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There has been some tragic, but enthralling, reading in the press recently surrounding two different cases of “brain death” in America.  Both have pitched the medical establishment against the family and have been fascinating in their own rights.

The case of Jahi McMath, for those who have somehow missed it, involves a 13yr old girl who suffered a catastrophic postop bleed following her elective surgery for OSA leading to a hypoxic brain injury and brain death.  A battle ensued between the family and the hospital over the right to stop the ventilator which culminated in a court order for the body to be transferred to an unnamed medical facility for continuation of ventilation, tracheostomy, PEG insertion and ongoing nursing care at the request of the family.

The second case of note involves Marlise Munoz, a 14week pregnant woman in Texas who suffered a massive PE with cardiac arrest.  She was resuscitated and her husband, a paramedic, has described her as brain dead and wishes to stop treatment which is consistent with Marlise’s previously stated wishes.  The brain death diagnosis in this case is less clear as the hospital has not engaged well with the press.  However, they have continued her care in hope of saving the foetus using Texan law stating that any DNR orders are invalidated in pregnancy.  

What I’ve been most interested in is the communication breakdown aspect of both cases leading to court intervention and trial by media.

In the case of Jahi McMath, I can understand both parties perspectives. While Jahi’s heart beats, it is impossible for her mother to accept that she is dead.  However, it is extremely difficult to justify performing procedures on dead patients and I’m not sure of the justification used by the unnamed medical facility.  The communication failure in this case is one of public education on brain death.  As medicine has advanced, so has the public expectation for results.  In the case of brain death, we have now developed the ability to keep a body “alive” without a working brain and there is a lack of knowledge surrounding the meaning of brain death.  I think this serves as an opportunity for this dialogue to take place in the public eye rather than seeing it as a failure for the clinicians involved.  In fact, although I’m sure it has been extremely difficult for the clinicians, they appear to have done a very good job managing an extraordinarily difficult scenario.

I have, however, been surprised at the certainty of a court statement in saying that Jahi’s body will start decomposing due to brain death.  What is the natural history of a medically supported body after brain death? This may be another communication failure and does not strengthen the argument of the doctors involved the longer Jahi’s body remains “alive”.

The management of Marlise Munoz concerns me.  If the reality is as it has been portrayed, then this comes across as medical paternalism at its worst.  It appears that the hospital is keeping a dead body ventilated as host to a foetus against the patient’s and her family’s wishes.   If she is truly brain dead, then arguing that the law prevents withdrawal of life support is negated as she is already dead.  This is not even mentioning the high likelihood of severe foetal damage given that the mother has already suffered cardiac arrest significant enough to render her brain dead.  It would have been fascinating to be a fly on the wall in both the medical and family meetings for this one.  

Unfortunately, in both of these cases there are no winners.  Both patients will die.  The families are left in grief, feeling exhausted and let down by the medical profession.  The medical staff involved will all be stressed to the eyeballs and will feel victimized as their decisions are played out in public.  Finally, the medical profession as a whole takes another public relations hit.

We will all have cases where the family interaction turns sour and there appears to be an impasse.  It is tough for everyone.  My only advice is to get support for both parties and, if possible, a third party involved prior to legal or press involvement.  Otherwise, continue negotiating with the family, show empathy and honesty and remember why they are fighting you.  Usually they are just trying to do their best for a loved one and we, as doctors, can all seem like bullies when we disagree and are intractable.  At the end of the day we can go home, wait for it to all blow over, and move on with our lives.  This may not be so easy for them.