No Easy Answers in Bioethics Podcast

My Experience Living with a Spinal Cord Injury: Kelly-Blake and Van Linden - Episode 22

May 6, 2020 Karen Kelly-Blake photoMark Van Linden photo

In the words of guest Mark Van Linden, “adversity can present itself to anybody at any time.” This episode features a personal narrative of life with a spinal cord injury. Center Associate Professor Dr. Karen Kelly-Blake is joined by Mark Van Linden, MSA, and president of Adversity Solutions LLC. Mr. Van Linden experienced a spinal cord injury in 2009. In conversation with Dr. Kelly-Blake, Mr. Van Linden candidly shares his story, discussing his life before and after his injury, and addressing not just the physical impact, but the mental, emotional, and relational impact of becoming paralyzed at age 39.

Recorded May 1, 2020

Listen now on H-Net

This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: "While We Walk (2004)" by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License.

Related Items

  • This episode contains a mention of suicide. The National Suicide Prevention Lifeline (U.S.) is available 24/7: 1-800-273-8255 or visit suicidepreventionlifeline.org.
  • Graph visualizing the wellnes/outlook of the patient and the family over time - View PDF (courtesy of Mark Van Linden)
  • Listeners with additional questions for Mark Van Linden can reach him at vanlinden.mark @ gmail.com

Episode Transcript

Liz McDaniel: Hello and welcome to another episode of No Easy Answers in Bioethics, the podcast from the Center for Ethics and Humanities in the Life Sciences at the Michigan State University College of Human Medicine. This episode features a personal narrative of life with a spinal cord injury. Center Associate Professor Dr. Karen Kelly-Blake is joined by Mark Van Linden, MSA, and president of Adversity Solutions LLC. Mr. Van Linden experienced a spinal cord injury in 2009. In conversation with Dr. Kelly-Blake, Mr. Van Linden candidly shares his story, discussing his life before and after his injury, and addressing not just the physical impact, but the mental, emotional, and relational impact of becoming paralyzed at age 39.

Mark Van Linden: Okay, well, my name is Mark Van Linden. I’m 50 years old, and I am a T10 paraplegic.

Karen Kelly-Blake: Good afternoon, Mark. I am Dr. Karen Kelly-Blake. I’m an associate professor in the Center for Ethics and the Department of Medicine here at Michigan State University in the College of Human Medicine. We want to thank you so much for joining us today to give us a brief outline of your life and what it means to live with a spinal cord injury. We look forward to having this discussion with you today. So, I leave it to you.

MV: Well thank you. I appreciate the invitation and I always, I’m always encouraged and excited about sharing my experience with other people, for no other reason than just make people aware of how adversity can present itself to anybody at any time. And some of the pitfalls that are associated with that type of adversity, that are really common, but we never hear about ‘em. So, I should start off by just giving you a little bit of, of background of where I came from, of how, because it’s an important part of the story that allows people to understand the fall that happened to me while I was going through my experience of becoming paralyzed.

So, if we, if we go back to my high school days, I was, I’m an only child, and very independent my whole life. I went to a private high school, got a good education. I was college-bound, I played collegiate basketball for Lansing Community College for two years, so I was very competitive. I transferred to Central Michigan University and got a bachelor’s degree in manufacturing. Where I became, after that I became an engineer in the automotive industry. Very successful, I might add. I enjoyed the fast pace of automotive manufacturing. The excitement and the challenge was very conducive to my personality type. And I did that in that industry for a very long time, became a leader, a plant manager. And then in my late, or I’m sorry, my late twenties early thirties I met someone, got married at 32, started a family, and was living the American dream.

My wife and I were both working professionals. We had two daughters. And it seemed like the whole world was in my hand, and I was just taking it by storm. Then at 37, I had an aortic dissection, where the visceral lining from my aorta separated. And I was very lucky because that’s usually called “the widow maker” because it blocks very important arteries off of the aortic artery. And when blood flow is suspended, your organs start to die. And they typically can’t get in there fast enough, and you just don’t make it. But I was lucky because the dissection happened severe enough where the lining completely separated and just wadded up down into my femoral arteries, blocking the blood flow to my legs, but the blood flow to all my organs, it remained. So, there was no mortal danger at, after the dissection, only a morbid danger. So, they got in there and did an emergency bypass where they tapped into my right axial artery and supplied blood to my legs with an 8 millimeter tube. Which was enough to keep my legs alive and functioning, but after I healed it was hard to run, and I couldn’t exert myself or anything like that. But, I simply resolved to the fact that this is how life is going to be for me, and as long as I didn’t want to run or do any extensive exercise with my legs, I was gonna be fine.

Well, I lived like that for two years, and then a routine annual checkup with my vascular surgeon and cardiologist discovered that my abdominal aorta and my thoracic aorta have dilated, or became aneurysmal. And it needed to be repaired. Which I didn’t think was a big deal, honestly, after everything I’d been through. I already had a valve replaced in 1999 and that went, you know, real, real good, uneventful. And then, I had the dissection in 2007, I survived that.

Well, by this time I’m getting a little, I’m getting a little arrogant about these surgeries. And I said, okay, let’s fix this thing. I mean, let’s get it done, put it behind me. And they said, well, Mr. Van Linden, this is a big operation. And I immediately thought, well, does that mean the other ones weren’t? Because they seemed pretty big to me. And they said, well, what we want to do is we want to fix your abdominal aorta and your thoracic aorta in one surgery. And this surgery is going to be anywhere between 14 and 18 hours. And we’re going to repair your entire aorta from the arch all the way down to your femoral arteries. And I looked at it as a plus. That this is going to be a one-and-done and I don’t ever have to worry about it again. But what they were trying to convey to me is that they were going to open my entire thoracic and abdominal cavity, 4 inches at a time, all the way from one end to the other. And the incision is actually like a candy cane incision, where they started behind my shoulder blades, and then they made a spiral cut down around my left rib cage, and then came around the front in my, in the front down by my stomach, to about 4 inches below my belly button. And they did that in 4-to-6-inch increments. They didn’t open it up all in one.

KKB: I have a quick question.

MV: Yeah.

KKB: Mark, so is this, was this standard clinical procedure that they would do both, that they would do the entire repair at one time. Or was is that the severity of your particular disease necessitated that they do it all at once.

MV: Yeah, good question. So, I, I’d failed to mention that I have Marfan syndrome, which affects the elasticity of all of my arteries. And the reason they wanted to do it all at once was if they went to the abdomen and repaired the abdominal aorta like they would a person without Marfan’s, and then they discovered that when they went to go sew to the thoracic aorta at the diaphragm, that tissue of the aorta was not taking the suture because it’s diseased with Marfan’s, the surgery would then become an emergency surgery. On the table. Which is the worst situation. So, they wanted to preempt that risk by having the whole surgery be elective and planned, and repairing all of it in one shot. Because the thoracic aorta was slightly aneurysmal also. Not to the point where they would warrant surgery, but because it was slightly aneurysmal, it said, this isn’t gonna get smaller. And he has Marfan’s. So, we should attack this now. And that’s why they did both the thoracic and the abdominal in one shot.

So, I don’t know my anatomy as well as people in the health care industry, but there are I believe six arteries that come off of the aorta that feed the spinal cord. And Mother Nature doesn’t perfuse all six of those arteries for everyone. Sometimes only five are perfused. Or four of them, but that’s enough to supply the spinal cord with blood and oxygen to keep it alive the entire natural life of, of the person. So when they cut those arteries, and then reattach ‘em to perfuse ‘em, by design you expect that if I have two arteries supplying one part of the spinal cord and I clip one, I still have the other one perfusing while I’m reattaching the one I’ve just clipped, and attaching perfusion to that. They don’t know this for a fact, but they speculate that when they disconnected the arteries perfusing the spinal cord, that maybe they, I only had one artery perfusing naturally. And when they cut one, I had none perfusing until they reattached it and got it on bypass. And that may have been enough to kill the spinal cord at the T10 level.

But, what confuses them about that theory is after the surgery when they reattached everything and I had another CAT scan, all arteries showed perfusion So, if that theory were true, one of those arteries would have not perfused after the surgery, does that make sense? So it’s all speculation, but sometime during that 18 hour surgery, I became paralyzed at the T10 level. And I was in the ICU for two weeks in a coma. I had double kidney failure, pneumonia. I had two blood transfusions. I also had dialysis twice. I was in bad shape and they really expected I wasn’t gonna make it. But I did. And after my two weeks in ICU, I spent another week in acute care, and then they transferred me to Mary Free Bed. Where I spent two months there, and they, where I went through rehabilitation.

The worst part about my rehabilitation was not the physical part. It was the emotional and psychological part. After going through such a traumatic experience physically, you naturally fall into a state of depression. At varying levels depending on the patient. But on top of that I had the psychological impact of realizing I would no longer walk again. And that on top just put me into such an acute level of depression that it was my biggest hurdle. It kept me from my physical therapy, it kept me from learning the things I needed to learn about catheterization and bowel program, and hygiene. All things that were very important to be able to survive and cope with a spinal cord injury, and I was just resistant to all of it.

And that played a huge negative impact on my recovery. That depression lasted a good portion of a year, and it took a toll on me, and my marriage, my relationship with my wife. My entire family. Fortunately, my kids were 2 and 4 at the time. So they really didn’t understand or realize what was happening. But, to all the adults, it was extremely impactful. So, I knew, I was fortunate that I’m educated. And you can imagine how detrimental these things are to people who don’t have the intellectual prowess or education to recognize what’s going on. I was fortunate enough where I could evaluate myself and my family and my relationships and say, this is extremely unhealthy. I don’t know what’s going on, but what I’m witnessing and what I’m observing is toxic. And I have got to fix this. So, I sought the, I sought some help from a psychiatrist, explained to him what was going on, and he said, Mark, it’s just really obvious that you are stuck between living and dying. You, you don’t want to do either, but you feel you have to do one. And you can’t decide, so you are stuck, and you need to make up your mind. You need to pick one and get on with it. And when he said that I was shocked, because he didn’t tell me which one to pick. He just said, pick one and get on with it. [Laughs]

And that really scared me, because I felt like he, for the first time I just got a license from someone to end my life, which is half what I wanted to do. And I wasn’t sure if I had the courage, or maybe lack of, to do it. But he gave me a lot to think about. So, I was downstairs in the waiting room waiting for my bus to come get me to take me home. And that psychiatrist walked by me in the lobby, and he said to me, there’s one other thing I need you to understand that I didn’t tell you upstairs. He said, you don’t know nor will you ever be aware of whose life you’re impacting, and who’s watching you for inspiration. If you quit, someone else may also die because of it. But if you survive, many people’s lives may be impacted in a positive way. But you’ll never know either. Just know that if you make that decision, you’re also making a decision for many other people. And then he turned around and left. And when he left he got in his car and drove away and I’m thinking, who is this guy? What a nut. Because I had never met him before in my life. That was the only hour in my entire life that I’ve ever talked to that man, and I still don’t know his name. So, I had the prescription filled for some, I think it was Cymbalta is what it was called. I took that medicine and the lows weren’t as low anymore. And I was able to do my physical therapy. My outlook changed. My energy came back. My relationship changed with all the adults in my family, and all my friends. And I could tell I started making the turn.

It was probably six months after that I went back to work, and I just hit the ground running, no pun intended. And I haven’t looked back since. So, it’s been 10 years, I had my 10 year anniversary in November, past November. And I’m 50 now, so I had a few milestones in 2019. My 10 year anniversary and I turned 50 years old and, yeah. And I think I’m doing pretty good actually. I have my days. I don’t like being in a wheelchair. I still get mad, I still get angry and frustrated because my brain is what it is, and I am who I am. I still want to be independent, I still want to do all the things I did for the previous 39 years prior to be in paralyzed, but I can’t, and that frustrates me. But all of my responsibilities as a husband, and a father, and an employee, and a citizen, I am, I think anyway, I am fulfilling all of those things as I promised I would. And I think I’m doing a better job than some people who are able bodied are.

KKB: Well, Mark, I know having met you in person, I would have to agree with that assessment. I think in many ways you act as an inspiration, as the doctor told you in the lobby as you were waiting for the bus. That sounds like that was a very impactful encounter with this psychiatrist, whom you still don’t know. Which would offer itself a whole different story apart from this. But I was wondering if you could perhaps speak to the audience about your injury and the pain that you may currently still experience.

MV: Sure.

KKB: And how that impacts your day-to-day living. And also you spoke to the fact that you’re still able to meet your obligations for your family, as an employee, as a citizen, as a father. If you could also speak, if you don’t mind, to what such an injury does to a marital relationship. And how perhaps you have been able to navigate that and come out on a positive side.

MV: Yeah. So, the, addressing the pain. So, with a spinal cord injury, many, but not all, spinal cord patients will experience nerve pain. Also called neuropathy. And this nerve pain, diabetics often get it, it’s like a burning, needle sensation. And for me it’s in my thighs, and in my buttocks. And the longer I spend in the wheelchair throughout the day, or if I’m fatigued, or I don’t feel well. Or sometimes if I’m just stressed, this pain is far worse. And it’s exhausting. Because it’s nonstop, and there is nothing, there is no medication available to make it go away. There’s, there’s therapies that can distract from it, or lessen it a little, but for the most part other than sleeping, it’s just nonstop always there. And impacts any pleasure that you would have doin’ any hobbies or anything recreational. Watching a movie, going out to eat with family and friends. It’s just hard to be pleasant, and it, like for me it makes me grumpy, and I just want to get out of my wheelchair so bad. I just want to be done with whatever I’m doing and go home. So, it can oftentimes make you not want to be social and engaged. And then as a result you get kind of distant from people. Because they stop inviting you because you’re always saying no. You know, like it’s at the end of the day when it, it’s at its worst. So that’s when everybody wants to go out to dinner, and that’s when everybody wants to go out for a beer after work or in the evening. But I’m already spent by then. So that, that’s, that is hard to deal with. But, like I said there’s just really nothing out there. I take Tylenol #4 with codeine, and that’ll often relax me. And when I get relaxed the neuropathy tends to subside a little bit. I’ve tried marijuana gummies, candy. That really doesn’t affect the pain, just acts like a distraction. And when I do that, when I use that I can’t drive, or, or work because I can’t focus. So, that’s not, that hasn’t been really effective for me. For some people it is, but it hasn’t been for me.

So, now to switch gears as far as my relationship goes with my wife. You’d be surprised, maybe not, but it surprised me how much guilt comes with the spinal cord injury. My, my spinal cord injury was a result of a surgery that I had to have to stay alive. If I didn’t have that surgery, I was gonna have a ruptured aneurysm, and I was gonna die. There was just no question about that. So, it’s easy for me to process: I didn’t have a choice, this was something that happened to me, no something I did. But nevertheless, the guilt that I have, having been paralyzed, I feel like I really let my family down. I feel like I’ve disappointed my wife, and that she’s disappointed in me. That maybe she regrets marrying me because I brought this on to the family and to her. And I think about that every day. You can imagine. How, how that would impact a person’s psyche. And even though logically and rationally, I know that that’s not the case. I didn’t do this. But I still can’t get away from it. So, you know, when I go to bed at night that’s the last thing I think of every night is the guilt that I have. The guilt that comes with having brought this burden on to my family. Which sounds horrifically depressing. [Laughs] But it, that’s just a fact of what I deal with.

So, you know, and just a caveat. You can imagine the guilt that spinal cord patients feel who are paralyzed as a result of a motorcycle accident. Or, like for instance I have a buddy who’s paralyzed and has been almost the same amount of time as me. He got paralyzed doing a trick on his dirt bike. So, can you imagine that guy going, playing through his head when he’s having a bad day, that one, had I just not bought that stupid motorcycle, or if I just had not tried to do that dumb trick, I would still be walkin’. Right? I mean, that’s just…

KKB: Yes.

MV: I can’t imagine. Or, or getting into a wreck having been drinking and driving. All that preventable, and, and a better choice. So, and then, the other thing that really bothered me a lot is, that I thought to myself, I’m never going to be able to sexually satisfy my wife again. And, you know, that is one of the biggest reasons people get a divorce. And I just thought for sure that this is never gonna be better. It’s never gonna be what she needs or wants. And that really bothered me. So, after already having been through three surgeries and one paralyzed me, I went and saw a urologist, and I said, hey doctor, here’s my situation. I can’t get an erection because I’m paralyzed at T10. I need help. Whatever you can do, tell me what I need. And he recommended I get an implant. It’s called the AMS 700. I can’t remember the name of the manufacturer off the top of my head. But, it’s a, it’s a penile implant that allows an erection to take place on demand. And, it’s, if your listeners Google it, it’s absolutely [laughs] an amazing piece of equipment. [Laughs] And I’m not bragging, but it [laughs].

KKB: Is that something that your insurance company covered for you?

MV: Everything. They covered every, all of it. It was a, I didn’t pay a red cent.

KKB: Okay.

MV: And, and there wasn’t even a question. When I needed a new wheelchair, I had to go before a board of twelve people and make a in-person presentation just to find a new wheelchair. But when I wanted a penile implant, it happened so fast I was scheduled for surgery two weeks later.

KKB: Oh wow. So that shows you what some of the priorities might be. [Laughs]

MV: Yeah, yeah. Or maybe where the profit margins are. [Laughs]

KKB: [Laughs] Exactly, exactly. Well, Mark, I don’t want to cut you off. I know, but we have a limited time frame for our podcast.

MV: Mm-hmm.

KKB: So if you would, I want you to give us one single nugget that you would like for us to take with us. For those of us a will be listening to this podcast, what is the one thing you would like for them to take away.

MV: Well, for your listeners that are in the med school, or in the health care industry, I think I would like everyone to take away mostly the impact of the emotional and psychological element of a patient with a spinal cord injury. I often hear, I wheel into a restaurant, or I wheel into a store, a grocery store, and I’m pushin’ the cart and I’m doing shopping. People come up to me and say, oh, you’re just so inspirational. Because of what they see me doing physically. But the real story, the real battle, the real fight that goes on daily with a person with a spinal cord injury is emotional and psychological. The perceived quality of life, it is, it can be more debilitating than what the physical portion of the of the injury is. And as a health care provider, any time you have a spinal cord injury patient, you should always ask, pay attention to, and be consciously aware of that element that the, that the patient brings to you. Not just the physical part.

KKB: Well thank you so much, Mark. We appreciate you sharing your story so openly and freely. We hope that this provides an opportunity for our students and other people who will listen to this to understand what it might mean for people that they see in their everyday lives. Although right now we’re not seeing a lot of people out and about, but once that changes that we are able to, that we can take a lesson from what you’ve provided for us today. So again I just want to thank you for your generosity. And I wish you and your family continued familial harmony. Thank you so much, Mark.

MV: Well, thank you. I, and I’m always excited when you invite me to these speaking engagements because you’re always so welcoming, and if any of your listeners have any specific questions, or they want to drill down into a topic that we touched on deeper, they can feel free to reach out to me and contact me. And, and we can discuss anything they like.

KKB: Thank you very much, Mark.

MV: Thank you.

Liz McDaniel: Thank you for joining us today on No Easy Answers in Bioethics. Please visit us online at bioethics.msu.edu for full episode transcripts and other resources related to this episode. A special thank you to H-Net: Humanities and Social Sciences Online for hosting this series. This episode of No Easy Answers in Bioethics was produced and edited by Liz McDaniel in the Center for Ethics. Music is by Antony Raijekov via Free Music Archive.

No Easy Answers in Bioethics Podcast

Why I Left the U.S. for My Surgical Procedure: Fleck and Fluegel - Episode 21

March 10, 2020 Len Fleck photoLarissa Fluegel photo

What would you do if you needed surgery, but seeking care would mean $25,000 or more in medical debt? Would you consider traveling to another country to receive the same surgery at a fraction of that cost? Would you put off seeking care entirely, until it became an emergency situation?

These questions related to access to care, health insurance, and medical tourism are explored in this episode, which features Center for Ethics faculty members Len Fleck and Larissa Fluegel. Dr. Fluegel, a clinician born and raised in the Dominican Republic, shares her personal experience of needing gallbladder surgery, and the reasons why she traveled from Michigan to the Dominican Republic to receive that surgery. It may not be surprising that the main reason was cost. Discussing the healthcare systems in both countries, Drs. Fleck and Fluegel explore the challenges that under- and uninsured individuals in the U.S. face when seeking care.

Listen now on H-Net

This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: "While We Walk (2004)" by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License.

Related Items

Episode Transcript

Liz McDaniel: Hello and welcome to another episode of No Easy Answers in Bioethics, the podcast from the Center for Ethics and Humanities in the Life Sciences at the Michigan State University College of Human Medicine. Featuring a conversation between Center for Ethics faculty members Len Fleck and Larissa Fluegel, this episode tells a story that involves health insurance, access to care, and medical tourism. Dr. Fluegel, a clinician born and raised in the Dominican Republic, shares her personal experience of needing gallbladder surgery, and the reasons why she traveled from Michigan to the Dominican Republic to receive that surgery. It may not be surprising that the main reason was cost. Discussing the healthcare systems in both countries, Drs. Fleck and Fluegel explore the challenges that under- and uninsured individuals in the U.S. face when seeking care.

Len Fleck: Hello everyone. Welcome to our podcast today. I'm Len Fleck, I am the Acting Director of the Center for Ethics and Humanities in the Life Sciences in the College of Human Medicine at Michigan State University. And today we're going to be speaking with Dr. Larissa Fluegel, who is a faculty member also in the College of Human Medicine in Grand Rapids. We're going to be talking about what might sound like a rather odd topic, namely Dr. Fluegel's gallbladder surgery. But as you'll see, there are some very interesting and distinctive policy-relevant features and ethically-relevant features of her surgery. So we're going to get right into that conversation. So, Dr. Fluegel, one of the things that I'm sure many of your friends have asked you about is that you needed gallbladder surgery, and you went to the Dominican Republic to have your gallbladder surgery done. And so I suspect a lot of your friends say to you, why in the world would you do that? We have many fine surgeons here in the U.S. Why would you go to the Dominican Republic to have your gallbladder surgery done?

Larissa Fluegel: That's right Len. When I, I went to the Dominican Republic this past winter earlier this year, and as I came back I shared with some of my peers and some of my students about my experience, as it actually became relevant in some of our discussions that we had in different activities. And I, I realized that though it sounded to me like sort of obvious why I would do that, I realized that it was not so for, for people. So, it got me thinking about the differences between the system, and my motivations, it got me like really meditating on that, and that sorts of issues.

Len Fleck: So what are the features of your situation that motivated you to want to go to the Dominican Republic for your gallbladder surgery?

Larissa Fluegel: So I would say that the main, main issue was an issue of cost, and affordability for me personally.

Len Fleck: Mm-hmm.

Larissa Fluegel: There was no, not a time that I questioned the effectiveness or even the quality of the care that I would receive here, but it was mostly an awareness of cost.

Len Fleck: So what kind of costs are we talking about? What does it cost, for example, to have gallbladder surgery somewhere in the United States, say, in Grand Rapids.

Larissa Fluegel: So, what I realized as I started doing my research is that for me, if I were to pay out of pocket, gallbladder surgery—and this is probably conservative—but it could be more than maybe 24 to 26,000 dollars. That's mostly cost of surgery, and that might not necessarily include peri-operative costs, meaning before or after surgery. And this is also only laparoscopic surgery.

Len Fleck: So if you had a different kind of surgery, if it required making a major incision, then you'd have a longer recovery period, and it would also require a longer period of hospitalization, and so much higher cost than the 24 to 26,000 dollars that you mentioned, right?

Larissa Fluegel: Correct. So, in my particular case, and I would say this would have been an advantage to me which would have kept my cost on the lower tier would be the fact that my situation was uncomplicated. I had what we would call like a cold gallbladder, meaning that there are no like complications with infection or other things that might require me to have a more complex surgery, meaning open surgery, and then that would require higher cost also.

Len Fleck: Were you at all concerned about the quality of care that you were going to receive in the Dominican Republic? And why the Dominican Republic?

Larissa Fluegel: Okay, okay, so those are two questions. So why the Dominican Republic. I am a Dominican national. I was born and raised in the Dominican Republic. I had received cares all my life there growing up, and as a young adult. I also attended medical school there. And I felt fairly familiar with the system. I felt fairly—at least fairly, if not very confident—that I could discern where I could get good care. And so—did I answer why the Dominican Republic.

Len Fleck: Right.

Larissa Fluegel: What was the other question?

Len Fleck: Yeah, what were your, did you have any concerns-

Larissa Fluegel: Concerns.

Len Fleck: -About the quality of care that you were going to receive there.

Larissa Fluegel: Right. So, I was not. I was not concerned. And that's, um, probably have to do with the fact that I had been in the system. I have navigated the system as an, let's say inside, I had a lot of inside information. [Laughs] I knew people. I, the surgeon that I, I felt like I had options and I could choose. And I had a good amount of information and understanding enough of the system to feel confident and comfortable making a decision as to where I was going to get care, and who would provide for my care. And so the person, my surgeon there is someone that I knew from medical school that was highly recommended, mostly word of mouth by also other people, my peers. And also me looking into his, his experience, experience from other patients, and like that. And I also knew the center where I was going. I know the people who own the center. So all of that gave me confidence in making that decision.

Len Fleck: Now we, I'm going to work back to one of our earlier questions. So the cost of having that surgery in the United States would be 24 to 26,000 dollars plus or minus a few extra thousand dollars. What did it actually cost for you to go to the Dominican Republic to have that surgery done, because I'm sure our listeners would want to know that.

Larissa Fluegel: Right. So, it cost me nearly $3000 or so, give and take. If you were to add cost of flight-

Len Fleck: Mm-hmm.

Larissa Fluegel: -Like getting there, and maybe transportation, and accommodations, it would not be no more than $4000 for my trip and surgery.

Len Fleck: So that represents less than 20 percent of the cost of having that same surgery in the United States, right?

Larissa Fluegel: That's correct, yes.

Len Fleck: Here's... in the Dominican Republic, if, if somebody needed gallbladder surgery, would they, would any citizen of the Dominican Republic have access to that surgery, just as you had access to the surgery.

Larissa Fluegel: I would say, yes. They would have access to the surgery. Conditions of care might vary greatly. From one region to the next, geographically speaking, but also whether it takes place on a metropolitan area like the capital city, which is where I was.

Len Fleck: Mm-hmm.

Larissa Fluegel: Versus any other area around the country, and much more if there's a, let's say rural areas may not have that access, people might have to travel a distance to have the same access that I had.

Len Fleck: Are there citizens of the Dominican Republic who don't have health insurance, who in effect then would not have access to needed health care?

Larissa Fluegel: Okay, so this is a little tricky question. So, technically, every single Dominican citizen as well as foreign a citizens that reside legally there, they have the right to access to care, right. And, there, legally, it is established by law that services need to be provided to people. Everybody. Regardless of your insurance situation, employment situation. There is a public health care system, and there is a private health care system. In my case I went through the private, and I paid out of pocket. Within the private there is people who are employed that are also financing their own health care, they pay for insurance, and there is insurance coverage for them as well. Then there's a public system that is made by also contributions of employed persons. But there is also a subsidized part of the public system. And that is meant to ensure access to every citizen. Regardless of their ability to pay. And so we have throughout the country, which is a small country, different regions. We have public institution, financed both by contribution of employed people, but also the government through the Social Security system. Institutions, specific hospitals that are for anybody to access. Now those places are, this is where most residency programs take place. So there is an guarantee of staff, and adequately trained personnel there. Now there's other limitations that might challenge people's ability to access quality of care. Does that make sense?

Len Fleck: Yeah that makes sense. Now one of the things we wanna talk about is a sort of comparison between the U.S. and the Dominican Republic. The Dominican Republic relative to the U.S. is a relatively poor country, but nevertheless they are guaranteeing access to needed health care for everybody in their society. So, a kind of obvious question I have is that if I were either uninsured or under-insured here in the U.S., and I needed gallbladder surgery, what would happen to me? I'm not eligible for Medicaid, I'm not eligible for Medicare. I may not have any private health insurance because my employer doesn't provide me with private health insurance. Or, I might have one of these bare bones insurance policies with very high co-pays and deductibles and so on. And so I would be responsible for, I take it, a very substantial part of the cost of having that surgery.

Larissa Fluegel: Correct. So, under those circumstances of what you're saying, you're not eligible for financing, federal, state, or any assistance, is that right?

Len Fleck: Yes.

Larissa Fluegel: Which is a big chunk of the population, if I understand correctly. So what would happen to you. One of the things, I would say the first thing that you're gonna do is that you're gonna question whether you're gonna seek care. And you might delay care. You can have a relatively uncomplicated gallbladder situation where you just have stones, cholelithiasis. To, if you let it go long enough, it might become complicated, and put you at risk of other serious illnesses. Let's say pancreatitis, sepsis. Definitely you won't be working, so it will put you down, you won't be able to work. You might lose your job.

Len Fleck: Mm-hmm.

Larissa Fluegel: And those aren't just a stretch unintended consequences. But directly related to health care, if you delay care then you have, you are serving a higher risk of morbidity and mortality, right. So you're putting yourself at risk of even death. [Laughs] And then if you do decide to seek care, one option you may have is to do medical tourism, which is sort of what I did, to seek care in a different country. And by doing that you're submitting yourself to other risks that we can expand on. Or you could seek care here which would mean that you will probably incurred in a huge debt, and financial toxicity because you have to figure out a way to pay for this. In my personal, in my particular case, I probably would've spent the next 20 years paying $200 a month [laughs] to afford this. And that's a little bit of a problem considering that I may not have the financial margin to do that, but even if I did, then I'll have no margin if anything else should happen that would require me to need to finance health care again.

Len Fleck: Okay, now, I know nothing at all about—I've never had a gallbladder problem. So I don't know what it feels like, or how, if I were in the situation of being uninsured or under-insured and faced with outrageous costs for having this treated. You've told me a little bit about the risks I might be taking. Do you have any sense of, how long I, do I have any options other than surgery for dealing with my gallbladder, my imagined gallbladder problem?

Larissa Fluegel: Okay. Well I, I take it that the average person that doesn't have medical training will probably at least need to seek some level of care so that they can have the information that you're, like, that we're gonna discuss right now.

Len Fleck: Mm-hmm.

Larissa Fluegel: So for example I knew I had other options. And so that bought me time. So options would be that I could deal with the pain. So, so when a person has gallbladder stones, a lot of us in the general population are walking around with stones in our gallbladders that are giving us no problems. Like we could die of something else and never have issues with our gallbladder and still have stones there. So, but when they become symptomatic, meaning that they reach like a critical mass, I suppose, they start giving you symptoms and the gallbladder stops doing their function. So your gallbladder's no longer there doing what it's is supposed to be doing, and instead it's causing you a lot of pain. Especially when you eat certain foods that, because the gallbladder, the job of that is to store bile, which has to do with the digestion of fats mostly, but other things, it aids in digestion in general. So when it starts to give you problems, that means that you have issues digesting fats. You have what we call gallbladder colic, which is a very, very, very, very painful process. So every time you eat, within 20 minutes, you have a lot of pain. Abdominal pain. Specifically on that area where the gallbladder is. It's to the point that it hurts when you breathe, and you have to literally stop what you're doing and sit down. Take a breath and wait for it to pass. And it can last anywhere from a few minutes to 20 minutes. Every time you eat, basically. Unless you avoid certain foods that would specifically trigger that colic, that will trigger the gallbladder to contract and to function. Is that—following far? [Laughs]

Len Fleck: Yeah. This sounds awful.

Larissa Fluegel: At least is very painful, if it's not complicated. Now, if I manage, like in my case, I put myself on a strict diet. Which is really an unsustainable diet because I was, because I'm not eating fats, that means that I'm not absorbing—first of all, fats are necessary for human functioning. For hormones and brain function and all of that. But they're also necessary for absorbing certain vitamins that are usually soluble in fat. So if I don't eat fats, then I'm missing on those vitamins, and minerals. So I run the risk over time to be malnourished. Which in fact it almost was happening to me, I lost about 12 pounds in those 2 months period between the time that I knew I needed surgery and until I actually got the surgery. So the, the strict diet is only a temporary measure that shouldn't be prolonged or postponed for too long. But that's an option that buys time. So the diet, and then, if you do get colic then you'll have to manage with pain medication. Thankfully in my case the diet was enough, but for a lot of people when the colic starts it is really painful, almost unbearable. So, some people can be fine by taking acetaminophen, you might need to take ibuprofen which is a little more harsher on your body, to the point that some people might need some maybe morphine or opioid treatment.

Len Fleck: Okay. So, if in my imagined situation, I'm not going to the Dominican Republic because I can't speak Spanish. So I would have to go somewhere else. And so, I would have to pick another country. What are the risks I'm taking? How would I know where to go, who to trust? Are these all challenges that I would face? And, I'm speaking I guess as a relatively well-educated sophisticated individual. For the average American, would they have any idea how to go about doing medical tourism? If even that was affordable for them.

Larissa Fluegel: Right. So, I would say it would depend where you would go. I, speaking from the Dominican Republic which is still under development country. So there's risks. Obviously there is no guarantee of the quality of care. There's no minimal care that can be guaranteed across the board. So from one institution to the other, I could run the risk of poor sanitation conditions. I can get an infection through surgery. I could potentially get treated by a person who's not as skilled in laparoscopic surgery. Who can possibly cut the wrong thing, you know, the wrong structure, anatomically speaking. Or, I get the wrong medication. So, quality of care is a risk. Because there's no guarantee. And since you're not native, you're not there to know what center is good or other—the other thing is that you would think that you might be able to research and get information about the quality of care of different, you know, potential candidates for your surgery. The quality of the data that you may find is also there's no guarantee. Because there's, there are no consistent safe tracking systems that can guarantee to you that the data that you're getting is also reliable.

Len Fleck: Okay. So, I think about this from an economic point of view. I look inside my wallet and I say, I can't even afford the 4000 dollars, 5000 dollars it might cost me between travel and the actual costs of surgery somewhere else in the world. And, and then I remember, oh, here in the United States we have a law called EMTALA, the Emergency Medical Treatment and Labor Act, which says that when I have an emergency condition, I have to be treated at the hospital. So what I imagine is, I guess I'll just wait until my gallbladder is just really, really bad, and is going to do something that could be a threat to my life. And then I'm going to go to the hospital, and am I going to get my care for free then? Because it is an emergency treatment? And, I can actually answer my own question for you. [Laughs]

Larissa Fluegel: [Laughs]

Len Fleck: Which is, no. I would still be responsible for paying for the care that I got. And it's likely to cost me a lot more, if I can afford anything at all, or else the hospital is going to absorb the cost, you'd just have to wait and see what would happen. But I am, even under EMTALA, all, all EMTALA says is they have to treat me. They cannot turn me away because it is an emergency situation. But then I would still be responsible for the cost of that care. Maybe I'd be forced into bankruptcy or something like that. I could lose my home. Lots of other bad things like that could happen to me. How can that happen in a rich country like the U.S. when that isn't going to happen in the Dominican Republic? I mean that's sort of the awful question that we're faced with here.

Larissa Fluegel: That's right Len. So, the fact that I have the right to receive care does that mean it's not gonna cost me or someone else. Even if I have insurance, I would still have to put in a certain amount of money, what could be maybe 15,000 dollars, for me to get that gallbladder surgery in a timely manner.

Len Fleck: Mm-hmm.

Larissa Fluegel: With the, through the insurance system. So, your question, how can that happen in a country of the United States? That's a, that's a loaded question. [Laughs]

Len Fleck: [Laughs] Obviously.

Larissa Fluegel: There's so many factors playing into that. So, I'm not sure. Would you like to start that debate?

Len Fleck: Well we've had that debate for decades now. And apparently we're just not willing to come to some kind of fair and reasonable resolution. That is congruent with what we see as the fundamental values that define what the United States is about. We're probably not going to be able to resolve that over the next couple minutes, but it is at least worth calling attention to the fact that there is this discrepancy in access to care in the United States. And that it can have awful consequences for individuals who are under-insured or uninsured, and have no otherwise personal ability to pay for care that may be needed. And needed in a strong sense. Where, as you pointed out, if you don't have a gallbladder problem addressed, there is the risk of serious morbidity and a risk of mortality, a risk of premature death if that's not adequately treated. With that, I think we have to conclude this particular podcast. We thank all of our listeners for tuning in. We welcome questions that you may have regarding this podcast. Thank you for your attention.

Larissa Fluegel: Thank you, Len.

Len Fleck: Thank you, Larissa.

Liz McDaniel: Thank you for joining us today on No Easy Answers in Bioethics. Please visit us online at bioethics.msu.edu for full episode transcripts and other resources related to this episode. A special thank you to H-Net: Humanities and Social Sciences Online for hosting this series. This episode of No Easy Answers in Bioethics was produced and edited by Liz McDaniel in the Center for Ethics. Music is by Antony Raijekov via Free Music Archive.

No Easy Answers in Bioethics Podcast

Considering Consciousness in Neuroscience Research: Cabrera and Reimers - Episode 19

January 7, 2020 Laura Cabrera photoMark Reimers photo

What can neuroscience tell us about human consciousness, the developing brains of babies, or lab-grown brain-like tissue? How do we define “consciousness” when it is a complex, much-debated topic? In this episode, Michigan State University researchers Dr. Laura Cabrera, Assistant Professor in the Center for Ethics, and Dr. Mark Reimers, Associate Professor in the Neuroscience Program, discuss the many layers of consciousness. Examining recent research on lab-grown brain organoids, they discuss moral and ethical considerations of such research, including how future technologies could challenge our definitions of consciousness and moral agency. They distinguish consciousness from intelligence, also discussing artificial intelligence.

Listen now on H-Net

This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: "While We Walk (2004)" by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License.

Related Items

  • Trujillo CA, Gao R, Negraes PD, et al. Nested oscillatory dynamics in cortical organoids model early human brain network development. bioRxiv. 2018:358622. DOI: 10.1101/358622.
  • Sawai T, Sakaguchi H, Thomas E, Takahashi J, Fujita M. The Ethics of Cerebral Organoid Research: Being Conscious of Consciousness. Stem Cell Reports. 2019;13(3): 440-447. DOI: 10.1016/j.stemcr.2019.08.003.

Episode Transcript

Liz McDaniel: Hello and welcome to another episode of No Easy Answers in Bioethics, the podcast from the Center for Ethics and Humanities in the Life Sciences at the Michigan State University College of Human Medicine. This episode features Center for Ethics Assistant Professor Dr. Laura Cabrera, and Dr. Mark Reimers, Associate Professor in the Neuroscience Program in MSU’s College of Natural Science. Their conversation focuses on the complex topic of consciousness and the brain, including recent research on lab-grown brain organoids. They discuss moral and ethical considerations of such research, including how future technologies could challenge our definitions of consciousness and moral agency.

Laura Cabrera: Welcome everyone. Today—I'm Dr. Laura Cabrera, I'm an assistant professor of neuroethics at the Center for Ethics and Humanities in the Life Sciences. And today I have Dr. Mark Reimers once again joining me for this podcast. Dr. Reimers is an associate professor of neuroscience and biomedical engineering at the Institute for Quantitative Health, and for those of you that might have listened to the, one of the previous podcasts where Mark and I talk about other interesting issues, for this one we're going to talk about consciousness and the brain. And again, the intersection kind of brings a lot of the conversations that Dr. Reimers and I have is the intersection of neuroscience, ethical and philosophical implications of that. And what better topic than consciousness, right? So that, consciousness has been one of the most debated topics in philosophy and neuroscience. So, to start, Dr. Reimers, what can neuroscience tell us about consciousness?

Mark Reimers: Thanks Laura. Well, to be frank neuroscience can't tell us a lot of what we would like to know about consciousness. But it can tell us something, and that's more than it could tell us two, you know, two decades ago. So I think there's something to be, to be proud of. Roughly speaking, we use the word "consciousness" in many different senses. And there's not a single neuroscience theory to explain all of those senses. There's not, as far as I can tell, a real singular kind of consciousness that explains all of the ways we use it in everyday life.

LC: Mm-hmm.

MR: That being said, I think we can say something about conscious awareness, although we can't really say something meaningful about perhaps higher consciousness or conscious deliberation, or at least we can say less about those. But let's talk about conscious awareness. What do we mean by that? We mean that you've had an experience, and you know that you've had the experience. You can talk about the experience, you can tell us that you've had the experience. As opposed to having an experience unconsciously when the same things may have happened to you but you're completely oblivious.

LC: Mm-hmm.

MR: And we can certainly you know talk about those kinds of things in many circumstances. But the way that that's measured experimentally is if you give a person a very brief sound or a very brief image, and then immediately follow it with some other sound or image that lasts for longer, and then the person may or may not be able to report the first sound or image. May have no memory of the fist, which may only last 100 milliseconds or 50 milliseconds or 30 milliseconds.

LC: Mm-hmm.

MR: So very very briefly. And if they are able to report it, then we can measure, we can look at what is different about their brain activity compared to when they had exactly the same very brief exposure but they can't report it.

LC: Mm-hmm.

MR: They think nothing's happened. And very roughly speaking what we can see, and this is not in anything that I've done but this is work by a number of researchers, particularly I would mention Stan Dehaene in Paris, that, where they show that there's a sort of recurrence of activity. That the sensory processing looks very similar in both cases in the sensory areas of the brain, but what seems to happen is about 200 milliseconds after the sensory activity, there seems to be a resurgence of prefrontal activity, particularly in the medial areas, which then seems to trigger a recurrence of the sensory activity about 3 or 400 milliseconds after the first sort of wave of activity reflecting purely the sensory processing. And there and then the prefrontal areas and the sensory areas sort of continue in a dialogue for perhaps half a second. And they also engage several other areas of the brain particularly the hippocampus. So it seems likely then that what we experience as a conscious experience is something that reflects a conversation between several different brain areas and the areas that have actually taken in the sensations that we think of as the experience.

LC: So this, I mean this is very interesting and I guess it really touches in that very important point about, you know, what constitutes consciousness. And I guess a recent example maybe you know might be interesting for the audience to, to hear about if they haven't heard about but at least in terms of consciousness is that a recent paper in the journal 'Cell' talk about these cortical organoids, basically these three-dimensional blobs of brain-like tissue created from induced pluripotent stem cells. So you would think that, you know, when is a line between when this brain-like tissue might start developing something that might be this type of conversation between different areas. Then we can call this organoid is consciousness. So in the study they reported that, you know, as the organoid age, like 2 months, for example, they started to notice certain networks events or coordinated firings of many neurons. So what does that mean? Does that mean that organoids like that if we live them for long enough, will they, can they become conscious?

MR: Well Laura, that's a very good newspaper headline- [laughs]

LC: [Laughs]

MR: But it's not I think very, you know, is not really a big worry at the moment. So first of all, you know we talk about brain waves or synchronized electrical activity, and we can apply that to all kinds of scales. So when, you know, a person's having an epileptic seizure, they're having, yes, a brain wave and it's synchronized activity. But it's not consciousness, it's not thought at all. Or if we are looking at a very early infant's brain, let's say in the womb, the fetus is having, you know, coordinated brain activity, and so does a rat fetus, and those are important for wiring up the early stages of development. But again there's no, no experiences happening. So the waves of activity that they were describing in this paper are actually happening at a frequency of about once per second. Which seems fast to our storytelling minds, but is actually about 50 times slower than the interesting things happen in the brain.

LC: Mm-hmm.

MR: So if we wanted to look at actual activity that's sort of a signature of the brain at work, or processing or engaging with the world, then we're looking at oscillations that might be on the order of 30 or 40 or 50 oscillations or cycles per second. And the time scales there are in the tens of milliseconds rather than in the seconds. The coordinated activity that they refer to is what we call in actual brains a Delta rhythm or a Delta wave, and that's reflecting a sort of biochemical events where the membrane potential of lots of cells sort of simultaneously, and they're communicating with each other on a cellular level, goes down or up. And so that makes the cells excitable for a while or less excitable for a while. And this is the sort of thing that happens when you're deeply asleep. You will have these big oscillations in amplitude, all the cells simultaneously where they're all becoming very quiet or they're all becoming more arousable. Doesn't mean that they are in fact active.

LC: Mm-hmm.

MR: So those are what's being reported there if you look at the, pictures in the data that they actually report there is no evidence of any faster activity that would be more characteristic of a brain at work.

LC: So now you talk at the very beginning of this answer about you know, like, fetuses.

MR: Mm-hmm.

LC: And so, at some point in the paper they talk about, you know, that they, this activity that resembles the brain activity of premature babies. I know that's different from a fetus, but this raises two question for me. One is, when do we know that babies, not fetuses, are conscious.

MR: Okay. Do you want me to answer that-

LC: Yeah.

MR: -And then come to the second? Sure. So, we don't know is the short answer. But the evidence we have suggests, and this is again work done partly by Stan Dehaene but more by his wife. And they showed that very early infants basically don't have that kind of distinction. They don't have any evidence of prefrontal, rapid prefrontal and sensory area of communication. But that particularly over the first year and particularly after 9 months when you start getting myelinated connections between the prefrontal cortex and the rest of the brain, and a myelinated connection means that the messages can be sent much more quickly, and so there's, you know, enough time for a message to be sent and to be returned before the, you know, that brain region forgets what it was talking about to begin with. So when that, when that rapid communications available, then you start seeing that signature of brain activity that is associated with consciousness. Not only a sensory impression but also a prefrontal activity, and then a resurgence of the sensory areas in activity in a way and a continued conversation between these areas. So that seems to, you know, that signature seems to, it's not an all or nothing thing. It doesn't sort of switch on right at 9 months, but it seems to, you know, steeply increase, you know, after 9 months and really continually increases over early childhood.

LC: And so this second related question is that, you know, consciousness it has been postulated that it's an emergent property of brains. And so you mentioned that this point we shouldn't really worry about organoids being conscious, but, you know, if we with time, you know, develop ways to keep these organoids alive and they can start developing myelination. So do you think in the future we could get to a point where these organoids might develop some sort of more what we call consciousness?

MR: Well I think it's always risky to say something can never happen in the distant future.

LC: Mm-hmm.

MR: Such predictions have been wrong again and again. However, I think that there is perhaps a fundamental common mistake that people make when they say even something which, which you and I would agree, consciousness is an emergent property, and most people would say, "of the brain." I mean what else could it be? Except that I think that what the what else is all of the structure of the input that's coming into that central nervous system from the world. I don't really believe that brains in vats, put in vats their whole lives, will attain much functionality. Our brains have evolved to deal with the kinds of sensory inputs and motor outputs that engage us with the real world. And I don't think that without those, that they will attain anything like what we might call intelligence much less consciousness.

LC: So now this raises yet another question because we've been talking about human consciousness. But I guess at least some of might see in other animals that they're conscious of something. So what can you tell us about animal consciousness?

MR: Again. not a whole lot. [Laughs]

LC: [Laughs]

MR: So the kinds of experiments that, again, Stan Dehaene and others have done with, you know, recording brain activity in response to stimuli and then having the animals—again animals don't tell you stories about what they've experienced but they can behave and make decisions in ways that are conditional on what, at least, we say they think they've experienced. And that's not always the same as what's actually happened. And in those kinds of experiments it seems that there's something similar to what we see in human beings. That is there has to be some sort of prefrontal engagement with the sensory input and then reactivation of those sensory areas. And we don't know if they're reactivating exactly the same cells, just broadly the same areas. And in order for an animal sort of to act on or make a clear decision about, about something that we would think of as like reporting or like being able to say that you've had an experience. So it seems at least for conscious awareness, and again I've said that that's only one sense in which we use the word consciousness, but at least for that kind of conscious awareness it seems that that's a more continuous property. And I don't expect that you know if you could give chimpanzees a voice box that they would suddenly start telling you about their experience, because I think there's many other kinds of social interactions that, that are important for consciousness that chimpanzees don't often engage in.

LC: So, what do you think are the ethical implications of working with brain organoids if we are unsure how consciousness emerges. I know that you mention that you know you think that they need a different type of input that they getting. But also I think it's problematic in a way that we don't have a clear line of defining when a certain level of consciousness gives rise to, you know, moral considerations. And I think maybe if we don't think about brain organoids because maybe that's, you know, a question that is already we know the answer. They're never going to be like a moral, an ethical problem there. This gives to pace to start thinking about babies because, you know, there is a lot of medical decisions—

MR: Mm-hmm.

LC: That we make where we really do need to think about, well, when does a certain level of consciousness become the matter of a moral problem.

MR: I think that that's an important question, Laura. My sense is that if we're going to... if we're going to live with the kind of technology that we're inventing, we'll need to, we'll need some way of formalizing the kinds of gradations of moral agency and consciousness. Right now under the American and most Western legal systems, you know, agency is essentially a binary yes or no decision. Once you're over 18 you're considered responsible. If you're under 18, maybe not, for many things. So, I think that we can't accommodate all of the sort of possibilities that are even arising now, much less that will arise with these new technologies if we're committed to a yes or no version of moral agency or consciousness. So I think we will have to rethink those things. but I think it's going to make for some very difficult decisions at least in terms of the kinds of absolutes and legal hard lines that we've been in the habit of working with.

LC: So I guess this gets, again, we're talking about different technologies, and so moving from brain organoids to start to think about things like artificial intelligence. And so, I don't know if you've seen the movie 'Ex Machina' where they clearly that's a theme that they try to explore. And so I guess the question here is do you think that artificial intelligence systems can be some, conscious? Will they be a different type of consciousness than human consciousness, and what might be the implications of that?

MR: So Laura again I would hesitate to say that something can, you know, can never happen, a broad class of things can never happen. I think that if... if we could see evidence of something closely analogous to the kind of sort of reactivation that is a hallmark of at least conscious awareness, then we might have a case for saying that these machines could be consciously aware. I'm not sure that that would be enough, but it would be at least a necessary condition, which I'm not aware that any current artificial intelligence actually exhibits.

LC: Mm-hmm.

MR: And I think that, you know, we mean so much more by consciousness, and, and in particular sort of social obligation and awareness that, much more than just awareness of particular sensation. And it's hard to know what would the analog of that look like. We don't even know what that really looks like in the brain of human beings, much less what it an analog might look like in a machine. So I wouldn't rule it out, but I don't see it becoming, you know, a moral issue any time in the foreseeable future. You know, that doesn't mean that artificial intelligence can't be already very intelligent, and perhaps we have other kinds of moral issues to deal with artificial intelligence.

LC: So I guess one thing that others have tried to do, and I mean they touch a little bit on the movie was, you know, the Turing test. So a test that was developed to try to see you know how, if it was a machine or it was a human. And then that test was not enough to test this artificial intelligent being of the movie. So but do you think that we need that different type of, if we were to develop artificial intelligence that was, kind of, that was hard to distinguish between a human and a machine, that the Turing test would be relevant? Or, you know, when are we also not like just things that receive input and output without really consciously knowing what we're doing? I don't know if it's clear my question but...

MR: Well I know we've talked about the Chinese Room analogy, and maybe that's what you're alluding to here?

LC: Um, yeah that's partly what, I wanted to integrate those, those two things.

MR: So, you know, Alan Turing who was, you know, a mathematical genius but socially rather inept, was, you know, trying to imagine, you know, as a first, you know, first attempt at how you might, how you might construct an artificial intelligence that could at least pass minimally for a human being. And I think that in those conditions it's pretty much been met. I mean we, you know, when you talk to, you know, Siri. There are hundreds of thousands if not millions of people in China who regularly talk to a completely automated therapist, and they say that, [laughs] so they keep coming back. So obviously many aspects of human conversation can be effectively mimicked on a low bandwidth line like a cell phone. I don't think that we should take, you know, the Turing test as sort of the, the absolute, you know, boundary for, you know, what, whether something is actually artificially intelligent. And I would think that it's unlikely that human intelligence is the only kind of model. There might well be other kinds of intelligences, some of which machines, only machines may exhibit, that might be quite distinctive and not even be recognizable, that wouldn't pass a Turing test but might be quite formidable intelligences on their own. I'm not sure how we would define those.

LC: And I guess this raises an important distinction. So one thing would be to say that something is intelligent, that develops some form of intelligence, versus something is conscious. Because you might be, you know, having passed all your tests, and people might think how intelligent someone might be. But you might be just really memorizing things without really being aware of what you are learning, or aware of why things happen in a certain way.

MR: Well what you've just alluded to is the major problem for undergraduate education in mathematics. [Laughs]

LC: [Laughs]

MR: But yes. I, and I think that one, you know, people casually identify intelligence with consciousness, and I don't think they're really necessarily the same thing at all. And I would like, you know, people to take more account of the sort of social nature of consciousness that we, you know, a lot of what goes through our minds when we're, you know, quiet, at least as far as our brain activity can, can show is, you know, thoughts about, you know, related to what other people think about us. You know we're compulsive about you know how our social standing is, and we're very motivated, we will risk our lives in many cases. How many hundreds of people have plunged to their deaths getting the perfect selfie.

LC: [Laughs]

MR: [Laughs] You know which is a great form of social status, but, you know, it's very risky. [Laughs] And so, you know, the, the compulsion that, that we feel about how other people view us is I think unusual in the animal kingdom, and is an aspect of consciousness that is poorly studied and, and very poorly understood. And so that's, you know, the original sense of the word, you know, "consciousness" as a word is only about 400 years old. And it comes from a Latin legal term "conscientia," which is sort of "witness who knew the same things as" you know, the person under investigation, study. And the early uses of the word are entirely in the sense of what we would now call "conscience." That is, you know, you're aware of how other people would view you if you were on trial for an act that you've done. It's only in the last century that this sort of cognitive sense of the word "consciousness" has proliferated and dominated the sense. So that we think that's the, the only sense of the word right now. But it really does have to do with, you know, deep engagement with how other people would view and judge your actions.

LC: Well, this is all the time we have for now, but this is definitely a good point to end this conversation, and we'll leave our audience with this thought that, you know, consciousness has more than one layer, and a lot of gradation. So thank you again Mark for joining us today. Hope we have you again for more interesting conversations.

MR: Well thank you Laura.

LM: Thank you for joining us today on No Easy Answers in Bioethics. Please visit us online at bioethics.msu.edu for full episode transcripts and other resources related to this episode. A special thank you to H-Net: Humanities and Social Sciences Online for hosting this series. This episode of No Easy Answers in Bioethics was produced and edited by Liz McDaniel in the Center for Ethics. Music is by Antony Raijekov via Free Music Archive.

No Easy Answers in Bioethics Podcast

Shared Decision-Making in Colorectal Cancer Screening: Jimbo and Kelly-Blake - Episode 20

February 4, 2020 Masahito Jimbo photoKaren Kelly-Blake photo

This episode features guests Dr. Karen Kelly-Blake, Associate Professor in the Center for Ethics and Humanities in the Life Sciences, and Dr. Masahito Jimbo, Professor in the Department of Family Medicine at University of Michigan Medical School. Drs. Kelly-Blake and Jimbo discuss their NIH-funded study known by the acronym DATES—Decision Aid to Technologically Enhance Shared Decision Making—which addressed shared decision-making, decision aids, and patient-physician communication regarding colorectal cancer screening. The two researchers provide insight into the study and its results, also reflecting on what the process of shared decision-making means to them in the present day.

Listen now on H-Net

This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: "While We Walk (2004)" by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License.

Related Items

  • Jimbo M, Sheinfeld Gorin S, Kelly-Blake K. Shared Decision Making’s Consequences. Health Affairs. 2020;39(3):537-537. DOI: 10.1377/hlthaff.2019.01783.
  • Jimbo M, Sen A, Plegue MA, Hawley S, Kelly-Blake K, Rapai M, Zhang M, Zhang Y, Xie X, Ruffin MT 4th. Interactivity in a Decision Aid: Findings From a Decision Aid to Technologically Enhance Shared Decision Making RCT. American Journal of Preventive Medicine. July 2019;57(1):77-86. DOI: 10.1016/j.amepre.2019.03.004.
  • Jimbo M, Sen A, Plegue M, Hawley S, Kelly-Blake K, Rapai M, Zhang M, Zhang Y, Ruffin IV M. Correlates of patient intent and preference on colorectal cancer screening. American Journal of Preventive Medicine. April 2017;52(4):443-450. DOI: 10.1016/j.amepre.2016.11.026.
  • Shultz CG, Jimbo M. Decision aid use in primary care: an overview and theory-based framework. Family Medicine. October 2015;47(9):679-692. PMID: 26473560.
  • Jimbo M, Kelly-Blake K, Sen A, Hawley S, Ruffin IV M. Decision Aid to Technologically Enhance Shared Decision Making (DATES): study protocol for a randomized controlled trial. Trials. 2013 14:381. DOI: 10.1186/1745-6215-14-381.
  • Jimbo M, Shultz CG, Nease DE, Fetters MD, Power D, Ruffin MT. Perceived barriers and facilitators of using a web-based interactive decision aid for colorectal cancer screening in community practice settings: findings from focus groups with primary care clinicians and medical office staff. Journal of Medical Internet Research. 2013;15(12):e286. DOI: 10.2196/jmir.2914.
  • Jimbo M, Rana GK, Hawley S, Holmes-Rovner M, Kelly-Blake K, Nease DE, Jr, Ruffin MT IV. What is lacking in current decision aids on cancer screening? CA: A Cancer Journal for Clinicians. 2013; 63:193-214. PMCID: PMC3644368. NIHMSID: NIHMS438825. DOI: 10.3322/caac.21180.

Episode Transcript

Liz McDaniel: Hello and welcome to another episode of No Easy Answers in Bioethics, the podcast from the Center for Ethics and Humanities in the Life Sciences at the Michigan State University College of Human Medicine. This episode features guests Dr. Karen Kelly-Blake, Associate Professor here in the Center, and Dr. Masahito Jimbo, Professor in the Department of Family Medicine at University of Michigan Medical School. Drs. Kelly-Blake and Jimbo discuss their NIH-funded study known as DATES, which addressed shared decision-making, decision aids, and patient-physician communication regarding colorectal cancer screening. The two researchers provide insight into the study and its results, also reflecting on what the process of shared decision-making means to them in the present day.

Karen Kelly-Blake: So hello, I am Dr. Karen Kelly Blake, Associate Professor in the Center for Ethics and the Department of Medicine here in the College of Human Medicine.

Masahito Jimbo: Hello I'm Dr. Masahito or "Mas" Jimbo. I'm a professor of family medicine and urology at University of Michigan. I'm also the chief of the university family medicine inpatient service, and director of faculty development for the department.

KKB: Well welcome Mas, and thank you so much for joining me today. We are going to discuss our research collaboration. You and I have been working together for a number of years in the area of shared decision-making.

MJ: Mm-hmm.

KKB: And most recently, we have completed a project that goes by the acronym of DATES. If you would, tell our audience what DATES is, and sort of how you came about thinking about that and the rationale for the project.

MJ: Sure. So just a, briefly about my background, I'm bicultural, I'm bilingual, I'm originally from Japan but grew up in the United States. So communication, how to effectively communicate has always been an interest of mine. And since I became a family physician, you know, that interest gravitated toward patient-physician communication. And what can we do to improve that, because I do feel that improving the communication between the patients and their providers or clinicians would lead to not just better agreement between the patient and their physician, but also, you know, better health outcomes through better adherence to whatever testing or other treatment that's recommended by the physician. So my project the DATES or it's called, Decision Aid to Technologically Enhance Shared Decision Making. This came up from my, from these interests. One was regarding patient-physician communication. And the other was I was, I was always interested in cancer screening. And it kind of came about because it kind of became a nice interface between communication and health outcomes. Because when I was doing some research into Japanese healthcare when I was doing my Master of Public Health training at University of North Carolina Chapel Hill, I noted that the, although Japan has one of the highest health, you know, one of the best health outcomes in the world in terms of longevity and neonatal death rates and whatnot, and having a universal health insurance and very low illiteracy, and very developed public health infrastructure, their cancer screening, for example, cervical cancer, breast cancer, colorectal cancer, and in case of Japan, stomach cancer, screening rates were very low, like in the 20 to 30 percent.

KKB: Mm.

MJ: United States with, you know, despite all the problems we have, you know, the cervical cancer screening rate is now about 80 percent, breast cancer is 70 percent, and colorectal cancer is also above 60 percent approaching 70 percent. So I really started to wonder why is this discrepancy despite all the infrastructure and the, you know, that's available. And that's how I got really interested in how does not just a culture but most effectiveness of communication relate to these changes. And then once I started to think about what I could do to contribute to this research, I turned towards colorectal cancer screening because it is the cancer screening that is universally recommended to men and women.

KKB: Mm-hmm.

MJ: Of average risk at ages, you know, 50 years and over, and if you have higher risk such as positive family history you start even earlier. And it was, in the United States, and other countries also, but compared to, for example, breast and cervical cancer screening, it still suffered from lower screen rates. And then I was looking into, so, what could be an effective way that to, to help patients and physician communicate about the screening issue, and then, you know, lead to better decision-making and satisfaction. And, obviously better screening adherence.

KKB: Mm-hmm.

MJ: And colorectal cancer, not only was it universally recommend screening test for a, you know, for a common cancer, it was also unique in that for average risk patients it had more than one screening test that is felt to be equally viable. You know, and typically it will be a stool blood test once, once a year. Or endoscopic screening. You know, and most commonly colonoscopy every 10 years. Although there are other modalities like flexible sigmoidoscopy, and barium enema or CT colonography, those modalities are used much less commonly. So it's usually stool blood test or colonoscopy. But the important issue here is there are more than one test option available, let's say as opposed to breast cancer screening which is mammogram.

KKB: Mm-hmm.

MJ: And cervical cancer screening, which is a little bit more complicated these days, but, you know, it was pretty much like a Pap smear. And now you know HPV testing as well. But, so I focused on the colorectal cancer screening and I wanted to see, so, with the, not just whether the decision to be screened or not, but then the decision to which test you choose if you are average risk. Of course if you're at increased risk you have to do colonoscopy. What effective communication would occur between the physician and the patient to, you know, maximize the patient understanding, clarify the patient's choice regarding which test that they would like to take, and ultimately lead to they're actually undergoing the screening test, whichever the one that they chose. And, you know, another thing that I know from being a family physician is that we, we have multiple things to deal with in a visit. You know, for example in this, you know, study that I'm going about to explain a little bit more, we did find out from over 500 transcripts of the patient-physician visits that, you know, physicians and patients may address anywhere from as few as 3 to maybe more than 20 issues.

KKB: Yes.

MJ: Over their visit. So it's, you know, it's very difficult for physicians to explain everything about, you know, colorectal cancer screening, even though it is an important screening, in a course of a visit which can be typically limited to 15 to 20 minutes. And also we know that the physicians, we physicians aren't necessarily that skilled regarding this concept of shared decision-making where, you know, physicians, we bring our own experience, values, and expertise, and the patients bring their own experience and values. And we discuss these issues together to come out with an option that best matches the patient's preference and values. And this is shared decision-making, it's felt to be an important way to communicate when there's more than one option available in either a test or treatment. So, I focused on that, and I also focused on a tool called decision aid. Which can be web based, which can be paper, which can be interactive or not, and decision aid is basically a tool to help patients understand better what the choices are, what the pros and cons are. And help them, you know, increase their knowledge about them but also clarify their preference about the particular option that they need to choose from.
So in my trial, which was funded by the National Cancer Institute, and which Karen, you were a co-investigator, we did a comparative effectiveness trial. Basically, I think from the prior studies we did feel that the decision aid has already shown some evidence in increasing the colorectal cancer screening rate. What I wanted to see was, can a decision aid that's interactive, in that it's tailored towards patient's risk and the patient's preference, so it's kind of a more super-duper type of decision aid. Can that bring about a better outcome compared to more of a standard decision aid. Where, you know, it has everything in place similar to the interactive one, but the patient doesn't really, can't go through an interactive tool to determine whether they are at increased risk of colorectal cancer screening, or to determine what kind of values they have that which gravitate toward one test or the other. Namely stool blood test or colonoscopy. So we did this trial in southeast Michigan. We worked with three university primary care practices, and 12 private primary care practices. You know, ranging in size from solo practices to group practice. Total over 50 physicians involved in the study. And then we basically had these patients who were already established with each practice randomized into this interactive decision aid, or to this otherwise, non-interactive but otherwise comparable decision aid. And we had about 300 patients per each arm, to then, you know, look at multiple time points to collect data. Just before they are randomized, right after they undergo through the decision aid. Then this, by the way this decision aid was administered right before the patients--

KKB: Mm-hmm.

MJ: --Actually came to the physician's office for their routine visit. Either a checkup or a chronic care visit.

KKB: And Mas, if I could stop you right there.

MJ: Sure.

KKB: We should also let people know, at that point where they engaged with the decision aid, they were also given a summary of what they chose after going through that decision aid, and that was to be a prompt for the physician and the patient to have a discussion about that screening decision once they entered the clinical visit room.

MJ: Right. Good point, because we, although this decision aid was targeting the patients by using this, this tailored summary sheet which actually summarized the patient's risk and the preference and what the patients ultimately chose. The physicians could be prompted or activated for a meaningful shared decision-making discussion as well. Yes, thank you for reminding me. And, you know, after they underwent the decision aid, they underwent another survey, then they saw their physician, which visit was completely audio recorded, consented of course. And then after the visit the patient received another survey. And that was it for the patients for that day. And then 6 months after the visit we reviewed, audited the chart to see whether they had undergone colorectal cancer screening and whether that testing matched the patient's preferred choice at the time of the visit. So that was the gist of the study.

KKB: Mm-hmm. And so, you and I labored through over 500 transcripts. [Laughs]

MJ: Yes we did.

KKB: To measure shared decision-making. And lo and behold Mas, what did we find?

MJ: Yeah, so, you know...

KKB: [Laughs]

MJ: Yes, you know, first of all the target was 600 patients, I think we hit the target of 585 and we thought that was fine.

KKB: Yeah. [Laughs]

MJ: The study was actually powered to, you know, detect the difference at about 450. And then, you know, of course not all transcripts were, you know, readable or useful.

KKB: Correct.

MJ: But we were able to get about 550 transcripts. But, what we did notice was that, well number one, it didn't matter whether the decision aid was tailored or not. You know, whether the decision was tailored or standard, it basically led to the same rate of colorectal cancer screening in the one year about, 6 months about 40 percent. We were, although we didn't have a usual care group, we were fortunate enough to have a group that we call quasi-usual care. These were patients matched demographically but didn't participate in the study. And we were able to obtain that for the 3 university practices because I was an employee and I was able to obtain the data through the IRB. And that care group without any decision aid it was 18 percent. So we know that the decision aid did have an impact. But, again, if the decision aid was done, done in an easy, you know, done in an easy to weigh method. It didn't have to be interactive. It didn't have to really help the, you know, help to tailor the patient's risk or the preference. The patients were able to kind of figure out, that out on their own I think. And it would come out with similar knowledge, similar positive attitude toward colorectal cancer screening, similar preference or clarification preference regarding which test they want to use, and ultimately similar screening rates for colorectal cancer. And we also noticed that there is really no difference in shared decision-making.

KKB: [Laughs]

MJ: Between either decision aid.

KKB: Yes.

MJ: And also, we looked further into, you know, whether the shared decision-making impacted the, you know, their intent to get screened or further clarified preference regarding a test option, or whether it actually lead to higher colorectal cancer screening rate. And so we basically pulled the both arms and we just simply looked at the correlation between these end points and the degree of shared decision-making that occurred during the visit as measured by this tool called Option 12. Which, a developer was a consult--

KKB: Mm-hmm.

MJ: Dr. Elwyn was a consultant to our team. And this Option 12 is probably the most widely used and validated tool to measure shared decision-making. Although one limitation of this tool is that it looks strictly at the physician performance of shared decision-making, and not that of the patient. But we looked at all those correlations and we really didn't see anything. You know, so, well, we did notice that for example there is racial difference between, in terms of shared decision-making. I think we did see that for, you know, African-Americans compared to Caucasians, the shared decision-making was lower.

KKB: Yes. Which we've seen before in the literature where they've shown--

MJ: Yes.

KKB: --That's sort of a standard thing.

MJ: Right.

KKB: That the communication that occurs between black patients and their doctors is at lower rates. And I think lesser quality than what happens between white patients and their physicians.

MJ: Right. Which was actually very interesting, because one unique piece from our study, from the baseline survey that we obtained, was that the blacks actually had higher intent, and higher self-efficacy. That is, a thought that they are actually able to do it, those, they scored higher in those attributes, at baseline compared to whites.

KKB: Mm-hmm.

MJ: But, so they were actually better informed, better engaged at the baseline, than the white patients. And everything else was pretty much equal demographically. And then, you know, this, the shared decision-making by their doctors, it was scored lower during the visit. And, and also, when we are actually look at the colorectal cancer screening rates between the two racial groups, blacks and whites, blacks did undergo screening at a lower rate than whites. So...

KKB: And, yeah, it's hard for us I think to be able to expand on why that might be for our particular study. But we do know in the literature oftentimes they do talk about different social determinants--

MJ: That's right.

KKB: That [inaudible] those lower screening rates—

MJ: That’s right, that’s right. Yes.

KKB: --And those sort of lower adherence rates to whatever screening may have been recommend.

MJ: That, that's correct, because although the shared decision-making was lower, interestingly the blacks still had about equal or if not higher intent to undergo colorectal cancer screening at the end of the visit, compared to whites.

KKB: Mm-hmm.

MJ: So they were still motivated. But something happened between the visit and the actual screening, because they were not able to do it at as high of a rate as the whites. And this is probably has to do with access and other social economic factors that our study didn't address.

KKB: Correct.

MJ: But more importantly I think our study was important negative study in that, you know, the shared decision-making didn't really have that much of a contribution to the other aspects of, you know, intent, or preference clarification, or the actual behavior, colorectal cancer screening. Because, you know, there's an assumption I think going on particularly with policymakers of that, who expound shared decision-making, that, that it is good, that it does lead to better health outcome, and it does lead to better health. Which, but when you look carefully at the literature, and one of my previous co-investigators, Jennifer Elston Lafata and her group, had a very nice review about that. About 4 or 5 years ago. That shared decision-making doesn't necessarily lead to better behavior, or even possibly better social cognitive changes.

KKB: Yes. So--

MJ: We do know that—yes?

KKB: Oh I'm sorry go on, I didn't mean to cut you off.

MJ: We know that shared decision-making and also decision aid which is supposed to help with shared decision-making, you know, do lead to increased knowledge and maybe satisfaction about the decision. But other than those subjective factors, when you look at more the objective outcomes, you know, there's not as much positive impact as we thought that we were going to see.

KKB: Yes. So, for those of us who are engaged in shared decision-making, we are engaged in patient/physician communication and how we can improve that, and understand that those are key significant skills. And also understanding that really at its base shared decision-making is an ideal. And it is an ethical ideal, I think.

MJ: Yes.

KKB: Because it is important for those discussions to take place. But then, at its base as well, what we're trying to think about is how do we know that a decision, one, is truly shared, and how are we measuring, and what are we measuring when we say we're measuring shared decision-making.

MJ: Right.

KKB: Within many instances the tools that we're using are not factoring in a relationship dynamic. We're not looking at length of, the length of time a patient and physician have been engaged in a dyadic relationship. We're not looking at the quality of that relationship. How then are we talking about shared decision-making, if we're not also considering the relational component of shared decision-making?

MJ: That's very true because shared decision-making, most of the measurement tools are transactional. They only look at the particular certain behaviors during that particular time that it was measured. You know, for example, were the, were the patients told that there were options available. You know, what they told which options were available. You know, what, what is the pros and cons of each option, and yadda yadda. Now, the issue there is that, yeah, we measured the shared decision-making, quote unquote, for that particular visit. But we didn't really measure anything from what happened before that. We don't know what kind of conversation has been going on prior to that. You know, maybe there has been some discussion ongoing already, and, and so by the time that the, even without the decision aid, or maybe, you know, help with some decision aid, that the, if the patient had firmed up their preference or decision about the, in our case, colorectal cancer screening, the physician already kind of intuitively knew, okay, that from their previous discussion, that that's what the patient wants. And, you know, there doesn't need to be much conversation regarding shared decision-making at that time. The physician can say, okay, you, you have your decision, you made your decision, that's fine, that's okay, I support that. Let's go ahead and get that done. Because we, the measurement is very, is very transactional. We only look at the quantity of what's been discussed, and then the actual, the quality of, even though not many things like options or pros and cons were, you know, rehashed again at the time of the visit. The quality of the actual agreement between the physician and patient may be higher, and that's something that we may miss with our current measurement tools.

KKB: So, for something like colorectal cancer screening where there are several options, and historically we have talked about shared decision-making as being ideal, being ideally situated for decisions that are preference-sensitive.

MJ: Right.

KKB: And I think colorectal cancer screening would be one of those preference-sensitive decisions. Because you're really making the decision between a stool blood test or colonoscopy.

MJ: Right.

KKB: And colonoscopy is really considered the gold standard. And particularly for patients who are at higher risk. But I think, and correct me if I'm wrong about this. if I'm misremembering this. In DATES, in, while we were going through the transcripts we found that physicians oftentimes would recommend colonoscopy even for those patients who were average risk because for them, it was the gold standard.

MJ: Right.

KKB: And they felt that this was the way to know for sure, to know definitively, so why even consider a stool blood test when you can go straight to what's going to give you that definitive answer.

MJ: Yes. Well, for many physicians shared decision-making is actually not necessarily what the word entails, but actually persuasion. [Laughs] So, not to really come to an agreement where both may agree, but for the patient to agree to what the physician recommends.

KKB: [Laughs]

MJ: So, so, and there is something studies to back that up. I mean one is regarding, you know, the physician. There have been other studies that show that even though average risk patients should benefit equally from colonoscopy or stool blood test, physicians invariably recommended colonoscopy.

KKB: Yes.

MJ: We also know that for the US Preventive Services Task Force they have various tests or other things that are recommended like A through, A through D. And A and B are the ones that are either strongly recommended or recommended to undergo.

KKB: Mm-hmm.

MJ: And C is actually kind of equivocal, it can go either way by may consider. I is indeterminant where, you know, there's really no data. And D is like, don't do it. And so when you think about it, those recommendations C and I are the ones where the shared decision-making should impact the most. Because we don't know, have much data.

KKB: Mm-hmm.

MJ: But the physicians actually feel that those recommended A and B are the ones that where they should discuss in terms of quote unquote shared decision-making. Which, when you think about it, doesn't really make sense because A and B are already strongly recommend.

KKB: Yep.

MJ: So, you know, so again, I think it comes to the physician's perception of shared decision-making as more of a persuasion rather than, than true shared decision-making. And another piece, you know, what we found in our transcripts is that, for example, you know, the doctor might be talking about colorectal cancer screening with the patient, but then the topic will move to hypertension. You know, the management, patient doesn't really like their medication currently, and then the doctor starts talking about other medications available. So that's also discussing options as shared decision-making. And maybe the patient may complain of pain where they kind of talk about options like, you know, Tylenol, or non-steroidal stuff like Advil, or even maybe opioid. And again, discussing options. And then if the patient has depression they might talk about, you know, treatment by therapy, or treatment by medication. If medication, what medication. So there's really lots of different topics that entail options, and therefore shared decision-making. And so when, again, we found in our transcripts that there can be anywhere from 3 to like over 20 different topics that have been discussed. And if you're gonna try to do shared decision-making for all of them, you can't really do it. And what are the really important topics to, where--

KKB: Yes.

MJ: --Shared decision-making can be really important. You know, for example, patients with early prostate cancer where not doing anything treatment-wise, but following closely through active surveillance, or radiation, or actual surgery. I mean so those are the options that, you know, should be discussed in a shared decision-making manner. And where the patient would likely be very engaged because, you know, well, they have cancer.

KKB: Mm-hmm.

MJ: That, like a same degree of importance. For example, even like with colorectal cancer screening, I'm always, you know, kind of chide our profession when I know that the physicians always recommend colonoscopy. But, you know, if the, if, and some patients are fine with it. You know, they're not given the option, they just go ahead and do it. If they do it, is that, you know, I mean, was it bad that they weren't offered the stool blood test. You know, but if there wasn't the time to discuss that, you know, and if there were other issues like selecting an appropriate blood pressure medication, that may be more important in terms of shared decision-making. Can we position. I mean those are things that we need to think about. You know, when is, should the shared decision-making, when is it really important.

KKB: Yeah. And in some ways, you know, we've been doing this for a long time, Mas.

MJ: Yes.

KKB: And one of the things that I struggle with is, what is shared decision-making? Because it goes back to what you were saying about it being transactional, it being about persuasion.

MJ: Mm-hmm.

KKB: My question is always, if we're talking about shared decision-making, how do we know that a decision is actually shared? At what point in a conversation with the patient do we know that has occurred? And I guess I want to kind of go back a little bit, and let people know that in DATES, although we sort of primed the patient by exposing them to the interactive decision aid, we didn't do any type of prime for the physician.

MJ: Yes.

KKB: So the physicians were just really acting as they normally do--

MJ: Exactly.

KKB: --Without any training, or any kind of education, or any kind of skill-building around shared decision-making. And so it's, would be unfair for us to say, well we didn't find any shared decision-making in the transcripts. Which we didn't, for the most part, without also saying that we didn't necessarily prime the physicians to let them know that this is something they should be actively engaging in. And you and I have talked about this.

MJ: Yeah.

KKB: Maybe at nauseum about the fact that--

MJ: [Laughs] Yes.

KKB: --You can't really just prime one part of the dyad.

MJ: Right.

KKB: You have a look at the dyad as a whole.

MJ: Right, yes. Yes, right, I mean the physicians were given kind of like a summary sheet. but that's all.

KKB: Correct.

MJ: Otherwise nothing. And also it's important to note that, yes, you know, the overall score of the physicians regarding shared decision-making was, you know, quite poor.

KKB: Correct.

MJ: Of out of 100 possible points, you know, the average was around 10 to 12. You know, which is obviously very low. But interestingly, when you look at other data regarding the use of Option 12, you know, it's, the typical score is between 10 and maybe 25 at the most. And there was a very interesting study that looked at shared decision-making in lung cancer screening. Where there's now a policy that the shared decision-making has to occur with lung cancer screening.

KKB: Uh-huh.

MJ: But the authors of this study actually reviewed the transcripts, and they scored the shared decision-making based on the same tool, Option 12, and the average score was 6. Out of 100.

KKB: Wow.

MJ: So, actually our physicians did better than-- [Laughs]

KKB: Yeah. Wow.

MJ: --The physicians in that study. So, when you think about that, you know, we, maybe the shared decision-making that was done was so low that, you know, that a little bit of improvement from really really low to maybe just a little bit low. [Laughs]

KKB: [Laughs]

MJ: Like improvement in two points out of a possible 100, maybe the effect size was too small to have a meaningful difference. You know, if the, you know, if the shared decision-making occur, let's say it went from like 20 out of a 100 to let's say 50, maybe we may have, you know, seen some impact. But again, it's important to note that the measurement tool only looked at the transactional--

KKB: Mm-hmm.

MJ: --You know, measures, in that one particular visit only. So, we actually don't know whether that is the right way to measure, you know, the actual decision-making process that occurs between the physician and the patient.

KKB: And sometimes I wonder if, in trying to measure shared decision-making, if somehow we as researchers haven't manifested this sort of shared decision-making ideal that's really unreachable, unattainable, and untenable. This idea that it's got to follow these certain sort of rules, these things have to happen. You know, I'm at the point in my career where I'm just like, I'm just okay with some good enough conversation at this point.

MJ: [Laughs] Yeah.

KKB: If I can get a physician and a patient to have some sort of conversation about what are the options, what are maybe some potential side effects, you know, what are the goals for the patient. I mean if they can just do that for me, I think I'm going to have to be okay with that. Because I can't continue to see shared decision-making as some sort of fantastical unicorn that's going to pop up in the visit room, and magic is going to happen. I just don't think that's going to happen. And I'm pretty much, I think I'm done with that.

MJ: You're right, I mean, I think over the course of the study I kind of transitioned from a shared decision-making true believer to a shared decision-making skeptic.

KKB: [Laughs]

MJ: Yes. Yeah, that's true. And also, I think the interesting thing about shared decision-making, I think it is kind of Eurocentric.

KKB: Yes.

MJ: Very individualistic, one-on-one. Really kind of discounts the involvement of the family. And also what's interesting is when I speak to some of the research on shared decision-making, I don't see much difference between what they consider as ideal shared decision-making versus informed choice, where the patient does all the choice-making.

KKB: Mm-hmm.

MJ: And when we talk about, well, it's actually physician also making some recommendation, right? They said, no, it's like, you know, the patient has to drive all the decisions. Which, I don't think that's necessarily true. And the other piece is, you know, when we look at the patient's preference for decision-making, we know that, yeah, most patients either like to make decisions on their own, or, you know, with consultation with their doctor.

KKB: Mm-hmm.

MJ: But we do know that some patients really want to have maybe equal contribution with the doctor, or, you know, after they, you know, discuss they want the doctor to make the decision. Or some small percentage of patients actually want the doctor to make the decision, you know. If that's the preference that they started from, is, and that's what their value is, is forcing them to really, you know, kind of make an active decision, is that for the patient's benefit. That's sometimes something that I kind of struggle with. Especially when I think about how cultural differences may contribute to how much patients may want to be involved in the decision-making process. And this is actually kind of tricky, and it could be a slippery slope in a way, because, you know, we do know that the more informed the patients--

KKB: Absolutely.

MJ: The more active they want to be involved in the decision-making, So we want to make sure that their, you know, preference for who wants to, who makes the decision, is derived from being they're fully informed about it, but they still want somebody else to make the decision. Versus, they are not fully informed, so thus they don't want to make the decision. I think we need to make that distinction.

KKB: That's right. And we do need to, I think, engage patients. But I think at the very beginning we have to make sure that the people who are involved in making the decision, the physician, the patient, whoever's important to the patient--

MJ: Yes.

KKB: --That they want to bring into the decision-making process.

MJ: Yes.

KKB: There has to be an understanding that first, there's a decision to be made. I think oftentimes people are not even clear about that at the very beginning. We are going to make a decision about what blood pressure medication--

MJ: Mm-hmm.

KKB: --Is gonna work best for you.

MJ: Right.

KKB: Based on the different side effects there are possible, your work schedule--

MJ: Mm-hmm.

KKB: --What you are willing to tolerate and what you're not willing--

MJ: Right.

KKB: --To tolerate. And I think oftentimes you're right, with shared decision-making, in some ways what's happened is that we have given patient autonomy this super duper level of centrality.

MJ: Yes.

KKB: That, the idea that the physician actually has something to add to the discussion, and can be involved in making some recommendations, has gotten lost, some kind of way. And I remember in grad school, in my working on my dissertation, which had to do with benign prostate disease and health care decision-making. I remember writing my dissertation, you know, the idea that someone doesn't want to make a decision, they're like, doc, I need you tell me what to do, and I'm gonna do it. Making that decision is in itself a decision.

MJ: Right.

KKB: And that's okay. It's almost as if we've forgotten that the decision to not make the decision is a decision that can be acceptable.

MJ: Yes. And, you know, an important part of that is also, it's always the continuum.

KKB: Correct.

MJ: And that's, the relationship and continuity becomes important. Because, you know, a patient may decide to have the doctor make the decision, and then we come to a, you know, treatment decision. And then, you know, if that medication didn't have the desired effect or some side effect or something, then maybe the patient might be more motivated to make, you know, make greater contribution to the decision-making process at the next visit. So, they might say, well, you know, I asked you to make a recommendation, and you recommended this, and I did that. I had some problems with it. Now I want to know more about other options and I want to, you know, be kind of more involved in which one to choose. So, you know, again, depending on the visit, and depending on what happened based on the previous decision--

KKB: Mm-hmm.

MJ: --The patient's, you know, kind of desire to contribute to the decision-making might change.

KKB: Correct.

MJ: I think those, and that's where the relationship and continuity becomes important, and I think, and that's what makes shared decision-making and the whole decision-making science fascinating, but difficult to try to measure, and difficult to figure out what is good and what is not so good.

KKB: Absolutely. And I do think that's what's missing. The fact that it is a continuum. It is a process. I think oftentimes people think about shared decision-making as this stand-alone moment in time.

MJ: Right.

KKB: Discussing this one thing. You know, going back to the example I was trying to make about blood pressure medication. Of course you're gonna make a decision about a particular blood pressure medication at that one point. But we're talking about somebody who's got a chronic disease. So, it's going to happen over a continuum of time, how are you going to manage hypertension for this patient?

MJ: Right.

KKB: So shared decision-making becomes a process--

MJ: Yes.

KKB: --Over an established relationship over a length of time, and it is not a stand-alone moment.

MJ: That's right.

KKB: So, Mas, I think it's time for us to end this very--

MJ: Okay.

KKB: --Fascinating and wonderful conversation. Of course you and I talk about these things offline all the time anyway, but it's nice--

MJ: And it's always a fascinating discussion, always great to talk with you.

KKB: Yes. All right, well thank you so much Mas.

MJ: Okay, and hopefully this weekend both teams win in football. [Laughs]

KKB: [Laughs] There's always hope, right?

MJ: [Laughs] Yeah.

KKB: [Laughs] Thank you so much.

MJ: Okay.

KKB: Okay.

MJ: Bye-bye.

KKB: Bye-bye.

LM: Thank you for joining us today on No Easy Answers in Bioethics. Please visit us online at bioethics.msu.edu for full episode transcripts and other resources related to this episode. A special thank you to H-Net: Humanities and Social Sciences Online for hosting this series. This episode of No Easy Answers in Bioethics was produced and edited by Liz McDaniel in the Center for Ethics. Music is by Antony Raijekov via Free Music Archive.

No Easy Answers in Bioethics Podcast

Social Determinants of Health in Medical Education: Ajegba, Bogdan-Lovis, and Kelly-Blake – Episode 18

December 3, 2019 Brittany Ajegba photoLibby Bogdan-Lovis photoKaren Kelly-Blake photo

This episode focuses on the topic of social determinants of health, or the social and environmental factors that influence our health and access to resources. How can social determinants of health be integrated effectively into medical education and clinical practice? Center for Ethics faculty members Libby Bogdan-Lovis and Dr. Karen Kelly-Blake speak with College of Human Medicine student Brittany Ajegba, who emphasizes the need for standardization when training physicians on social determinants of health. From medical education to clinical encounters, they provide a variety of perspectives on this increasingly important work.

Listen now on H-Net

This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: "While We Walk (2004)" by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License.

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Episode Transcript

Liz McDaniel: Hello and welcome to another episode of No Easy Answers in Bioethics, the podcast from the Center for Ethics and Humanities in the Life Sciences at the Michigan State University College of Human Medicine. This episode focuses on the topic of social determinants of health, or the social and environmental factors that influence our health and access to resources. Center faculty members Libby Bogdan-Lovis and Dr. Karen Kelly-Blake speak with College of Human Medicine student Brittany Ajegba, who emphasizes the need for standardization when training physicians on social determinants of health. From medical education to clinical encounters, they provide a variety of perspectives on this increasingly important work.

Brittany Ajegba: So, hi everyone my name is Brittany Ajegba, fourth year medical student at Michigan State University, College of Human Medicine.

Karen Kelly-Blake: I am Dr. Karen Kelly-Blake. I'm an associate professor in the Center for Ethics and the Department of Medicine.

Libby Bogdan-Lovis: And I'm Libby Bogdan-Lovis, assistant director at the Center for Ethics and Humanities. And I'm going to start off to establish a foundation for today's podcast on the challenges of integrating social and medical care. I'm going to borrow wisdom from Health Begins, and Health Begins is a social enterprise led by founder and president Dr. Rishi Manchanda. That organization provides training, clinic redesign and technology to transform health care and the social determinants of health. And the crux of their approach is to look upstream, as they describe it, to address the myriad of causes for poor health. And I think it's useful to review a few of their primary concepts. What we're going to talk about today is social determinants of health, which as they describe it are the causes of poor health found in underlying community-wide social, economic, and physical conditions. Then, social needs and health-related social needs are the effects of the causes as experienced by specific individuals or defined populations. And then there's structural determinants of health, which are really the causes of the causes, which include those broad socioeconomic and political climates that shape social hierarchies and lead to inequities. Our focus today considers social determinants of health from our own varying perspectives. For Karen and for myself as developers of curriculum content, and for Brittany as experienced by she's a fourth year medical student, but she entered MSU with a master's in public health. And she is in the Flint, Michigan community campus. And we should alert our listeners that the MSU College of Human Medicine has a community campus structure. And it makes available to students in the Flint campus access to the Leadership in Medicine for the Underserved, or we call it the LMU program. And with this program students like Brittany, like you, you work with and learn from under-served population such as those living in that post-industrial city. Finally, a paradigm usefully illustrating the benefits of addressing social determinants of health in clinical care is Dr. Mona Hanna-Attisha, whose careful attention to her pediatric patients helped uncover the Flint water crisis. And in fact our Center for Ethics and Humanities Acting Director Dr. Leonard Fleck wrote about this in his October blog, "Health Care and Social Justice: Just Take Two Aspirin for Your Tumor If You Cannot Afford Your Cancer Care." Notably, professional medical societies generally support screening for social determinants of health, but as recognized by the three primary concepts mentioned, to be effective, screening needs to be wedded to macro-level efforts that address the causes of the causes, that is the structural determinants of health. And to illustrate again with the Flint water crisis, this then took that community's collaborative efforts to force governance change. And so, Karen and Brittany, let's now launch into a frank discussion about controversies that are related to incorporating social determinants of health into medicine and into medical education.

KKB: So I think one of the first places we can start is, and Brittany not to put you on the hot seat...

BA: [Laughs]

KKB: But since you are actively engaged in medical school and a learner of medical education, and with your background, having a master's in public health from Columbia University, could you speak to the sort of challenges you've encountered being a student in engaging with social determinants of health as a learner? And what you think maybe some of the potential remedies might be?

BA: Yeah, sure. I think for me starting with that question you would have to assume that that's being talked about in the classroom. I think that in order to figure out what are some of the remedies, it's like let's start from the beginning. And I think for us, in order to kind of assess how social determinants is being brought into medical education, it would be just that, brought into medical education. And oftentimes what I have found is that the discussions around social determinants of health are fleeting, and they are quick. They are kind of an add-on, if you will. They are kind of an afterthought. I don't know if we have found a great way of integrating fully this idea of social determinants of health into medical education. It feels more an afterthought. And I think if we start to think about how we can then progress, that we have to address the fact that it seems at least in part an add-on. I think for me personally a lot of the things that I've felt as a medical student as far as my personal background or knowledge about social determinants of health comes from my background. It doesn't come from what I've learned in medical school. It comes from my public health degree. I was a sociology major in undergrad. And I had more experience and more kind of thought behind social determinants of health before even entering medical school. And so if I'm being frank, I'm not necessarily sure what's been added to that background while being in medical school. I think oftentimes, again as I said it tends to be something that is thrown into the curriculum because it's the new age thing to do. Let's focus on social determinants of health and therefore we have now physicians who are able to kind of at least say that they learned something about it. But again that's not necessarily the way I believe to approach, approach us thinking critically about the issues that are going on. Particularly in Flint. I think that while it provides a lens and it provides a place for us to kind of see the public health crisis that was going on in the Flint water crisis, I don't necessarily know if being a Flint student if I got access to how we will, as physicians, address the needs of the patients who we are serving. And that to me is kind of getting at the psychosocial dynamic that Libby kind of introduced us to.

KKB: So it sounds like based on what you've said, it's not just about making people aware of the social determinants of health, and the community and social needs of the patients, but it's also about what resources, what infrastructure is actually in place that we can address those needs in a meaningful way. That there can be resolution on the back end. And it sounds like what you're saying, and please correct me if I'm wrong, that that's not really something that you've gotten as a medical student. And the times that you've been exposed to that in medical school, it's not been in depth, and it has no, no breath that really will help you as you become a practicing physician.

BA: Correct. I think that oftentimes too as I said we've kind of gotten on the bandwagon in medical education of trying to address social determinants of health, but we haven't necessarily figured out what is the best way to actually teach physicians that. Again I kind of have my own background in sociology and public health which informs kind of the career choices I've made coming into medicine. But if you don't have that background it's like how, how are you supposed to learn not only what are they, but how are you supposed to address practically those issues. And I don't know if we figured out a good way for those who don't have a background in this work, how are they supposed to not only become learners, and things like that, but how are they then supposed to practically apply the information that they've taken away.

LBL: So Brittany let me then press you a little bit further, and I should clarify that you're a student in the College of Human Medicine under what we call the legacy curriculum.

BA: Yes.

LBL: And we introduced a new curriculum, the Shared Discovery Curriculum, four years ago. And in the Shared Discovery Curriculum, Karen and I have worked at developing curricular expectations. And I'm just going to review some of those with you it'd be interesting to get your feedback. So in the first experiences, which we call the early clinical experiences, the students get exposed to and they learn about ecomaps, which is a strategy to learn ups and downs about a patient's social network. And then they're assigned an exercise to identify social service resources and examine barriers to those resources, and suggest ways to overcome them. Then in their middle clinical experience or what we call the MCE, they have a required rotation with social workers, you may have heard about this. And then in the late clinical experience they're assigned exercises to learn something about the social circumstances in their own geographic region around their particular community campus. And then they're again asked to identify social service resources particular to a patient case presentation. Does that sound like that strategy might be effective? What do you think?

BA: Yeah I think that those are all great beginnings.

LBL: Yeah.

BA: I think that those are all things to start out with. I think that again having something is better than not having anything. The thing that I would argue is how do we make sure that's standardized across all... I guess my thing is how is it standardized? For instance, does what they're doing then actually, is it just another assignment that they feel they have to do, or is it something-

LBL: Yeah.

BA: -You feel that they're really going to take away and then apply it to, to their career choice. For me, I'm going into family medicine, I'm currently applying right now, and that seems amazing to me. I would love to work with social workers, I would love to work with, you know, doing a social map and ecomap, things like that. But I think for me that's the stuff I'm interested in again based on my background-

LBL: Mm-hmm.

BA: -Those are the things that I'm interested in. I'm much more interested in like the psychosocial circumstances of health than anything else. But again to the person going into vascular surgery, you know, how does that apply?

KKB: That is a conundrum isn't it because if the goal is that we are incorporating social determinants of health into the social part of medicine. The bio-psycho-social part of medicine, which we like to stress at CHM, how do you engage those students who feel that, well I'm not going to be a primary care physician, I'm going to be a surgeon, how does this apply to me? Why is this important to me? Why is this something that I need to spend my time on, aren't there other people who can do this kind of work, which then frees up my time? I believe perhaps there is a disconnect between understanding that you are part of a team, and is the idea that we are going to make it easier for the physician to disconnect from the team because there's a feeling that that work is higher-order work, and the work of actually investing in understanding the social context of the patient is lower-order work, and therefore should be sort of siphoned off to those sort of mid-level career healthcare workers. What do you all think about that?

LBL: Well I think if, I mean, so I've done some reading on this. And it seems to me there is general consensus within the professional organizations that minimally, physicians should be screening for social determinants of health. And frankly, I think I'd be happy if they did the screening and then were aware of what those resources were, and who to go to to find those resources. And made that next step and did the referral. I think that would be a great start, and an improvement on what we currently have.

BA: I agree. I think that, you know, understanding the resources is a huge part of it. I think, you know, you can't necessarily defer it to the social worker or the case manager because again, it comes back to the question of whose job is it? You know especially as primary care physicians you kind of go in to this field trying to be kind of the first line of defense. Kind of being the ones to kind of coordinate all of the care, and I think, you know, if you don't do it then it's kind of like whose, whose job is it? I don't think that necessarily putting it off to a mid-level provider or a social worker or a case manager is fixing the problem. I think it's just kind of kicking the can down the road proverbially if you will.

KKB: So I'm gonna play devil's advocate a little bit, because I like what you said. Because that really is the notion and I think with the sort incorporation of patient-centered care, the whole sort of medical home model that came into fame a few years ago, this idea that the primary care provider was that sort of first line of defense. But I would potentially argue that that is an ideal model when the infrastructure doesn't necessarily exist for the primary care provider to be that first line of defense. When you are allotted 7 minutes, maybe 15 minutes, to spend time with the patient, some things are going to get left off of the agenda. So decisions are being made in, within the constraints of the clinical encounter, the visit. So what is the primary care provider to do if they are to be the first line of defense, when the infrastructure is not in place for them to do that most important work that many of them probably value doing. Any responses?

LBL: Well-

KKB: Any clarifications?

LBL: So we've talked about this a little bit in the past, and I would argue that if it's included in the electronic health record, and I am not going to go into all of the problems with the electronic health record, there are many. But minimally if you include screening for social determinants of health in the electronic health record, it would then prompt the clinician to think about some of, for instance, the barriers to full access and full engagement in care plan by the patient, and that's an important piece.

KKB: So what does screening look like?

LBL: Yeah.

KKB: I guess I am not familiar with, because that is sort of a new thing, this idea that we should be screening for the social determinants of health. But what does screening mean? Is there sort of like, is there or an algorithm, is there a rubric of some sort, what is being, what's in place that physicians are using to screen for social determinants of health? Because social determinants of health encompasses a wide range of social contextual areas impacting a patient's life. They can't screen for every one of those areas.

LBL: So, I would answer, and then I'm going to ask Brittany to weigh in here because you've actually seen electronic health records. I would imagine that aspirationally, and again it is aspirational, I don't think we're there yet. That a physician would screen for housing security, food security, safety, those sorts of things. And Brittany, can you help us out?

BA: Yes. And that's what I was just about to say, there, you're right, you're both right in the sense that Karen yes there are a number of things that kind of fall under this umbrella of social determinants of health. And if we kind of go back to the definition that Libby had mentioned as far as what are social determinants of health, right, I mean it's all the conditions that people are born, live, grow, work, and eventually die in. So that encompasses a wide range of things, kind of the causes and the effects. And I think that one of the things that at least I've seen that some doctors, again, not all, will ask particularly in kind of even more vulnerable populations like pregnant populations, things like that, are, pediatric populations, are do you feel safe at home. Do you have, well first of all, do you have a place to live? Let's start with that, and then if you do, do you feel safe there. What are things that you would change in your neighborhood if you could? What are things, so I've seen that. Again it's usually in those specific patient populations. That generally by no means is the kind of standard. I haven't seen that particularly asked in the electronic medical record. That's, I haven't seen that. But again, in some patient populations physicians will just ask. Maybe they have a background themselves in public health, I have seen that. Or they're just very kind of in tune with social determinants and so they will ask things around housing insecurity, food insecurity. I know the, the pediatric clinic in Flint has a food program with the market, with the Flint local market downstairs. You can get a food voucher every you come in for an appointment to get fruits and vegetables, things like that. So again, if you're in a, if you're in an environment in a place that kind of is attuned to issues surrounding social determinants of health you're much more likely to have a, a clinician ask those questions. However that by no means is the standard and that's not that's particularly detailed in the electronic medical record.

LBL: Yeah. And one of the things we've talked about too is the advantages of what you just described, and that is co-location of resources. So again aspirationally, it seems like if there could be social services available within the same site as the clinical care, that would be ideal.

KKB: So what would those social services look like in the same location. Are you talking about a social worker who's there as part of the clinic team, or are you talking about a food bank in the clinic? What exactly are you referring to as being resources there available.

LBL: All of the above. I think that would be ideal.

KKB: So in a sort of, a world where all those things could happen, [laughs] we could imagine that those things would be in place in a clinic site so that somebody could come and get all those things addressed. But we don't live in that world, I don't necessarily foresee that world on the horizon. So considering the limitations of our current situation, and understanding that physicians are not necessarily knowledgeable about social service resources, how do we engage students and policymakers to sort of enforce this idea that this is important, and that these are things to which we should be aspiring. How can we make the argument that doing these kinds of things leads to better health outcomes?

BA: Yeah I think, again, the thing that I kind of go back to when I talk about this kind of work being introduced into medical education is standardization. I think that as I mentioned just before, you know, some clinicians ask the questions, not all. I think that's kind of where Libby was going with when you introduce things into the electronic health record, you can't miss it. That's something that would be standardized across all fields, across all clinicians. And I think that that kind of goes into the, my point about how we introduce this into medical education. I think that it has to be something that we try to standardize across all students, across all schools. I think that when we talk about why this work is important, people have to first know what it is. Social determinants of health. A lot of people don't, even if they're in the medical field, don't even know what that is. And then oftentimes too what happens is if you know what it is, you find yourself kind of falling victim to the daunting task of how to address it. But I think just starting out with standardization would help a lot as far as figuring out how to standardize that type of curriculum in a medical education setting. So all students have to do it, and I think Libby mentioned a couple of examples of what the new curriculum is doing. All students have to do it. I think asking the question of why they think it's important would give great insight into what students even think about social determinants of health.

LBL: Mm-hmm.

BA: I mean, do they feel like that is a social worker or mid-level's job? Or do they feel like as a physician, no, people go to the doctor fairly often, it's my responsibility, and it's my responsibility to try to address those needs. But you can't begin to address those needs if you don't see how social determinants even connects with health. So if somebody comes into your office with hypertension, it's not just hypertension, right. It's not just high blood pressure. It's like what are the things, what are the social circumstances that inform that high blood pressure. Do they live in a food desert? Okay, then electronic medical record, we can ask about food insecurity. Do they have a place to live? Are they, do they have employment? All those things that contribute to stress. How does stress equate with blood pressure. You know, things like that. We have to kind of I think get creative and think outside of the box here as far as how we can standardize this.

LBL: So if I can put a plug in Karen to respond to you, the National Academies of Sciences, Engineering, and Medicine just released their report “Integrating Social Care into the Delivery of Health Care: Moving Upstream to Improve the Nation’s Health.” And their approach, they have the five activities to strengthen social care integration, and they suggest it includes awareness, which would be the screening piece, adjusting clinical care to accommodate the social barriers, assistance with connecting patients to needed social services, and then alignment to synergize investment in the community, and advocacy to collaboratively steer resources towards those health care needs. The other thing I think, so I think that probably will change the conversation. But the other thing I think we need is to look at some of the models. And so we don't live in a world where all those resources are available, but there are models out there. And I think the work that for instance Health Begins does where they put, they have speakers who describe how they got to their particular structure is useful. So we can look at models as well.

BA: Yes, no and I think that there are certain, and again models if we're getting creative don't necessarily have to come other models with a medical education. I feel like there were a number of public health initiatives that were done that were not necessarily popular, people didn't really know what the effects are. Like we could talk about smoking cessation. Now pretty much every building is smoke-free. It's like that was not popular at the beginning, that was a public health initiative that kind of, people had to kind of get on board with, but again that's a standardized thing. It's not some places allow you to smoke some places don't allow you to smoke, that's kind of a standardized thing. And we can go into airlines, there's a bunch of other kind of industries that have a standardized model for how they go about training their professionals to deal with kind of these issues. And I think even again just kind of getting creative and looking maybe to other things that would help us with trying to standardize how we as students are trained.

KKB: That's an excellent point that you make. You're right, we don't have to just look at medical education models when there are a whole host of models where people are engaged in this kind of work, who are actively engaged in programming and social justice activities to address social determinants of health across a whole range of spaces. So I think one of the things that we haven't talked about that we should perhaps talk about is this idea that we're not engaging in an either/or proposition. We're not saying that it should be the primary care provider or the social worker, care manager, or someone else. We're saying potentially that we need to look at a team approach. Oftentimes perhaps we just give lip service to that idea that healthcare functions best when we are collaborating as a team, when many of us who go and visit our doctors, we don't necessarily experience that in the doctor's office. Where we feel that we have a team that's taking care of us. That's potentially one of those models that we actually need to make real and applicable. That is not an aspirational idea, it's something that we can do right now, and possibly models existing where they are doing that and doing it well. What are your ideas about this idea of inter-professional teams? And can we instill in students the importance of that, and that it is important, and it is not just a throwaway idea.

LBL: Well I'd add that, you know, with the emphasis on value-based health care now, that unless you pay attention to social determinants of health, you can't expect to have an effective clinical encounter. That if you write a script for a patient and they can't fill it, it's not an effective clinical encounter, right? It's not successful. That you need to be aware of those in order to have successful clinical encounters. Where the patient can, then can move towards wellness.

BA: Yeah I agree. I think that again ideally the, the goal is to have kind of an inter-professional working relationship where you're meeting with everyone of part of a team every single day about every single patient. But again going back to what we were talking about before about the constraints. So again it's kind of like if you only have 15 minutes to address with these patients, what I would argue is maybe figuring out a way where you can either have group, group sessions, like group patient sessions, or you can have kind of outside time. Maybe your individual appointment is 15 minutes but then you have another provider who's also on that same team speak to you for an extended 15 to 30 minutes. And therefore your full appointment ends up being, you know, almost close to an hour. Again, that kind of would require a very aligned, you know, alignment of the stars if you will. But I think kind of getting into this group model that I've seen in some practices allows for you to have your individual sessions where you kind of get your clinical needs met, but then you also have group patient sessions where people can talk about the kind of psychosocial circumstances that they're dealing with as well.

LBL: That model I know is used in prenatal care, I think it's called "centering," and it's very effective.

BA: Centering pregnancy. Yeah. they say that's actually one of the best ways to reduce pre-term births, unnecessary ER visits, you know, people have more autonomy and empowerment over their health because they feel like they're more actively involved and actively engaged in their, in their health care decision making, and things like that. So that might be one way in which you not only have a team effort, but you kind of then add the social determinants piece as well.

KKB: So I've never heard of this model around pregnancy. So is insurance paying for those group visits?

LBL: It does.

BA: It does, yes. It's covered by insurance, yes. But again not every place has that, you know.

KKB: Mm-hmm.

BA: Not every not every clinic-

LBL: Right.

BA: -Has that. Not every place has that. And I've actually only seen that at a couple of sites. I think again being in Flint you see that there is a kind of at least awareness about, of course, what social determinants of health are, and they're trying to put in place these kind of infrastructural things to help address some of those needs like food insecurity with having the pediatric clinic right above the market. So that kind of solves at least one piece of the puzzle. But again oftentimes it's not in the same location. You can get referrals, so I'm not saying that they don't do a great job of trying to address the needs of the patients and then refer outward to those services, housing services, food services, transportation issues, things like that that a lot of patients have. But I think again it's not all in the same location. So that's another limitation.

KKB: And that's another barrier correct?

BA: Yes.

KKB: So I would like to know if we have some concluding statements we would like to make as we wrap this very intriguing and frank discussion, I think. Brittany do you have any concluding statements you would like to make?

BA: Yes, I think that of course coming from my perspective, social determinants of health are, you know, increasingly important. And I think that the way that we get students, and not just students interested in primary care or who happen to be in an underserved clinical community, is we try to standardize what it is that we are learning in order to train clinicians who have this wherewithal to figure out how social determinants connects with health, you have to have that training. You have to have that education and that understanding before you go out and practice on your own. And so I think as we kind of move into how we can figure out how to engage and train future clinicians about social determinants of health, it starts there. So I think we need to try to standardize what it is that we're being trained to do.

KKB: Libby, your final thoughts?

LBL: The only other thing I can think of is I put a plug in for the very unpopular health record, electronic health record, and say in a future world I could envision a really smooth, interoperable health record where once you screen, then you can look at resources available to that patient for where they live, and for what their needs are. I think that would be wonderful.

BA: I agree. [Laughs]

KKB: [Laughs] That would be fantastic. I guess my concluding statements would be just to piggyback on what both you and Brittany have spoken to, is that this is important work. This is not a throwaway, this is not something that should happen as a pass through, this is something that is real, this is something that affects how people live every day, it affects how people work, it affects how people are going to be well and maintain wellness. And so I will end by saying it is the right thing to do. So if we operate on that premise, then folks are going to have to decide which side are they on. I want to thank you both for a very lively, frank, and honest discussion. Thank you very much for your time.

LBL: Thank you.

BA: Thank you.

LM: Thank you for joining us today on No Easy Answers in Bioethics. Please visit us online at bioethics.msu.edu for full episode transcripts and other resources related to this episode. A special thank you to H-Net: Humanities and Social Sciences Online for hosting this series. This episode of No Easy Answers in Bioethics was produced and edited by Liz McDaniel in the Center for Ethics. Music is by Antony Raijekov via Free Music Archive.