Medical Futility Conference - Abstracts DUE March 25

The Australasian Association of Bioethics and Health Law Conference, "Expectations, Hope and Futility: Law and Bioethics in Contemporary Healthcare" (July 7-11, 2011),  has extended the abstract submission deadline to March 25th.

Ethics Committee Rejects Physician Request for Unilateral Refusal

Ethics committees usually agree with physicians who bring futility cases for review.  But a new physician blog, The American Doctor, describes a case in which the ethics committee disagreed with the physician.

Perception of Law vs. Reality of Law

What matters to practice is not what the law "is" but what the "perception" of the law is.  While the actual legal risks surrounding unilateral refusals are remote, the perception is that the risk is material.  I suspect this is due to cognitive features like salience.  Baby K had such a high profile, that while distinct (since most futility cases involve ICU and other inpatients not subject to EMTALA), it is thought to “control” these situations.

People's behavior is guided (1) by what they think the law is, (2) by what they think the chances of enforcement are, and (3) by what the sanctions are.  Less important are (a) what the law actually is, (b) what the chances of enforcement actually are, and (3) what the sanctions actually are.  

At some level, I am hoping to change the perception of risk both through education and through establishing safe harbors like regional ethics committees.

Surrogate Selection in Another Futility Dispute: Rachel Nyirahabiyambere

In April 2010, Rwandan immigrant Rachel Nyirahabiyambere suffered a devastating brain hemorrhage.  She never regained awareness.  After several weeks, Georgetown University Medical Center tried, unsuccessfully, to discharge her.  (NY Times)  Then, in November, the hospital filed a court petition in Alexandria, Va., seeking to have a guardian appointed.  The hospital explained: “We only take this somewhat unusual step when there is a concern that the family members are legally appropriate decision makers.”  A brief hearing took place December 28.  The sons pleaded for the family to retain the power to decide their mother’s fate.  But the judge appointed Andrea Sloan, a lawyer and nurse, as Ms. Nyirahabiyambere’s guardian.  Ms. Sloan transferred Ms. Nyirahabiyambere to a nursing home.  Ms. Sloan then directed that Ms. Nyirahabiyambere’s feeding tube be removed.  

So far, this is not terribly different than other surrogate selection cases.  But there are two disturbing aspects of this case.  First, there is some evidence that the patient would have wanted at least the feeding tube.  Her six adult children vehemently opposed the removal decision.  “Ending someone’s life by hunger is morally wrong and unrecognized in the culture of the people of Rwanda.”  But the guardian said that she would disconnect the patient unless her sons could demonstrate that she wished to live out her life “with a feeding tube, in diapers, with no communication with anyone.  In other words, the guardian appears to have made decisions on a pure best interest standard unless the family produced clear and convincing evidence of patient wishes otherwise.  This flips the presumption in favor of life, requiring evidence that the patient wanted to live rather than the typical requirement that the patient did not want to live under the circumstances.  It also demands more specific evidence than is typically demanded.

Second, money appears to have played a larger role in this case than in some others.  Ms. Nyirahabiyambere was uninsured.  The guardian wrote:  “Hospitals cannot afford to allow families the time to work through their grieving process by allowing the relatives to remain hospitalized until the family reaches the acceptance stage, if that ever happens . . . .  Generically speaking, what gives any one family or person the right to control so many scarce health care resources in a situation where the prognosis is poor, and to the detriment of others who may actually benefit from them?”

Causation in withholding and withdrawing life-sustaining measures

Andrew McGee, a law professor at Queensland University of Technology, has just published "Ending the life of the act/omission dispute: causation in withholding and withdrawing life-sustaining measures" in Legal Studies.  Here is the abstract:

The aim in this paper is to challenge the increasingly common view in the literature that the law on end-of life decision making is in disarray and is in need of urgent reform. The argument is that this assessment of the law is based on assumptions about the relationship between the identity of the defendant and their conduct, and about the nature of causation, which, on examination, prove to be indefensible. A clarification of the relationship between causation and omissions is provided which proves that the current legal position does not need modification, at least on the grounds that are commonly advanced for the converse view. This paves the way for a clarification, in conclusion, of important conceptual and moral differences between withholding, refusing and withdrawing life-sustaining measures, on the one hand, and assisted suicide and euthanasia, on the other.

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Maraachlis to Make a "Run for the Border"

The Maraachlis are apparently planning to make a run for the U.S. border.  This sounds like a bad plan.  But at least one thing going for them is that the closest state is Michigan.  Michigan is in the Sixth Circuit which does not recognize an inpatient exception to EMTALA.  Consequently, regardless of the standard of care or the appropriateness of continuing treatment, a Michigan hospital could arguably be obligated to continue treatment indefinitely if Joseph reached its front door.  


This reminds me of the scene in First Do No Harm in which Meryl Streep's character tries to take her son out the hospital contrary to medical advice.  Hospital security stops her and the hospital then files to terminate her parental rights for not acting in her son's best interest.

London Health Sciences Center Publishes Account of Baby Joseph Case

As Baylor Hospital did a few years ago in the face of intense negative press regarding the Tirhas Habtegiris medical futility dispute, with respect to the ongoing Baby Joseph case, London Health Sciences Center has published "key facts about the situation to correct the record."  The hospital explains: "the public does indeed have a “right to know” the truth about this matter so that people can form informed opinions based on fact, not innuendo, speculation or untruths."

Baylor had to secure court permission to release confidential information.  LHCS, on the other hand, is able to merely summarize information already made public.  The Baby Joseph case, in contrast to the Habtegiris case, has been litigated through two levels of judicial review and the family has released a great deal of information to the media.