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Invitation to Dialogue: Caring for "Brain Dead" Patients, and Their Families

Posted by Dr. Lachlan Forrow  February 2, 2014 10:01 PM

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No family should suffer through nightmares like the ones experienced by the families of Jahi McMath and Marlise Munoz.  

The Munoz family's nightmare should never recur: the body of a dead woman in Texas, who everyone (her doctors, the hospital, and family) agreed met criteria for "brain death", was kept on "life support" because she was 14 weeks pregnant.  The nightmare continued for two months, ending only when her husband sued the hospital in court for "“cruel and obscene mutilation” of a dead body, and the judge ruled in his favor, ordering that she be declared dead and removed from the "life support".

But variants of the McMath family's nightmare will almost certainly recur -- doctors insisting that a loved one is legally dead, but family finding it impossible to accept because her heart is still beating.   

In the McMath case, a judge allowed the family to take custody her (legally-dead) body, her lungs still inflating and deflating on a functioning respirator, and her heart continuing to beat. Three weeks later, her family reportedly continues to believe she is alive.

I expect that after these highly-publicized cases, other families, when they are told that a loved one with a beating heart is dead, will try to prevent the ventilator from being stopped.

What, if anything, should we be doing differently when a patient is brain dead?

Should states reconsider their laws about when someone is legally dead?  

Should state laws allow the possibility of an exception when a family disagrees with "brain death" criteria?   New York and New Jersey laws already allow the possibility of exceptions on religious grounds -- should these be extended to all 50 states?  Why should exceptions be limited to "religious" grounds?

Or should we instead use the recent publicity to strengthen public acceptance of the idea that a patient who is "brain dead" is, in fact, legally dead -- as the judges in both the McMath and Munoz cases affirmed?

In trying to answer these questions, we need to hear as many voices as possible of the general public -- people who may one day be sitting in shocked disbelief, as a loved one's doctor tries to explain that a patient whose heart continues to beat is actually dead.

How should we care for patients who are "brain dead"?  How should we help, and care for, their families?

Please offer your thoughts in the "comments" section of this blog.

This blog is not written or edited by or the Boston Globe.
The author is solely responsible for the content.

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About the author

Lachlan Forrow, MD is Director of Ethics Programs and Director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School. More »

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