Season 2, Episode 3: Conversations on Severe Traumatic Brain Injury and Life-Sustaining Treatment

Transcript of Season 2, Episode 3

00:00:05 Eli Pier

Welcome to Finding Strength, the Spaulding Rehabilitation Podcast, where we'll try to connect the dots between rehabilitation, research and the people who are most impacted. This production is a collaboration between the Model Systems and the Rehabilitation Outcomes Center at Spaulding. I'm your host, Eli Pier.

00:00:25 Eli Pier

Today we're discussing severe brain injury, the difficult decisions loved ones face regarding life sustaining treatment, and the evolving science that challenges traditional timelines for making these choices. In today's episode, we will hear from Deb, whose daughter, Marissa experienced a severe traumatic brain injury (TBI).

Later in the episode, we will hear from Dr. Theresa Williamson, a neurosurgeon and surgical ethics researcher specializing in spine disorders and brain and spinal trauma, with a focus on improving neurosurgical decision making, patient doctor communication and healthcare equity. We'll also hear from Dr. Yelena Bodien, a clinical neuroscientist dedicated to advancing the diagnosis, prognosis and treatment of patients with impaired consciousness after brain injury.

First, Deb will tell her story. Deb joins us from Spaulding Rehabilitation Hospital, where Marissa received rehabilitation care following months in the hospital, months where their family was not sure she would survive her injuries.

00:01:28 Deb Jones

And when we got that call that no parent ever wants to get, believe me, it's it is definitely the worst call. So, Marissa is 38 years old, is a vet tech in New Hampshire and she was travelling down to see her best friend for her birthday weekend. And so, at about 2:00 in the afternoon when we were chatting, Marissa told me that she was going to stop soon and get a bite to eat. So we said, ok, we'll chat later, and at 4:00, I called her again, no answer. And of course, your mind goes to the very worst thing and you try not to because that was one phone call. And so, I kept calling her several times. And, you know, we thought, well, maybe her phone has, you know, has gone dead or whatever.

And at about 7:00 I got that phone call that no parent ever wants. Sorry, here I go. And she had been in a car accident. What they believed had happened is that she had choked when she stopped to get something to eat, she choked. And when, we believe, when the airbag deployed it, it did like Shaken Baby Syndrome, she was on the highway, her vehicle was swerved to the left and hit the guard rail, swerved to the right, swerved to the left again, and then she actually, we don't know how, but she wasn't unconscious quite yet. And she slowed her car down in the breakdown lane. She never hit anyone else, so that was the first miracle. So many miracles happened.

So when we got there, they had her in a coma. We really didn't know too much of anything. And she was very, of course, very fragile. So it was days and days. The good parts of it were that she never was left alone, there was someone at her side 24/7. We just couldn't leave her. And we talked to her, we read to her. Each one of us had a Spotify account with our our own music for her on it. We touched her, we did everything just to let her know we were there. And I believe in that power, big time. You know, we saw the results.

So the doctors, she was right in the critical care, of course. And she had the probe in her brain. So that meant down there, at least that two nurses were with her 24/7. She was never, she always had nursing it was, you know, you saw the medical profession in action. You just. And she was right across from the nurses station, there was just she was in view of everyone at all times. She was very fragile, but they kept us informed every step of the way.

I kept asking questions about you know, quality of life. I was really very concerned with quality of life for for our daughter. Luckily, the family was all, I guess luckily was all on the same page about it. We didn't ever have a conflict within the family. Our belief was truly that if there was not going to be equality of life we would terminate. And heartbreaking, but we felt that's what she would. Because she's an outdoor person, she hikes, she kayaks, she has a dog, she walks the dog constantly. She's in the, you know, animal profession. And we just knew that it, we knew. But yet you say, you know, but you don't know because she was 38 years old. So how do we know what she wants? And I worried a lot about that when we are trying to make the decision, because my opinion for me, I think, would have been discontinuedif it was me, I wouldn't want to live that way. But I'm a lot older than she is and so you're trying to make that decision for someone 30 years younger than me. And that was really scary. And actually the doctors kept saying that to us. They kept saying it's not time to make a decision yet. We need to see, the brain is still swollen, you know, all of this stuff. And so they talked me down off the ledge a few times because I was pretty adamant that I didn't want to go too far, you know, it was a it was such a support system because they were all there for us, but they also knew we couldn't handle it. We couldn't handle the outside people, so I would get a heart, or a thinking of you, or prayer sign on my texts from my friends and our our people back home. Her friends, everything, not expecting us to ever return anything. But I'm going to tell you that I am 100% confident that's why she's alive today.

00:05:57 Eli Pier

After four weeks in the hospital, Marissa remained under care as her doctors began discussing the difficult decision of whether to continue life sustaining treatment with her family.

00:06:07 Deb Jones

They finally came to us because I kept urging them, so I really put this on me. They showed us every scan they gave, they took of her. They called us into their offices constantly. And when we had these discussions, they kept saying to us as a family, what is quality of life? What is it? Is it 25% of what she used to be? Would you be happy with that? Would she be happy with that? Or 75%? And of course, we're saying 90% at least. But like the doctors told us, you say that, but is it that? Think about what you're saying. 25% quality might be OK for her.

And that was really scary, and that's where family was huge to us because we just had so many discussions. The chaplain was there, and I mean, we had to really talk about our morals, our religious beliefs and what would be OK, what could we live with in the future if we did withdraw life support and this was after about probably 4, a little over 4 weeks of being in a coma with nothing happening. And they said it, we know where you're coming from and we're telling you that at this point we're not sure what the quality of life will be for her if she comes out of the coma. So you may want to start thinking, and this was on a Thursday. And we said OK, and we said, please give us a couple of days because we need to get our family back down here, discuss it and decide, but realistically I will tell you that in my husband's, in my own mind, we were going to terminate because we really felt that was what we needed to do, so.

We did this on a Thursday and one of the night nurses was in there overnight and they used to if they had time with, extra time which you rarely do, but they would go in and spend time with Marissa and they might wash her hair with the cap or they they even put fingernail polish on her and we used to laugh and say she's not a fingernail polish, you know, she doesn't do that, but they just tried to care for her.

And on this particular night, one of the nurses was in there and she was actually shaving her legs. And she looked up, and Marissa had her left eye open. Now we had made, the doctors had told us on Thursday afternoon, you're going to need to make a decision. And Friday morning at 5:30, she opened her left eye. And the nurse, I think it scared her a little bit and she went running out and she got one of the resident doctors, who was very closely affiliated with Marissa's care and was there with us all the time and just said, you know, what's going on here and they got the three big doctors in and so she opened her eyes.

Now that's also, truthfully a scary thought, because now we don't have a decision. We get what we get with Marissa. We don't have a, we don't have any control about the quality of life anymore because she's opened an eye. So that was scary for us also. But when the when we met with the doctors the one thing, and I think for your research, the one thing that the doctor said that will always stay with me is they just kind of threw their arms up in the air and they said we don't know what to say here to you because we never thought she would open an eye.

And and I and they said this is when doctors, neuroscience surgeons, no matter how much education you have, this is humbling because you just it makes you realize, or the doctors realize how much we still don't know about the brain and how it can heal itself, and that just stuck with me because I guess in all of this, all you can ever say is everyone is doing their very best to make the right decisions about a human being. And they were right there with us the whole way. And I don't know what would have happened if she didn't open her eye the next day. Thankfully, I'll never have to know. But then we just started the journey of you know recuperation and trying to move and and all of that stuff, but and we've made it to the path of being here.

00:10:22 Yelena Bodien

I'm curious about your reaction to what we see when we do research on lots of people who have had a brain injury like Marissa's, which is that on average, I think you mentioned that they were telling you to make a decision at Week 4, but on average that decision is made three to five days after an injury.

00:10:40 Deb Jones

I was shocked when I started reading that and and even I read sometimes within 72 hours and they would never have done that no matter what they kept coming to me and saying it's not the time. We have a lot of work to do. We're figuring we're trying to figure her out. So yes, that's shocking.

00:10:57 Eli Pier

The second voice you heard was Dr. Bodien, whose research focuses on enhancing our understanding of severe injuries with the goal of improving both early and long term outcomes for the most critically injured patients. Dr. Bodien discusses a paper published in 2024 that provides greater insight into the decision-making process in the days following brain injury.

00:11:18 Yelena Bodien

So our primary question was to try to understand how people who passed away after life support was withdrawn after a sustaining a severe traumatic injury trying to predict how they might have done had a different decision been made. So if the life support was not stopped, what level of function, of recovery, could they have achieved at six months, 12 months post injury. And that's not an easy thing because once you remove the life support and somebody passes away, how can you try to predict, right? So we had a mathematical or statistical approach to this question. So track TBI is a large 18 center study that's done in the United States that collected data over a five year period, even longer actually on people who ended up in the emergency room with a brain injury and they followed these patients for a year and now and now past one year. This is a study that originated at University of California in San Francisco and has already contributed to an extensive body of literature. So the advantage of TRACK TBI is that they were able to accumulate a very large amount of data that we were able to leverage to answer this question.

And so our idea was to take a look at the patients who died in TRACK TBI because their life support was withdrawn, look at their clinical characteristics and their demographic characteristics. And then in the cohort of patients who did not have life support withdrawn, try to find folks that matched, patients who matched those who died from life support being withdrawn. And so we found a matched cohort, similar clinical characteristics, similar demographic characteristics, similar injury severity, but for whatever reason their life support was continued. In that cohort, we looked at their three month outcome and six month outcome and 12 month outcome and essentially said knowing what we know about this cohort that did not have life support withdrawn, what can we say about the cohort that did have life support withdrawn and how they would have done.

But, we also found that of the people who did not die, 30 to 40% had an outcome of being at least partially independent at home or better, so they were able to be left alone at home for several hours a day safely. They could take care of their basic, you know, needs for several hours a day. And that was at six months post injury. And so the, you know, we know that the trajectory for recovery in traumatic brain injury is much longer than six months as you said, it is a journey, and so you can expect those patients would have continued to recover long term. And what was really striking was that there was even a small percentage of patients who recovered to their pre injury level of function by 6 months, despite the fact that their injury characteristics, their severity of injury, looked just like the patients who had life sustaining treatment withdrawn. \

And so the outcome or the conclusion, the message here is that this is a grave decision. It is an irreversible decision and so making that decision at three to five days post injury in some cases is leading us to withdrawing life support on patients who would have recovered. And so perhaps that timeline or that process should move a little bit later so that as you said, we do give people the opportunity to demonstrate their potential recovery and we make that decision at some point later down the line.

00:14:41 Eli Pier

Doctor Williamson has extensive experience counseling patients and families affected by severe TBI. She shared valuable insights from her clinical perspective, highlighting key lessons and effective communication during these complex and challenging scenarios.

00:14:55 Theresa Williamson

So I think in terms of my own examples, I'd like to share like a lot of examples throughout my time to show kind of the difference and this is as someone who you know, I'm a neurosurgeon who studies communication, particularly in TBI and and an injury neurologic injury. This is just admitting to my own fault because I think it represents sort of, the in some ways, the errors of the field.

And so when I was a second year resident which is really novice, very you know, you've been through medical school. You're a doctor, you've done an intern year, but still you have a lot to learn, obviously. And you haven't you start to take care of the neurosurgical service as the on-call resident and so you're seeing patients around the clock often independently, but always with, you know, the mentorship of a you know, senior residents and and then attending. And so you know I would have, because you're the one that's physically there often, you know, often. I would have these conversations with patients and this is really what drove my interest in this research because I would realize wow, like I'm having a life or death conversation. Then they're going to make this decision in 15 minutes and like, frankly, I don't know a lot about this data and it feels really easy for bias to creep in, right?

And so we would see a lot of, you know, differences in the way patients would respond based on their religion, or based on their race, or based on their trust of a medical system particularly for, you know, black patients at a large southern institution. And so I think that for me, that became super interesting. And one of the examples was, we had a conversation with a African American family about a young man who was in a minimally conscious, actually at that point, I don't think he was respond to that all, and we had done EEG and we had seen, you know, for the most part we thought that this patient's prognosis was extremely poor. And so I led the conversation. And we talked with the family and I remember like the other brother, they were twins was like, you're wrong. I have twin ESP and he's gonna wake up. And I was sort of just like, like if you wanna just, you know, keep going. That's like an option. We can do this. And that patient walked out of the hospital. You know, I always use that example for our residents to just remember that humility is so important. And if this data shows us anything, it's that it's critical, critical, critical to be humble about our decision-making and to be open to errors in our judgment because they're we just really don't know and we can't predict it all.

On the other end of the spectrum, I've had conversations with to since being up here on faculty and and knowing substantially more who are really troubled by this type of data, and I think that that piece of this is super important. So you know when you talk to a family of someone who maybe is, I’m going to sat in their 80s has a severe traumatic brain injury is, you know, minimally conscious is you know overall not doing very well. And you're talking to them about a surgical intervention. And you're saying, you know, trying to help them understand what this process and what this whole perioperative period would look like, which can be really, really difficult. And when you're doing a year or two of recovery and you are, you know, 80 years old or 85 years old, that can look extremely different as you guys know, compared to, you know, a 75 year old. So and those types of patients, you know I I have had conversations that have stuck out to me where it's like can you please just tell me it's OK to to, you know, transition them to comfort because I feel really guilty knowing that there's like some potential chance but not wanting them to put them through all this.

And we do have a lot of patients where, you know, they'll start with the initial surgery, but then a few days later, it's like, you know, this is very clear that this is not going to be in line with their goals this process. For surgeons, we don't like to see that, right? Like we don't like to see OK, I did, you know, I I put someone through a big operation, pain, etcetera and then, you know, maybe this wasn't actually in line with their goals. And so I think for for me while I get you know, obviously as part of this data and you know excited about the that there are several patients that could end up with a, you know more positive outcome than we think, I also always interpret it with caution, of really still making sure we are in line with the patients' goals and that we don't you know sort of pressure them to do something that's not goal aligned during that process.

The waiting is really difficult, right? In terms of that period of time may mean that, you know, lots of people don't have access to, you know, a a strong rehab facility or rehab resources that can come to their home. They may live in a place where they're actually just aren't, you know, home health PT people, which I didn’t really, that didn't really dawn on me until I started having patients calling and being like, oh, yeah, you put this order in for home health PT, but like, nobody comes because I live in rural Maine or, like, rural New Hampshire. And and there's, you know, there's no one to actually do that rehab. And so, you know, people are not getting some of those services or they're seeing their loved one, you know, not respond, not be able to eat or feed themselves. And and it's, you know, that is really a difficult, difficult process that I think for us in some ways we get used to, you know. And so we're like, oh, yeah, just another three months, you know, or another six months. And so I think it's, you know, thinking about that period of waiting as well and how we can support families and how we can give them some type of information on a more day-to-day, week by week basis about how things are looking. Because I do think, sort of saying sometimes, OK, we're gonna wait till six months and I've had this conversation with our team a lot. It's that's a long time in that in this type of scenario.

But then I think it's also critically important in patients that are historically marginalized that we have more advanced conversations and so, involving little bit of extra resource in terms of having those conversations to make sure we're doing what is right for the patient is important.

00:21:19 Yelena Bodien

It's complicated and it and it's only going to become less complicated if we have more research and we have more data and I and I don't want to to make it sound like what this paper found was that every person, you know, I don’t want families to think families who made a different decision than yours that they made the wrong decision and that their loved one would be back to their normal self had they made a different decision. Probably, in most cases, you know, families are making the right decision based on what they know in the moment. Doctors, as you said, are trying to do the best that they can.

And there's nobody, really. You know, you don't want to put blame on anybody. Everyone is doing the best that they can. So I don't want it to sound like the paper is saying that, you know, we're always pulling the plug too early and everybody's gonna recover and we're doing such a horrible job. That's really not the message. The message is, could we be doing a better job? Could we be making slightly different decisions? Not drastic. Not everybody gets life support forever and ever and ever. But could we be making some slight modifications to to the way that we think about prognosis and to the way that we think about how certain are we really a day three that we know what's going to happen six months a year further? You know are we really certain that this is the right decision, do we have to make that decision today? Could we make that decision in two days or three days or four days? What is the external pressure on us? What are our own internal biases? You know, can we wait? And that's really all this paper saying is just consider whether or not it would be appropriate to wait a few days, maybe a couple of weeks to make that decision you know, before you know, you can make a decision and can't go back.

So that's really the message of the paper, is that we have evidence that probably we should be waiting a little bit longer in some cases. And it is, as you said, it is really humbling, and it is really difficult. And Doctor Williamson is in a position where she has to talk to these families every single day and make, help them make decisions every single day. It's it's complicated and we need a lot more research and a lot more resources to try to understand this better.

00:23:20 Deb Jones

You know, I'm so happy to know research is going on because it hopefully will make those decisions easier in the future. We just need to keep learning and keep researching. It doesn't mean anybody did anything wrong in the past. They did the best with the knowledge they have, but we just need to keep learning and and going from there, I think.

I do believe bringing families in and the emotional piece to it is huge. I think that's a huge piece of how can hospitals, doctors, nurses, support the families as they're going through this and guiding them and keeping them in the loop. They're a big part of this. So I I do think that piece of the family network, it does take a village. It takes all of us to make this happen.

And the one other thing I will tell you is that anxiety comes along with this hugely when someone comes out of a coma and they don't know what's going on in their life, and she's had a lot of anxiety, especially when she knows she's going to be alone at night. And what what one of their physical therapists did one day is they brought in dry erase markers and they wrote a message to her on the window. And when I came in the next morning, all she did to all my daughter did to me is point to it and say look at that, that helped me make it through the night. So since then, everybody that comes in the room her, her windows are plastered with, you know, sayings and you've got this, and we love you and all of that sort of thing.

On our ride down here today, I asked my husband, do you think our daughter has quality of life right now? Because sometimes I wonder she can't do a lot of things on her own. I do think she has great quality of life, but I wanted to hear what he said, and he said, you know what? She has love, she loves. She's talking to her people. She's under the she's understanding them, she's interacting with them, she's making decisions. She's telling preferences, even in what she wants to eat, small things, but she's able to do that. And he said how? How would we ever take that away from her? That's quality of life.

Every single day there's been something that we can celebrate with her and we just have to keep that going, that's all. And it's the little things. It's it's the little things.

00:25:40 Eli Pier

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The Finding Strength production is a collaboration between the Rehabilitation Outcomes Center at Spaulding and our Model Systems, the Spaulding Harvard Traumatic Brain Injury Model System, the Boston Harvard Burn Injury Model System and the Spaulding New England Regional Spinal Cord Injury Model System Center, all funded by the National Institute on Disability Independent Living and Rehabilitation Research. The material presented here is for general informational purposes only.