Another glimpse into the Love & Death Issue, our interview with pediatric palliative care oncologist, Ray Barfield. Ray also teaches philosophical theology at Duke Divinity School. Tissues at the ready…

When you think of modern healthcare, what comes to mind? White hallways, beeping monitors, lots of nervous energy, little laughter? Whether or not you’ve had positive experiences there, it’s hard to deny that the hospital often feels far from home. Part of this is unavoidable—CAT scans and physical exams will always be intrusive. But, as Atul Gawande noted in his groundbreaking bestseller, Being Mortal, much of what makes medicine scary is in the doctor’s hands. In the book, Gawande tells his own story of becoming a doctor, and needing to confront insoluble medical issues, but not having the emotional vocabulary (or the training) to do so:

I never expected that among the most meaningful experiences I’d have as a doctor—and, really, as a human being—would come from helping others deal with what medicine cannot do as well as what it can.

Doctors, according to Gawande, are often so blinded by next steps that they are incapable of having a frank conversation about what ultimately needs to be addressed. In order to have that conversation, something must happen that rarely does: the doctor must listen.

Ray Barfield’s work is focused on that kind of listening. Ray is a practicing pediatric oncologist—he works with kids who have cancer. He also directs the pediatric palliative care program at Duke Hospital. And if that weren’t enough, he is also a professor of Christian philosophy at Duke Divinity School. In our conversation, Ray described having to learn from his patients how to approach the tough stuff. Especially in a setting where illness and suffering is least expected, the meaning of “palliative care” is transformed from small solutions for managing symptoms, to a real concern for the person behind them.

Ray spoke with us from Durham about what that concern feels like in a hospital room.

MOCKINGBIRD

Give us a picture of your week. Are you teaching most days or are you seeing patients most days, or both?

RAY BARFIELD

It’s probably easiest to say both. The classroom is not my natural home, so I’ve had to learn about it in the nine years that I’ve been here.

But my primary work is definitely being a physician. I split my time between being an inpatient pediatric oncologist and working with pediatric palliative care. I started that program about nine years ago. Before that, we didn’t really have a program, so I’ve been building it over the years. It took a lot of diplomacy. I was surprised at how much of the early work was overcoming suspicion.

M

How do you mean?

RB

Well, when you hear “palliative care,” most people will think of end of life care, and that’s not the way that I’ve thought about it. When I think of palliative care, I think of walking into a room where somebody is suffering. The suffering may be physical—it may be pain or some kind of non-pain symptom that’s interrupting their day. It may be from a disease or from treatment for a disease; it may be spiritual suffering; it may be psychological suffering; it may be relational suffering. But, when I think of palliative care, I think of walking into the room of someone who’s up against something hard, and basically trying to understand what doctors don’t usually try to understand. In medicine, there’s the objective data: the images, the labs, those sorts of things. With palliative care, I’m trying to understand what it’s like to be you, what’s hardest right now about going through this thing that you’re going through. Once I understand that—which is seeing the whole process from the inside of the person rather than the outside of the person—then I can ask questions that help me to understand how I might help that person.

Sometimes it’s as simple as making recommendations for untreated pain. But other times, someone may have had their whole worldview rocked by a life-limiting disease. There’s a 15-year-old girl needing a bone marrow transplant who’s been told that she’s going to be infertile. She may live, she may survive her cancer and her bone marrow transplant, but if you’re a teenage girl and you’re told that you’re not going to be able to have babies, that’s a major loss. And so for me, palliative care is responding to that.

And it’s true that if you’re dying…well, dying is a cauldron unlike any other. You’re walking right up to a threshold that’s fundamentally mysterious, no matter what your starting point is. If you start out an atheist, and you’re saying, “I love my life, but death is death, it’s the end of the story, it’s done,” still, you’ve never died. You don’t know, and once you walk up to the threshold, you may have some questions that surprise you. And the same is true for the joyful-in-the-Lord Southern Baptist who comes up to a limit earlier than they thought they would. Suddenly they’re wondering, Now wait a minute, I’ve been going to church my whole life…what’s going on here? I’m a good person. Did I do something? Or is the world maybe different than what I thought it was? So, these kinds of things are not marginal to what’s going on in the room, but they also are not testable in the ways we usually think of a doctor’s research.

M

Right, you normally assume that the doctor comes in and he or she has their plan of attack: what steps they need to take next, what protocols they need to follow, how they’re supposed to guide the patient through it all.

RB

One of the interesting things is that probably 90 percent of routine medicine—setting broken bones, giving antibiotics, sinusitis, pneumonia, that sort of thing—will do a lot of good in the world, and the doctor will go home knowing that that day was worthwhile. But with contemporary medicine, we’ve made it so hard to die, and we have so many options for just continuing basic biological functions, just making the blood go ’round and ’round and the air go in and out. In contemporary medicine, it’s not infrequent that you’d come to a place where the biological knowledge won’t help you. When you come to that place, if you’re going to be a good doctor, a good physician, you’re going to need to look to something besides the biology to help the family or the patient come to a decision. And in those cases, I don’t know how to get there without paying attention to these larger questions. I think every doctor eventually comes up against that situation, and it doesn’t fly to say, “Well, that’s not really my area of expertise.”

M

Do you find, on the other end of that conversation, that patients or families balk at those kinds of questions?

RB

Well, it depends on the family. Most families I’ve met throughout my career, if we’re at the point that we’re trying to make a decision, they’re very interested in trying to be understood. They want you to understand where they’re coming from, who they are, what they’re hoping for, and what they’re hoping won’t happen.

Sometimes, it’s surprising. You know I have people in the ICU who will tell me plainly, “Well, I know you don’t know anything 100 percent, I know you’re not God and don’t have a crystal ball or anything—just give me your best judgment. Is this person I love going to be able to do the following things: are they going be able to talk? Are they going to be able to eat, walk?”

On the other side, I have families whose lives are profoundly informed by their faith. There’s a very deep sense that death is not the end of the story—and this is a phenomenon—families who, despite that frame, will keep adding machines, no matter how devastated that patient is, to the very bitter end. There’s even a study recently published in JAMA by my friends at Harvard, Michael and Tracy Balboni, and several others. The study compares people who describe themselves as religious—who are supported in a significant way by a religious community—and those who say that they are not religious. The study found that religious people have a higher use of intensive care at the end of life and a lower use of hospice. And there’s something that could be taken as almost counterintuitive about that. But to be honest, I think that I’ve figured out some things about that.

M

What do you think?

RB

My experience has been that there’s a particular biblical, theological or religious calculus that occurs. I’ll give you one version: Jesus said that if you have faith the size of a mustard seed, then you can say to this mountain, “Get up and throw yourself into the sea,” and it’ll throw itself into the sea. That’s an if-then statement. You want the mountain to throw itself into the sea, but there’s a condition: you have to show faith. That’s the condition for the miracle. And what I’ve seen a lot of times in the ICU—and I’ve seen pastors push this position before—is that the mountain you want to hurl into the sea is the disease. You want to get rid of the disease. You want your loved one to be healed. That’s the miracle you want. The condition for that is faith. And this is the scriptural witness they’re following.

Now, the problem comes when the expression of faith takes the form of continuing to do intensive care interventions, to keep the biology going. Once you add a ventilator, cardiac pressors, dialysis, all these things, they become the form by which that faith is expressed, and so you have to keep going because the condition for your miracle is faith.

That’s one place for sure where I want to hear the family’s story, their frame, their perspective. And families willingly share it when they see that I’m not there to undermine them. I’m there to listen, so they want me to know; and if I’m in a position like that in an intensive care unit (which is not unusual), I don’t know how I would be a good guide if I didn’t understand those parts of the story.

M

That if-then conditionality, reminds me of the way Kate Bowler talks about the prosperity gospel. She wrote that article in the New York Times about its theology, especially as it related to her own cancer diagnosis. She wrote about the American preacher, E.W. Kenyon, who was in the early stage of the movement:

Christians, Kenyon advised, must avoid words and ideas that create sickness and poverty; instead, they should repeat: “God is in me. God’s ability is mine. God’s strength is mine. God’s health is mine. His success is mine. I am a winner. I am a conqueror.” Or, as prosperity believers summarized it for me, “I am blessed.”

That op-ed really rocked us all here. But if you believe that God’s action is dependent upon your faith or your positive thoughts, that would certainly make sense of adding one more machine to the equation.

RB

You bet it would. And if you’re going to help a family do otherwise, it’s best to help them reframe that in faithfulness. They need to remain faithful. It’s very important. This is not the time for them to start questioning their entire worldview—they’re in the middle of a horrible crisis. But at the same time, they’re trapped. A lot of these interventions have a cost, and I’m not talking about a financial cost; I am talking about suffering, lost opportunities, all sorts of things. So it matters, and my patients have taught me ways to disconnect the additional, potentially pain-causing, opportunity-losing interventions, from their faith in God.

M

In many ways you’re walking these people to a threshold they haven’t wanted to reach. So much of this sounds like pastoral care. What have you learned about how to broach the subject? And also, is there a way to help someone see that maybe the faithful move is to surrender or to accept?

RB

Because these are individuals with a history that’s unique to them, a lot of what happens in a room feels almost like improv. When you go to an improv show, the first thing they do is ask the audience: give us a place, give us a vocation. And they take those starting points and improvise a scene. Similarly, when you come into the room, the first thing you have to do is listen for the signals they’re giving you, because they have to tell you what the starting points are. And then, together, you make a scene that makes sense given the starting points.

So, when I walk into a room, and I’m talking with a Christian family that is embedded in a conditional theology or worldview like Kate Bowler describes (and Kate’s a good friend of mine), sometimes the best way to help someone reframe their decision is to try to recognize the goodness in their current way of thinking. You recognize the good things that they’re trying to do: they’re trying to love their person, whether it’s a spouse or a child. They’re trying to love as well as they can, and they’re trying to be faithful to God as well as they can, and they’re doing it all recognizing that the stakes are so much bigger than they can manage. People in that situation are trying to make decisions that are bigger than any of us. So, the first thing that I think is important is not to try to get people to move in any direction, but to listen and to see the goodness of what they’re trying to do.

A couple of examples of things that can help people in that situation: let’s take a kid, since I’m in pediatric oncology, but this would apply if I was thinking about my wife or she was thinking about me. Parents always want to give good things to their children, especially in these scenarios. One thing I’ll say to parents is: “I see what you’re trying to do, to make sure that the team is giving every good thing that’s possible to your child.”

But there’s another side to good parenting, which is protecting our child from harms that don’t have benefit. If I’m on a hike with my daughter and a bear comes out of the woods, there’s nothing good about my daughter being mauled, so I will intuitively stand between that bear and my daughter, even if I can’t stop it. And so the problem in medicine, especially if you’re in an intensive care setting, becomes this: which category does this next intervention fall into, is it a good thing that I want to give to my child or is it a harm without benefit that I have to protect my child from? And it’s not always clear.

One of the first things I do—and this is a general thing, it’s not specifically related to faith—is to try to reframe the decision-making so that it doesn’t look like we’re withholding some good thing from a child. If we decide not to do chest compressions on a kid who is osteopenic—which means the bones are brittle—and who has four organs failing, we know that doing chest compressions is not going to change anything about the rest of what’s going on. The only thing it’s going to do is break every rib in the kid’s chest so that their last experience is terror and pain. So, if it’s not going to benefit the child, and if it has a very high likelihood of causing pain and suffering in the last moments of life, then I would want to stand between my child and that harm. I’m not withholding a good thing, chest compressions; I am standing between my child and harm without benefit. It’s still good parenting.

M

Instead of “good parenting,” are you ever reframing “good faith” for people in these scenarios?

RB

When I have an intuition that the family’s open to talking about the faith, I’ll talk about Gethsemane. I’ll say, “Do you remember when Jesus was in the Garden of Gethsemane? Do you remember what He did there?” Well, he prayed. “How many times did he pray?” Well, the Bible says he prayed three times. “And what did he pray for?” He prayed that the cup would pass. “And what was the answer?” Well, the answer was that the cup wasn’t going to pass.

So, we have Jesus, who was praying fervently for deliverance, sweating, with drops like blood, and he ends with, “Nonetheless, let your will be done, not mine.” For Jesus, the answer is that this is something that will not stop. This is going to happen. For the patient, for the family, it doesn’t change the pain, but it at least allows room for Jesus. If Jesus can pray and the answer is “No,” then maybe I can be open to the possibility that this cup will not pass. At least it doesn’t fracture my faith. Because Jesus experienced it.

Other times, I’ll have a family that’s been told, “Just stay in hope. Just stay in the joy of the Lord.” But they’re noticing in themselves that they’re really distressed. They’re anything but joyful or hopeful, and they’re not feeling faithful, and they’re worried that maybe their feelings are going to be taken as a lack of faith. And if they’re thinking in these terms, they’re also thinking they could be responsible for their child’s death. And that’s where bad theology can do genuine harm.

I’ll ask them, “Do you remember when Jesus was on the cross?” They know the story, and I’ll remind them of the thief who said, “Don’t you know who you’re talking to?” And what did Jesus say to him? Jesus said, “Today you’ll be with me in paradise.” From the cross—death was going to happen—Jesus spoke a word of comfort and hope that is reliable. “Today you’ll be with me in paradise.”

But from that same cross, the same Jesus cried out, “My God, my God, why have you forsaken me?” Jesus gives us permission, by his example, to simultaneously hope—to hope in the kingdom, to hope that he has overcome death, to hope that death is not the end of the story—and to lament, to say, “I feel so alone. I do not know where you are. I feel so abandoned. Where are you?” If Jesus can do that on the cross, surely that gives us permission to feel what we need to feel and to not think that that’s somehow going to disrupt the goodness of God.

M

Wow. That’s beautiful. You really see people experiencing the “valley of the shadow of death.” We all live, to some extent, in the abstract fear (and denial) of it. But when that fear becomes concrete for people, is it a very different experience?

RB

I think that’s a really important point. There is a profound difference between thinking about a thing and experiencing a thing. There’s a sense in which you can know everything about the literary, cultural, and religious history of two people in love. You can know everything. You can have all the books on it. But when you fall in love, you all of a sudden realize that the living of the experience of falling in love is completely its own thing. No amount of knowledge can substitute for the actual experience of falling in love with someone.

We have a lot of small-d deaths. Gradually, over the course of our life, we experience small-d deaths, and they are in a sense practice, practice for what we ultimately let go of in death. One of the challenges in Christianity, I think, is what to think of death. Is death an enemy? If it is, it’s an enemy that we have overcome. We have our John Donne poetry, “Death, thou shalt die.” But nonetheless, clearly the victory over death is not that people don’t die, because people die all the time.

My guess is it’s going to be like falling in love, but it’s falling in death. George MacDonald, who was C.S. Lewis’ great spiritual master, thought that even sleep was preparation for death. He said that every night, when you’re tired, you lay down and you let go, you fall into sleep. He said, don’t worry about death, you don’t have to understand it, you don’t have to define it any more than you have to define sleep. Start here: begin with the love and sovereignty and attention of your Creator. And once you have a hold of that, you’re welcome to think about things as much as you want, but it’s not a requirement. When your time comes for death, it’ll be something that you’ve been practicing for your entire life. You will lay back into it the way that you lay into sleep. That’s what he thought was the best route.

As we age, things happen to our bodies: our prostates enlarge and it’s harder to pee. We begin to lose functions. We can’t run as far as we used to run, or we trip and we chip our tooth, and now we can only bite into apples on one side of our mouth. Those are little things, but I think it is a spiritual practice to come to a place where we don’t live our life in resentment of them, grasping after them. Instead, we come to see that every good thing that shows up in this life, including this life itself, has a season. The sun goes up, the sun stays up for a while, and then the sun comes down. We see that happen over and over and over in everything we have in our life.

So that’s my take on it, as someone who hasn’t died yet. When it’s my turn to walk to that threshold, I’m going to pay attention. I am hopeful that I’ll be able to approach my death in that way, with gratefulness and letting go. And I say that as someone who is 52. If I were told that I have metastatic pancreatic cancer, and I’m going to die within the next six months, I would certainly still want to say, “Hey, wait a minute, my grandmother died at 101! I plan to live for another four or five decades!” I am going to feel loss, but I’ll also hope to have a sense of gratitude, to say, “Wow what a gift, to have lived 52 years.”

There’s a lot of entitlement to what we think we’re guaranteed in our lives. I think that faith communities can spend more time paying attention to who’s informing that narrative and ask, “Where’s that coming from? Is that a transformation of the church by a narrative that’s coming from elsewhere, or not?” This doesn’t mitigate the grief we experience, but I believe we can even come to a realization that—just like everything else we experience in the world—lives have limits. Some lives are short and some lives are medium and some lives are long. All that is relative. As for the “whys,” again, feel free to think about those questions, but if you begin with faith in a loving and sovereign God, the point is not to answer those questions. In my experience, you don’t have to answer those questions to find your way into faithful living, even through very hard things like the death of a child. Thinking about that is something that every church I’ve ever been in could do a lot more of.

The second thing is the scriptural basis for lament and grief. I love reading the Psalms and Ecclesiastes and the prophets—there are some tremendous examples in scripture of the central place of lamentation, of crying. Crying is a form of gratefulness, a form of expression that this mattered, this was a good thing and now it’s been destroyed, and it’s been destroyed before we were able to fully enjoy it, and I’m really sad about that and even mad about that. Recovering how we approach lament and grief—I think that’s a thing that we could do a lot more of as we approach the concrete point, the concrete reality of my death. Where’s the room for lament?

M

Atul Gawande’s book, Being Mortal, talks about making that space for grief and the real importance that has. To lament and to stand where you are, whether it’s in gratitude expressed as anger or in gratitude expressed as sorrow, is something almost robbed of a patient in many situations.

There’s an incredible busyness in the families of patients who are going through such serious stuff. I’m sure you see this, where there could be something beautiful (or at least healthy) in someone letting go of all their dammed-up anger or confusion or sadness.

RB

Absolutely. It’s almost a caricature of raising teenagers. You know they need something, you see that if they would change something, their life would be easier. But they can only grow at the pace that they can grow. So, you’re always looking out for moments or places where you can reach someone. Even as a doctor, listening is an ongoing thing. I’m always listening for points where I can make a genuine connection.

I have no idea what that moment will look like. But I can tell you, it happens. It just happens. But it’s also the case that sometimes, it just never does happen. I’ve had families where I hoped that we would come to a place where we could have the kind of conversation, something that at least has the flavor of the kind of things we’ve been talking about, and to the last second we haven’t been able to do that. And in those cases, you just love the best that you can, and you walk with them no matter what. If they need to be on Google, looking up the next Phase 1 trial all the way to the last moment, so they practically miss the moment of death, well, if that’s what they need to do, we can stay in the room with them. We can still love them.

 

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