Skip to Content (press ENTER)

Header Skipped.

Season 1, Episode 3: Recovery After Moderate to Severe Brain Injury

April 3, 2023

In this episode, we discuss our ability to predict outcomes after moderate to severe brain injury.

Jump to transcript >

Episode Guests

Dr. Joseph T. Giacino, PhD

Dr. Joseph T. Giacino, PhD is a neuropsychologist at Spaulding Rehabilitation and Massachusetts General Hospital in Boston Massachusetts. At Spaulding, he directs the Rehabilitation Neuropsychology Service, Disorders of Consciousness Program and Neurorehabilitation Laboratory. At Harvard Medical School, he is a professor of Physical Medicine and Rehabilitation and teaches neuroethics at the Center for Bioethics. He is adjunct professor in the Rehabilitation Sciences Doctoral Program at the MGH Institute of Health Professions. His work focuses on developing more precise assessment methods and effective treatment interventions for individuals with severe brain injury. He serves as the director of the Spaulding-Harvard Traumatic Brain Injury Model System.

Nicole Godaire

Nicole Godaire is chief executive officer of the Brain Injury Association of Massachusetts (BIA-MA) and has been with BIA-MA since 2005. Nicole’s passion is advocating for the brain injury community, improving access to more programs and services for individuals with brain injury and caregivers in the Commonwealth of Massachusetts. Nicole’s relationships within the provider community have made it possible for BIA-MA to increase brain injury awareness and close gaps in services across the state.

Tracey Macarty

Tracey Macarty is mother to Will Emery, who lived with a traumatic brain injury until his passing in 2018. Will was an avid car enthusiast, always tinkering with his numerous vehicles. He loved playing drums with his band Arm the Hopeless. Above all, he loved his family and friends and you never walked away without a smile on your face. He guided his mother through the most harrowing time of her life, giving her life purpose. He always made sure he told her, "I love you more." Tracey was a staunch advocate for her son and hopes to continue spreading awareness and compassion for people experiencing traumatic brain injuries.

Episode Resources

Episode Articles & Related Research

Advocacy, Education & Community Resources

If you are interested in one of the articles highlighted on the show, but are having trouble accessing it, please reach out to us at


Shonali Gaudino, OT, Host, Producer, Co-Creator

Chris Carter, PsyD, Guest Host

Chuck Clough, Editor

This production is a collaboration between, and partially funded by, the Rehabilitation Outcomes Center at Spaulding and our Model Systems: the Boston-Harvard Burn Injury Model System (NIDILRR Award #90DPBU0008), the Spaulding-Harvard Traumatic Brain Injury Model System (NIDILRR Award #90DPTB0027-01-01), and the Spaulding New England Regional Spinal Cord Injury Model System Center (NIDILRR Award #90SIM0017-01-00).

Transcript of Episode 3

Tracy: (00:00:00) I remember crawling up on the bed with him and they’re saying you know, he can't hear you; he can't this and that, and I said, “don't tell me what he cannot do. You tell me what YOU can do.” And, you know, they kinda took a step back and I crawled up on the bed with him and I whispered in his ear: “I will always be with you every day to get you through this.” And I held true to that word, eight years.

Shonali: (00:00:29) 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 Shonali Gaudino. I'm an occupational therapist and have been working at Spaulding for over a decade. I'm now the Administrative Director of the Rehabilitation Outcomes Center, and I'm on a mission to build bridges amongst our community of clinicians, researchers and people with lived rehabilitation experience. I'm also joined today by Dr. Chris Carter, the primary psychologist on Spaulding’s Brain Injury Program, as well as director of continuity for our brain injury and spinal cord services. He has been specializing in rehabilitation and brain injury for over 25 years, and always has thoughtful and insightful things to say, so you'll occasionally hear him joining us for these podcast discussions.

In today's episode will discuss recovery after moderate to severe brain injury. We're joined by Joseph Giacino, a neuropsychologist at Spaulding rehabilitation and Mass General Hospital. He directs the rehabilitation neuropsychology service, the disorders of consciousness program, the Spaulding-Harvard Traumatic Brain Injury Model System, and he runs a neurorehabilitation laboratory. He's professor of Physical Medicine and Rehabilitation at Harvard Medical School and teaches neuro ethics. He is adjunct professor in the Rehabilitation Sciences doctoral program at the MGH Institute of Health Professions. His work focuses on developing more precise assessment methods and effective treatment interventions for individuals with severe brain injury.

We also are joined by Nicole Godaire. She is Chief Executive Officer of the Brain Injury Association of Massachusetts, and has been with the BIA since 2005. Nicole's passion is in advocating for the Brain Injury community, improving access to more programs and services for individuals with brain injury and caregivers in the Commonwealth of Massachusetts. Nicole's relationships within the provider community have made it possible for BIA to increase Brain Injury Awareness and close gaps in services across the state.

And finally, we're joined by the voice you heard at the top of the episode Tracy Macarty. She is mother to Will Emery who lived with a traumatic brain injury until his passing and 2018. Will was an avid car enthusiast always tinkering with his numerous vehicles. He loved playing drums with his band. He was Tracy's youngest child active in sports in high school, and he started with the New Hampshire Army National Guard until needing to return to home to help Tracy when she had fallen and broken her leg. He worked in construction to put himself through school for Criminal Justice at night. On his way to work one morning, a tractor trailer dropped two tires and hit him flipping and ejecting him from his car. Tracy was a staunch advocate for her son made obvious as we hear her describe the first couple of days in the ICU.

Tracy: (00:03:46) I came out of the ICU room and there was a nurse waiting for me. And she pulled me aside and she said, “Would he want to live like this?” And I said, “We're gon’ find out. I'm not even 24 hours into this yet.” The next morning was the meeting with the whole team and my whole family and the neurosurgeon was there, and he said, “This could be a very long haul for you – 10 years minimum.” And I said, “I don't care if it takes 20 years. He's 19 years old. You do whatever needs to be done. And you do it now.”

Shonali: (00:04:32) We asked Dr. Giacino to give us a brief history lesson on assessment and prognosis approaches for severe brain injury.

Joe: (00:04:46) There is no specific test for consciousness. I start with that because that is probably what people look in trying to establish prognosis. If somebody regains consciousness after being unconscious, there's going to be a much more aggressive approach, because the expectation is that that hurdle has been crossed. But we don't have any specific test for that. So we rely on brain imaging, which has marked limitations and, and that won't tell you whether that person is going to recover consciousness or not. So mostly what we will rely on is bedside examination. There isn't a uniform approach to doing the assessment. There are two kinds of assessments that get done at the bedside, in the trauma center in the ICU, in the acute care hospital: qualitative assessment, where I have my own procedures, I might change the examination, each time I do it based on the patient that's in front of me; I select what I want to do, and I determine what the criteria or the parameters are for saying, I saw a certain behavior, or I didn't. The other approach, the quantitative approach, is standardized. So, scales have been developed to go looking for specific behaviors that are tied to consciousness, and then to some extent tied to subsequent outcome. Is there a specific criteria in what I observe, that tells me whether or not that behavior is present? And that leads to a score, there's still a lot of there's still subjectivity in that because it's, I'm still using my eyes is no, is no machine I hook up to, you know, read a pulse, for example. But the point is, it's cleans up the examination. So what we know now is if you use a standardized approach, you're gonna get more accuracy for diagnosis. And that's super important, because we now know that diagnosis actually has a lot to do with prognosis. So there are different disorders of consciousness. There are differences in outcome based on which of those disorders you have when. The most common timeframe for the decision – in patients with Traumatic Brain Injury across the age span – the decision to withdraw life support is made within 72 hours. We don't have prognostic indicators that are precise enough to tell us within 72 hours, let alone weeks, who's going to be able to A) recover consciousness, and for those who do, how far they're gonna go. So we have a big disconnect that those decisions getting made to that early without really having reliable indicators. And that's the challenge that we're faced with right now. And why families are really burdened with holding their ground in that setting, where they're very vulnerable, because they're not the expert. But it just doesn't sit right, that we know that early. And the truth is we don't.

Shonali: (00:07:57) And so a lot of these articles are making the case that we should not be making these decisions that early. The quote from the article is that severe impairment in the short term did not portend poor outcomes in a substantial minority of patients with moderate to severe traumatic brain injury.

Nicole: (00:08:16) One of the most important things for me in terms of outcomes is really about the family and the individual with the lived experience, what they bring to the table, and what their hope is for the outcomes. Generally, we all have some sense of bias on what we all believe someone's life should be or shouldn't be. And I think one of the most important things especially knowing that not everybody has access to rehab, that when you're talking about outcomes, it's that the road to brain injury is a long road. And what happens one day, two days a month later, isn't always indicative of whether or not someone's going to believe that they actually have a quality of life.

Shonali: (00:09:05) When preparing for will to leave the hospital, Tracy learned about the different levels of care. Inpatient Rehab Facilities, Tracy's first choice, required three hours of active participation in therapy a day. So instead they landed at Spaulding’s long term acute care hospital. She described the treatment she received during that prolonged period.

Tracy: (00:09:33) We stayed there for quite a while – they put a trach in, they put a IVP filter in, they put a shunt in, but he wouldn't wake up. And then I had the option of a couple of places, and I chose Shaughnessy Kaplan in Salem, which was bought by Spaulding, and that's when the work began. And he woke up 363 days after the injury. And I'll tell you every day of those days, those girls had something from Dr. Giacino. And they worked with him, he was not awake. I would walk in, he'd be sitting on the edge of the bed, and they'd be moving him. I'd walk in at night, his speech therapist would be in there in the dark whispering in his ear. His PT would lay on the bed with him, and stretch him and tell him you can beat this, we're all going to help you, you can beat this, and I'll be damned, he woke up 363 days later. He got excellent care. And they had him up walking, they had him riding a bike and his eyes were not open. They did music therapy, they had pet therapy for him. And you know, he easily could have been excluded. But those girls and that doctor there never gave up on him not for a minute.

Joe: (00:11:06) The best estimates of the percentage of people with moderate to severe traumatic brain injury who get to have inpatient rehabilitation, are admitted at some point, is 15%. 15 out of 100 people. And 15% of people in those settings means 85% are on their own.

Chris: (00:11:26) Is that 15%? Is that nationwide data, is that local data?

Joe: (00:11:31) No, that's national data.

Nicole: (00:11:33) So in Massachusetts in a, in a given year, it's about 8 to 10 thousand people get inpatient stays, and there's about 60,000 people that go through the emergency department and go home with no support and no services. But it's only 12% of that 8 to 10 thousand that actually go go on to rehab.

Tracy: (00:11:52) I had been to two other facilities that knew nothing about TBI. And both of them we had pulled him out of.

Joe: (00:12:02) In many ways the inpatient rehab hospitals are, their hands are tied, by this so-called ‘three-hour rule’ to get authorization for inpatient rehab, you have to demonstrate upfront that this individual is going to be able to tolerate three, and actively participate, in three hours of rehab. So if you have a disorders in consciousness, you cannot actively participate. So, and this actually emanates from Centers for Medicare and Medicaid. I think it's an inadvertent or an unintended consequence of how that policy is written.

Chris: (00:12:39) Part of the solution that we've come up with is to be able to start them off in our LTAC, which doesn't require that level of participation. And if the individuals build the tolerance and are able to begin to participate in the three hours, then they can get evaluated for participation in this in this program. And if they're, if there's support for it, we're able to bring them in here and extend their access to this kind of care. But that's, we're pretty unique. In our system, we have what's called an LTAC: a Long-Term Acute Care program. These are generally people who have more medical acuity. And so the focus is more on medical stabilization, augmented supplemented by the rehabilitation. So from a brain injury perspective, it's really addressing all of the complications that can arise with a with a brain injury and sort of create a medical biological environment that allows the brain to recover enough to begin to participate in a more rigorous program.

Shonali: (00:13:45) And part of that might be that, you know, it's sort of what inspired Joe you to really spearhead this program where within the Spaulding Rehabilitation, we start off people who are going through disorders of consciousness at that long term acute care level, and then bring them over to the inpatient rehab. And that is a good process to be to, to let people go through right so that they get the right amount of care the right time for what they need.

Joe: (00:14:13) I think it was the best way for us to get around the problem. But…

Shonali: (00:14:19) so, if you would, if you had the option, people would just be the whole the whole trajectory would be inpatient rehab.

Joe: (00:14:26) Absolutely. I mean, the analogy that I use all the time, between severe brain injury and brain cancer. So imagine, you know, being diagnosed with a glioblastoma, so it's a very aggressive tumor and put the person with the very aggressive tumor next to the person who has traumatic brain injury, severe traumatic brain injury, these are both, you know, you didn't know it, you were functioning for the most part fine one day and then not the next, imagine if the message to the person who had the brain tumor was: “We can’t offer you services. Either because the prospects for your recovery are very poor, or, you know, we don't think you'll as as the tumor progresses, you'll be able to engage in therapies. So we really can't do anything for you.” But that's the message that we give to people who have traumatic brain injury.

Chris: (00:15:30) So you know, the history, if you go back 30 years to brain injury rehabilitation, you know, when I started out, we would have people for literally years inpatient, and they would get to a point where they would be able to - we were doing vocational work. In the hospital, there was a patient-managed coffee shop, it's just mind boggling sometimes. We know so much more now about what the potential for recovery is than we did then. And yet, the amount of rehab that's available is so much less within that the lengths of stay going from – I mean six months was a pretty typical number back then.

Tracy: (00:16:14) But it makes me wonder what the difference would have been if he had come directly here.

Chris: (00:16:20) Let's, I mean, your description of, of his early course, too, is an argument for an environment like this, or the LTAC, because there's a lot in the way of his brain recovering. And he really began to take off when a lot of those accompanying issues were taken care of, the seizures were being managed, and all the rest of that, and now the energy could go to the brain to recover and began to see him moving forward. So if he had come in with all those complications, would he have reached that point sooner? It's hard to know.

Joe: (00:16:56) One of the I think, most frustrating aspects of the current state is that the three hour rule is not - there's no evidence, none, to support the three hours. That is an arbitrary… I don't think anybody knows exactly who established it, where it came from. But there's no evidence base to support three hours. Well, and later on the fact, you know, Will, would not have done well with three hours of therapy, because it would have been too stimulating. You have to meet the person where they're at.

Shonali: (00:17:40) After waking up will was transferred to Spaulding’s inpatient rehab facility.

Tracy: (00:17:48) He would open his eyes and look around, I could communicate with him. Therapy didn't have any trouble communicating with him because they just wouldn't take no for an answer. And he did it. They had him in the shower, they got him in the gym. He got he was going out on field trips, he was you know, eating in the cafeteria. But he was still quiet. He had a speech therapist who would do the same thing. Just talk to him and talk to him and talk to him. I never shut my mouth when I was with him. I never sat down. We were making him CDs. There was always music playing in his room. I remember I was in his room here late one night, and a song came on that hadn't even existed before he got hurt. Now he had probably heard it on the radio, or the girls had it on one of the CDs… And he was singing the words. And I was saying how is he doing this? We didn't know. We don't know. And it was unbelievable. It was unbelievable. I mean, he went from nothing to where he was he was coming back. Was he 100%? No. Did I care? No. I had my son.

Shonali: (00:19:10) Tracy and Dr. Giacino go on to explain that the interdisciplinary team was able to bring Will to an important tipping point when they diagnosed a keratitis in his eyes that was painful and likely preventing his progress.

Joe: (00:19:32) So I hope you've got a little bit of the issue of the specialization here because it made a big difference. [Tracey: it made it an absolute difference] Because he had an undiagnosed problem that we were able to pin down here and it really was, [Tracey: that was his eyes] yeah, yeah he had a keratitis that was a really… so he was crying continuously. And crying can be you know, a function of the brain injury; there's really no mood associated with it, mood change, but he was crying a TON. We would wake him up and he almost started crying. And his and his eyes were all almost always closed, even when he was responding. Because he got to the point where we were speaking in full sentences. And then, with additional assessment, he had a condition that required surgical removal of these very painful filaments in his eyes. And was not long after that, that there was a dramatic change, really dramatic.

Tracy: (00:20:25) They said, they made him an eyedrop at the hospital, and every four hours those drops went in religiously. And slowly the eyes opened, his vision was fine. We had it all checked, [Joe: And the crying stopped] and the crying stopped. Yep. And you know, and so, I'm watching all of this after what I just went through at the hospital with him, the first 24 hours, we were there, of them trying to get me to remove life support. And it just wasn't gonna happen. And like I said earlier, I got him for eight more years that I would not have had, if I had listened to anybody. And I didn't listen to anybody. I fully acknowledge I didn't listen to anybody. And, until I came here, because I trusted this place.

Shonali: (00:21:13) What were the things that down the road, indicated to you that it was a good outcome?

Tracy: (00:21:19) When I got him home, he he did well. He was living a fairly normal life. He was drawing, he could write his name, he was cooking, he was going out to dinner, he was playing his drums, he was coming down here for outpatient therapy. And you could carry on full conversations. He he chose his TV stations, what he wanted to watch. He was showering. The catheters were gone, the feeding tubes were gone, the trach was gone, everything was gone. He was doing great.

Chris: (00:21:50) Shonali, you're raising a really essential question. Because, you know, listening to the level of recovery that he he achieved, by our standard metrics, we would still be identifying that he was still pretty significantly impaired, and wasn't able to participate in a lot of those higher level life activities of work, living independently driving, those kinds of things. But you're saying he had a good outcome? You were happy with the outcome that he achieved? Even within that?

Tracy: (00:22:27) Yes, he was I had just signed him up, he was going to volunteer at one of our local hospitals. We just signed him, and he was going to go in, and he was going to be doing the library things and delivering books to rooms…

Shonali: (00:22:42) Joe, maybe you can summarize a little bit about that article that talks about favorable versus unfavorable outcomes. And what the problem with that is and what that study sort of, or what that paper told us.

Joe: (00:22:56) The way that we assess outcome in traumatic brain injury is using the Glasgow Outcome Scale that goes through all eight levels where the lowest level is death and the highest level is return to baseline. That measure is basically required in all brain injury studies that are done. It is the only measure that the Food and Drug Administration in this country allows for drug and device studies. There are some problems, though. One is that what has happened over time is that it's been broken up into the categories that imply ‘favorable outcome’ and the ones that imply ‘unfavorable outcome.’ Well, where do you put the line in these eight categories? So it turns out that there's no agreement among investigators, so it varies from putting the line between seven and eight, the two highest categories meaning unfavorable is anything below, not returning to your baseline, to as low as drawing the line between category three and four, which is, people are still very dependent. That's a huge difference in terms of where that line gets placed, calling it favorable or unfavorable. The second problem is the bigger problem no one's ever asked the patients or their caregivers, “what do you think, is a favorable outcome?” So we are now going to study this problem. And we will, for the first time ask patients and their caregivers as well as clinicians, and investigators where they, what they think a good outcome is. And think about approaching this differently where we don't draw this dichotomous line, that's based on somebody's bias.

Shonali: (00:24:54) This might be a silly question, but Joe, what's your relationship with measurement, personally?

Joe: (00:25:04) I spend 90% of my waking hours doing something with regard to measurement, I think so no, my interests are in developing new measures, increasing the precision of existing measures, looking at approaches to measurement. When I started, which was, well over 35 years ago, there was one scale that was widely used around the world. It was developed, though, for use in the first two weeks, but I was in a rehab setting and a lot of the items on the scale didn't really map very well to where people were by two weeks out. They were missing a lot of things that I thought were representative of recovery. So in the late 1980s, we started developing a new scale, the Coma Recovery Scale – Revised that was designed specifically for this population to capture more subtle signs that had relevance to outcome. Now, it's 16 languages and is designed to, not replace the original scale, the Glasgow Coma Scale, but to sort of pick up where it leaves, but you know, it has many of the same shortcomings as well. So, you know, the point is that brain injury is, it effects multiple aspects of a person's function, multiple organ systems. So what's the likelihood we could develop a single measurement instrument to fully capture it? That's why the Glasgow Outcome Scale is used, because it's a global, gives a global picture, and it works very well for that. But if you're asking questions about whether a treatment worked, and using a global measure, you're probably going to miss effects of that treatment, because it takes a lot to globally change a person's level of function.

Shonali: (00:26:52) Nicole, what's your take on all of this, especially on the favorable, not favorable outcomes?

Nicole: (00:26:59) I think numbers are important, especially when you talk about research, and public policy and advocating for the population, it's really important to have information to be able to convey to legislators, thought leaders and policymakers making sure that individuals with traumatic brain injury have access to system supports and resources in the community. I think one of the most important things, especially after discharge, whether or not someone has access to rehab - Spaulding does a really great job with making referrals to the Brain Injury Association. We're able to work with people and focus groups, peer groups, and support group settings where a lot of our family members and survivors learn different ways to increase quality of their life, improved outcomes that can occur, whether or not someone's had formal rehab or not, but we would always vote for the formal rehab.

Music Interlude

Chris: (00:28:10) Question for you, Joe. During the course of… you've been doing this research for a long time, and been a principal investigator for many years. And it's sort of striking that finally now at this point, we're starting to look at what is the meaning of outcome to the people who are doing the outcome. Wondering how much of an evolution has taken place in terms of the voice of the people we're studying are becoming part of the group that's shaping that research. And so we're starting to ask more relevant questions that are relevant to the people that we're serving, as opposed to solving our own intellectual curiosity.

Joe: (00:28:54) I think it's a great question, Chris, because it's, it's a tidal wave now. The movement to engage people with lived experience in everything we do now, from research to clinical practice. I just came from NIH last week, meeting with NIH and the FDA and the Department of Defense and heard very loud and clear, very loud and clear that there's a mandate now to… so if I'm going to build a new measure, I can't build that measure, unless I have patient voice in the building process. Yeah. Those are not conversations that we had, even five years ago.

Chris: (00:29:38) I was gonna say, the recency of that is really interesting and intriguing, because the research that we were talking about before, where you have sort of an arbitrary sense of of what is a good outcome or not, runs up against the the disability bias that we see constantly. That there's a notion that if you're not 100%, good, you're no good. Within that it's the idea that the level of resilience that people and families, their ability to adapt and achieve a satisfactory level of recovery. You're very happy with the level of quality of life that your son achieved. There was no point where you said, I'm sorry, I did this, or I regret now getting to this point.

Tracy: (00:30:28) And I don't know, how he would have continued. You know, what happened happened. He was shaving, making his bed. You know, he was he was back to living. And

Shonali: (00:30:41) you know, we were talking Tracy earlier about how, because of this tidal wave that Joe's explaining, it's going to become so much more important for people like you to be able to come back to us and engage with us. And is that going to be hard? What does that I mean, what is that like for you to come back?

Tracy: (00:31:02) I think I'm at the point where I'm a little bit better every day. It's never gonna go away. And it was not good. But I've slowly gotten back to my life as what it is. And I, I can't stand to see the stuff I've seen. I can't stand it. It's it's really, you know, and then I start questioning people like, why are you doing that? Well, that's what they told me. Well, they're wrong. Question them, don't take them at their face value. You know, you've got to you've got to advocate. So I think I'm okay. I do. I think it helps me. William would want me to do something with it.

Shonali: (00:31:53) I asked Dr. Carter to define ableism, and how it factors into deciding good versus bad outcomes.

Chris: (00:32:07) Ableism is having bias around individuals who have disabilities who have limitations, and the idea that they may need accommodations to allow them to perform in a normal environment, that somehow that's less than, and the quality of their performance, the value of their work is less, because it requires the support of environment and why should we have to provide that for individuals. This whole notion that unless you're at a seven or eight, that's not a good outcome. Who’s to say? You continue to be a parent, you continue to be a partner, you continue to be involved in the community, you continue to exercise your body as an athlete, you continue to have a creative life within that, not the one that you had. And yes, it may be some limitations. But the idea that unless it's 100% it's not any good, well, that's what ableism is.

Nicole: (00:33:04) And I think it's always a question of who's judging that scale.

Tracy: (00:33:13) The seizures would never anything major, but I always knew they could be. And he went years without one. Years. And we thought we were past it. And then September 3, we weren’t past it. And that's what happened four years ago. Yeah. But you know, no parent should be 24 hours in, to something like this, and be told the things I was told. And you know, somebody else would have said, okay, and given up. And I look at it that I didn't, I do not regret what I did. I know he went through a lot. But it was worth the extra eight years I got with him.

Shonali: (00:34:11) Tracy's story is a powerful example of what Dr. Giacino and his colleagues have been working on. In reviewing literature on favorable versus unfair favorable outcomes they write, “None of the studies considered caregiver or patient perspectives. We believe this is paternalistic and disregards the foundational principle of respect for persons, which stipulates that those with diminished autonomy are entitled to special protections. Prior studies have shown that some individuals with mild TBI report a negative quality of life, while those with substantial permanent disability often report acceptable quality of life. This phenomenon known as the disability paradox, further emphasizes the need to better understand patient and caregiver preferences and perspectives on outcome after TBI.”

Shonali: (00:35:08) Talk a little bit about the ethics of how we make those kinds of decisions in a COVID world with limited resourcing.

Joe: (00:35:16) I know that there is a school of thought that says if we provide services to all of the people who have a need, and I'm just sorry about brain injury here, we'd overwhelm the beds in our hospitals and slots in our outpatient centers. That might be true, that might be true. But what's special about brain injury that calls for that argument to be applied to it, when potentially every other disease has that same issue. TBI is this big compared to heart disease, diabetes, COPD, etc. but we figured out how to manage the number of people who had those conditions. So I don't find that to be a compelling argument. What you're also getting at is rationing. That's a legitimate question that hasn't been reconciled. And it's one that we deal with, right? If a hospital has, you know, 10 ICU beds. And two people come in and vie for that bed, which one gets the bed? The one that you think is going to have the better outcome? One of the things that rehab is always criticized for in its research, especially if you're a specialized rehab center we are, if we show good outcomes, it's because we selected the best people, the people who most likely to improve. So we almost always have to address that criticism.

Chris: (00:36:49) Nicole, do you have the lifetime cost of treating or taking care of a brain injury survivor?

Nicole: (00:37:00) 1.67 million are the average savings in a person's lifetime for care costs from early and continuous access to intensive interdisciplinary rehab after hospitalization for ABI, and the range of savings is between 1.2 million to 2.27 million for for those when they had access to rehab less than one year post injury.

Shonali: (00:37:25) So said differently, when a person gets the full scope of rehab services that we have to offer in their first year, we are thinking that that saves on the order of $2 million in lifetime costs?

Nicole: (00:37:43) And in addition, the costs of rehab are recovered within one to five years.

Chris: (00:37:48) So that becomes public money. And so if that money is spent on brain injury survivors, what has it not been spent on? At a time when we're trying to increase access to childcare, education, college, building roads, we listened to the State of the Union last night. Yeah, all of those items have have a paycheck.

Nicole: (00:38:10) Never mind the lack of workforce, the cost of the family, having to stay home, taking care of someone, and also the lack of ability to improve that person's quality of life.

Shonali: (00:38:27) This episode feels like it leaves me with more questions than answers. But maybe that's a good thing. Maybe that's the point. We might all want to start asking ourselves what would a favorable outcome after severe brain injury mean for me?

Shonali: (00:38:49) If you've enjoyed this podcast, please know that liking, subscribing and sharing is essential to sustaining our work. 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 Spinal Cord Injury Model System all funded by the National Institute on Disability, Independent Living and Rehabilitation Research. The material presented here is for general information purposes only.

Shonali: (00:39:25) I keep laughing and telling Tracy that I was I woke up at 2am last night and started reading about how to do an interview. And one of the things was to not really share too much about yourself. It's not about you, it's about the people that you're interviewing. But today is the 10-year anniversary of my mother passing away from a hemorrhagic stroke. So being able to talk about brain injury, feels good, and she was a realtor. So I feel like I want to say thank you for the work that everybody does.

Chris: (00:40:43) I would say, you know, as a therapist, you're not supposed to do a lot of self-disclosing, because it's not supposed to be about you is supposed to be about the client. But there are times when it's extremely effective in an appropriate manner to self-disclose.

Shonali: (00:41:02) Done well?

Chris: You did well.

Shonali: Thank you.

Nicole: (00:41:03) I thought that he was going to analyze that.

Chris: (00:41:09) I charge for that service. I don’t give that away.