< Back to front page Text size – +
Posted by Dr. Lachlan Forrow January 28, 2014 07:05 AM
The first nightmare started at 2 am on November 26, when Erick Munoz found his wife Marlise unconscious on their kitchen floor. She was 33, and 14 weeks pregnant, with their second child.
A trained paramedic, Erick immediately started CPR. Hope must have fought against terror as Marlise's heart resumed beating, and she was rushed to Fort Worth's John Peter Smith (JPS) Hospital, where she was placed on life support, including a mechanical ventilator.
But two days later, her doctors determined that she "met the clinical criteria for brain death" -- the "irreversible cessation of all functions of the entire brain". Since in all 50 states a patient who is "brain dead" is legally dead, they should have simply declared her dead, but apparently they did not.
And then the second nightmare began.
The Texas Advance Directives Act, in most ways designed so that Texans can ensure that their wishes about end-of-life care are respected, contains an exception:
Sec. 166.098. PREGNANT PERSONS. A person may not withhold cardiopulmonary resuscitation or certain other life-sustaining treatment designated by the board under this subchapter from a person known by the responding health care professionals to be pregnant.
Invoking this law, the hospital refused to stop Marlise's respirator, ignoring the pleas to stop from Erick, and from Marlise's parents. Even if Marlise had been technically/legally "alive", they said, she had made it clear to them (she was herself a paramedic) that she would never want to be kept alive this way. And since Marlise's entire brain was now "dead" from the prolonged lack of oxygen during her cardiac arrest, then surely the developing fetus was also severely and irreparably damaged as well.
Unlike the mother of 13-year-old Jahi McMath, who seeing her daughter's heart continuing to beat could not believe or accept the doctors' insistence that Jahi was "dead", Erick Munoz, a trained paramedic, understood exactly what "brain dead" means. As days turned into weeks, seeing his wife's body nonetheless still attached to machines became more and more horrifying.
After nearly two months, Erick sued the hospital in court
for "cruel and obscene mutilation" of a dead body. As he stated in his sworn affidavit:
“As a married man, I became very familiar with the way Marlise’s body felt, the way her hair smelled, and the way her eyes appeared when we looked at each other, among other things.Over these past two months, nothing about my wife indicates she is alive...When I bend down to kiss her forehead, her usual scent is gone, replaced instead with what I can only describe as the smell of death. As a paramedic, I am very familiar with this smell, and I now recognize it when I kiss my wife.In addition, Marlise’s hands no longer naturally grip mine for an embrace. Her limbs have become so stiff and rigid due to her deteriorating condition that now, when I move her hands, her bones crack, and her legs are nothing more than dead weight…Finally, one of the most painful parts of watching my wife’s deceased body lie trapped in a hospital bed each day is the soulless look in her eyes. Her eyes, once full of the “glimmer of life”, are empty and dead.My wife is nothing more than an empty shell. She died in November 2013, and what sits in front of me is her deteriorating body…I just want to put my wife’s deceased body to rest, and provide peace for our family.”
On Friday, Judge R.H. Wallace ordered the hospital and it doctors "to pronounce Mrs. Munoz dead and remove the ventilator and all other "life-sustaining" treatment from the body of Marlise Munoz." On Sunday the hospital and its doctors complied.
Hospitals, and their doctors, are supposed to be there to care for us, especially when our worst nightmares have come true. They are not supposed to be in the business of causing nightmares.
Erick Munoz's first nightmare was a tragedy. His and his family's second nightmare was unconscionable. All that needed to happen was for Marlise's doctors to do their job -- having determined that she "met the clinical criteria for brain death", as the hospital itself acknowledged they had done on November 28, all they needed to do was pronounce her dead. The Texas Advance Directives Act, as the court confirmed two months later, applies only to living pregnant women, and should simply have been both medically and legally irrelevant.
But apparently even the JPS doctors themselves didn't completely believe that meeting "clinical criteria for brain death" is quite the same as being "dead". Until we as a society reach a more solid consensus about when someone is "alive" or "dead", and until doctors and hospitals become more reliably skilled in caring compassionately for family members whenever someone has "died", variants of the nightmares of the McMath and Munoz families will almost certainly recur for others.
The author is solely responsible for the content.
About the authorLachlan 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 »
Learn why and how to start discussing end-of-life wishes with your family. Join The Conversation Project.