Evening Ethics Discussions 2017

"Is Proxy-Witnessing an Ethical Way to Remember the Holocaust and Prevent Future Atrocities?"

The death last July of Elie Wiesel, 87, a Holocaust survivor and winner of the Nobel Peace Prize, was a reminder that soon, there will be no eyewitnesses still living. How then do we heed what has been called humanity's "ethical imperative" to not forget so that the atrocities of the Holocaust will never reoccur in the future?

Literature scholar Susan Gubar suggests in her book Poetry after Auschwitz: Remembering What One Never Knew (2003), the possibility of "proxy-witnessing." Writers who did not participate in the Holocaust "testify…for those who cannot testify for themselves" by exercising their moral imagination. Through poetry's images and words, emotion and intellect, readers are transported to a communal memory of the past and then returned to the present where they may ethically look to the future. Proxy-witnessing may be applicable to other artistic mediums as well. Photography in particular has been discussed in relation to memory and representation. So, too, has tourism to Holocaust memorials, museums, and monuments; visitors are "secondary witnesses" and "producers of collective memory, historical knowledge, and ethical reflection" (Reynolds 2016).

Our discussion will begin with contributions from the University of Utah community. Jeff Botkin, M.D., M.P.H., associate vice president for research integrity and chief of the Division of Medical Ethics and Humanities, and Susan Folsom, a fourth-year medical student, both visited Auschwitz last summer with the program Fellowships at Auschwitz for the Study of Professional Ethics. We also will discuss the title poem, "Conversations with Survivors," from a collection by Jacqueline Osherow, Ph.D., U of U distinguished professor of English, whose writing is included in Gubar's book.

Background Reading:

Osherow, Jacqueline. Conversations with Survivors. Athens, GA: University of Georgia Press, 1994. (a selection from)

Reed, Brian M. "Poetry after Auschwitz: Remembering What One Never Knew." Rev. of Poetry after Auschwitz: Remembering What One Never Knew, by Susan Gubar. MLQ (September 2006): 411-16.

Additional optional readings:

Reynolds, Daniel. "Consumers or witnesses? Holocaust tourists and the problem of authenticity." Journal of Consumer Culture, 16(2), 334-353.

Gubar, Susan. Poetry after Auschwitz; Remembering What One Never Knew. Bloomington, IN: Indiana University Press, 2003.

“My patient has a DNAR order and needs an operation: What should I do?”  with 2017 David Green Memorial Lecturer, Mary E. Fallat, MD

Decisions to limit resuscitation efforts or to not attempt resuscitation on behalf of a child are carefully deliberated and thoughtfully made by family members and guardians with the understanding that they can be changed as needed. An opportunity for change arises if the child needs sedation, anesthesia, or surgery. This opportunity should not prompt an automatic discontinuation of the orders, but a required reconsideration of the choice to continue, discontinue, or amend the orders. These are not typically emergency situations and this should be a team effort such that the family has access to the full range of providers and support services needed to make a decision. This is a time when patient and family centered care should be at the forefront of the medical care provided to the family unit, particularly the patient who has a life limiting condition and wishes to die with dignity.

Please join us to discuss these and other questions:

  1. What would be your approach if a child needed surgery and had a DNAR?
  2. What are the differences between goal and procedure directed orders and their effects on the decisions made by providers during a procedure?
  3. If a person with resuscitation limits dies in the operating room or in the PICU during a procedure, should the death be viewed as a sentinel event?

Selected readings: (email linda.carrlee@hsc.utah.edu for copies)

  1. Fallat ME, Deshpande JK: Do-Not-Resuscitate Orders for Pediatric Patients Who Require Anesthesia and Surgery. Pediatrics. 114(6):1686-1692, 2004
  2. Walker RM. DNR in the OR: resuscitation as an operative risk. JAMA. 1991;266:2407-2412
  3. Redmann AJ, Brasel KJ, Alexander CG, Schwarze ML. Use of advance directives for high-risk operations: a national survey of surgeons. Ann Surg. 2012 Mar;255(3):418-23 doi: 10.1097/SLA.0b013e31823b6782  

 "Whose Story to Tell? The Ethics of Physicians Writing Their Experience" with 2017 Cowan Memorial Lecturer, Jay Barch, MD

How should physician/writers negotiate their dual and dueling obligations when writing about the medical experience, that is, honoring their obligations to put patients first and to protect their privacy and confidentiality, while honoring the writer's duty to his or her creative work and, ultimately, to the reader. Background Reading for this session: http://www.medpagetoday.com/publichealthpolicy/ethics/50943

A Special Evening Ethics Collaboration with The Association for Utah Genetic Counselors: “White People”: A staged Reading and Panel Discussion on Race, Religion, and Disability

The Association for Utah Genetic Counselors is hosting an education conference. The kickoff event is a staged reading by Salt Lake Acting Company of J.T. Rodger’s play, “White People”, followed by a panel and audience discussion reflecting on the themes of race, religion, and disability, facilitated by Dr. Gretchen Case. The Division of Medical Ethics and Humanities is co-hosting this Friday evening event and invites you to join this Evening Ethics Discussion.

What is cultural humility? How do health care professionals handle offensive comments related to race or religion? How should they? And what role do their colleagues have? How do we separate the professional and the personal?

Please RSVP to linda.carrlee@hsc.utah.edu if you are interested by March 31, 2017 since space is limited. There will be a separate sign-in sheet at the registration table for friends of the DMEH. Registration begins at 6pm and the staged reading of “White People” begins promptly at 6:30pm. Panel begins at 7:15pm.

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If you are interested in more information about the AUG conference, go to https://www.utahgc.org/events/2017-education-conference.

A GENETICS HOT TOPICS: Genetic Testing and Disability: Is Genetic Testing Discriminatory?

Prospective parents with heritable disabilities may encounter many ethical questions about their roles and responsibilities as prospective parents.  Sometimes, these questions are framed as questions about whether it is ethically permissible to select for disability, as in discussions about parents who are Deaf choosing to try to select for children who are Deaf.  Sometimes, the questions are framed as whether it is permissible to select against disability; Adrienne Asch, for example, was generally committed to procreative liberty but criticized abortion specifically for disability as discriminatory.  Another set of questions challenges people with disabilities as parents: they may be faced with criticisms about their abilities as parents and about themselves as procreators.  They may also be urged to consider pre- or post-implantation genetic testing to try to avoid passing on their conditions to offspring.  These kinds of questions may be posed by family and friends, implicitly or explicitly in public policy, or even in encounters with health care professionals.  How should we answer these and related questions?  Are they discriminatory, or otherwise ethically problematic, and why?  Join us for a discussion facilitated by Visiting Scholar Adam Cureton and Leslie Francis.  Adam is Assistant Professor of Philosophy at the University of Tennessee.  Prior to that, he did his Ph.D. in Philosophy at UNC Chapel Hill and received a B.Phil. in Philosophy from Oxford University, where he studied as a Rhodes Scholar.  His interests are mainly in ethical theory, the history of ethics, political philosophy and metaethics.  He writes widely on issues of disability and is founder and president of the Society for Philosophy and Disability. Adam has a visual disability and is the parent of two young children.

Background Readings: 

Adam Cureton, Some advantages to having a parent with a disability.  Journal of Medical Ethics 42, 1. 

Sheila Black, Passing My Disability on to my Children.  The New York Times  (Sept. 7, 2016).

 

“Are U.S. physicians complicit in unethical organ harvesting when they provide surgical education to international transplant physicians?”

Although organ trafficking and transplant tourism have raised ethical questions for many years, recent events have heightened concerns. In February 2017, the British Medical Journal retracted an article about a Chinese liver transplantation study after the authors "failed to persuade editors that 564 livers grafted in the course of the research were not taken from executed prisoners." An Australian researcher had alerted BMJ editors of the "statistical improbability" that so many livers could have been freely donated. The Vatican also held a Pontifical Academy of Science Summit on Organ Trafficking and Transplant Tourism in February. The international group Doctors Against Forced Organ Harvesting (DAFOH) reported that in China "anywhere between 100,000 and 1 million prisoners of conscience have been killed for their organs in the past 17 years." A majority of the prisoners are practitioners of Falun Gong, a spiritual practice that the Communist Party illegally banned in 1999 and continues to persecute heavily. However, other minority populations are also targets of alleged organ trafficking, including Uyghurs, Tibetans, and House Christians. Despite the Chinese Communist Party attempting to say the practice has stopped, there is no evidence to support this claim.

Leading our Evening Ethics Discussion will be Glynn Weldon Gilcrease, M.D., U of U assistant professor of oncology, who serves as deputy director of DAFOH. He has worked closely with David Matas, a Canadian lawyer specializing in refuge law and co-author with David Kilgour of Bloody Harvest: The Killing of Falun Gong for Their Organs (2009), which has been made into a documentary. Questions we'll discuss include:

  • What are the ethical ramifications of organ trafficking and transplant tourism for U.S. physicians?
  • Are health-care professionals obligated to care for patients who receive an organ transplant in a country that is suspected of illicit organ trafficking?
  • Should U.S. surgeons adopt prohibitions similar to Australia and Taiwan, which do not provide surgical education to Chinese physicians?

Background readings**:

Sharif A etal. “Organ Procurement From Executed Prisoners in China,” Am Journal Transplant 2014; XX: 1-7.

Matas, David. “Ethical standards and Chinese organ transplant abuse,” (Revised remarks for a presentation to the Department of Bioethics and Medical Humanism, College of Medicine, University of Arizona, 15 April, 2016)

**Contact linda.carrlee@hsc.utah.edu for copies of these articles

 

“Physician Assisted Suicide: Can we minimize its potential harms in the USA?” with Stuart Youngner, MD

Physician-assisted death (PAD) is now legal for about 20% of Americans. However, there has been little planning and preparation about how to minimize its potential harms to patients and physicians. What would an ideal process of continued quality improvement (CG!) look like for PAD? Please join us for an Evening Ethics discussion led by Stuart Youngner, MD, to address the following:

  • Who should lead such efforts?
  • Who should fund CQI and the research to support it?
  • What should the role of organized medicine be?
  • Do other countries have anything to teach us?
  • The difficulty of defining and measuring false positives and negatives in evaluating and modifying public policy. For example, how many cases are enough, too many, just right?

Stuart J. Youngner received a B.A. from Swarthmore College and an M.D. from Case Western Reserve University, where he is currently Professor of Bioethics. He did an internship in Pediatrics and a residency in Psychiatry at University Hospitals of Cleveland and subsequently received a fellowship from the National Endowment for the Humanities to study medical ethics at the Kennedy Institute of Ethics at Georgetown University. Dr. Youngner serves on the editorial advisory boards of the Journal of Medicine and Philosophy, the Kennedy Institute of Ethics Journal, and the Journal of Law, Medicine, and Ethics.

Background reading for this session is

Frye, John and Youngner, Stuart J. "A Call for a Patient-Centered Response to Legalized Assisted Dying," Annals of Internal Medicine, Vol. 165, No. 10, November 2016

This article can be found at http://web.a.ebscohost.com.ezproxy.lib.utah.edu/ehost/pdfviewer/pdfviewer?vid=1&sid=8c19ca20-6f02-48e3-acf6-844e2bfbcbbd%40sessionmgr4009&hid=4206

or through contacting linda.carrlee@hsc.utah.edu.

“Is an ethically-appropriate cost (or price) possible for a pharmaceutical?” with Jim Ruble, PharmD, JD

 Pharmaceutical drugs are frequently identified as having the fastest increasing prices in the US economy. Health care is a top expenditure in the US economy, representing approximately 25% of the US Federal Budget. Recent high-profile events have flared public dialogue regarding the ethics of drug/pharmaceutical pricing. A non-exhaustive list of events include, Epi-Pen price increases by Mylan, Turin Pharmaceuticals marketing of pyrimethamine (Daraprim), pricing of Hepatitis therapies - ledipasvir/sofosbuvir (Harvoni), deflazacort (Emflaza), and the escalating costs affiliated with oncology related and specialty pharmaceuticals.

There are many perspectives about the “fairness” of these pricing decisions. Many elements may contribute to policy frameworks, including intellectual property protection, research and development, regulatory licensing, marketing, supply chain disruptions, human need, and principles of resource allocation. Accordingly, this is a critical time for all stakeholders to be better informed about the equipoise – interface of science, economics, and ethics - in pharmaceutical pricing public policy.

Some of the content to be considered at this Evening Ethics:

  • Historical examples and global variability of pharmaceutical pricing
  • Intellectual property legal paradigms and duality of pharmaceuticals – health care commodity and tool for profit
  • Should pharmaceuticals follow the same economic rules as other commodities?

Background Reading: (contact linda.carrlee@hsc.utah.edu for copies)

Parker-Lue S, Santoro M, Koski G. The ethics and economics of pharmaceutical pricing. Annu Rev Pharmacol Toxicol. 2015;55:191-206. doi: 10.1146/annurev-pharmtox-010814-124649. Epub 2014 Aug 13.

Additional optional Reading:Gusmano MK, Arno PS. Bioethics Forum Essay: The Challenge of High Drug Prices in the US. The Hastings Center, Published: October 5, 2016. 

Evening Ethics Discussion and screening of documentary film, "Dying in Vein"

This latest film from Salt Lake City-based filmmaker Jenny Mackenzie is an intimate and deeply personal exploration of the opiate and heroin addiction crisis. The film follows two young women trying to get clean, a 22-year-old in recovery, a family grieving the loss of their son, and a team of ER doctors trying to save their patients. Through these four stories, the film explores the pill to heroin pipeline and the shame and blame that surround the disease of addiction. The film looks at the aftermath of the death of loved ones, the daily commitment to sobriety, the reality of considering treatment after multiple relapses, and the culpability of our medical communities in this crisis. A discussion of the ethics will follow the film.

Discussion Moderators:

Gretchen A. Case, PhD, Associate Professor, Division of Medical Ethics and Humanities Department of Internal Medicine, School of Medicine

Ana Maria Lopez, MD, MPH, FACP, Associate Vice President for Health Equity and Inclusion, University of Utah Health, Associate Director, Collaboration and Engagement, Utah Center for Clinical and Translational Science, Director of Cancer Health Equity, Huntsman Cancer Institute, Professor of Medicine, University of Utah School of Medicine, and President-Elect, American College of Physicians

**Please note that this is 30 minutes longer than our usual Evening Ethics as we will be showing the film as well as discussing it. (There is no back-ground reading preparation.)

This is a collaborative Evening Ethics with the Spencer S. Eccles Health Sciences Library, the Office of Health Equity and Inclusion, and the Division of Medical Ethics and Humanities 

“Targeted Regulation of Abortion Providers (TRAP): ethical issues”

Targeted Regulation of Abortion Providers, or TRAP laws, have been proliferating in many states. These laws impose special requirements on abortion providers: requirements of informed consent, equipment, inspections, fetal protection, and even procedures. In 2016, the U.S. Supreme Court held in Whole Women’s Health v. Hellerstedt that TRAP laws are unconstitutional if they impose unreasonable burdens on women’s health without offsetting benefits supported by evidence. Please join us for an Evening Ethics discussion that will include such questions as: How do these TRAP laws implicate professional standards of care? How do these TRAP laws implicate the profession's ethical obligations (such as to "do no harm" and promote patient autonomy?) Who speaks for the profession on these issues? What if members of the profession disagree? How does a physician separate out their personal/philosophical views from those of the profession?

Background reading for this session is Michele Goodwin’s “Whole Woman’s Health v. Hellerstedt: The Empirical Case Against Trap Laws.” (Medical Law Review, Vol. 25, No. 2, pp. 340–351). Contact linda.carrlee@hsc.utah.edu for copies.

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For those interested in this topic in more detail, a symposium sponsored by the University of Utah S.J. Quinney College of Law Center for Law & Biomedical Sciences on the “Medical and Legal Aspects of Targeted Regulation of Abortion Providers (TRAP) Laws,” will be held on December 1 @ 8:30 am - 4:00 pm at the S.J. Quinney College of Law. 

“Professional Conscripts: Rethinking Conscience in Medicine”with 2017-18 Cowan Memorial Lecturer, Abraham M. Nussbaum, MD

Recently, the question of conscientious objection was prominently raised in an NEJM article by Ronit Y. Stahl, Ph.D., and Ezekiel J. Emanuel, M.D., Ph.D. Using this article, “ Physicians, Not Conscripts—Conscientious Objection in Health Care” (NEJM, 2017 Apr 6;376(14):1380-1385) to frame our conversation, we will consider the similarities and differences between conscientious objection in the military and in medicine; ask if it should be legal for a health practitioner to opt out of performing specific procedures because of his or her moral or religious beliefs; if and when a practitioner should not participate in a particular practice endorsed by a professional society; consider if professional societies constitute a moral authority; explore the difference between individual and communal conscience; and think through other ways to honor pluralism within contemporary health professions. (Contact Linda.carrlee@hsc.utah.edu for a copy of this article.)

Abraham M. Nussbaum, MD,MTS, our 2017-18 Cowan Memorial Speaker, will facilitate this discussion. Dr. Nussbaum is an Associate Professor, Dept. of Psychiatry, University of Colorado School of Medicine, and a board certified psychiatrist who practices at Denver Health, an academic safety-net hospital in downtown Denver.

He previously directed its adult inpatient psychiatry units, which care for adults throughout Colorado experiencing mental health crises and currently serves as Chief Education Officer, providing strategic vision, daily direction, and administrative oversight for Denver Health’s clinical education programs. In his practice, he strives to inhabit the roles described in his book, The Finest Traditions of My Calling: One Physician’s Search for the Renewal of Medicine, asking how he and his fellow practitioners can restore patients to health through person-centered care. Dr. Nussbaum is actively involved in teaching undergraduate students, medical students, psychiatry residents, and psychosomatic fellows.

“Genetics Hot Topics: Gene Drive: Scientists Can Now Use Genetics to Alter Ecosystems. Should They?"

Current gene-editing technologies (like CRISPR-Cas9) now have the potential to alter populations, species, and even entire ecosystems. A genetic alteration inserted into a small population of organisms released into the wild would allow for that altered genetic variant to spread through an entire population as those original organisms reproduce and pass on the variant. Scientists have proposed using the technology--called "gene drive"--to alter organisms and the environment. For example, a gene drive involving mosquitoes could limit the insects' ability to transmit deadly diseases like malaria, dengue, and Zika. Gene drives have also been proposed to fight invasive species that decimate island ecosystems. The gene drive technology, however, will itself alter the ecosystems. How should this technology be regulated? Can it be safely researched? Are there ways to anticipate the long term impact of altering whole populations? Might the technology be weaponized and, if so, how can that be prevented? This Genetics Hot Topics will be devoted to assessing who should be in the driver' seat when it comes to gene drive.

Background readings for this session:

Mechanic, Michael. Mother Jones, “This Technology Could Stop The World’s Deadliest Animal.” Aug 14, 2017

Pugh, Jonathan. Practical Ethics, “The Ethics of Genetically Modified Mosquitoes and Gene-Drive Technology,” University of Oxford. Dec. 2, 2015. (blog post)

Optional:

The National Academies of Sciences Consensus Study Report : Gene Drives on the Horizon: Advancing Science, Navigating Uncertainty, and Aligning Research with Public Values (2016)

 

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

 

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