How doctors talk about brain death

When physicians declare a patient as dead, what exactly do they mean?

“Hi Mr. Smith, I’m Dr. Goldberg, I’m the trauma surgeon that saw your son Joe when he came into our emergency room. Do you know anything yet about what had happened to him? Well, your son Joe was in a car accident, it was a very bad car accident. He was not breathing on his own, and we had to quickly put a breathing tube in for him. He has no brain function. And I’m sorry to tell you that your son is brain dead.” 

Imagine for a moment that you were on the receiving end of this information. What would you do? What questions would you ask? How would you process what you were hearing?

Getting to these questions is exactly the point of this simulated exercise being led by Temple Hospital’s Chief of Trauma Surgery, Dr. Amy Goldberg.

As surreal as getting and giving this kind of news may seem, these kind of conversations happen every day…particularly here in Philadelphia.

“Unfortunately, here at Temple University Hospital, we see a significant number of patients who have sustained penetrating injuries such as gun shot wounds,” says Goldberg. “And there is probably nothing as sad as telling a mother that her 18-year-old son is dead or brain dead.”

We all know how difficult this news would be to hear. But we often forget just how difficult this news would be to say. Here’s surgical resident Senthil Jayarajan, who is training under Dr. Goldberg at Temple.

“As you can imagine, there’s a lot of worry that you say the wrong thing, and you’re also worried about how the families will react,” says Jayarajan. “I remember my intern year I was on call Christmas Eve actually with Dr. Goldberg, and everyone who was senior to me was busy with other patients and they had family members of a person who had died in the trauma bay and they needed someone to go in and talk to them about it. And they were getting belligerent. In the end, there was no one else around, so I went down at talked with them. I think it’s a very difficult discussion to have.”

What’s surprising is that despite the seemingly endless years of medical training, there is very little time devoted to teaching students and residents how to understand brain death, let alone how to communicate these concepts to patients in a compassionate way.

“In medical school we had one afternoon going through and talking to families and giving them bad news,” Jayarajan remembers. “That’s the closest we got to any discussion of brain death vs. death.”

The 12-point checklist 

Dr. Goldberg noticed that this lack of exposure was affecting her residents as well as her patients. So she decided to institute a training program.

“We started our very first program back in 2006,” Goldberg recalls. “What we do is, the residents are actually given the opportunity to role play a difficult situation whether it’s a patient involved in a devastating car accident or a gunshot wound, using a checklist of things to do and things not to do. And then another member watches the role playing, uses the checklist and is able to give the resident immediate feedback.”

It’s a 12-point checklist, and it reminds doctors to do things such as:Ask the family what their understanding of the situation is first.Explain what tests have been done.Show empathy.Declare a time of death.

In the heat of the moment, having a mental checklist goes a long way to creating a bridge over the huge sea of fear, confusion and panic that comes with this news, says Goldberg. “We think it’s important for our residents and these patients’ families to have these conversations prior to them being placed in the situation.”

“When I came as an intern and we had this lecture, it was like the first time that these concepts were really discussed and defined in a way that now I can truly understand what the differences are,” say Jayarajan.

Explaining the differences 

So what are those differences? What does it mean to be brain dead? To understand that, we have to start with another term that’s thrown around a lot: “coma.” A coma is a state of unconsciousness or unresponsiveness. People in comas may have lost higher brain function, such as the ability to be aware, but their most primitive reflexes remain intact.

“So you may not be responsive, but you may gag or cough when something is put in your throat, or your pupils may respond,” says Goldberg of patients in comas. “Now, when you’re brain dead, you lose all of your higher functioning but also lose those basic reflexes that are controlled at the brainstem level.”

Those basic reflexes include things like the corneal reflex, where a scratch to the eye elicits a blink. Or the eerily titled “Doll’s Eye reflex.” Normally, your gaze tends to stay locked on a point when you turn your head. You can try it yourself. Even if you try to let your gaze follow your head, you’ll notice it jumps from point to point. In brain dead patients, that reflex is lost and their gaze moves wherever their head moves.

By testing these most primitive reflexes, doctors are essentially pinging the deepest parts of the human brain and listening for a response. And in brain death, even those deepest parts of the brain have shut off. In addition, doctors perform a nuclear medicine study that measures blood flow to the brain. Brain stem function is crucial to life in a very immediate way, so brain dead patients are, without a doubt, dead. The only reason their body is still pink is because a machine is artificially breathing for them. IV fluids are preventing the body from dehydrating, and antibiotics may be preventing bacteria from infecting the body.

“The one thing that is really, very clear and sometimes very difficult for families to appreciate is that brain dead is dead,” says Goldberg.

So in a way, the only reason brain death exists is because modern medicine has allowed us to catch death so early that we can temporarily suspend the moment that the brain has died but the body has not yet gotten the message. Outside of a hospital, that would simply be a fleeting handful of minutes before death.

Increasing families’ comfort and understanding during such a trying time is a feat in itself. But there’s another very important aspect to Dr. Goldberg’s training program: “When we look at organ donation in brain dead patients, the huge limiter in families’ giving consent for organ donation is this conversation and that’s why we think it’s incredibly important. We know from data and literature that patient’s families regret not having this opportunity. But if they’re told that from such tragedy that their loved one has gone on to save 5 or 6 or 7 people by the gift of a kidney or a liver or a lung or a heart, you can only imagine how wonderful that makes them feel. They don’t regret donating, they regret not donating.”

In fact, the conversion rate of designated donor patients who end up actually donating has risen at Temple’s surgical ICU under Dr. Goldberg’s watch. The program statistics are telling. Before the training, 53 percent of residents believed brain death equaled death and only 31 percent felt comfortable discussing brain death with families. After training, those numbers jumped to 93 percent and 98 percent, respectively.

“But really, those are numbers,” says Goldberg, “but when you drill down, you’re talking about patients, and people and families, and that’s what it’s all about.

Ethics and brain death

This issue certainly strikes a chord with NYU medical ethicist Art Caplan, who is often asked to weigh in when national debates rage over a patient on life support, or family members wage court battles over what is the right thing to do. Caplan wishes he could eliminate the term brain dead altogether.

“Brain death is death, and I wish I could get doctors to stop telling patients that somebody is brain dead,” he said. “Nobody comes out and says your relative is ‘cardio-pulmonary dead’ they say – your relative is dead because their heart and lung have forever stopped working.”

Caplan adds that discussions about life support machines should be about “when” and not “whether.”

“Some of these cases in the news where people say ‘I want to pray for a miracle,’ or ‘I want to deliver a fetus’…those situations shouldn’t even come up as options, because the doctor should say, ‘Sorry your loved one is dead.'”