Matters of Life and Death

January 13, 2014

The new year began with several sad stories in the news media regarding brain death and debates over the appropriate, ethical use of “life support” medical technology. Berman Institute faculty members have been working with journalists to help bring clarity to the issues of these inevitably tragic cases.


Two instances of reported brain death have drawn attention for together representing two sides of the difficult topic – one in which the family does not want to remove life support, and another in which they do, but policy opposes their wishes.  Jahi McMath, 13, was in the hospital for a tonsillectomy and suffered complications, followed by cardiac arrest, and ultimately was declared brain dead. Her family has fought in court to keep her on life support, and has moved her to a different medical facility after the hospital said they would discontinue the use of life support.


Marlise Muñoz, 33 years old and 14 weeks pregnant, collapsed due to a blood clot in her lungs; though Muñoz’s clinicians have not commented on her case, her family says that she has been declared brain dead and would not have wanted to remain on life support. However, the hospital says that a Texas law prohibits them from removing life support technology because of Muñoz’s pregnancy.


Most recently, Ariel Sharon, 85, the former prime minister of Israel, died on Saturday after eight years in a vegetative state or coma, an importantly, distinctly different condition than brain death, which Berman Institute faculty members and other bioethicists have been emphasizing in the news media.


Cynda Rushton, the Bunting Professor of Clinical Ethics at the Berman Institute and the Johns Hopkins School of Nursing, spoke with National Geographic News for their coverage of what “brain death” really means, and why it can be so confusing.  Rushton said “it’s hard for all of us to accept those limits because we have so much promise in our technology, and we have become so seduced by it that we actually think that it can correct things that are not possible to be corrected.”


In an opinion for, Rushton focused on the case of the pregnant Muñoz, and raised the issue of the morally difficult position of the clinicians caring for Muñoz, knowing they are working against the wishes of the family, and according to them, Muñoz herself.


“Medical personnel are not merely mindless robots who implement the decisions of others. They, too, have moral stakes in the process and outcomes of their care. In order for them to do their work with competence, respect and compassion, they must preserve their own sense of integrity,” Rushton writes. Calling the Muñoz case “heartbreaking,” she writes that “Using technology is always a double-edged sword; the very technology that creates hope can also create suffering.”


Rushton also spoke with Alice Park at Time Magazine, saying that life support technology has “created the illusion that death is optional.”  Park observes that, as the cases of McMath and Muñoz illustrate in different ways, this illusion “increasingly pits doctors and hospitals against families.”


Alan Regenberg, Director of Outreach and Research Support at the Berman Institute, also spoke about that issue with Muñoz case, telling MedPage Today that “There is a pretty robust legal and ethical consensus around the right of a patient, or their representative, to refuse medical care,” and that clinicians were being forced “into the unfortunate position of having to choose between violating this law or violating their patients’ rights.”


Jeffrey Kahn, the Levi Professor of Bioethics and Public Policy at the Berman Institute, agrees with Rushton that, “Before we had the ability to keep people alive when they could not breathe on their own, we didn’t have these issues,” as he told in the site’s in-depth exploration of the facts and issues surrounding brain death.


Kahn also spoke with the Wall Street Journal for their story on the McMath case: Fight Over California Girl Points to Confusion About Brain Death, saying that young McMath would be “warm and the heart’s still beating, it’s easy to understand why there’s confusion about this.” But “by policy and law we have said the definition is [brain death] and she qualifies.”


Rushton also spoke with journalists from CNN for two separate stories on these issues: When ‘life support’ is really ‘death support’ and Why brain dead means really dead, addressing the case of 13-year old McMath, saying that “We really need to engage in a new dialogue that takes us out of the debate of faith into science, into a conversation about what are the limits of our human knowledge and technology, and how do we accept the fact that all of us will eventually die?”


“I’m glad that we have had opportunities to work with journalists and reach out via social media on these really important and complex topics,” says Regenberg.  “These are exactly the sorts of cases where engagement is just essential, both in allowing us to share our expertise and in providing us an invaluable opportunity to learn more about the range of public sentiments when confronted with these sad challenges.”

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Alan Regenberg
Cynda Rushton
Jeffrey Kahn
Leah Ramsay

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