Last week Time Magazine asked me to write a commentary on the case of Jahi McMath, the 13 year old whose family sought to keep on continuing life support after doctors had declared her dead. On everyone's mind as well was Ariel Sharon, the former prime minister of Israel who died on Saturday after eight years in a "vegetative state" following a stroke in 2006. I knew the first person I needed to call was Ray Barfield, director of the palliative care program at Duke and also an associate professor of Christian philosophy at Duke Divinity School. Barfield is one of the most passionate and compassionate doctors I know, deeply engaged as both a doctor and a Christian thinker with questions of technology and meaning in medicine. Our conversation shaped my Time essay ("Lost in the Valley of Death," January 20, 2014) and should inform all of us as we wrestle with the possibilities and limits of medical technology.
—Andy Crouch, executive editor, Christianity Today
When you hear of a case like Jahi McMath's, what do you sense is missing in the public debate?
In a case like this there is a lot of forgotten history, on the part of both medicine and the church.
Part of the history that medicine forgets is the reason we started thinking of brain death as death. We didn't really start thinking of brain death as death until doctors at Harvard discovered that if we were to define it that way we'd be able to harvest organs for transplantation. Advances in organ transplantation is what first really pushed medicine to start coming up with alternate definitions of death.
Medicine tends to forget that—we just hand the definition on and accept it as it is.
The church has plenty that it has forgotten as well. When Jahi's uncle says, "Our faith is so strong that we don't even think about the possibility of death," he's expressing a common sentiment, which is that we don't acknowledge death. But that certainly isn't the historical Christian perspective. Jesus' death and resurrection is a two-part event, after all. The Christian hope for resurrection is not a denial of death, and it's not a perpetual delay of death, or even a resuscitation. It's an overcoming of death.
I think there's a lack of memory on both sides.
And when both sides have forgotten so much, they have a hard time working together.
I've seen this over and over in the ICU. Research has demonstrated empirically what many of us have witnessed: religious families are much more likely to insist on heroic medical measures at the end of life. If you believe that the universe is nothing but atoms bumping together—if, that is, you're essentially secular or naturalistic in your beliefs—when your loved one is at a place where their pain is gone and they're only being supported by machines, and you don't believe there's any God who is going to intervene, you are willing to remove the artificial support. What's the point of doing otherwise?
If you're a theist with a certain instrumental take on faith, on the other hand—"Here's what I want. I just have to believe hard enough"—it's very different. Then God becomes another power that you have access to, and you just have to believe hard enough and pray hard enough. The aim is not so much submission to the will of God as to marshal enough power to achieve your goal. And absolutely, who in this situation would not want to do that if we could?
But while medicine may have a very uncertain grasp on its own definition of life, it does have access to massively powerful technologies to keep molecules going in the right direction. When that clashes with a faith that believes the only way to achieve the healing of your child is to demonstrate your faith to the almighty God, and if the only way to do that is to use medical technology to keep her alive, you're set up for the kind of story that has played out over the past few weeks.
One of the striking things about this case is that there are such strong opinions on both sides, people who think each side is behaving immorally.
Both sides are going to be excoriated for their positions. I can tell you that whoever the surgeon was who did the operation, he or she is overwhelmed with grief. The intensive-care doctors and neurologists who had to come to that determination of death are grieved.
Is there a way that doctors and families in cases like this can find common ground?
Medicine would do well to recover a sense of humility in the face of mystery. I think we should stop using the naturalistic, reductionistic language we tend to use. Honestly, medicine doesn't know what "dead" is. If you can't say what dead is, then you don't know when someone is dead. If the hospital says we know what death is, that's when a brain is dead—well, how do you know that?
Very probably these doctors did what doctors are trained to do. They tend to think their goal is to provide information. They do one test, then another test, then they check for a rise in CO2 when you turn off the ventilator, and so forth. And they keep getting more information which is supposed to demonstrate a biological fact. But the family is not living in the world of biology, the family is living in a world of spiritual powers.
Instead we need to talk in terms of ends, goals, and purposes. If you sit down with the family and you say, "What are you hoping for, what's your goal, what are we trying to achieve here?" that can lead to a very different conversation. You may disagree about the likelihood of achieving the goal, but at least you've talked not in terms of so-called facts that we actually are very unsure of—like the question where does life begin and end—but in terms of purpose. At least you're talking about something meaningful rather than something that, frankly, medicine, by its own standards for what counts as knowledge, doesn't know.
That's why we need humility. To say our definition of death is right would require a deep and long discussion about the metaphysical structure of the universe. Have we really had that discussion? That's a tough discussion to have when the church has forgotten its metaphysics and medicine has forgotten its own history.
What would you say to Jahi McMath's family to convince them that no further intervention can change the outcome of her case?
If that's their view of the world, why would I want to convince them otherwise? Is it because I have a deep and abiding passion for saving money in this time of elevated medical expenditures? Okay, let's walk over to every ICU in every hospital in the country and I can point out to you why that's a contradiction. We're expending extraordinary resources on all kinds of cases beside this one, in the hope that we will give people a chance for a different outcome.
So that can't be the reason. Why would I want to convince them of my point of view? Because I think I'm right? Because I'm an arrogant SOB?
I had a patient who was in an accident with an ATV. He was 12, ran into a tree without a helmet, and his brain was gone, but he had enough brain stem to keep his organs going. We went through the same thing as Jahi McMath's family, except he did still have some brain stem function. One day I was talking to the mom after a couple of months in the ICU. And she said, "What I want you to understand is that we always take care of our own. No matter what condition he is discharged in, we will take care of him. Just give him back to me, in any condition, and I will take it from there."
So he was discharged with a tracheal tube, a lap ventilator, a gastric tube, and a fitted wheelchair, and he's still alive three years later. He's been a meaningful part of that community. There's been no recovery of function, but his family and community have been true to their own moral commitments. Why would I want to convince a family like that to accept a different point of view?
I think the essential question for physicians to ask is this: Is there any way I can serve this family in the middle of their grief? If we ask that question we will really try to understand how much of that situation they understand. There are things they don't realize in the middle of grief. They may not understand what this will actually look like when they're in a long-term care facility, and two years later that random twitch turns out to be not a sign of cognitive function, but just a manifestation of a destroyed nervous system. I've seen families fall apart, I've seen other siblings completely ignored as all the focus was put on the child who had the accident. So I'm not saying we don't help families come to term with these hard realities, but we serve them in light of their grief and their convictions.
What role do faith communities and their leaders play at moments like these?
I really value having the faith leaders come in and help me to understand what's going on from their perspective. Then I can help them understand what the medical situation is, and we can have a conversation that makes sense from within their worldview. So often the pastor is trying to be pastoral, but never gets fully informed. The pastor keeps saying encouraging things like, "Keep praying, we're praying for you," and the family may interpret that as encouraging them not to give in at all to the doctors' pessimism.
And you should keep in mind, as well, that at least here in Durham, North Carolina, there is a fundamental suspicion in the African-American community toward the white-male-dominated medical system. And it's a well justified suspicion, frankly.
So I'd first ask why I'd want to convince them otherwise, and then get the important people in their life into the room, and try as humbly as possible to move toward truth. The truth of their world, the truth of their child, the truth of the future. But in the end, I personally would have no problem putting a gastrointestinal feeding tube and a tracheostomy tube in a child like this, putting them on a laptop ventilator and wheelchair, and sending them home. We need a much deeper understanding about death and life to insist on something different. For that matter, we need a deeper understanding of what it is to be an American, and to be free—to be a free American—before we can start picking battles like this.
Ultimately, conversations like this matter. We can legislate all we want, but if we don't go after what patients, families, doctors, nurses, and churches face everyday, we miss the heart of the problem. We don't need window dressing for our wandering system—we need to reimagine medicine.
