Hello, my name is Orlando Garner and I am presenting what disability in the ICU looks like and what is the spectrum of this patient population that we might encounter. I am currently an intensivist at Midland Memorial Hospital and a clinical associate professor at Texas Tech University at the Furman Basin and I mainly deal with adult patients, but as many of you, I have also had to take care of patients who had chronic illness that was onset of childhood who now need care in an adult ICU. And basically this is kind of part of what this talk is going to be about. I have no conflicts of interest to disclose. The objectives for these talks are going to be basically defining what a disability looks like, helping us talk about what quality of life can look like for different people. What does transitioning from childhood chronic critical illness to adulthood and best ways we can describe or communicate with our patients and their relatives in the ICU. So what is a disability? It's defined as a physical or mental impairment that substantially limits one or more major life activities or a record of such an impairment or being regarded as having an impairment. What's remarkable to me about the American Disability Act is that this was barely passed in 1990 and prior to that, people with disabilities were discriminated for having this disability, were discriminated for having wheelchairs and they were unable to receive care in health care facilities. They were unable to sit in certain restaurants and they were unable to have the same access or opportunities as people who have normal abilities or who are not disabled. And the other remarkable thing is that this was not something that dawned upon society that should be fair or that we should protect this marginalized community in particular. This was something that had to be fought for by the disabled community to be passed into law. We can see how hard these rights were fought for in this picture illustrating the famous or infamous Capitol Crawl where many patients from the disabled community ditched their wheelchairs and crawled through the stairs of the Capitol to prove that they are playing in a different level field because they couldn't even protest because there weren't any ramps for their wheelchairs to go on. And I think the most remarkable thing is that the person that you're seeing here is an eight-year-old boy who has been disabled for a quite significant portion of his young life and he courageously goes up to these stairs to fight for his rights and his future and for the ability to have equal opportunities as their abled counterparts. And one of the quotes that he said or one of the quotes attributed to him is that he was no longer willing to be discriminated whenever he went to restaurants where they would tell him that he was not able to receive service there because of his wheelchair, which is something that is unheard of now. But prior to 1990s, this was totally feasible in our society. Does this mean for us as health care providers? Well, there was this survey that was mainly done on outpatient physicians, Ietsoni and her colleagues, asking them if they knew what the responsibilities were under the Americans with Disabilities Act. And it's remarkable that almost a third of physicians knew little to nothing about what the responsibilities were within this act and that a lot of them did not know who pays for these accommodations and had a lot of fear of being litigated against for not because of this Disability Act. So this kind of illustrates how little or how deficient our knowledge is and what our responsibilities are for disabled patients. Now, this was done in outpatient settings, but when we are confronted in inpatient settings, what does that mean for us? And it's very difficult for us as ICU providers to focus our responsibilities of this act when we make a lot of decisions about whether to offer aggressive care or pivot towards comfort care based on what is quality of life and what is the possibility of patients returning to that quality of life and how we define quality of life. Now, I'm going to show you a video about an unfortunate event that happened during the beginning of the pandemic of a patient who unfortunately suffered a cardiac arrest and developed an anoxic brain injury and became quadriplegic who contracted COVID. And now the ICU provider is discussing with the family about whether if the patient qualifies for having or getting remdesivir or not. So. So what brought this video to my attention was a tweet by Steven Spahn, and you can see him here, who is a disabled person who's also an advocate for disability rights and who happens to be a gamer. And that's where he puts most of his energy in. And he says that here, and I think this is what the most remarkable thing is, is disabled people live their entire lives in fear that one day a doctor will decide we just aren't worth it. And then he further illustrates the point by saying, I have tubes coming out of my body. I happen to like my life and without them, without these tubes, I'd be dead. And then this is further illustrating how different or difficult, sorry, is defining quality of life from one patient to the other and how different people perceive the meaning or the enjoyment they get out of life. And what is quality of life? And this is how the World Health Organization defines it. And as you can see by reading this definition, this is a very broad, subjective definition, right? And it varies from person to person, from location to location, from culture to culture. This is not a black and white definition. Quality of life can mean different things for different people. And for us in health care, it means a completely different thing because we base what is quality of life, whether disease is present or not, and how disease affects functional status. And we often explore patients' preferences and goals of care. By asking them questions with regards to their functional status or asking the family's questions about what the functional status is in the sense of how many miles do you walk a day? How many flights of stairs can you walk or climb? Are you able to talk on the telephone? Are you able to pay the bills on your own? We kind of gauge what a person's life is based on these scenarios. But what happens when we're confronted with a person whose functional status is different, whose functional status is definitely not one of an able person, right? So we're focusing our observations of quality of life through the lens of ableism. And that really puts our patients who are disabled at a detriment. And one of the things that we have to consider is that quality of life is not a static thing. It's not a single trajectory in a period of life. And then we can see this by Kalman, who initially proposed this theory of quality of life in cancer patients. But we can see here in this top line that these are what our expectations and values are for quality of life. And then we can see this line with the peaks and valleys here of how actual reality goes for us. We have moments where our life is at its peak and then we hit a valley and then we hit a peak. And you can see that between these peaks and valleys and expectations and realities, there is a gap. And when our lives is at their peak and our expectations for what brings us happiness and enjoyment meet, there's a smaller quality of life gap as opposed to when we're faced with an adverse situation and we do not adjust our expectations of life. There is a larger gap. So that means there is a gap in our quality of life. Now, as we can see on the next lines here on the right hand side, that when we taper our expectations of quality of life to where our reality is and we can kind of meet these two lines together, then our gap diminishes. We are incurring in what seems to be a better quality of life. And this is what kind of happens when we're encountering patients who have a disability and have a disability for a long time. Their expectations of what brings enjoyment in life and what is their reality has, you know, met and they can find enjoyment in where their current reality is. And we have to frame their decisions and what their expectations of care are based on these new expectations that they have set up for themselves based on their reality. Why is this important? Now that we are in the midst of a pandemic that shocked the world to its core and that we were concerned about how our resources or finite resources might be affected, there were many states that place policies that place disabled people at a disadvantage. And I think the most egregious one would be Alabama here, where you can see that the state plan, which has now been replaced, initially said not to offer mechanical ventilators to support for patients with profound mental retardation, moderate to severe dementia and severe traumatic brain injury. And why? Because we are expecting that their quality of life is not up to standard, not up to standard through the ablest lens. And we know in the past, people with disabilities have often been discriminated against in health care, all the way from the unfortunate experiments of Mengele in World War II to now. Right. So we have a trajectory of patients who have been disabled, who have been restricted by the medical community. And this is an example of how we can fall, albeit unintentionally, into these patterns of the past. And even here, and you would say, well, Alabama is more of a conservative state. But here in New York, where it's a liberal state, they had the disabled people stated that the 2015 allocation guideline will disproportionately disqualify people with disabilities from receiving a ventilator. So this is a thing that happens within different contexts, you know, that people with disabilities are placed at a disadvantage because of what we perceive their quality of life to be. And our vision of quality of life needs to be adjusted for what they perceive their quality of life to be. And this can only be bridged by communicating with them what their preferences are and finding out what they expect out of life. And if the measures that we're going to give them are compatible with that expectation of life. Further illustrating the point is here, the study by Koyama and colleagues who compared intellectual, sorry, individuals with intellectual disabilities or developmental disorders who had COVID-19, and they compared them with either individuals who did not have this disability, but had some other disability. And then Model 3, which you can see here, compare them with people without any disabilities. And then we can see that patients with Down syndrome, autism spectrum disorder, or any intellectual disability were admitted to the ICU more often than not. They required mechanical ventilation more often than not. And they were in the ICU for longer than their non-disabled counterparts. And that is remarkable in the sense that we really don't have a good explanation as to why that happens. It might be that these people might live in group homes or they have some other comorbidities or an altered immune dysfunction. But this is a group of people who are severely at risk for contracting COVID-19, developing severe illness and being in the ICU for a prolonged period of time. And we have not made any significant guidelines or recommendations as to how to best take care of these people. And we're trying to put the guidelines for people without disabilities into the care of people with disabilities. And this might not fit all too well, right? And now viewing Down syndrome as patients here who had pneumonia, we can see that whenever they acquire pneumonia, they require ICU admissions more often than not. Although this seems to be higher when they're teenagers, even once they transition into adult, it still requires a lot of admissions into the ICU, which bears the question. So these patients went from pediatric ICUs and are they transitioning to adult ICUs? And the question seems to be that patients are not transitioning from pediatric ICUs to adult ICUs. It seems to be that they're staying in the pediatric ICU. And we can see that as a patient with chronic childhood-onset diseases, as they grow older, they have more complex chronic conditions and it seems that their PICU mortality tends to increase. Therefore, it also seems that these patients tend to stay in the pediatric ICU setting rather than transition to an adult ICU setting. And there's many explanations for this, but it might be that these patients are not being able to be transitioned there and that maybe adult ICUs do not have the capability of taking care of these patients in the setting due to inexperience, due to not having enough comfort of taking care of these patients. Therefore, they are immediately placed back into the pediatric intensive care, which also places a strain in the pediatric intensive care because they're taking care of technically adult patients at that point, although they've been initially seen for the beginning of their lives in the pediatric intensive care unit. Now, what can we do to avoid conversations or communications with families going the way that they did in that video I played for you at the beginning is, well, we need to make sure what we're communicating to the family is something that seems reasonable in the sense that we are trying to align ourselves with values of the family and the patient. And I think one of the best better strategies is here what Taylor wrote in the JAMA Surgical Journal and how we can express about doing an intervention here called surgery versus doing supportive care and what are the best and worst case scenarios and what we think is most likely to occur. So, for example, taking the previous conversation as a template, we can say, instead of saying, well, you know, care is futile, we don't think this is going to work, we can possibly say best case scenario is he gets the remdesivir and he survives and goes out to the hospital. Worst case scenario is that we give him the remdesivir and he passes either way. And what we more likely think that's going to happen is that the patient, even if he gets the remdesivir, he might not benefit from it and he would ultimately pass regardless. And then we're not framing the conversation within the patient's quality of life. We're framing the conversation in what the patient's goals of care are. And we give them an option and we make sure that this is a shared decision making rather than just a very paternalistic point of view of you're disabled, you don't have the quality of life and I know better than you. I really like this table that was published in CHESS last year by Malik and colleagues and it kind of tells us or guides us what, you know, phrases to avoid that I think we've all said at some point and you want us to do everything, it's your decision, it's up to you, care is futile and kind of replacing them for things that are less abrasive, more open to conversation, but still pretty straightforward. For example, we don't believe additional treatment will benefit your husband as opposed to saying futile care, right, because futility is very hard to prove and also exploring what the family wants, you know, help me understand what is important to you and we will figure out what to do next, which is a more reasonable approach, more empathetic approach for patients who are feeling distressed from the medical community. So ultimately how we can improve, we already touched upon communication, I think communication between healthcare providers and the disabled community is of paramount importance, but I also think that exploring what the patient's preferences and beliefs and values is also very important because we cannot make decisions based on what we believe quality of life should be for a patient, but what a patient believes for quality of life is and if they can continue their same quality of life up to that point and then we need to continue to lobby for presence of the patient's families because they are the patient's advocates, they know the patient's best and they know what is the intrinsic value in their lives and what can or cannot be acceptable for their lives and we have to understand that many of these patients or disabilities might prevent them from communicating with us in the traditional sense and that they only might be able to communicate within their family, right, or throughout their family, maybe because they have some type of speech impediment or maybe because they have sign language or they prefer sign language communication or what have you and this is really important because that is the way where we create bridges rather than destroy and then ultimately what we need to do is lobby for significant systemic change at the institutional level or through our professional societies and this is why I'm really thankful for the Society of Critical Care Medicine for allowing me to give this talk because I think we need to come up with us as a critical care society but ultimately as healthcare in total try to improve the initial survey that we saw as to how does health professionals stand or understand better the American with Disabilities Act, how we can accommodate for these disabled patients that we encounter and how we can best provide care for them and how we can create guidelines to suit their needs from all the way from ethical considerations to sedation issues to therapeutic issues and how to make sure that when we have conversations we frame it from not an ableist point of view but from also the point of view of disabled person and why is this really important to me and the reason I care so much about the subject is because my son has autism spectrum disorder and I dread the day when I'm not there for my son to advocate for his healthcare needs to advocate for his quality of life and that somebody someday will say well he doesn't have much of a quality of life he's in care as potentially life-saving is refused and for somebody to say that my son doesn't have a quality of life it's false he enjoys playing with his sister he enjoys playing soccer in the yard he enjoys going to swimming lessons he enjoys being with his mom he enjoys having pancakes every Sundays so he has happiness in his life he lives in the here and the now and his reality and his expectations of what makes him happy perfectly align so this is for me why it's important that patients with disabilities are also engaged in our society of critical care medicine and that we're able to provide adequate care for them and not just think of them as not having any quality of life when in fact quality of life can look like many things to different people thank you for your attention and again sorry for my broken voice

disability

ICU

healthcare providers

Americans with Disabilities Act

communication

quality of life