Evening Ethics Discussions 2018

 

“OMG, What R They Thinking: Adolescent Refusals of Important Medical Care”

In recent years, several cases involving adolescent patients refusing life-saving treatment (blood transfusions, cancer treatment) have been covered by national media outlets, raising questions about the role of the adolescent in medical decision-making. Should adolescents be allowed to refuse life-saving medical treatment? Does it matter whether their parents agree or disagree with their decision? Does the age of the adolescent matter? Using several case studies, we will discuss whether adolescents, as a rule, possess capacity of sufficient quality that their decisions should be respected even in the case of life-altering medical decisions. This session will touch on the traditional approach to determining when adolescents should have their decisions respected (including what the American Academy of Pediatrics Committee on Bioethics has said), the evolving understanding of adolescent brain development, and the implications of that “brain science” for how we should understand adolescent decision-making capacity. Please contact linda.carrlee@hsc.utah.edu for a pdf of the background reading for this event, “Adolescent Refusal of Lifesaving Treatment: Are We Asking the Right Questions?” by Douglas Diekema, MD, MPH. (Adolesc Med 022 (2011) 213228).

“A Terror Way Beyond Falling: Suffering, Suicide, and Physician Aid-In-Dying”

“The so-called ‘psychotically depressed’ person who tries to kill herself doesn’t do so out of quote ‘hopelessness’ or any abstract conviction that life’s assets and debits do not square. And surely not because death seems suddenly appealing. The person in whom Its invisible agony reaches a certain unendurable level will kill herself the same way a trapped person will eventually jump from the window of a burning high-rise. Make no mistake about people who leap from burning windows. Their terror of falling from a great height is still just as great as it would be for you or me standing speculatively at the same window just checking out the view; i.e. the fear of falling remains a constant. The variable here is the other terror, the fire’s flames: when the flames get close enough, falling to death becomes the slightly less terrible of two terrors. It’s not desiring the fall; it’s terror of the flames. And yet nobody down on the sidewalk, looking up and yelling ‘Don’t!’ and ‘Hang on!’, can understand the jump. Not really. You’d have to have personally been trapped and felt flames to really understand a terror way beyond falling.” -David Foster Wallace (2009), Infinite Jest, pg. 696.

In late 2016 the American Psychiatric Association (APA) stated that psychiatrists ought not participate in physician aid in dying (PAD) or euthanasia for non-terminal illnesses. This practice already occurs in some European countries. As Mark Komrad, a psychiatrist on the APA’s national ethics committee, explained, the organization was concerned about this practice for multiple reasons: that it communicates that there is no hope for persons with severe suffering due to psychiatric illness, that persons with psychiatric illness have impaired decision-making capacity, and that judgments about whether suffering is interminable depend upon patients’ assessments of whether treatments like ECT are acceptable, even though these assessments could be controversial or misinformed. In effect, Komrad and the APA have opposed this practice because they are concerned that vulnerable psychiatric patients whose suffering might be treatable could instead receive aid in dying.

It would undoubtedly be a bad thing if that worry came to fruition. Still, we’re concerned that the APA’s opposition to PAD for non-terminal psychiatric illness is too facile. We’ll argue that the central justifications for PAD in cases of terminal illness also apply to some cases where people suffer only from non-terminal psychiatric illness. Moreover, we argue that the APA’s reasons for excluding persons with non-terminal illness from PAD are not compelling.

On the other hand, we are also sensitive to the APA’s concerns about PAD and euthanasia, and agree that many persons with psychiatric illness who suffer from suicidal ideation should not have access to PAD. Furthermore, we regard psychiatric practices like involuntary civil commitment and involuntary medication to prevent suicide as generally justifiable even though they are, as we will argue, deeply at odds with the rationale for PAD for non-terminal, psychiatric illness.

The result, we think, is a serious dilemma: how do we reconcile the idea that medicine should be empowered to prevent persons from attempting suicide with the idea that severe and intractable suffering, even when it is due to a non-terminal illness, can make death seem a reasonable option?

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

  • “Capacity Evaluations of Psychiatric Patients Requesting Assisted Death in the Netherlands” by S.N. Doernberg, et.al. (Psychosomatics2016:57:556–565)
  • “Psychiatric evaluations for individuals requesting assisted death in Washington and Oregon should not be mandatory” by Linda Ganzini, MD, MPH (General Hospital Psychiatry 36 (2014) 10–12

"A Panel Discussion and viewing of documentary film: The State of Eugenics: The Story of Americans Sterilized Against Their Will"

This Evening Ethics is presented in collaboration with UCEER (The University of Utah Center for Excellence in Ethical, Legal, and Social (ELSI) Issues in Genetic Research) and the Spencer S. Eccles Health Sciences Library (EHSL).

From the 1930s to the 1970s, more than 7000 people were sterilized, often against their wishes and without their knowledge, by the state of North Carolina. While not the only state to use official government channels to promote procure “eugenic sterilizations” for people deemed unworthy of reproducing, North Carolina has one of the best documented histories of the practice and subsequent attempts at reparations. This 80-minute documentary film portrays the lives and struggles of the people and families wronged, and now seeking justice. There will be no background reading for this session, but it will be one-half hour longer than our typical Evening Ethics program in order to have adequate time for the panel-led discussion after we view the film.

 "Racism and Discrimination in Medicine -When the Physician is the 'Victim'"with J. Nwando Olayiwola, MD, MPH, FAAFP

This Evening Ethics is presented in collaboration with the Office of Inclusion and Outreach and the Spencer S. Eccles Health Sciences Library.

 Nwando Olayiwola, MD, MPH, FAAFP J. Nwando  Olayiwola, MD, MPH, FAAFP

 In medicine, there is almost a sacred covenant between the physician and the patient, in which the physician, under oath to "do no harm," feels personally responsible to cater to the needs of their patients, sometimes at the risk of their own wellness. Additionally, there is a high level of trust that patients extend to their physicians, not always earned, and often assumed. However, even with this, physicians are increasingly learning in course of their training about the impact of their own biases on patient care and outcomes. Much of our medical education and training, rightfully, exposes resultant health and health care disparities by virtue of physicians’ overt or covert prejudices that influence their care and their often unilateral power in relationships. However, what if that sacred relationship is distorted by the patient's prejudices? What if the relationship dynamic is shifted and the patient is the owner of that power? In many cases, that's a good thing- we want patients to feel more empowered and activated in their own care. We want patient voices to be heard and respected. But, in the case that a physician is subject to discrimination, racism or sexism by a patient, have we prepared ourselves for how to respond? What should that preparation look like? In this session, Dr. Olayiwola will share her perspective on her article, “Racism in Medicine: Shifting the Power,” our background reading for this session, linked here, and facilitate a dialogue around "-isms" and "-schisms" in medicine, how to prepare physicians and other health care professionals for these realities, how to understand microaggressions, and how to regain power and self-confidence.

Dr. Olayiwola is CEO & Founder, Inspire Health Solutions, LLC & Association of Minority Women Professionals,  Chief Clinical Transformation Officer, Rubicon MD,  Associate Clinical Professor, UCSF Department of Family & Community Medicine.

 

"Pre-implantation Genetic Testing with IVF: Who Benefits?" with Erin Rothwell, PhD

The past several years have shown a steady increase in the use of pre-implantation genetic testing for aneuploidy (PGT-A) in women undergoing in vitro fertilization (IVF). In this procedure, the embryos are not evaluated for specific genetic conditions such as sickle cell disease or cystic fibrosis, but for chromosomal aneuploidy, and presence of too many or too few chromosomes. The growing presence of this practice in reproductive medicine merits attention not only because there are no national recommendations for use of PGT-A, but also because it raises a host of ethical, legal and social concerns relevant to practitioners, expectant parents, and policy-makers.  Some of these include: the routinization of testing and informed consent, challenges relating to the scope and delivery of genetic counseling, especially given the prevalence of mosaic embryos; the widening of social and economic disparities; and an array of policy issues, such as provider liability, regulatory oversight, and impact on the advancement of disability rights.

 Background readings for this session: (contact linda.carrlee@hsc.utah.edu for copies)

 

 CANCELED: (to be rescheduled at a later date) "Does Medical Humanities Still Bridge Only 'Two Cultures?'" with Louis Borgenicht, MD, Susan Sample, PhD, MFA, and Gretchen Case, PhD

In 1959 British novelist and scientist C.P. Snow gave a lecture which fomented much commentary and discussion over the years. In “The Two Cultures” he argued, "The intellectual life of the whole of Western society is increasingly being split into two polar groups…literary intellectuals at one pole--at the other scientists…between the two a gulf of mutual incomprehension.”

In 1986, Louis Borgenicht, MD wrote an essay trying to assimilate these thoughts between the literary intellectuals (humanists) and scientists (physicians.) Is this cultural divide relevant to medicine in the 21st century? We will discuss his article, “Medicine Between Two Cultures, ” look at current critical responses to C.P. Snow’s paradigm in medical contexts, and explore a new cultural divide between medical humanities and health humanities. These distinctions affect how we educate healthcare providers and trainees and ultimately, the delivery of healthcare.

Background Readings for this session: (Please contact Linda.carrlee@hsc.utah.edu  for copies of these articles.)

 “The $5000 Icepack: What is the Cost of Emergency Care?”with Tom Miller, MD, CMO UHealth, Scott Smith, JD, General Counsel U Health, and Gretchen Case, PhD, Chief, PMEH

Billing for healthcare services is a puzzle to many people in the United States; finding out what care costs in the emergency room might be the most difficult puzzle of all.  Patients have reported exorbitantly expensive charges for emergency room services—even when those services were declined—while administrators point out the significant costs of maintaining medical teams ready for any situation that comes through the door.  What information do patients need to avoid unexpected bills in the ER?  How can individual providers advocate for patients and help them navigate a complex system?  How might hospitals and health systems respond to stories of billing practices that may dissuade people from seeking medical care in an emergency?  Two background readings for this session are found at:

https://www.vox.com/2018/5/1/17261488/er-expensive-medical-bill

https://khn.org/news/sticker-shock-jolts-oklahoma-patient-15076-for-four-tiny-screws/

From the Evening Ethics discussion: Power Point on EMTALA by Scott Smith, JD, General Counsel UHealth.

From the Evening Ethics discussion: Power Point by Tom Miller, MD, CMO UHealth.  

Rescheduled: "Does Medical Humanities Still Bridge Only 'Two Cultures?'" with Louis Borgenicht, MD, Susan Sample, PhD, MFA, and Gretchen Case, PhD

In 1959 British novelist and scientist C.P. Snow gave a lecture which fomented much commentary and discussion over the years. In “The Two Cultures” he argued, "The intellectual life of the whole of Western society is increasingly being split into two polar groups…literary intellectuals at one pole--at the other scientists…between the two a gulf of mutual incomprehension.”

In 1986, Louis Borgenicht, MD wrote an essay trying to assimilate these thoughts between the literary intellectuals (humanists) and scientists (physicians.) Is this cultural divide relevant to medicine in the 21st century? We will discuss his article, “Medicine Between Two Cultures, ” look at current critical responses to C.P. Snow’s paradigm in medical contexts, and explore a new cultural divide between medical humanities and health humanities. These distinctions affect how we educate healthcare providers and trainees and ultimately, the delivery of healthcare.

Background Readings for this session: (Please contact Linda.carrlee@hsc.utah.edu  for copies of these articles.)

"When Patient Care Conflicts with the Values of a Religiously-Affiliated Hospital/University” 

Facilitators: Lars Nielsen (Counseling and Psychological Services, Brigham Young University) and James Tabery (Department of Philosophy, University of Utah)

Description: Therapists and counselors at religiously-affiliated universities and hospitals face a challenge when the personal care of their patients/students doesn't align with the values of the institution. How should a counselor at such a university advise a student who feels disillusioned about her faith? How should a therapist at such a hospital counsel a patient who requests services not supported by the institution for religious reasons?

This Evening Ethics discussion will draw together practitioners from a variety of professional backgrounds and a variety of religiously-affiliated institutions to assess this pressing challenge with direct implications for patient/student populations.

Links to background readings: (Or contact linda.carrlee@hsc.utah.edu for pdfs)

“To See the Suffering: The Humanities Have What Medicine Needs,” A Viewing and Discussion of the 2018 Jefferson Lecture in the Humanities delivered by Rita Charon, MD, PhD and Celebration of the 5th issue of Rubor: Reflections on Medicine from The Wasatch Front

We will live stream Dr. Charon’s 2018 Jefferson Lecture, “To See the Suffering: The Humanities Have What Medicine Needs” promptly at 5:30pm from the Warner Theatre in Washington D.C. After the lecture we will discuss how arts and humanities are integrated into medical education and professional practice at the University of Utah. We will also celebrate publication of the latest issue of Rubor, the arts and literary magazine founded by medical students at the U. The Jefferson Lecture in the Humanities is the highest honor the National Endowment for the Humanities (NEH) bestows for distinguished intellectual achievement in the humanities. This year’s honor goes to Dr. Rita Charon, a Harvard-trained physician and English literature scholar, and founding chair and professor of medical humanities and ethics and professor of medicine at the Columbia University Irving Medical Center. Dr. Charon is known for her theory of narrative medicine, which uses knowledge gleaned from the study of literature to understand the stories created and told in clinical settings. 

“Hidden and not-so-hidden conflicts of interest: how much should we care?” facilitated by Jeffrey R. Botkin, MD, MPH

Many faculty members have financial ties to companies that develop and market drugs and devices for use in medical care.  These financial relationships arise from speaking fees, service on advisory committees or corporate boards, patents, and equity interests in companies.  When a faculty member has a significant financial relationship to an external entity that is related to the faculty member’s research, disclosure of that relationship is required and the institution works with the faculty member to manage, reduce or eliminate any conflicts of interest.  This system is considered important to minimize bias in the conduct of research and to maintain trust in the system by which the safety and efficacy of drugs and devices is assessed.  But the system is not entirely effective due to inadequate disclosures, failures to follow management plans, weak management plans, and the lack of serious penalties for non-compliance.  Further, as the reading illustrates, new challenges are emerging in the form of post-hoc payments from regulated companies to physicians and scientists after they serve on advisory committees to the FDA.  This form of payment is entirely unregulated by the system.  In the discussion, we will review the key concepts relevant to our approach to conflicts of interest and the ways in which the system is succeeding and failing. Background article to read for this session is “Hidden Conflicts” by Charles Piller, (Science 2018 Jul 6;361(6397):16-20)  https://www.ncbi.nlm.nih.gov/pubmed/29976808

"Silences and Last Words: Poetry as Witness at the End of Life" with Rafael Campo, MD, 2018-19 Medical Humanities Lecturer

This event is a collaboration with The Program in Medical Ethics and Humanities in the Division of General Internal Medicine, Department of Internal Medicine, University of Utah School of Medicine, The Office of Health Equity, Cancer Health Equity, Center on Aging, School for Cultural and Social Transformation, the Tanner Humanities Center, and the Creative Writing Program.

For a few short poetry selections from Dr. Campo, as background readings for this session, contact linda.carrlee@hsc.utah.edu

Immediately after this session, the HSEB Bookstore will host a book sale of copies of Rafael Campo’s newest book, Comfort Measures Only: New and Selected Poems, 1994-2016, and Dr. Campo will sign his book for you.

 

DISCLOSURE:

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

 

 

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