Executive Summary
The Widely Publicized Case Of A California Teenager Declared Braindead Who Remains On Life Support Illustrates How Contemporary Intensive Care Unit Medicine Complicates The Determination Of Death.
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Terms such as "life support" can be misleading.
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Families may think the term "brain death" means their loved one is still alive.
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Brain death causes confusion for patients and even providers, as such patients do not appear dead.
High-tech care contributes to misunderstandings
The widely publicized case of Jahi McMath, a California teenager who remains on life support after being declared brain dead, has generated a great deal of discussion on end-of-life issues, "but not in a positive way," says Craig M. Klugman, PhD, professor and chair of the Department of Health Sciences at DePaul University in Chicago, IL.
The girl’s family claims that doctors have found signs of brain function, and is seeking an unprecedented court order declaring her alive. "This is a story about refusing to accept death and using large amounts of resources in a futile quest," says Klugman. There is no known case of brain death being reversed.
"The sad case of Jahi McMath has been making headlines again, this time with the claim that the original tests that confirmed total brain failure were wrong," says Leslie M. Whetstine, PhD, associate professor of philosophy at Walsh University in North Canton, OH.
Unfortunately, says Whetstine, much of the media coverage surrounding the case reflects "a profound lack of understanding about the concept of death determined on neurologic criteria."
This disconnect points to a need for a broader discussion about societal values, according to Whetstine. "Until this occurs, we will likely continue to see challenges and misunderstandings at the bedside," she predicts.
Public discussion needs to center on accepting death as a natural part of life, argues Klugman. "Families that want to believe their loved [one] is alive are going to grab onto this story, and interpret it as hopeful and applying to them," he says.
There is a potentially positive side to the attention generated by the case, says Amber Barnato, MD, MPH, associate professor of medicine at University of Pittsburgh School of Medicine. "Anytime there is public discourse prompted by a case, it’s meaningful," she says. "It provides us an opportunity to talk about these issues, and for people to reflect on their own values and wishes."
The McMath case is "a [classic] case of how contemporary ICU [intensive care unit] medicine has complicated dying," says Barnato.
Technology used in the ICU challenges longstanding assumptions about life and death. "It is entirely possible that ICUs can maintain a body despite the loss of the individual," explains Whetstine.
Brain death causes confusion for patients, and even providers, because such patients do not look dead. "When families see a loved one who is pink and warm, who is breathing and has a spontaneous heartbeat, it may be quite difficult for them to accept that they are looking at a corpse," says Whetstine.
End-of-life terms misleading
Regarding the McMath case, says Klugman, "people are going to believe what they want to believe. It’s possible that all of the facts in the world will not change their mind."
The language used by providers contributes to misunderstandings, as does the patient’s appearance. "A family walks into an ICU and sees a body with good color," says Klugman. "The chest moves up and down, the eyes may be open, the eyelids may flutter. There may even be some spontaneous movement."
The family is then told that the patient is "brain dead" and that the medical team is recommending removal of "life support." "The family ends up thinking, How can this body that looks very much alive not be alive?’" says Klugman. "There is a confusion between what they see and what they hear."
Families may think the term "brain death" means their loved one is still alive. "The use of life support to maintain a body brings up the idea of: Why would it be life’ support if there’s no life?" says Klugman. "All of this gives a strong message that the person is still alive."
Here are some ways in which bioethicists can help to avoid situations that give families unrealistic hope:
Carefully consider the language used.
"Instead of brain death,’ we should say dead’ or dead by neurologic criteria,’" advises Klugman. "I think it’s important to use the term dead’ first, and then explain the circumstances."
He suggests providers use the terms "artificial corpus support," or "replacing natural function" instead of "life support."
"The word life’ is what brings on the confusion," says Klugman. "It suggests to the family that we are sustaining life, when, in fact, with brain death we are simply keeping a biological unit functioning."
Make sure medical information is understood.
"I’ve turned to a family member after a physician speaks and said, I didn’t understand that, did you?’" says Klugman. The bioethicist can then turn to the doctor and ask them to explain more simply. "Families need to have information in easy-to-understand terms. And you have to repeat the concepts often," he says.
Explain what various diagnostic tests for death measure, what the scale means, and where their loved one falls on it.
Sharing these criteria and the data can lead a family to form their own conclusion that their loved one is dead. "These are complex and subtle concepts, and we have to explain them clearly," says Klugman. "This takes time and patience."
Acknowledge strong emotion
When families pray for a miracle, "it often causes providers to throw up their hands," says Barnato. "But it’s actually an open wedge for you to get in." Providers can respond, "I deeply wish we could have that miracle, because it would take a miracle."
"It honors the family’s belief that miracles exist, and helps you get on the same page," she says. "There is an opportunity for some shared understanding."
Providers sometimes persist with an educational approach, with the mindset "if only we could get you to understand this information," says Barnato, instead of acknowledging the family’s strong emotion.
"It’s really hard to explain the concept of brain death to anyone," says Barnato. "The concept of death in a more spiritual space isn’t constrained by that definition. So I can see where there would be conflict."
Klugman was recently told that due to a family’s religious beliefs, they would never accept that their loved one was brain dead as a result of trauma.
"As we talked, I started using their language about faith and will," he says. After a lengthy, difficult meeting, a shared understanding was achieved. "After a few more hours and one more test, they came to accept the death, and began the next step of their mourning," says Klugman.
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Amber Barnato, MD, MPH, Associate Professor of Medicine, University of Pittsburgh (PA) School of Medicine. Phone: (412) 692-4875. E-mail: [email protected].
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Craig M. Klugman, PhD, Professor and Chair, Department of Health Sciences, DePaul University, Chicago, IL. Phone: (773) 325-4876. E-mail: [email protected].
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Leslie M. Whetstine, PhD, Associate Professor, Philosophy, Walsh University, North Canton, OH. Phone: (330) 244-4697. E-mail: [email protected].
