Medical Ethics

Evening Ethics Discussion Group

2005

  • January: Brain death denied: what legislatures and doctors have done and can do when families do not accept the concept and diagnosis of brain death     
  • February: Medical Marijuana     
  • March: Why Literature is Important for Medicine  
  • April: The Bell Curve: what happens when patients find out how good their doctors really are     
  • May: Culture Wars: Politics and Tragedy in Hospice and Hallowed Hall
  • June: Controversies in Organ Donation: The Altruistic Willing Donor 
  • July: Hold Your Breath
  • August: Informed Consent in Emergency Research: An Ethical and Logistical Problem
  • September: Are You Ready for Your Medical Record to Be Online and Accessible?
  • October: Fallacies of Patient Centeredness and Shared Decision Making    
  • November: Medical Ethics in Disasters
  • December: When Vaccines are in Short Supply: Problems in Just Disrtibution

Brain death denied: what legislatures and doctors have done and can do when families do not accept the concept and diagnosis of brain death  

This month’s discussion will address conflicts that arise when children are diagnosed as “brain dead.” These issues have been brought to the forefront in the recent, disturbing story of Jessie Koochin, a child with metastatic malignancy and a medical diagnosis of brain death, that was covered extensively by the Salt Lake City media, and which received national attention. Our discussion will include reasons why brain death remains confusing and explore what steps are possible to resolve the understandable conflicts that arise when parents and physicians take a very different view of this physical state.

Questions we will discuss include: Should there be exceptions to how patients, especially children, are treated when parents reject the concept of brain death, and, if there should be exceptions, is there anything special about religious objections? Should physicians be able to unilaterally withdraw life support from patients who meet this whole brain definition of death, or should parental permission be required to withdraw life support?

We will discuss from Utah, New York and New Jersey, which deal differently with these issues, sections from an article on brain death in pediatrics that highlight several ethical issues, and two newspaper articles that bring to life the stories we will be talking about: The Jesse Koochin case, and the Mariah Scoon case.

Write up of the January  Program

Medical Marijuana  

To introduce the issues in this controversial topic, we will be considering the following questions: (1) Whose concerns should be the primary drivers of policy regarding the use of medical marijuana? Is this issue one to be decided primarily by physicians, public policy makers, politician's, patients, law-enforcement, or some combination of these? (2) Is there anything distinctive about the state of Utah that might affect whether or not medical marijuana should be legalized? (3) Is compromise      possible in this issue?   

Two short articles will help prepare you for this interesting and informative discussion:
1. Steinbrook R. "Medical Marijuana, Physician-Assisted Suicide, and the Controlled Substances Act", New England Journal of Medicine. September 30, 2004;351:1380-1383.
2. "Preserving the Power of Congress" (New York Times November 29, 2004) an article that discusses the issues in the recent Supreme Court case about the use of medical marijuana.    

For those who are interested in investigating this issue further before discussing it, here are four additional articles:
1. Hayry, M, "Prescribing cannabis: freedom, autonomy, and values," Journal of Medical Ethics, 2004; 30:333-336. 2. Clark, Peter A, "The Ethics of Medical Marijuana: Government Restrictions vs. Medical Necessity," Journal of Public Health Policy, 2000; 21(1): 40-59.
3. Barnes, R. Eric, "Reefer Madness: Legal & Moral Issues Surrounding the Medical Prescription      of Marijuana," Bioethics; 2000; 14(1):16-41.
4. Clark, Peter A, "Medical marijuana: should minors have the same rights as adults?,"Med Sci Monit; 2003; 9(6):ET1-19.    

Write up of the February  Program

Why Literature is Important for Medicine

The evening program will include our David Green Memorial Lecturer, Dr.John Lantos. This will provide an unusual blend of our Evening Ethics Discussion and our Physicians’ Literature and Medicine Discussion. Dr. Lantos has suggested that we read the story, "People Like That Are the Only People Here: Canonical Babbling in Peed Onk" by Lorrie Moore, in her book Birds of America. We will also invite physicians who attend our Literature and Medicine Program to attend this  Evening Ethics Discussion. Our discussion will focus on what can the reading and discussion of non-medical literature do for us as individuals and as clinicians.    

Write up of The Value of Literature and Medicine Program

The Bell Curve: what happens when patients find out how good their doctors really are     

Atul Gawande is the author whose story,"Complications" and book of the same name we've discussed in our Evening Ethics and Literature and Medicine discussion groups. He has recently published the attached provocative article in The New Yorker. ( December 6, 2004; http://newyorker.com/fact/content/?041206fa_fact">http://newyorker.com/fact/content/?041206fa_fact) In it he says, "It used to be assumed that differences among hospitals or doctors in a particular specialty are generally insignificant. If you charted a graph showing the results of all the centers treating cystic fibrosis-or any other disease, for that matter-people expected that the curve would look something like a shark fin, with most places clustered around the very best outcomes. But the evidence has begun to indicate otherwise. What you tend to find is a bell curve: a handful of teams with disturbingly poor outcomes for their patients, a handful with remarkably good results, and a great undistinguished middle."

While much attention has been devoted to disclosure in the context of conflict of interest, not nearly as much emphasis has been placed on physician or institutional disclosure of performance records. In his article, Gawande explores not only whether we should do that but also some examples of what happens when we do. He also looks at some of the features that seem to characterize really excellent programs.

The article has several themes that should stimulate an interesting discussion. A few questions to consider are:         

  1. Can we agree on a performance measure for a doctor or a program and can we find a reliable way to measure it?     
  2. If the patient owns the medical record but rarely sees it, who owns performance data and who gets to see it? Doctors, hospitals, patients families, and third party payers are all possible  answers.      
  3. If better care is available elsewhere and patients/families want it, who has the responsibility to pay for it?      
  4. Can we distribute medical performance in the shape of a shark fin and not a bell curve?        

Write up of the April Program.

Culture Wars: Politics and Tragedy in Hospice and Hallowed Hall

Although it is hard to imagine that more needs to be said about the case of Terri Schiavo, the understandable quiet, and reflection that followed her death may have changed the way we think about this unusual and in many ways unprecedented case. The possibility of new personal and professional practices, and even new legislation following this case make it imperative that we really understand it, and its implications. Two current articles provide excellent overviews of the medical facts and ethics implications (Timothy Quill), and the legal and political issues (George Annas).   

References:
1. Quill TE. Terry Schiavo - A Tragedy Compounded. New Engl J Med. April 21, 2005;352:1630-1631.
2. Annas, GJ. "Culture of Life" Politics at the Bedside - The Case of Terri Schiavo. New Engl J Med. April 21, 2005;352:1710-1715.

Controversies in Organ Donation: The Altruistic Willing Donor 

At a previous Evening Ethics discussion we focused on the black market that has developed in organ transplantation. The fascinating counterpoint to that is the growing phenomenon of living individuals who choose to donate an organ to an unknown or unrelated individual. This phenomenon which appears to be motivated by altruism raises interesting questions about what actually motivates such individuals, and how we should regard their action. The short articles listed below should help acquaint you with this intriguing phenomenon which links altruism with technology.   

We will discuss several of the following questions:         

  1. Even though they don't request it, should "altruistic" organ donors receive some special medical consideration such as full reimbursement for any complications they encounter, higher priority for biological or artificial organ support if they should later need it, or special consideration for income tax purposes?      
  2. How will different religions, especially those who place a high priority on bodily integrity regard this new way that people choose to help others?      
  3. 3. What standard of informed consent should apply for a procedure that offers no direct medical benefit to the donor?      
  4. Should the phenomenon of altruistic organ donation play a significant part in the consideration of a potential paid or rewarded donor program?      
  5. What awareness and access to donor and recipient identity should be supported by transplantation networks?  

As usual we will extend special invitations to this discussion to people with unique perspectives and special expertise. For this discussion, that will include individuals that have made non-directed kiidney donations, also, coordinators and clinicians who work in the transplant program.  

References:
1. Gohh RY, Morrissey PE, Madras PN, Monaco AP. Nephrol Dial Transplant. 2001;16:619-621.
2. Sotiropoulos GC, Brokalaki EI. Hepato-Gastroenterology. 2004;51:6-8.   

Write up of the  June Program

Hold Your Breath

We will be viewing and discussing together the 2005 hour-long documentary, Hold Your Breath, co-produced by the Stanford University Center for Biomedical Ethics and Active Voice, at our July  Evening Ethics discussion group. This film reveals the complexities of cross-cultural communication through the dramatic journey of Mohammed Kochi—a refugee from Afghanistan, now living in California—who is struggling with progressing stomach cancer. It shows how he must navigate through the colliding cultures of Islam, with its deep faith in Allah, and western medicine, with its steadfast belief in science. Language barriers and religious beliefs are the two most common problems in doctor-patient relationships, according to Dr. Clarence Braddock, Stanford associate professor of Medicine. As our Utah patient population grows more ethnically, culturally, and religiously diverse this discussion should prove both timely and helpful.  

Some questions we may discuss include:

  1. What obligation do doctors have to ensure that patients understand their diagnosis, prognosis, and the risks and benefits of treatments?
  2. What steps would suffice to establish whether patients understood those elements of  their condition? 
  3. What specific adjustments or accommodations should physicians include in ethical decision making for patients like Kochi?
  4. Are there reasons to regard patient choices based on culture, religion, or ethnically different from those based on idiosyncratic preferences of competent patients?

Informed Consent in Emergency Research: An Ethical and Logistical Problem

Salt Lake City and its two leading medical institutions, LDS Hospital and the University of Utah Medical Center, are major participants in a multi-center blood substitute trauma study. The ethical issues in such a study include whether and how to do a study without real time informed consent from patients who are unable to provide it due to their emergent medical condition. You can get an immediate sense of how these issues are framed by comparing the description of the study in a recent article published by http://www.wired.com/ and the official title of the study assigned by the manufacturer and presented to Institutional Review Boards.    

"Without waiting to get consent, paramedics will inject a fake blood product into half of the eligible patients chosen to take part in the new study. The other half will get a routine treatment of transfusion with saline solution until they reach the hospital. For now, the artificial blood know as PolyHeme, isn't approved for general use but it will slip into the veins and arteries of unconscious patients who won't be able to say no." 

Study title: "A phase three, randomized, controlled, open-label multicenter, parallel group study using provisions for exception from informed consent requirements designed to evaluate the safety and efficacy of Poly SFH-P injection when used to treat patients in hemorrhagic shock following traumatic injuries beginning in the pre-hospital setting."      

We have referenced recent articles from the Salt Lake Tribune, Wired News, and the guidance from the federal government to Institutional Review Boards. There is a University of Utah Health Sciences site that has much more information about the study, www.uuhsc.utah.edu/polyheme  We will invite people directly involved in the conduct of the study to attend our session, but because the study will be done in our community, any of us could potentially be a participant.    

References
1. Utah will test blood substitute, Public can opt out: State emergency-service workers will adminster  up to 18 random doeses of PolyHeme. Hamilton C. Salt Lake Tribune. Wednesday June 15, 2005.
2. Fake Blood, Real Controversy. Dotinga R. Wired News. April 6, 2004.
3. Polyheme Blood Substitute Trauma Study, http://uuhsc.utah.edu/polyheme/

Are You Ready for Your Medical Record to Be Online and Accessible?

We will talk about the ethical concerns, and the advantages and challenges of a National Health Information Network. The brief articles referenced below, one from Federal Telemedicine News, another from Annals of Internal Medicine, and the third from the American Journal of Bioethics will acquaint you with an incredibly ambitious and expensive federal program strongly supported by the President and our former Governor Mike Leavitt, the Secretary of HHS. The program is currently budgeted at 86.5 million dollars this year and 125 million dollars next year just to pave the way for "interoperability." The infra structure could cost 400 billion dollars over five years "if indeed the United States is serious about moving from a siloed, paper based system, to one that is electronic and fully connected." While proponents may see the national health information network as a way to make the patient's medical record better, safer, and more equitable, others are understandably quite concerned about the abuse of such a system, particularly with respect to privacy and potential impact on insurability, employability, and securing credit. As an exercise before our discussion you may want to ask yourself whether there is something about your medical history that you would want clinicians to know almost instantly if they didn't know you and you are unable to tell them. Also ask whether there is something that you want to be available to clinicians, but unavailable to employers, insurers, landlords, or credit agencies.

References:

  1. HHS Establishing Advisory Panel and Issuing RFPs to Advance HIT
  2. Electroinic Health Records and the National Health Information Network: Affordable, Adoptable, and Ready for Prime Time? Basch P. Ann Intern Med. August 2, 2005;143:227-228.
  3. HIPPAA Gutted Again - The Sound and Fury of Patient Privacy Laws in the U.S.Health Privacy Project. Am J Bioethics,   

Write up of the September Program

Fallacies of Patient Centeredness and Shared Decision Making

Hanneke de Haes is a distinguished Dutch psychologist who works in the department of medical psychology at the Academic Medical Center in Amsterdam. She is visiting Salt Lake City and has agreed to lead an Evening Ethics Discussion focused on an area that she has studied and written about extensively. In her article, "Patient Centered Decision Making in Palliative Cancer Treatment: A World of Paradoxes," (1) she argues that:        

"Patient oriented outcomes, like quality of life, once introduced, seem to be disregarded by many patients themselves and survival is given a more important weight. Likewise, physicians seem to be inclined to treat patients aggressively for little benefit rather  than providing supportive care. …Patient centered care would imply that patient control and autonomy are enhanced. However, again paradoxically, many patients seem to want to avoid information and leave the decisions to be made by their doctors. …. Both parties seem to prefer to do something actively to maintain a semblance of control over the disease process.".    

Although this article is in the context of palliative care, her concerns are likely to be relevant to a wide variety of clinical encounters. Her psychological perspective and her experience in another medical culture and country, especially the Netherlands, are likely to make this discussion one of our most provocative and informative. 

Reference
1. Patient centered decision making in palliative cancer treatment: a world of paradoxes Hanneke de Haes, Nelleke Koedoot. Patient Education and Counseling 2003;50:43-49.      

Write up of October's Program

Medical Ethics in Disasters

A recent article from the New England Journal (After the Tsunami-Facing the Public Health Challenges) reviews the predictable public health problems that follow catastrophic disruptions in essential services and the appropriate public health responses.    

When the U.S. is struck by a natural disaster there is no national health service to coordinate or respond to the medical needs of individuals. Instead, the response depends on numerous disparate institutions and practitioners.     

Below are two other articles that describe some praise worthy responses, but do not describe what most sick or injured persons experienced or should have experienced from healthcare providers. We have invited clinicians from Salt Lake City who volunteered their services after Tsunami and Hurricane Katrina to share what they saw and learned.  

References
1. After the Tsunami-Facing the Public Health Challenge. VanRooyen M, Leaning J. New Engl J Med. February 3, 2005;352:435-438.
2. Even good Plans Can Go Awry ...Silver JD, Thomas L, Fuoco MA. Pittsburgh Post Gazette. September 11, 2005.
3. Healthcare Heroes Shine in Crisis Lauer CS. Modern Healthcare. September 19, 2005. page 36
4. Left Behind Editorial. St Louis Post-Dispatch. September 14, 2005.

When Vaccines are in Short Supply: Problems in Just Disrtibution

Parents and pediatricians have been aware for some time about difficulties obtaining routine immunizations for children. Last year the public was made acutely aware of the influenza vaccine shortage. Vaccines represent a fascinating intersection of public preferences, medical ethics, technology, public health, public policy, and market forces. A recent issue of the journal, Health Affairs focused on vaccine shortages and what we have learned from them. Others have gone so far as to suggest that experience with the flu vaccine shortage provided a successful experiment in healthcare rationing. The referenced article by DesRoches et al disagrees with this and predicts behavior that although they may not pertain to rationing of treatments in general, but be very relevant if there is a serious influenza pandemic. The article by Danzon and Pereira looks for lessons in our past experience to propose solutions to vaccine shortages in the future. The press release from Health Affairs highlights some of the key facts in both of these articles and some others from a third that draws a connection between under-insurance and low immunization rates. Taken together these pieces paint a picture of a complex problem, but one for which we can envision desirable and feasible solutions.   

We will invite practicing pediatricians and individuals from our State Health Department to help us understand how Utah experiences and addresses this problem, which exhibits tremendous state-to-state variation in our country.     

References:
1. Americans'Responses to the 2004 Influenza Vaccine Shortage DesRoches CM, Bendon RJ, Benson JM. Health Affairs. May/June 2005;24:822-831.
2. Why Sole-Supplier Vaccine Markets May Be Here to Stay Danzon P, Pereira NS. Health Affaires. May/June 2005;24:694-696.
3. New Health Affairs Issue Assesses Vaccine Shortages: Calls Pediatric Vaccine Supply Precarious
http://www.healthaffairs.org/press/mayjune0502.htm