Can a Physician Help?” by Alexander K. Smith, M.D., M.P.H., Bernard Lo, M.D. and Louise Aronson, M.D., New Engl.  Jrnl. Med.  369; 26 (December 26, 2013) and “Does This Patient Have Medical Decision-Making Capacity?” by Laura L. Sessums, JD, MD, Hanna Zembrzuska, MD, Jeffrey L. Jackson, MD, MPH, JAMA 306;4 (July 27, 2011) 

GENETICS HOT TOPICS:  "Prenatal Whole-Genome Sequencing—Is the Quest to Know a Fetus’s Future Ethical?”

Genetic technologies are advancing rapidly, now enabling a full genome sequence on a fetus early in pregnancy.  While there are a number of technical challenges to introducing this technology into routine clinical practice, many of the challenges are ethical, legal, and social in nature.  This Evening Ethics discussion will focus primarily on the ethical issues raised by prenatal genome sequencing.  How much information about the genetic nature of the fetus should be provided to parents?  What are the appropriate uses of this information?  What are the risks of generating this information to parents, to the fetus, and to the future parent-child relationship?  How can parents be adequately informed bout the benefits and risks of this form of testing?  This discussion will explore these issues in an interactive discussion co-facilitated by Jeffrey Botkin, MD, MPH and Nancy Rose, MD.

 Background reading and preparation for this discussion can be found on the DMEH website: “Prenatal Whole-Genome Sequencing—Is the Quest to Know a Fetus’s Future Ethical?” Ilana R. Yurkiewicz, B.S., Bruce R. Korf, M.D., Ph.D., and Lisa Soleymani Lehmann, M.D., Ph.D., NEJM 370:3 (January 16, 2014)

Killing Children in Belgium?

In 2002, Belgium legalized euthanasia for adults eighteen years of age or older who are terminally or irremediably ill and undergoing intolerable suffering; this law requires voluntary request and has a number of safeguards built in.  In March 2014, King Philippe signed into law a measure passed by Parliament removing the age limit.   The newswires erupted with stories of "Killing Children in Belgium."   Is assisted dying in minors, as some have asked,  "the end of suffering, or the beginning of eugenics"?

 This discussion, facilitated by Peggy Battin, PhD, MFA,  end-of-life ethicist, and Jeff Botkin, MD, MPH, pediatrician and Medical Ethics and Humanities Division Chief,  will explore what is actually the case in Belgium, how it compares with what is the case in the U.S., and what the media response to the new Belgian law says about the situation both there and here.  Background reading materials, found on the DMEH website, include: “Pediatric Euthanasia in Belgium: Disturbing Developments” (JAMA 4/17/14), “Killing Children in Belgium” ( MSU Bioethics 4/28/14) , and “Forgoing Medically Provided Nutrition and Hydration in Children.” (Pediatrics 7/27/2009).

"When the Doctor Knows Best: Have Patients' Rights Gone too far?" with Barron Lerner, 2014-15 Max and Sara Cowan Memorial Speaker

The 1970s and 1980s saw the overthrow of medical paternalism, a system in which doctors made decisions for their patients, even actually deceiving them if they believed it was necessary. Patient autonomy, championed by the new bioethics movement, had won the day. Patients and families became the decision-makers, even for complicated medical questions. This discussion will ask whether the pendulum has swung too far in the direction of patients' rights, leading to cookbook medicine, ineffective interventions, rising costs and situations in which doctors feel they are actually "doing harm." Using stories from the career of his father, Dr. Phillip Lerner, an unabashed paternalist, Barron Lerner will explore the pros and cons of current strategies for making medical decisions. Background reading for this Evening Ethics is Barron Lerner’s July 3, 2014 article in the Wall Street Journal, “When the Doctor Knows Best.”

"Ethics and Ebola"

Hospitals across the United States (and the world) are preparing for the possibility that a patient will arrive infected with Ebola. This new epidemic is raising a host of ethical issues that occur when the patient is both victim and vector. Are healthcare workers obligated to treat Ebola patients and, in turn, risk contracting the disease themselves? How should experimental medications and interventions be distributed fairly? When are quarantine, surveillance, and travel restrictions appropriate and inappropriate? And what can we learn from the effective and ineffective responses to past epidemics?  As background for this session, please read “Ebola and the Epidemics of the Past.”  Please join us for this discussion facilitated by infectious disease physician, and Chief, emeritus, of the Division of Medical Ethics and Humanities, Jay Jacobson, MD, and Jim Tabery, PhD.

This program is approved for 1-½ hours of CME credit.

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