Where the World Finds Bioethics Sat, 28 Feb 2015 01:30:19 +0000 en-US hourly 1 When Are You Dead? Sat, 28 Feb 2015 01:28:00 +0000 I am re-posting this press release from Southern Illinois University on some talks I am doing there next week.

CARBONDALE, Ill. -- A lecture next week at Southern Illinois University Carbondale will examine the question of when a person is legally dead.
Thaddeus M. Pope, director of the Health Law Institute at Hamline University School of Law, will present the 2015 John & Marsha Ryan Bioethicist-in-Residence lecture at the Southern Illinois University School of Law Center for Health Law and Policy.
Pope will address “When Are You Dead? Expanding Objections to Brain Death and Recommended Responses” at 5 p.m., Wednesday, March 4, in the courtroom in the Hiram H. Lesar Law Building.  The lecture is free and the public is encouraged to attend.
Media Advisory
Reporters, photographer and camera crews are welcome to cover the lecture. To make arrangements for interviews or for more information on the lecture, contact Alicia Ruiz, the law school’s director of communications and outreach, at 618/453-8700.  For the lecture in Springfield, contact Karen Carlson at 217/545-2155.
W. Eugene Basanta, the law school’s Southern Illinois Healthcare professor emeritus and health law and policy center director emeritus, said Pope will examine how the law defines death and the associated implications.

For several decades, neurological brain death has been legally established in the United States and throughout the world. Yet laws in California, New York and New Jersey require hospitals to continue physiological support, such as a ventilator, and there is an increasing push for similar accommodations in other states. Defining death is, at least in part, a cultural issue. Furthermore, it can have practical consequences for care providers and policymakers, Basanta said.

For example, a clinician and hospital can deem a patient is dead and move to take them off a ventilator, but then be threatened with a lawsuit by the family if that occurs. “There can be real practical challenges. The more we can do from a health care standpoint; the more technology we have, the more challenges we face,” Basanta said.

Pope will meet with the ethics committee from the Southern Illinois Healthcare hospitals on Thursday, March 5.  At 8:30 a.m., Friday, March 6, Pope will discuss futile care and the role that physicians play in a presentation entitled “Medical Futility-Policy Implications,” at the SIU School of Medicine’s South Auditorium, 801 N. Rutledge St., Springfield.

Pope, an associate professor of law, is chair of the Association of American Law Schools Section on Law, Medicine and Health Care. He speaks throughout the world and has a blog on futile care and end-of-life treatment.

This is the 11th bioethicist-in-residence lecture, and the ninth since John G. and Marsha C. Ryan endowed the visiting lecture series.

Founded in 2006, The John & Marsha Ryan Bioethicist-in-Residence supports an annual residence and lecture by a law or medicine ethics scholar for the SIU schools of law and medicine. The selected presenter visits classes at both schools and organizes interdisciplinary educational activities for students, residents and faculty. The presenter also interacts with students and offers a public lecture on the scholarship as it relates to law and medicine.

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Lessons from Ebola: Presidential Bioethics Commission Releases Recommendations on Preparedness for Public Health Emergencies Fri, 27 Feb 2015 14:54:00 +0000 0 Collating Some Resources about 3-Parent IVF Fri, 27 Feb 2015 06:22:39 +0000 Read More »]]> 0 The Center for Practical Bioethics Weighs In on Proposed “Right to Try” Legislation in Kansas Thu, 26 Feb 2015 20:26:00 +0000 A perspective from John G. Carney’s (President, Center for Practical Bioethics) based on testimony before the House Committee on Health and Human Services (HB 2004, Right to Try)

Most of us would agree that the “Right to Try” legislation proposed in the State of Kansas is appealing in the world of ideas and the realm of rhetoric where personal freedom and the pursuit of limitless aspirations are admirable ideals. But the world of reality bends its merits to questionable decisions that may disrupt the safe delivery of care to the most vulnerable population that healthcare professionals are called to serve.

In bioethics we recognize the deep-seated human impulse to rescue the imperiled, which is what this legislation seeks to do. However, we also grudgingly acknowledge that we could not run our businesses, public and private services or health care systems while indulging this impulse without limits. Furthermore, it is also widely accepted that “spectacle ethics” that turn individual cases into cause célèbre should not dictate public policy – no matter how heart-breaking they are. In the real world, there are good reasons to think that the “Right to Try” legislation should not be pursued despite our natural impulse to rescue.

While the popular framing of this issue characterizes interventions as miraculous and life-saving, there is little to no evidence that the interventions actually result in a good or “hoped for” outcome. We are not bound to provide a treatment that offers no benefit. In fact, it is a violation of our moral duty to do so.

Proponents may argue, if there is some evidence in the first phase of the clinical trial process that the patient may benefit from this treatment, then we should allow them access in the face of their impending death. Urgency is a given in these instances and experts argue that impending death is a criterion that allows for special consideration in these cases. But we are also obliged to consider the facts before arguing for new legislation to provide that consideration. 

Recent efforts within the FDA clearly demonstrate the agency’s attention to this issue. The FDA has updated and expanded its expedited processes for accommodating requests for access to drugs under development called Investigational New Drug (IND) Application. FDA Commissioner Dr. Margaret Hamburg has reported that in FY 2013, the most recent year for which data are available, nearly 100% of all applications submitted were approved (974/977) and many of those requests processed within hours of submission.

FDA has further pledged to continue to streamline its efforts despite its mandate to ensure safety and efficacy. For individual states to adopt legislation that circumvents the process of safety and efficacy places undue burdens on private business and manufacturers. Drug and medical device companies have repeatedly expressed concerns about their ability to handle and process the applications diverted from the FDA.

Furthermore, drug manufacturers are under no obligation to provide access to their products. The effects of unlimited access to drugs that have only been through Phase One clinical trials cannot be known and subverts the scientific process. In turn, accommodating appeals by individual patients ultimately diverts private business interests on the basis of questionable practices.

The substantive ethical and practical problems associated with this bill, coupled with the fact that these instances are exceedingly rare (estimated to be about 5 cases a year in Kansas), raise serious doubts about its merits. Significant and promising collaborative efforts are underway, such as the ALS Emergency Treatment Fund, that offer far more hope to patients than “Right to Try.”

The agencies that provide for our safety and ensure the efficacy of treatments operate in the real world, as does the legislature. Despite our natural need to rescue the imperiled, this committee and this body retain the responsibility to legislate with prudence and wisdom.

John G. Carney, President and CEO
Center for Practical Bioethics
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Bioethics Commission Releases Brief on Ebola and Ethics Preparedness for Public Health Emergencies Thu, 26 Feb 2015 13:02:18 +0000 0 When Doctors Discriminate Thu, 26 Feb 2015 12:37:32 +0000 ]]> 0 Obama’s Precision Medicine Plan and the New American National Biobank Thu, 26 Feb 2015 04:02:46 +0000 0 How Medicine Has Fared Under ISIS Thu, 26 Feb 2015 02:51:46 +0000 by Craig M. Klugman, Ph.D.

Like much of the world, I find myself reading daily news stories about the Islamic State of Iraq and Syria (ISIS)—also known as the Islamic State of Iraq and Levant (ISIL). This is a militant group that has conquered much of the territory of Syria and Iraq. They have created an Islamic state, or caliphate, run by sharia law. According to news reports, Western youth are heading to Syria to join ISIS attracted by the ideas, the adventure, belonging to a group, or generally feeling disillusioned.…

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The Man Who Mistook His Life For A Hat Wed, 25 Feb 2015 18:48:32 +0000 ]]> 0 Patient Modesty: Volume 72 Wed, 25 Feb 2015 16:37:00 +0000 0 Measles, Vaccination, and the Tragedy of the Commons Wed, 25 Feb 2015 14:54:00 +0000 Katharine Browne]]> 0 ASBH Call for Proposals Ends March 6 Wed, 25 Feb 2015 13:00:00 +0000 The ASBH 17th Annual Meeting will be October 22-25, 2015 in Houston.  The call for proposals will close at 11:59 pm Pacific Time, Friday, March 6, 2015.

ASBH represents the intersection of bioethics and humanities. It is a crossroads where we celebrate multiple disciplines and practices and professions. It is a place characterized by creative expression of every dimension of the human experience, including both suffering and healing. 

This meeting offers an opportunity to explore this space in the spirit of collegiality and inclusion, and we welcome proposals on the theme of “ethics and creative expression” and others in every submission category. 

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Speaking about dignity Wed, 25 Feb 2015 02:29:19 +0000 Read More »]]> 0 Who Gets To Decide When To End Life Support? Tue, 24 Feb 2015 15:20:00 +0000 0 Podcast on 3.0 Tue, 24 Feb 2015 14:59:16 +0000 The Managing Editor of the New England Journal of Medicine interviewed me about the piece I wrote, with David Comerford and Eric Johnson, on redesigning the health insurance exchanges. For those of you with long commutes, here is that podcast: … Continue reading

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Printing Resources & Prosthetic Hands Tue, 24 Feb 2015 01:06:27 +0000 Read More »]]> 0 Vaccine Exemptions and the Church-State Problem Mon, 23 Feb 2015 14:54:00 +0000 0 More on 3.0 Mon, 23 Feb 2015 13:40:47 +0000 Here is a nice follow-up story on my recent New England Journal article on improving the design of health insurance exchanges. Comparing health insurance plans – whether signing up through or weighing employer-sponsored plans with a spouse – can … Continue reading

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Lying, Bullshitting, and Atul Gawande Mon, 23 Feb 2015 11:00:44 +0000 by J.S. Blumenthal-Barby, Ph.D.

Atul Gawande: “I came on board after she got diagnosed with that second cancer. And in my mind I was thinking ‘I wouldn’t offer this surgery because the lung cancer is going to take her life.’ And yet I didn’t feel I could say that to you. I think we started talking about the experimental therapy that you all were hoping to get on with the trial for the lung caner. And remember saying something I sort of regret, which was that ‘maybe that sort of experimental therapy will work for the thyroid cancer too.’ [laughs and shakes head] I said that.

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Rasouli v. Cuthbertson – Part II Sun, 22 Feb 2015 13:32:00 +0000 On Friday, the Court of Appeal for Ontario dismissed Hassan Rasouli family's appeal in a lawsuit separate from, though closely related to, the October 2013 Supreme Court of Canada decision in Rasouli v. Cutbertson.

In October, 2010, Mr. Rasouli suffered debilitating complications following surgery at Sunnybrook Hospital. He was kept alive by mechanical ventilation. Physicians Brian Cuthbertson, Gordon Rubenfeld and Richard Swartz recommended the withdrawal of mechanical ventilation from Mr. Rasouli.  His family opposed that decision.

As a result of that disagreement, two applications were commenced in the Ontario Superior Court of Justice – one by the Rasouli family and one by the physicians – over the issue of whether the physicians required the consent of Ms. Salasel, her husband’s substitute decision-maker, or the approval of the Consent and Capacity Board (CCB), to withdraw the life-sustaining measures from Mr. Rasouli. Those cases proceeded to the Supreme Court of Canada which, in its October, 2013 decision, held that the physicians were required to seek Ms. Salasel’s consent to the withdrawal of the life-sustaining measures, failing which there had to be a ruling by the CCB

In January 2013, the family commenced a separate action. In it, they sought $1 million in special damages and $1 million in general, aggravated and punitive damages for intimidation, assault, negligence, abuse of process, breach of contract and breach of fiduciary duty. The Statement of Claim specifies that the special damages sought consist of the approximately $500,000 in legal fees spent “to keep Hassan alive”. Mr. Rasoui's wife and two children also sought $250,000 each for the intentional infliction of mental suffering.

In May 2014, the Ontario Superior Court of Justice denied these claims, since they were already adjudicated in the case that went to the Supreme Court.  On Friday, February 20, the Court of Appeal agreed.

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Bodies as Property vs. Bodies as Gift Sat, 21 Feb 2015 16:04:41 +0000 Read More »]]> 0 Clinicians Want Legal Certainty Sat, 21 Feb 2015 09:00:00 +0000 I like this quote from the Minnesota Supreme Court:  “We sympathize with conscientious and dedicated physicians and health care professionals confronted almost daily with legal uncertainty in what, for them, is accepted medical practice.”  

When the court said this in 1989, Minnesota had not yet adopted a statute confirming that death can be determined by not only cardiopulmonary but also by neurological criteria.  But the same sentiment could be applied to all sorts of clinical situations.

Much of my own scholarship is animated by the same desire expressed by the Minnesota Supreme Court.  I want to provide more clarity, so that clinicians are not "chilled" from doing what they judge (or even know with certainty) is the medically and ethically appropriate course of action.

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Thank you for treating me like a person Fri, 20 Feb 2015 23:36:31 +0000 Read More »]]> 0 Brain Death Conference (Video) Fri, 20 Feb 2015 19:20:00 +0000 0 Q & A With Richard Thaler On What It Really Means To Be A “Nudge” Fri, 20 Feb 2015 14:59:42 +0000 Nudge is one of the most important and influential books on behavioral science and public policy I’ve ever read. Co-authored by economist Richard Thaler and lawyer Cass Sunstein, the book lays out the rationale for adopting policies designed to make … Continue reading

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GM Mosquitoes: Risks and Emotions Fri, 20 Feb 2015 14:54:00 +0000 Gregory E. Kaebnick]]> 0 The Physician-Patient Relationship: The basis for moral clarity in clinical ethics Fri, 20 Feb 2015 12:02:28 +0000 0 Mandated Disclosure of Medical Futility Policies Fri, 20 Feb 2015 09:00:00 +0000 Following Michigan and several other states (see, for example, here and here), new Oregon legislation would require hospitals to disclose their medical futility policies.  

S.B. 524 provides in part:

"A health care facility that has a policy concerning the provision of life-sustaining procedures that are not likely to benefit a patient’s or resident’s medical condition shall make the policy available in writing. The facility must provide the written policy to any patient or resident who is admitted to the facility within 12 hours of the admission."

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What should docs do with parents who don’t vaccinate? Fri, 20 Feb 2015 07:14:37 +0000 by Jenna Lillemoe, B.A.
by Arthur Caplan , Ph.D.

This year has marked the largest measles outbreak in decades with over 102 cases documented since December. This outbreak is a product of the anti-vaccination trend that has dramatically decreased vaccination compliance rates in children. Parents no longer follow the guidance of their pediatricians or believe the scientific evidence that vaccinations work without adverse effects. Pediatricians and family medicine physicians are then tasked with caring for these unvaccinated children. Because there is no set policy of how to manage caring for non-vaccinated children, we were interested in attempting to critically analyze how physicians manage non-vaccinated children.…

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The Carter v. Canada Conundrum: Next Steps for Implementing Physician Aid-in-Dying in Canada Thu, 19 Feb 2015 20:03:15 +0000 ]]> 0 Health Care Ethics Consultation: Practice-Based Intensive Training Thu, 19 Feb 2015 19:36:00 +0000 0 The Bioethics Commission and Ethics Integration at All Levels Thu, 19 Feb 2015 17:15:58 +0000 0 Dying: Closing the Gap between What We Know and What We Do Thu, 19 Feb 2015 14:54:00 +0000 Susan M. Wolf, Nancy Berlinger, and Bruce Jennings]]> 0 3.0–Improving the Design of the Obamacare Exchanges Thu, 19 Feb 2015 13:37:24 +0000 I joined two other, much smarter, colleagues in calling for the use of behavioral economics and decision psychology to improve the design of the websites people use to purchase health insurance in the U.S. That article came out today in … Continue reading

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Precision Medicine Has Imprecise Ethics Wed, 18 Feb 2015 06:59:03 +0000 by Craig Klugman, Ph.D.

How do physicians diagnose disease? First they go through a set of symptoms and then compile a list of differential diagnoses or what the underlying disease may be. Then the doctor performs tests to rule out some diagnoses and advance others. In essence, though, diseases are classified according to their affect on the body—their symptology. What if instead of by symptoms, diseases were classified by their molecular function? Instead of being diagnosed with Type II Diabetes one might be diagnosed by whether there is a death of beta cells (i.e.…

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The Cruzan Case 25 Years Later: Its Legacy & Its Future Tue, 17 Feb 2015 13:44:00 +0000 The University of Pittsburgh Center for Bioethics and Health Law is presenting its 24th Annual Medical Ethics Update: "The Cruzan Case 25 Years Later: Its Legacy & Its Future" on Friday, March 27, 2015.  

Keynote Address: 
  • “When Doctors Can’t or Don’t Say No” - Barron Lerner, MD, PhD

Other Lectures and Panels:
  • End-of-life decisionmaking
  • Palliative care and communication at the end-of-life
  • Breakthrough Drugs/Break the bank prices
  • Addressing conflict with families at the end-of-life
  • Legislation that interferes with the doctor-patient relationship
  • When is futile care futile?
  • Advance directives – problems and prospects
  • Conflict resolution in health care
  • End-of-life care in individuals with severe persistent mental illness
  • HIPAA – collaboration between clinicians and law enforcement in threat management and crisis intervention
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When It Comes to Cancer Screening, Are We All Nuts? Tue, 17 Feb 2015 13:39:11 +0000 In a recent Health Affairs article, David Asch and I wrote about how hard it can be to stop screening aggressively for things like breast and prostate cancer even when the evidence suggests we are doing more harm than good. … Continue reading

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Men’s reproductive health: Neglected in policy and practice Tue, 17 Feb 2015 12:02:56 +0000 0 Non-Embryonic Stem Cells and Malaria Treatment Tue, 17 Feb 2015 00:37:40 +0000 Read More »]]> 0 The Importance of History for Bioethics: It is What it Was Mon, 16 Feb 2015 13:50:33 +0000 ]]> 0 Medical Futility: Top Two Formal Mechanisms for Resolving Intractable Disputes Mon, 16 Feb 2015 09:00:00 +0000 0 The Oscars: Hollywood’s Biggest Night and Why it Matters to Medicine and Public Health Mon, 16 Feb 2015 01:53:28 +0000 by Macey Henderson and Jennifer Chevinsky

The Oscars, or the glamorous Academy Awards, are known as the biggest night for Hollywood’s actors and for its big ratings for the mass media. For days following this gala, the media reports on the outfits worn, Oscars won, and perhaps most passionately, they begin to critique the process and decisions of the prestigious American Academy of Motion Picture Arts and Sciences (i.e. “The Academy”).  But why should the medical and public health community care about the Academy, the big name nominees, or the ultimate winners?…

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Advance VSED for Dementia Sun, 15 Feb 2015 16:39:00 +0000 0 Jahi McMath to Ask California SOS to Rescind Death Certificate Sat, 14 Feb 2015 22:24:00 +0000 0 Autonomy and Autism Sat, 14 Feb 2015 14:00:09 +0000 Read More »]]> 0 New Educational Module from the Bioethics Commission on Community Engagement in Synthetic Biology Fri, 13 Feb 2015 17:41:12 +0000 0 Should Doctors Photograph Patients Who Receive Opioid Prescriptions? Fri, 13 Feb 2015 12:02:52 +0000 0 Which Doctor Should Carry Out the End of Life Conversation? Fri, 13 Feb 2015 04:40:33 +0000 Read More »]]> 0 How to Die in Canada Thu, 12 Feb 2015 16:45:58 +0000 ]]> 0 Brain Death: Clinician Duties to Accommodate Objections and "Treat" the Dead Thu, 12 Feb 2015 10:18:00 +0000 0