How Narrative Medicine Can Minister to Hurting Patients

January 14, 2014
Eva Bleeker, Darrell L. Bock, and Joe Fornear

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Topic Time Codes

00:13
Dr. Bock introduces the topic and his guests
02:25
Bleeker explains narrative medicine and shares her experience in Europe
06:03
Fornear shares his experience as a cancer patient
12:53
The relationship of the chaplain, patient and the doctor or nurse
16:40
Narrative medicine in the context of patient care
20:19
Fornear explains how his ministry to patients works
27:01
How does listening help open up a door for spiritual conversation?

Transcript

Darrell Bock
Welcome to The Table where we discuss the issues of God and culture. I’m Darrell Bock, Executive Director of Cultural Engagement at the Hendricks Center at Dallas Theological Seminary, and our topic today is patient care, and so we’ve invited in two people who have experience in this area. I’m going to let them introduce themselves. Eva and Joe, and Eva is a Chaplain, and Joe is a Pastor, but he also is a recovered cancer patient. So he’s been on, if you will, both ends of the spectrum. So I’ll let you each introduce yourselves. Ladies first in the South, so Eva you’re first.
Eva Bleeker
Very good; my name is Eva Bleeker, and I am a chaplain right next door to the DTS Campus at Baylor University Medical Center, and I work primarily with neurology and organ transplant patients.
Darrell Bock
Oh wow that sounds actually pretty fascinating.
Eva Bleeker
It’s pretty fascinating.
Darrell Bock
Yeah that’s great, and Joe?

Joe Fornear: Joe Fornear, I’m the Executive Director of Stronghold Ministry, which is a ministry to cancer patients, and I was a Pastor for 18 years, and I’ve been doing this ministry for the last 5. I’m a graduate of Dallas Seminary. If I have any bad theology, it’s not Dr. Bock’s fault; a little disclaimer there.
Darrell Bock
It’s a pleasure to have Joe in here. There actually is a story behind how we put this panel together. Eva is the wife of Josh Bleeker, who is the person who signs off on the admission of all students onto this campus, and Joe is a former student who I happen to see in a Jason’s Deli while we were planning doing this topic months ago, and he told me his experience and what he was doing, and I said, “Man you’re a perfect fit.” So I guess that’s why I was supposed to have lunch at Jason’s Deli so we could meet, and then the really interesting thing is that Joe and Eva know each other because of a past experience, which I didn’t know until just before we went to record today. So there’s some really cool, what we call in my house, “coinky dinks” going on in this podcast. Well Eva let’s start with you, you’re a chaplain, and you’ve just come back from an interesting program in Europe that you got a scholarship for. Why don’t you tell us how medical care is changing and that experience.
Eva Bleeker
Sure. So there’s an interesting thing that’s bubbling under the surface of healthcare right now, and chaplains are a part of it, although it did not begin with us. In the way that I’m aware of it is primarily through Columbia University in New York. It started with a doctor named Rita Charon, and she has pioneered an area called narrative medicine. So you can feel that those two things are somewhat polar, at least in the academic community, and Dr. Charon is trying to bring those things together with a recognition that a patient’s story is a part of their healing process, and so the training and the discipline that’s coming up under this umbrella called narrative medicine is pushing toward a kind of healthcare that recognizes the human in the patient. The person who has a story to tell who maybe can teach something to the clinician, and so the conference that I was a part of in June at King’s College, London was a first convening of the academic community around narrative medicine.

So it was extremely diverse. People from the performing arts, from the humanities, writers, dancers alongside the researchers, the linguists, and the medical community itself, the nurses, and the physicians, and the therapists, and somewhere I fit in there.
Darrell Bock
Somewhere as a chaplain.
Eva Bleeker
Somewhere as a chaplain with a creative writing degree, and theological training from here, and then moving into daily patient care over at Baylor. So I got to present at the conference about work I am doing pertaining to chronic pain patients. Particularly migraine headache patients, but the big idea is that there is better healing for patients if we hear their whole story than if we just bang through a specific list of diagnostic questions. So that, I think, is fairly plain on the medical side. I think that has implications too on how to provide spiritual care in a hospital setting that also hearing this story before we give our diagnostic questions is a good practice.
Darrell Bock
So the area again, because it’s brand new for me.
Eva Bleeker
It’s brand new.
Darrell Bock
Yeah. The area is called?
Eva Bleeker
Narrative medicine.
Darrell Bock
Narrative medicine, and the goal is to hear the story of the patient, and to really get acquainted with them from what I can tell, and what they are going through, is that basically it; as you’re caring for them?
Eva Bleeker
That I think is the foundation, it is, and there are statements being made even such like this; it is important for the doctor to love the patient, and if you’re like me despite the abundance of excellent doctors, you may have had an encounter with a clinician that wasn’t particularly loving.
Darrell Bock
With a clinician who was a clinician.
Eva Bleeker
Yeah.
Eva Bleeker
Right.
Darrell Bock
Interesting. Now Joe let’s talk about your experience on the two sides. Why don’t we talk about first about the medical condition that you had, and then talk about the ministry that came out of that experience?
Joe Fornear
Back in 2002 I had a lump show up underneath my arm, and didn’t know what it was. I went to the family doctor. Twice he said I don't know what it is, but it’s not cancer. It’s way too soft to be cancer. So I got misdiagnosed for about three months, and it blew up under my arm, and ended up [that] I had to have a biopsy, and on Christmas day of 2002 they called me and said what you have is metastatic melanoma. That was the biopsy, and so they had to go in and take the rest of the tumor out, because they only took a part of it, but it was huge under my arm, because I got misdiagnosed for so long.

Then I spread to my stomach. I had a third of my stomach taken out, but you know those grow back I found pretty quickly.
Darrell Bock
Your stomach grows back?
Joe Fornear
Yeah, yeah.
Darrell Bock
Well I guess that’s good to know.
Joe Fornear
They kind of bounce back really well, but then it spread all over. It was in my lung, my kidney; it was in my pelvis, and it grew threw and fractured my ischium bone. One of the bones you sit on. It was on both sides of my pancreas growing into the middle. One was a large tumor. Then in May of 2003, they gave me days to live. My doctor said, “You’ve got days to live. You’re going to die from this.” But the Lord turned it all around, obviously, and you know here I am. That was 10 years ago in August. I was declared cancer free. So I pretty much had it all. I had the chemo. I had three surgeries. I had radiation. So I can relate to a lot of the things people go through.

This happened in year 12 of my pastorate. I pastored for 18 years, but in year 12 is when it happened, and we stared noticing all these people coming to the church who had cancer, because they’d find my story on our church website, and they’d say, “Hey this pastor has cancer. Let’s go there.” So it was turning into somewhat of a cancer ministry already, and you know the people in our church kind of got behind me, and said you know if you ever want to start a ministry, and do this, and take it off we’ll help you. So that’s what we did in 2008, on the day Bear Sterns went belly up is when we actually launched it, which was a great time to start a nonprofit. Right at the beginning of the financial crisis, right, but God’s in control.

We call it Stronghold Ministry, because during it, it’s Old Testament God stronghold as a support. He’s holding on to us, because during it I felt so weak and so powerless so much of the time, because it was a beat down. You know, I come from Pittsburg where you know everybody talks out of the side of their mouth, and --
Darrell Bock
You’re a Steeler.
Joe Fornear
Yeah that’s right, you know it’s tough. My dad was a drill sergeant. You know I worked in construction all my life, and did sports, and you know being tough was being about you know you’re going to beat this type thing, but it really beat me. You know and so what I had trouble doing was hanging onto God. What he told me was, don’t worry about that, I’m hanging onto you, and that’s where we got Stronghold. So now our logo is kind of this God holding onto me. So that’s what we do. We provide that kind of support; spiritual support to people fighting cancer. That’s our main thing.
Darrell Bock
So how long were you in the hospital? Have you totaled up how long or how much time you spent in the hospital?
Joe Fornear
Well, I had a couple of times where it was two weeks in a row. I was probably in two months all totaled, you know.
Darrell Bock
And you went through how many rounds of chemo?
Joe Fornear
I went through 11 rounds of interleukin the first time, 4 rounds the second time, and they call them rounds, but they’re treatments, and then I had 6 rounds of a chemo cocktail as well, which was every day for a week; 6 weeks of that, every day for a week.
Darrell Bock
Oh wow; that’s six different points every day for a week? Is that how that works?
Joe Fornear
No it’s once a day, five days a week, for six weeks.
Darrell Bock
Oh for six weeks. Okay six weeks of succession of chemo. Wow.
Joe Fornear
They’d give me a week off in between.
Darrell Bock
That’s not so bad.
Darrell Bock
Wow, and you were obviously on the edge.
Joe Fornear
Oh yeah. You know it was in my pancreas. When your pancreas starts closing off it starts eating itself, and it starts leaking, and it starts eating up all your organs, I mean it’s designed to eat up things, and the enzymes in your pancreas. And so that’s what it was doing, and it really hurt. I mean it was tremendously painful, and they were giving me Dilaudid, which is one of the strongest pain medicines, Eva knows about that, and I said to the nurse I’m afraid of getting addicted to this. And she said, “Don’t worry about that. The doctor said to keep you comfortable.” And I said now I knew I was bad, but I didn’t know they had given up on me, and they started talking hospice after that, and all that.

This is pretty interesting, because I said to my doctor when he told me that, “You have days to live Mr. Fornear.”

I said, “You know well I could out live you.”

And he said, “Well that’s possible, but not very likely.”

And I said, “You know well, I’m going to be laying here on the bed, and you could go out and get hit by a truck in the parking lot.” And he said, “Yeah well that’s true, but with you Christians I wouldn’t be surprised.” He said, “I’ve seen so many crazy things with you Christians,” and he’s a Jewish guy; a Jewish doctor. He said, “You guys definitely have something with Christ, and Christianity, there’s definitely something there. “

That’s what he said, and that’s before I got better. You know and he said I was the worst case he ever saw. So it was definitely a miracle. He calls it a miracle. My surgeon calls it a miracle, and we believe in miracles, you know we believe that people want that to be the prayer. You know they want you to pray for healing for them. We don’t believe God guarantees that for everybody in the scriptures, and certainly not in experience, because we’ve certainly tried to pray for everybody for healing, but we’ve seen some neat stories. We’ve seen God answer some prayers in some big ways.
Darrell Bock
And how long has the ministry been going on?
Joe Fornear
We’re five years old.
Darrell Bock
Five years old, wow. I’ll come back to you in a minute and ask what that all entails. So from a chaplain standpoint, obviously you’re dealing with people. If you’re dealing with neurological conditions and organ transplants, you’re dealing with people who are in pretty serious condition. By neurology are we talking stroke patients primarily?
Eva Bleeker
It includes stroke, but I see traumatic brain injury, overdose patients, about the whole neurology unit, also epilepsy monitoring, and like I mentioned, the inpatient migraine headache, and then a variety of other things on the neurology unit.
Darrell Bock
You know this may or may not be a fair question, but I’ll try it. So how does this doctor, nurse, chaplain triangle work for a patient in your view as you think about that as a chaplain?
Eva Bleeker
That’s a good question. Well certainly the doctor is at the apex of that triangle right? So they are giving the orders for the patient, and then a lot of times I am working alongside the nursing staff and also the therapy staff. So the nurse is the gate keeper for the chaplain. I want to be respectful of that nurse before I go in and see anyone who’s under his or her care, and then we collaborate afterwards.

An exciting thing about my hospital context is that the chaplain is considered part of the interdisciplinary team. So we have a lot of voice, our feedback is taken seriously, and one other thing I would say about the relationship is when you set the patients aside, a major portion of my responsibilities is to support the staff on my floor. So here’s an analogy. We know that we have a core group of people in our churches who are doing most of the work, but sometimes we focus on the visitors who come in, and so we want to balance the care that’s coming from anyone in the church toward your regular attenders who are on their feet doing the heavy lifting, and the people who may come into your presence and stay, or may come in for a short time.

And so the way to expand the metaphor to healthcare is especially the nursing staff, although, all of the medical workers who are on the floors, they are that core of people who are teaching the Sunday schools, and working with the kids’ ministries, and picking up the folding chairs, and doing all of that hard stuff, and aren’t getting very many strokes for it. And the patients who come in, it is an honor to minister to them, and to be with them, but if we focus on them to the exclusion of the nursing staff, then we’re out of whack. So to the extent that I can with the time that I have, it’s my job to help support the medial staff on the floors.
Darrell Bock
And you mentioned a fourth player which I didn’t mention, but I just went through a friend having a stroke so I’m very familiar with this. The people who do the therapy; they actually aren’t nurses. They aren’t doctors, but they’re also very important to what takes place for the patient, because they actually help the patient to get ready hopefully, eventually to leave the hospital.
Eva Bleeker
Right so they’re doing the swallowing, and the speech, and the walking, and the standing all of that rehabilitation on ---
Darrell Bock
Yeah and that can be very shocking for a person who has been self-sufficient, has a stroke, and then all of a sudden can’t do anything.
Eva Bleeker
Absolutely.
Darrell Bock
So let’s juxtapose the two things we’ve talked to you about. The care of the team, and the narrative medicine; how does narrative medicine come in to this mix in terms of patient care?
Eva Bleeker
Well that’s a good question. For my part, it’s just a natural, because the basic unit of chaplaincy is talking and listening, and I think I’m doing my best work when the style of attending that I’m giving to a patient is mostly listening. I’m glad to see your head nodding on that as someone who’s been there.
Eva Bleeker
Because I think there’s a misconception that chaplaincy is about the chaplain talking sometimes –
Darrell Bock
Or the quick prayer.
Eva Bleeker
Right! Yes, but I think the best attending is done by the chaplain mostly through hearing the patient’s story, and kind of being receptive to the story even if it causes the listener pain. So that is equal opportunity between the staff and the patients. All of us are there because something horrible is happening. It’s happening to the patient and the patient’s family, but we all enter this narrative, and we are all sort of playing a role. So just to offer a safe space for the story to be told can be relieving to the person who has to bear the story.

So the way that it comes into play is at every turn in my day on the floor, whether I’m making a visit, because something super critical end of life care is taking place, or if I’m having the luxury of just making rounds, because my hospital is acute care from top to bottom, there is usually a need for a patient, or a patient’s family member to unburden themselves of that story. It was a surprise to me how affective and salient that kind of ministry is, and to believe that that is being Christian to sit, and just use my ears, and to actively love the person just by letting their pain into my body, but that’s kind of where the narrative part starts.

Now I have hopes for what I might get to offer that patient, or I might know something that the patient doesn’t know that I can give away later on. So that kind of attending is kind of like the working of a heart. So you have the systolic and the diastolic pressures going on, and during that time of rest that diastolic pressure you’re taking in whatever the patient has to give, and then there might be also a moment of systolic pressure where I have something to give back. So that is encounter, after encounter, after encounter throughout a day.
Darrell Bock
And this involves not only the patient, but this can involve the family members as well.
Eva Bleeker
Absolutely and certainly in cases where I’m in ICUs, and the patient is sedated, or intubated like that my primary ministry probably is to their family.
Darrell Bock
Now with Stronghold, let’s talk a little bit about how your ministry works. You are there to provide support for people in hospital? How do you do the assignments? How does it work?
Joe Fornear
Well usually someone will refer someone to us, and the first thing we do – and I have it, oh he took it – It’s a gift basket. It’s a tote, and we wrote four books so we put those in there, and we also have a $30.00 dollar Subway gift card that we put in there, and a Bible, and these wristbands too. Our Stronghold wristband says a new script on the inside, but the whole point is to build a bridge, not only to the Christian ones, but to the ones who don’t know Jesus yet. I mean that’s a big goal of ours. To reach people who don’t know Jesus, because when you have cancer it’s kind of like God takes a plow, and just runs it right down your heart, and opens you up, and softens you up, and it’s kind of like low hanging fruit. You know people really want to hear what I have to say.
Darrell Bock
They do want to talk about life and death.
Joe Fornear
Yes they do, and when I was a pastor for 18 years, I mean you know you had different people who were more open than others, but these people, the ones who are open, they contact us. So it’s really kind of really low-hanging fruit because of that. So we send this to build a bridge, you know the gift basket, and then people will email us, or write us, because we have patients in almost all 50 states. There’s like 49; Alaska is a hold out on us right now. So if you know anybody in Alaska let me know okay?
Joe Fornear
So in like 25 different countries too; so we send these gift baskets all over the world too. Some people will call. Some people I visit in the Dallas area, like there’s four or five I got to go down to Baylor where Eva works and I get to go visit them next, you know I’m going to go do that. So I do some visitation, but the bottom line is one of the things, and this ties into what Eva was saying with the narrative is to kind of give people permission to be weak, because they need that especially with cancer.

There’s so much of the live strong mentality, which you know part of that is really good, that whole you can beat this, you’re going to beat this type thing. People need to fight with all they have, but at the same time there’s a certain type of surrender to God that you fight with his power. That you fight with his strength, and not your own, and you tie into him, and you’re also real with him; like if you look at Job that was a physical condition he had. You know it was boils all over his body, and he was in intense pain, but he lamented to God; you know he let it all out. That’s part of his story there, and the same thing with David. He’s crying out to God and Jesus on the cross, and I think sometimes in a rush to be positive, or in just a pressure to be positive, people circle around cancer patients, or people who are really sick, and try you got to be positive. You know let’s be positive, and only say positive things, you know, but it doesn’t work that way, and I get a lot of patients writing me saying I don’t feel very positive right now. You know and they say, “You understand me.” The title of my story on this is, My Stronghold, A Pastor’s Battle with Cancer and Doubts, because I had a lot of doubts too about God.

You know I had how many years of seminary training, and all the thinking through all the hard issues. I was a pastor for 12 years telling everybody they could handle it. You know and when it came to me, like they said to Job, when it’s you it’s a little bit of a different story. You know and so when I was on my death bed I had a lot of doubts. You know and so I can relate to that, and I let people give that permission to be weak, you know, and then help them be strong in the Lord.
Darrell Bock
So what happens is someone contacts you, and you send this gift packet, and then what happens after that?
Joe Fornear
Well it varies. Some people just send a thank you note. Some people we never hear from again. We’ve sent out like 1300 of them. They were at $80.00 dollar value. We’ve dropped them down to $50.00 dollar value, but you know I think most people use that Subway gift card, even if they don’t read the Bible, you know, and we do that on purpose.
Joe Fornear
Because we’re trying to build a bridge with people who don’t know the Lord too.
Darrell Bock
And so what’s the arrangement for any kind of personal follow up, or anything like that that comes off of this. Is that dependent on the local area, or how does that work?
Joe Fornear
It just depends on the person, because someone will pursue us, and trust me, we’re trying to find more people that will help, you know get back with the people.
Darrell Bock
That’s actually what I’m working towards is do you hook up with churches to get people who are willing to do the visitations and support of the ministry? How does that work?
Joe Fornear
Yeah and there is cancer support groups that we help all over the country. We’re talking to two who are just starting this month, and I just got an email from a guy today that wants to start a cancer support group at his church. So we support supporters, and we also support Nurse Navigators. We also support doctors who want to give out our books and stuff, but I also send out a blog too; a newsletter. That keeps people tied into us, because they’ll get a new email, and you know with a devotional, and that helps them connect back to us. They’ll write us, and ask us for prayer. We follow the people in Caring Bridge. We have some staff; you know who go visit people. My wife is involved; she’s part-time with the ministry. She does support groups. We also have a once a month prayer group in town, and so we’ve had support groups that we ongoing too; off and on. So we do a lot of variety of different things.
Darrell Bock
Okay I’m going to come back to this, because this is important to encourage churches to think about how they can minister to people in their communities who find themselves in this situation, and usually that burden is left mostly to the pastor, and the pastoral staff, and so what you’re doing is significant is that regard. Let me come back to the chaplaincy here and say you’ve talked about the importance of listening, and that kind of thing, but obviously you listen just to listen. I mean just to hear the story, but I got to ask this question: What do you listen for? In other words, beyond hearing the story, what do you hope you might hear, and what might be a door?
Eva Bleeker
That’s an excellent question. I think broadly I’m listening for the meaning that the patient is putting behind the story. What kind of theological meaning or lack of a theological construct might be there? So even in one person’s journey they can feel the weight of their suffering in different ways, and think of it in different things; thinking of it as a test, thinking of it as a punishment, finding it to be meaningless, to say nothing of the isolation, or the brokenness, or the disability that might be associated with it. Like Joe was saying, when a person who has been healthy and strong experiences disability for the first time, it usually creates a shift in identity. So I’m listening for all of that, and then more specifically sometimes, because of my role with the hospital, I’m looking for things like might this patient harm themselves. So we screen for suicidality and things like that too. Like I said we only take acute care patients. So these are people whose illness is driving the bus right now.

You know I think that just about anything is a door. For so many people just receiving the kindness of a respectful ear is a door. Like Joe was lifting up for patients who cannot be real with the people who are closest with them; that maybe they are blocked somehow within their social group, or their family unit to talking about the potential of their death. To have someone who is willing to listen to the fear, or willing to pray that they would live is a door. It’s just present in the room at all times.

Now for me, my patient population is extremely diverse. I had no idea just how diverse our community here was in Dallas-Fort Worth is until I started seeing who is at the hospital. So I am in very close proximity with people from all over the world, and every single one of them is suffering in some way. And so it’s just not hard to get into a spiritual conversation when those are the elements that they have brought us together.

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