MAP: Medical Pathways for Success

Stop Calling It a Step Down: Disability Care Will Challenge Everything You Know

Frederick Nazario-Alvarado Episode 19

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Disability care isn't a step down; it's a step closer to people's real lives. ER Nurse Renata Bell shares what high-stakes care really looks like outside the hospital.

What if everything you assumed about disability care was wrong? In this episode, Fred sits down with Renata Bell, a Registered Nurse whose career spans critical care and emergency nursing across Australia and the UK. When she transitioned into an advisory role in disability and community services, colleagues were confused, but Renata wasn't stepping away from high-stakes clinical work. She was stepping directly into it.

In this episode, you'll learn:

  • Why disability care requires the same clinical judgment as emergency care, but with far fewer safety nets
  • How to recognize "soft vitals," the subtle behavioral signs of patient deterioration every healthcare worker needs to know
  • Why patients with disabilities are often receiving a lower standard of clinical care in hospital settings and how you can advocate for them
  • The power of curiosity and rapport before approaching any patient with a disability
  • How non-clinical staff are trained to anticipate risk and respond when no clinician is in the room
  • Why dignity is not a soft skill, it is a clinical safety net that directly impacts patient outcomes
  • How to protect your heart doing this work by celebrating wins and treating every challenge as an opportunity to grow

This episode will challenge the way you see every patient interaction and remind you that the most life-changing interventions don't always come with alarms.

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I still use my Littmann from 2011 because it lasts. This is the modern version of the one I carry.

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Renata

Policy can always sound really good, but sometimes it doesn't quite translate to practice. And sometimes it creates unnecessary barriers. And so what's really important in what we do is we consult frontline teams before we publish a procedure. So we will make sure that they are understanding what's written in the actual procedure, that it's practical, that it can be implemented. And if not, we take their feedback on board and we actually change that procedure before we publish it. And so we'll actually consult with frontline teams about what their challenges are, how they can implement procedures that we're proposing.

Fred

Welcome back to MAP, Medical Pathways for Success. I'm your host, Fred Nazario Alvarado. If you've been with us through this season, you know we've been talking about something that doesn't get enough attention in healthcare. Protecting your heart while doing this work. We've talked about grief. We've covered professionalism as armor. But today? Today we're going into a territory that most of us weren't taught about in school. We're going to talk about a whole population of patients who require the same level of clinical judgment as emergency care. But where the consequences of getting it wrong are quiet, cumulative, and devastating. Today's conversation is about dignity as a clinical skill. It's about risk management that has to be anticipatory because you don't have the safety net. And it's about why one of the most clinically complex areas of healthcare is often seen as a step down when it's actually a step closer to people's real lives. My guest today is someone whose career path might surprise you. And that's exactly why her perspective is so valuable. Renata Bell is a registered nurse working in an advisory capacity across disability and community services in Australia. She holds a bachelor's of nursing science and a graduate certificate in public health. Currently studying for a master's of nursing, majoring in chronic and complex care. And she's an experienced registered nurse with a career that spans critical care, emergency nursing, public health, and disability services. For five years, Renata worked as an emergency nurse. First in Australia, then in the UK, at St. George's University Hospital, NHS Foundation Trust. She worked in some of the most high-pressure, fast-paced environments in healthcare. The kind of places where clinical judgment has to be sharp, anticipatory, and often life-saving. But then she made a transition that many people in healthcare don't understand. She moved into the disability sector. And here's what's fascinating. Renata doesn't see that as a career pivot away from critical care. She sees it as taking those same critical thinking skills, that the same clinical judgment, and applying them in a space where the risk is just as high. But the support systems are far fewer. Today, her work focuses on advancing system level practice improvements and healthcare quality for vulnerable populations. She designs and implements clinical processes that are evidence-based, provides clinical insight into complex case management, and builds framework for non-clinical staff to recognize and respond to risk. She's joining us today from Australia to talk about something that rarely gets discussed in our medical assistant programs, our nursing schools, or even our clinical rotations. What it really means to work with people with disabilities in healthcare settings. And more importantly, why this work requires the same level of clinical excellence as any emergency room. But in ways we're never taught to recognize. So can you ping a picture for us of what that work was like? What did a typical shift look like for you?

Renata

Yeah, absolutely. I think if you've ever been in the emergency department, you have a little bit of exposure to what working in emergency is like. So if you've ever been a patient, you kind of understand just from patient experience how chaotic the emergency environment is. And and then amplify that times 10. So the uncertainty that you feel as a patient, we feel as clinicians. The minute to minute changes that you feel as a patient, we feel as clinicians. And it's very much a roller coaster and it's adrenaline. And it's one moment to the next. Your priorities are shifting every few minutes. You don't have a plan for how your shift's going to go because you have a different patient occur or come into your more ratio every minute, especially when you're working in emergency in the triage or in the resus section, which are the two areas that I tended to work in towards the end of my career. And so you kind of don't have a plan that you can't really be a perfectionist if you want to work in emergency. You kind of have to be a get-it-done person. And to some extent, you can be a perfectionist in the way that you, you know, have thorough diagnostic reasoning and things like that, but you can't be someone that obsesses over, you know, pretty uh, you know, some nurses pride themselves on their, on their um, their corners of their beds, the way that they make their beds, or on having kind of things done to a certain extent. Emergency is really about getting in there and getting it done. And I would compare it to I would compare it to playing a team sport and one that you get real dirty and you're really tired at the end of it, but you feel really accomplished. And that's how every shift in emergency is. It's a team sport. You you lean on your teammates, messy, it's exciting, it's exhausting, and you feel really accomplished, and you get to encounter more than one person on each shift, multiple personalities, different families, and you're touching different points of people's lives as well. So it's it's really special, unique, and very, very fast-paced, especially in the UK, which I worked for two years. I worked in one of the major trauma centers, one of the biggest hospitals and one of the level three trauma centers. And for that period, I had never really experienced how it how intense emergency nursing can be. And so for me, it was just kind of expected that if I got a break, it was a real good day. And if I even just got to have a drink of water and take two minutes to have a laugh with my teammates, it was a really good day as well. So yeah, I think that's probably a good way to picture it is a very, very messy team sport.

Fred

I mean, yeah, definitely. Emergency is a different beast altogether.

Renata

It is, yeah.

Fred

So, what drew you to emergency medicine and emergency nursing in the first place?

Renata

For me, I'm always I want to be an emergency. So in Australia, you have to do a postgraduate in medical and surgical before you're allowed to enter emergency. So you're not allowed to enter straight after university. And so I went and did my medical and surgical rotation, and I kind of knew I wanted to be in either emergency or ICU. I wanted to just, I wanted that, the the level of autonomy that you you get as a nurse in those those sections of the hospital. And that doesn't describe the medical and surgical nurses at all. They have this great continuity of care and enhanced relationship with their patients. But for me, I wanted to be either the first or the last hand you hold, the first or the last person to take your pain away, or the first or the last person to tell you it's going to be okay. And so it was for me, it was going to be emergency or ICU. And I wasn't quite sure which one I wanted it to be. And I ended up on a mixed medical and surgical rotation in gastroenterology and renal. And they were really critical patients that you had to kind of be able to interpret their blood tests. You were constantly checking their electrolytes, they would arrest very quickly. You know, they had uh hypervolemic arrests quite often after they returned from dialysis, and they were really critical patients. And for me, it was that experience of being like, oh, I can read their test and I can call the doctor and I can tell them that something's gonna go wrong and I can I can look for those subtle signs that are leading to a hypovolemic arrest. And and I could be that person that is that touch point between them and the clinicians that don't get to be at the bedside. And for me, that was really that was such an honor to be able to use skills that I could build to kind of save people's lives. And and I noticed that I had done a bit of no time transferring patients to the ICU, and a lot of the time they weren't conscious. And I was like, I want to talk to my patients, I want them to scream at me and tell me they're in pain, or tell me to F off, or or tell me thank you, no matter what it is, even if it's not always nice. I wanted to be able to experience, you know, the human nature that is nursing. So I I think after that rotation, I was like, yeah, ED is is where I want to go, and and it was absolutely the best choice for me.

Fred

Wow, that's pretty, that's interesting. Being able to put it together that way where your learning experience influenced you to go into that E D way.

Renata

Yeah, absolutely.

Fred

So you're working in this incredibly fast-based environment, and then you make the transition to the disability sector. What walk us through that decision? What prompted that shift?

Renata

It wasn't a conscious decision. Like many of the wonderful things that have happened in my life, it happened organically. So there was no point where I sat down and I went, you know what? I don't want to be a needy nurse anymore. I'm ready for a change. It was nothing like that. I I received an email and I was managing an urgent care facility at the time, getting to use my ER skills, you know, suturing, backslabbing, doing all the really cool things. At no point did I think I was going to change career paths. And I had a recruiter that knew me and had placed me in previous jobs before. And he just reached out to me, just, you know, by chance, thought, you know, this might be for her, and sent me an email. And I was on a late shift that day and, you know, a bit tired as you do get on shift work. And I received that email and it was really good money, um, eight to four shifts, so no more shift work. And it was a three-month contract, and he said, you know, give it a go if you want to. It's it just it screams you, it's it's it's you know, really up your education, it's a bit different. You'll get to work normal hours, you'll get more money, and you'll get to experience something new. You know, you you perfected ED now, you've learned all you can. Not that I think you can ever learn all you can, but I think I had kind of gotten to the the pinnacle of my career in where I I could. And yeah, it was a pivot. And I had to really think about it. I was very scared to do it, but I thought, you know what, it's three months. If I hate it, I'll come back. When so I took a role as a clinical nurse educator in disability and loved it. And it's forever changed my life. I never thought I would leave acute care or acute nursing, and now I'm so grateful I did. And what the fact that that means that I don't miss emergency nursing, I do absolutely every single day, but I get to still use those skills in a different way.

Fred

Yeah, I'd love to hear that that it happened organically because a lot of the time you hear it's mostly because people are just so burnt out, but the fact that it happened for you organically versus being burnt out and just tired of it is completely different and great to hear.

Renata

Yeah.

Fred

And the fact that you miss it too.

Renata

Oh yeah, every day.

Fred

But I want to dig into something you said you had mentioned in our previous conversation on LinkedIn. You said that disability work is often seen as a step down.

Renata

Yeah.

Fred

For nurses coming from emergency care. Can you talk about that perception and why it's so wrong?

Renata

Yeah, I mean, when I first told people that I was leaving acute nursing, there was a few kind of, what do you mean? I'm sure questions, particularly doctors that I worked very closely with and had a really good rapport with a deep level of respect in the relationship of the working relationship, that were very confused because they could tell that I was very passionate about diagnostic reasoning. I was very passionate about, you know, early pathways, starting treatment as quick as you could as soon as someone was in the center. And that seeing that patient through that journey right through to discharge, if you could, because the emergent care settings, because it's minor illness and injury, you tend to let, you know, get to see them discharge. And so it was a lot of confusion about why would she give this up? She loves this, you know, she runs this place. This is this is her. And it was seen as almost a step down because they thought you're not going to use those skills, you know, you're not going to be in the grunt of it doing snitches and backslabs and taking pain away and holding people's hands and and they were very confused. And I think a lot of nurses, particularly ED nurses, we have this, and I don't know, I don't know if this is something across the world. I know certainly it was in the same in the UK as it was in Australia. And so I've walked into countries, and it's definitely the same. But ED nurses, we almost view ourselves as not superior, but we see ourselves as requiring a certain skill set or requiring a certain resilience to be able to work in that environment every day. It's the same as, you know, Corman, you would you would require a certain resilience to be in that environment and to do what you have done. And so I think our emergency nurses, for me, from my experience anyways, looked at disability as a really big downgrade from the emergency department, as a really big step down, because they didn't understand what emergency nursing looks like and how it's translated into disability care. And they didn't understand what I was doing either. I think they thought I was, you know, going around and doing patient-facing nursing, which again, there would be no issue with that. But I don't think they realized the extent of the responsibility when you do an advisory role in disability care. So for them, it was, yeah, they it was viewed as a step down, and it was very much a lot of kind of turned faces when I made that decision. And they couldn't be more wrong. It was really a shock to me how much responsibility I would be given. And it was a shock to me how much my skills in emergency would translate into disability nursing, and that I would actually be more challenged than I ever was in emergency in this role.

Fred

Wow. That's nuts. And yeah, it does take a certain person. And like you said, even for emergency, I'm pretty sure it's the same here. I haven't seen the emergency side myself here on the clinic on the civilian side, but with it being such a different beast, I know the nurses also feel the same way you probably did there and in the UK. But you also said something powerful in your LinkedIn post. You said it's not a step down, it's a step closer to the people's to people's real vibe.

Speaker 1

Yeah.

Fred

So what did you mean by that?

Renata

So in emergency, you get touch points of someone's life and you see them on the worst day of their life. So they couldn't need you more in that moment. But they're happier have anyone help them in that moment because you're you're the one person there available. So they're just they just, you know, stretching arms out, someone help me, I've got chest pain, come towards me. And very trusting and very accepting. There's no barriers to that relationship. If you're a decent clinician and it's a decent patient, and even when they are on the worst day of their lives, there's ways getting around people who are under distress or are, you know, displaying some sort of obtrusive emotion because of that. So it's quite easy to form relationships in that moment because they need you so much. And we're at that one touch point of their life when they really need you. The worst day of your their life. We're not in their homes. You're not talking to their doctors, we're not talking to their extended family. We're not looking at how they access the community, how they go and have leisurely time. You're not looking at, you know, what their home environment looks like. You're not looking at the holistic rule of their entire life all the time. Most of the time in emergency, you statize them and the holistic part comes on the wards. You transfer them to the wards, and that's where the rules angels step in that make sure you get home safe and make sure you have community supports and make sure you've got the right equipment. So the continuity happens on the wards, and that's why ward nurses, I've always viewed them in such a high regard because they do really hard work, right? We we get them stable, we shift them on, and and the wards deal with the rest. All of the social work and all of the complex social issues happen on the ward. Invincibility nursing, when we're working in an advisory capacity like me, I'm not just considering their health. I'm considering how their environment influences their health, how their supports influence their health, how their social networks influence their health, and what multidisciplinary supports are or are not available to them. So I am looking at their life from every single way that I can, and every single way that needs to be looked at to consider how that might influence their health. Psychosocial issues, housing, accommodation, family, doctors, physios, OT, I need to consider absolutely all of that. And so you are working directly in people's lives that they're living, not on the worst save their life, not in a clinical environment, not when they're begging you for help. Sometimes they don't even want your help. And we're more trying to find a way to bridge gaps between them and their networks. You don't have doctors at the bedside and all of those things. And you're more really taking a step closer to the personal lives that they live outside the hospital environment. And so you're so much more intertwined into their life. And even if they never see your face, the advice that you give the operations teams that you support and the teams that support them, you are so much more intertwined into everything that happens in their life rather than the ED patient that comes in on the worst day of their life and you, you know, give them some pain relief, take their blood pressure. Yeah, let's say it's not a resarse case and you stabilize them and move them on. So, um, and you're and you're involved long term. You know, some of my customers I have been supporting since I came into this company. I've been in the company for a year, and I am still supporting the same customers. So long-term customers with our organization, long-term, and we get to see them grow up. And some of them will be with us forever. And and that's it's that to me is just such an honor because it's so much more stepping into their life and being a part of their life than it would be if I was in emergency.

Fred

Yeah, I can definitely see that. Wow. And having done health coaching when I was working at one of the hospital systems here in the United States and Jersey, it's definitely a different beast looking at all that social determinants, their housing, their being able to get their medications, their transportation.

Renata

Absolutely.

Fred

And I mean, I'm sure with disability and those patients that are saying they don't want help, it must be a hard thing to address.

Renata

Yeah, absolutely. And it's it's all those things you need to consider when you're making a decision or when you're providing advice is as you said, social determinants of health. It's it's looking at how can I take away those barriers. And then and when someone's unwilling to want to take the barriers away themselves, that gets even trickier, right? Because you're you're trying to say, okay, how can I take barriers away from someone? who who is putting their barriers up themselves and and to no fault of their own. It may be because for certain psychosocial issues or you know experiences or related past traumas, or the lot that comes into it. But yeah, it is, it is really complex and it really keeps you on your toes.

Fred

Yeah, and those complex past traumas can really be a driving factor for a lot of those things too.

Renata

Yeah, absolutely. I think I think the way that people experience healthcare can set them up for the way that they interact with healthcare in the future.

Fred

Yeah, and I've actually said a lot uh a few of my podcasts have talked about that how people's views on healthcare are impacted by their by the past and how they were treated before. And it's up to us to really try to rebuild that trust but it's not going to happen overnight.

Renata

Absolutely. Yeah. We didn't write the story but it's it's our job to rewrite it as the clinicians.

Fred

Yeah and you said that disability requires the same level of clinical judgment, anticipation and accountability as emergency care. But you also said something that really stopped me. You said the only difference is the risk for customers is amplified because you don't have the safety nets. Can you explain what you mean by no safety nets?

Renata

Yeah absolutely so I mean when you think about the hospital environment and if there's any ED nurses listening to this they'll they'll know exactly what I mean is cat to 40 minutes, your registrars at the bedside you've got your ECJ done by your MAs or your AINs you know you can see ST elevation, the lines in, you've got the bloods going, everyone's there. It's a team effort, right? And you have all of these safety nets. You've got the triage nurse you've got the registrar or the the senior doctor or the the consultant you've got the MA you've got the AIN you've got you know another nurse that's come to help you who might put the the you know the Kenya Lorraine for you you've got multiple eyes not to mention you're in a you know a public setting where there's there's screams, monitors, heart rate is up on the big screen you're gonna know when it peaks because it's gonna start beeping and drive you mad. Every ED nurse is, you know, hears that beeping when they go room to sleep. It's ingrained in our ears and you know you don't forget that beeping. Those are the safety nets that we are lucky to have in a hospital system. In the community you have someone's home their bed you know their their bedside table their lounge room their couch their TV we don't have any of that stuff. You can't see what's going on with them. Yes we can take vital signs and monitor but it's not always you know it's not every four hours like it would be in the hospital or every hour half hour like it is an emergency. It's only as indicated. So for someone to require vital signs in the community it requires their support workers to be trained in taking vital signs and it requires you know them to have plans that indicate what safe parameters for that vital signs. They cannot reasonably make clinical judgments like nurses can or MAs in the hospital can around vital signs. So they actually have to have prescribed parameters. And not many of our customers or people in the community would get regular vital signs done by support workers. It would be really only if they need it and that would be that someone at some point has said I want them to be regularly monitored for X, Y, Z reason. And even then, really the best that can happen is we escalate within the parameters that prescribed. So you don't have the doctor at the bedside. What you have is a support worker who is not a clinician at their bedside every day. And you don't have nurses unless there are supports that are coming you know every couple days or something to that person's house. And that needs to be organized through community nursing. And you know sometimes it's a different nurse every time so it's not the same nurse looking at them at them for hours and seeing them deteriorate over time. And um it's these touch points of supports that aren't like the totality that you have in an emergency department. So the the impacts of someone's health deteriorating over time can be very quiet and cumulative and can be devastating if they are not noticed and if those subtle signs are not noticed by support workers. And so what that really requires is support workers who are non-clinicians to have frameworks, training, support procedures that allow them to notice the subtle signs that someone is deteriorating. It's the I don't want to eat today. It's the my pants are a little bit bigger than they were yesterday. It's the I'm not as talkative it's the you know I'm sleeping longer. It's those subtle things when we are involved in someone's life and we are involved in 24 hour or you know 12 hour, 16 hour, 18 hour supports that we would notice before we notice she's got a fever or her heart rate's high or that you know her blood pressure's low, those things won't be noticed. So they have to be able to pick up on the subtle signs and they have to be able to escalate when those subtle signs are happening. And that's something that we do well in in in in the community and in disability care is we teach non-clinical staff who are involved in seeing the totality of someone's life to pick up day to day when things are shifting and shifting subtly and shifting slowly and shifting what what someone else might not see as a big deal because an ED will don't kill if you didn't eat as much as you did in the morning because we can see your signs and we can see your blood pressure and we've got your blood you know gut gas back and we know what your lactate is and and it's it's all those safety nets that stop us from seeing the holistic things that actually signal change before the vital signs change. And so you don't have the safety nets that you would in an emergency department or in a hospital for that matter and don't have clinical staff at the bedside every day. You have non-clinicians who really, really require or who depend on really solid training, really solid frameworks and really solid standards that set them to have an anticipatory approach towards risk management. That actually brings me to my next question which is how do you train those non-clinical staff to recognize and respond to risks when they don't have that clinical background it is finding best practice and it is getting all the research and getting all of the clinical stuff, all of the signs of deterioration that we see and it's taking a step back. So in emergency we learn to take a step five five steps forward and you have in more own experience obviously in the Marines probably have that I can think five steps ahead. I'm not just thinking of what's happening now but what could happen five five minutes from now so you learn to pre-plan I and anyone who's worked in high intensity acute environments thinks five steps ahead, right? We're looking at what's going to go wrong in the next five minutes. That really comes into handy in the community because it's teaching support staff to look five steps back so how they can move that five steps ahead. So rather than teaching them what a blood pressure looks like when it's normal or not or what someone with low blood pressure looks like, it's it's really honing in on those subtle signs of the disengaging with eating or losing weight or not being themselves or sleeping longer or complaining of pain or you know any of those really subtle signs. And it's giving them really really strict frameworks for how to escalate to external support. So when to call the we'll call 911, we will call triple zero so when to call triple zero in Australia or 911 in the US and when to call GP or when to call a health advice service or call the poison slime and it's teaching them how to seek supports because they don't have that support at the bedside. So having really strict frameworks in place, really strict procedures in place and making sure that that that reaches frontline staff. So it's not about just writing a policy or a procedure and shuffling it away and it being this pretty perfect document. It's about making sure frontline staff receive that information through education, through induction, through training, through you know case conferences, getting their operations teams to really utilize those policies and procedures and ingraining that risk approach message right across the staff, all across you know geographically dispersed teams and that is done through obviously the mechanisms I've spoken about is the education, but really getting in there and hearing their challenges as well and working out why things aren't being done. So when there is an incident and it's not managed appropriately, it's it's going back to the team and asking why was there a knowledge deficit? What was what was the understanding that was not there and filling those gaps and bridging those gaps between policy and practice. And so policy can always sound really good, but sometimes it doesn't quite translate to practice and sometimes it creates unnecessary barriers. And so what's really important in what we do is we consult frontline teams before we publish a procedure. So we will make sure that they are understanding what's written in the actual procedure, that it's practical, that it can be implemented. And if not, we take their feedback on board and we actually change that procedure before we publish it. And so we'll actually consult with frontline teams about what their challenges are, how they can implement procedures that we're proposing and and and it all goes back to that anticipatory approach. It's looking for the subtle signs and it's seeking help when they need to before things get worse. So it's looking five steps ahead it's the fall and knowing that they're not CT scanners and it might just look like a fool but still seeking medical advice so that the decision is not sitting on their shoulders to say whether that's an emergency or not. It's the call in the health advice service and getting that getting that information and that direction from someone whose scope is to provide that direction and that information. And so we really really hone it into our staff that you should be externally receiving support from the appropriate health advice or health practitioner. And that's how we keep our customers safe and that safe and that's how we keep risk management frameworks working in a disability setting where you have non-clinicians at the bedside.

Fred

Wow I gotta say two things stuck out to me there one was the fact that recently in one of my podcasts I was talking about mental health first aid and looking what what I call the soft vitals you just mentioned a few more soft vitals that people should be looking at not just for mental health but also for as you're saying to see someone deteriorate. Yeah they're not wanting to eat or they're sleeping. So yeah that really struck out there's also so it's important for people to know that there's also those soft vitals out there that'll give us more information before we get to the point where the actual vitals are showing us what's wrong.

Renata

Yeah. And those soft vitals are so much more important when you have customers who can't always vote voice how they're feeling. So you've got to think in disability care we sometimes have nonverbal customers or we have customers who aren't able to articulate what's going on in their body. So the soft vitals are so much more important. The observation skills and and being able to pick up on subtle changes are really important because we don't always have how are you feeling you know at our expo at our disposal yeah definitely and then the other thing that really caught my attention was the fact that you said you guys reach out to the frontline and get their input on what's going up right and what's going wrong to service your protocols, which is definitely something that should be being done and I definitely applaud you guys for doing that thank you. Yeah it's something that makes me very proud to work where I do I have not seen that in the hospital setting I when I was a nurse no one ever reached out to me to ask what I was struggling with when they were writing procedures that I had to follow. And so we really recognize that we're writing these for frontline staff. And so if you're not consulting the frontline staff who are expected to be the ones implementing that procedure and we're writing it in isolation in silo as the big person who sits behind the computer in the office, you know we're doing an injustice to the frontline staff. And so it's something I'm very proud about and I get yeah I get really excited about and it makes me love where I work and what I do. Yeah that's definitely definitely profound I will tell you that so here's what I'm realizing as we talk most of us in healthcare whether we're MAs nurses or even physicians we're taught about disease process the medications you know the procedures but we're not really taught about working with people with disabilities as a specialty what would you say is missing from our education I think there's two things number one is that if you've ever worked in an emergency department you will know this and if you think about it really intensely you'll agree with me. Perhaps you might not because you don't want to you don't want to admit it but when you really think about it deep down is that people with disabilities do not receive the same standard of care as what people without disability do when they go into a hospital system.

Fred

Oh I'm 100% with you on that.

Renata

Yeah right and so there's there's barriers I understand to that care behaviors, you know, us wanting to protect them from distress, psychological distress, you know, potentially an accumulative comorbidities all of that jazz totally get it. But what I have seen is that the same protocols and that most emergency departments across the world have protocols. We have sepsis protocols we have chest pain protocols we have all of those things head injury protocols all of these measures the really strict protocols that we harp on about that we sometimes do on people without disability unnecessarily because we want to cover our bottoms right in in a in a large hospital setting we have these protocols. I have seen the same patient that come into emergency night after night after night and have the same blood test and CT scan done night after night after night and that's a person without a disability right and it was unnecessary. They didn't need it but the protocol says potential head injury do the CT do the blood test etc etc etc so it would take the same things right or England over and over again unnecessary treatments waste of money and invasive then you have the person with a disability who comes into the same condition and doesn't even get the blood test doesn't even get the CT scan and it's weighed ethically as oh we'd have to sedate them and it would be you know it would be obtrusive and behaviors and it's more less to sedate them. It's like I have seen you sedate Peter time and time over for the same scans because they're drunk or they're sordy or you know you know mental health for example they'll do it without even blinking an eye at it we use restrictive practices in hospitals like they're going out of fashion and clinically you're straining people left, right and centre. But for someone who has a genuine head injury and someone with a disability, a light sedation, you actually might have to get some more of your staff to the bedside sorry it's more work, but they don't get the CT scan or they don't get the blood test or they come in with a seizure and they don't even get a blood gas, which is pretty handy to get on someone with a mild bit of sedation. It will it'll take a, you know, depending on the level of intellectual disability or behavioral presentation that they have I have seen customers who have disability get blood gases quite easily. It's about your approach it's about giving them some time, sitting down with them, letting them be a bit of rapport and then potentially sometimes there is some you know medications that come into it but just a blood gas even, you know, check the lactate did they actually have a seizure I've seen diagnoses be reached in my customers with no testing and that frustrates me because how do you know how can you discharge? How can you say that's the diagnosis and give us the ultimatum that that's what it is when you have done no diagnostic testing. And so that is the one thing I would like to teach people who are at the bedside advocate for your people with a disability if there is a treatment pathway real question the clinicians above you why that treatment pathway is not being followed. And if you send risk, if you see that there's a mechanism for a head injury and that there's you know there's good evidence, there's a good story, they fell from height, they've got you know what I mean any of those things, but you would look at in someone without disability and advocate where you can do some research about what those treatment pathways are and really challenge clinicians to weigh up what they try to seem as ethics when really sometimes it is laziness. And I don't say that lightly because I have been the ED nurse holding down the patient with a disability I have and I and I do we don't do that lightly. But I know when they need a scan, they need a scan and I would rather know if there is a bleed in someone's brain than you know give them a twilight sedation for a couple minutes and have a couple extra clinicians at the bedside to monitor their breathing, you know? So it's for me it's it's that bridge between what they deserve and what they get and and we see it all the time. We'll see it in proactive risk screening as well people with disability particularly intellectual disability or psychosocial disability twice as likely to get type 2 diabetes than someone who is on the same medications and does not have a psychosocial or an intellectual disability because they had GPs that blood tests, do blood tests every three months, do their BMI, do their all of that, and they proactively mitigate that risk by screening them for diabetic or metabolic markers. That doesn't happen with the person with a disability because it's seen as oh we can't get the bloods and it's too much of a hassle and it's going to distress them and okay find a way around it. I don't care. Because then they end up with advanced diabetes and the distress of them having to receive insulin or or be on all these other medications and getting skin infections of all the other things that happen when you get diabetes, in all that in so much more worse than them every three months being a little bit more distressed or you having to find a way around navigating their disability and getting them the the treatment that they deserve. So that would be my first thing and that leads me to my second thing and my second thing is take your time with the person with a disability ask questions. Lean in on the support worker that brings them in or the their parent or their loved one or their sister. The problem with he the problem with people with disability is we make an assumption about the way that they communicate what they feel comfortable with what's appropriate. It's the same as cultural awareness you don't approach someone from a different culture and just assume that you know if they lack eye contact or if they sit next to them or if they would prefer a female or male staff member, right? Definitely it's the exact same thing. It's it's finding out what works for them. So ask questions be curious and before you approach take your time to get to know them. It might take it might be hard to do and I get it in ED we have competing demands or in acute settings we have you know fly bother customers or patients sorry waiting for us but that little bit of time that you take to actually get to know them and to approach them in the way that falls right for them and is you know comfortable for them will actually save you the time trying to get a blood pressure 10 minutes later when they're they're you know flailing their arm and we're not getting the cuff on them because you haven't found the way that works for them to communicate.

Fred

So take your time before approaching is my biggest um second piece of advice yeah it's definitely about rapport I mean it's this it's rapport for regular people but the definitely for those that are disabled and have different disabilities, building their rapport will really make a difference in their care.

Renata

Absolutely so can you share a story maybe without identifying details of a time when that kind of patient-centered approach made a real difference for in someone's care I think for me it's that curiosity getting to know them so we had a customer or actually patient I I would call them in the hospital but in community disability we call them customers and so even that language is so much nicer right the customers because they're coming to us for support and it's such a shift in disability the way that they that people with disability or just that the people receiving service are treated right you're the customer you are coming to me for support versus you're the patient and I know better, right? And this is a public health and you know you're lucky to get the care and it's just the mind shift is very different. And so I had a patient when I was working in the hospital with this dementia advanced dementia and he would not let anyone do his vitals I was actually it was quite early on in my career I was a new nurse. I had just kind of started nursing I was a new grad and this was way before I entered the community space and he just was super super super aggressive. I had been hit once already and I've been hit in the back of the head and and I can't tell you how strong someone with dementia is and no one wanted to go near him or approach him after that because they were quite scared of getting At harmed, and that's understandable. And no one really could work out, you know, did he have history? Was there some sort of trauma? No one really looked at those things or questioned those things. And so I decided to call his his son and try and get a bit more information about him. And then I said, you know, hello, I'm the nurse looking after your your dad. We're having some problems. And even that in itself was a step that a lot of nurses hadn't taken. Call a family and ask some questions, right? Seems really simple. No one had done it yet.

Fred

Wow.

Renata

Everyone was just getting hit or punched or arms thrown at them, and they were just king sedating him, chemical chemical restraining him, which is we really don't look lightly on chemical restraint in disability care. We see it as a way of taking away someone's rights and as a breach of human rights. And so in the hospital system, it's used a lot more frequently, and it was not viewed as smearously as we do view it in disability care. And that's what was happening. They would just keep giving him sedatives. And, you know, eventually once he was knocked out enough, they could get their vitals or get their bloods or clean him up and put him in, you know, a pad and sort all the things out that they needed to. And so I called his son, and again, that was the first time that anyone had called his son, and he thought something had happened because he was so shocked that he'd received a call. And he said, Oh my gosh, is that all right? Is everything okay? And I said, Yeah, yeah, yeah, everyone's fine. I'm just calling to get some more information about him because he is really, really, really aggressive. And I don't say that word easily. I'm sure there's reasons behind it, but he has, you know, he's already hit me, he's hit a couple of the other nurses. Oh, oh, are you okay? Um, yes, I'm fine, he's okay. It was I've been checked out, everything all her ass. Son was lovely. And the son said, Oh, he's a he's ex-army. And I said, Oh, right.

Fred

That'll do it. Yes.

Renata

So he had significant PTSD, and he was reverting back to his, I'm not sure what they called it. He's, I think it was Italian that he spoke, and he was reverting back to his native language, was one problem. So he didn't understand what we were saying, and we were getting flashbacks to when he was in, you know, certain battlefields or wars, or I'm not sure what what what that way ones they were, but he had obviously been exposed to quite significant trauma. And he said, you know, does anyone speak Italian? Because that'll settle him because he's probably trying to talk about his trauma and no one's responding, and you're all, you know, circling around him, and he's probably reverting back to old memories of when he was in the army and he's trying to yell at you that Italian and none of you are understanding him, and so that just you speaking the wrong language is amplifying his anxiety. And I said, Ken bring something in some pictures, so that maybe if I orientate him to pictures of him in the army or pictures of him doing something else, maybe I can take him out of that thought, bringing him back that um, you know, with sundowners, they often refer back to old memories, old language, old experiences, because they don't have the short-term retention of their memory. And so maybe I can bring in out of that. And his son said, Absolutely, I'm coming down on Thursday. I'll bring some family photo books and I'll actually bring one of his books that we have that has pictures of in the army, all of these medals and things like that, that he's usually very proud of when he does have good, you know, um, cognition. And he does have good cognition at times, so let's see what we can do. And so Hang was going to bring down the book, and I ended up finding a nurse that spoke Italian, which I was very lucky. I I in Australia we have very multicultural nurses that come from all over the world to work here, and so I was really lucky to find a nurse that spoke, actually, I think it was an OT that spoke Italian, and we got consent from the son to have her talk to him. And so she went in and had a chat with him. And I mean, he still was very confused. He thought she was his daughter. He thought I was his son because his son's name was Renato, and I'm Renata, which is an Italian name. And he's still very confused, but he settled. He settled so much because he was hearing language that he understood and he was talking to us. And we managed for the first afternoon to get all of his personal care done without any chemical strengths. And on Thursday, when his son came down with that storybook, he actually reoriented and realized that I wasn't his son, and his son was sitting in front of him. And he grabbed one of these medals and was really proud of it. And I think for the first time it clicked in his head that he wasn't in the war anymore, or he wasn't at battle, or however he was thinking he was, because he was seeing pictures of himself in the army, and then he was looking himself kind of in person, and he was able to make that connection somehow that that that's not where he was anymore. And he was seeing his son in front of him and seeing pictures of his family and other things like that. And um, he he was able to associate that to past tense for the first time in a really long time. And so what we did every single day, every morning, was we went through those books with him. And I couldn't do it because I didn't have the time, but I had amazing AIMs very similar to medical assistants in the US or the UK, and they would go through that book with him every single morning. And and usually every afternoon, or if he was starting to get a bit aggressive, we would, you know, reorientate him to the book and that would really calm him down. And we used that for the whole time he was with us, that that one book. And yeah, it really changed the way that we cared for him. And it was just the simplest thing. I know it didn't go that far. I would just call your son to ask some questions if there was anything I could better do. But that's how far it went. Just the curiosity and humility behind asking questions about someone before having a response led to this really super great intervention and much less chemical restraint for him. So it's yeah, it's a shame we don't have more curiosity and humility, and perhaps we don't get granted enough time in nursing to have curiosity and humility. But sometimes taking time gives you more time back with your patients.

Fred

Not just that, it also changes the way they're cared for completely. Like your example showed, he was able to get better care because he wasn't being as aggressive then either.

Renata

Absolutely. And less sedated, so less risk with, you know, sedative drugs on his heart rate, blood pressure, all of those risks that come with chemical restraint.

Fred

Exactly. So for someone working in a busy c clinic or a hospital who's interacting with patients with disabilities, what's one thing they can do differently starting tomorrow?

Renata

Be curious. Ask questions before approaching. Ask people who love them, which if they are supported by community disability services, then their support workers are probably the best people. It is there's research that says that people with a disability who live in supported independent living, so that's 24-hour support, see support workers more than they see their own family. You know, majority of the exposure that they have to other humans in their life is to their support workers. That is if they don't have that's that's in the supported independent living situation. So that's if they live in a supported independent accommodation that is supported by a disability organization. So the source of truth for who they are and what works well for them is going to be in those support workers that actually are with them every single day. And so calling them, asking questions if they don't bring them to the hospital themselves. Sometimes we send in a book and it, you know, seldom do people actually look at it or might send information about them, you know, positive behavior support plans or history, their likes, their dislikes, you know, a customer profile, things like that. And I, you know, I can admit when I was a nurse in emergency, I never looked at that stuff because I was like, oh, medical, medical, medical, I need to work out what's wrong with them, I need to get this done. We're very task-oriented in emergency. And as human as we'd like to think we are, we're still, you know, robots in the cog of the wall that is the health system. And we still have our priorities and we're still under pressure. So we don't always do the justice by our patients to take the time to get to know them if they require that. Because we, we know, we we're trying to get the next thing done, save the next life, you know, we're just turn CPR for 10 minutes and a drink, you know, we're under so much pressure. So taking a little bit of time to be curious, asking questions, and the best information you're gonna get is if they are supported by families from their family. But if they are not supported by family, it's from their support workers. And before you discharge them home, before they're going home, it's working out if that discharge has changed anything for them. So if there's new supports in place, something new that is, you know, required, it's not assuming that support workers can do that without the appropriate informational guidance. So we're so used to as nurses in in emergency settings, just discharging people and expecting that they have the same knowledge base as us. And we forget that when people go back to the community, they're going back to untrained clinicians, they're going back to mum, dad, or to community supports, and there's not clinicians available. So it's actually making sure that when you discharge, you educate, you know, these are the things to look out for. This is what's happened, this is what they need over the next few days. So it's you may not be able to provide that information to the person with a disability, but making sure their support networks have that information available so they can be set up for success and that person doesn't end up falling back into the health system because, you know, you rushed to discharge and you didn't give the community supports enough information. So never make assumptions about what supports they have available to them and never make assumptions about who they are. Take time when they come in and take time when they're leaving, and that will actually reduce the encounters that you have with someone falling back into the health system time and time again. Uh the representations, the frequent flyers, we can reduce those by actually just taking a little bit more time to get to know people and to get to know their supports when we discharge them home.

Fred

Really good advice. Thank you. So this season we've been talking about protecting your heart in healthcare and this work you do, holding all these responsibilities, being the person who sees the gaps in the system. I have to imagine it takes a toll. So how do you protect your own heart while doing this work?

Renata

That's a good question. And it's something I don't even think about until I'm asked. And because, you know, there's I think the only times I get I I see so much that you are exposed to so much psychosocial distress as a clinician, as someone who works any type of healthcare. And for me, I don't even think about my own psychosocial distress sometimes because I am really, really of the mindset of celebrating wins. And I really try not to, and no gets easier said than done, but I try to think about what it would be like if I wasn't there, right? If I wasn't doing what I do, if I didn't give that advice, if I didn't link them in with that support. And it's it's really that's how I focus on it. It's not what I didn't do good enough, or it's not where because to me, every mistake is an opportunity for learning. And I get down myself, don't get me wrong. I go home, I go, oh God, I shouldn't have said that. But it's realizing we're human too, right? You're humans dealing with humans. Nothing is ever gonna be perfect. You are unpredictable, and the people you serve are unpredictable. For so for any clinician working or for anyone working in healthcare, you've got to remember you're a human doing the service of humans. It is never gonna be perfect. All you can do is celebrate your wins. And if you take yourself out of the equation and think of the scenario and delete yourself, even if you made a mistake, even if you said something silly, even if you do the miracle error, as long as no one got hurt, they're still probably better off for having encountered you. And so celebrating your wins to me is how I stay resilient and how I stay excited. And and I see every mistake or every fumble as an opportunity for learning. And I go, okay, well, what do I got to do to make sure I don't make that mistake again? Learn. And that's every single video, they say in nursing, it's a it's a really cheesy saying, but it is so true is you never stop learning. And it will be the same for MAs, it would be the same for AINs, it would be the same for anyone in healthcare, OTs, physios, all of them. You never stop learning. And so it's appreciating that that's the journey is you're never going to be perfect because there's always gonna be a new disease or a new medicine or a new treatment pathway, research, best practice. You're always gonna be learning, so don't focus on what's going wrong or what mistakes you've made, as long as no one got hurt. You know, everyone's probably still better off for having met you and having encountered you. And so I celebrate my wins and I celebrate the gap that I bridge between my customers and their external supports and the multidisciplinary systems that support them. And I think if that bridge wasn't there, you know, what impact would not be made? And that's the way I view my work. And so I don't I don't really get down too often. I'm I'm quite a positive person. And if I do get down, I think, okay, well, this is an opportunity for learning, and how do I flip this so that I don't make that mistake again? And that's the way I view it. That's how I protect my heart, is I I celebrate my wins and I, you know, I look at all the happy things. And our workplace is really good at doing that in and that we have meetings where we share um success stories. And, you know, they're not always your success story, but being part of a collective organization that shares success stories and get to see the impact of what the organization's doing. And that for me is really special.

Fred

Yeah, that's interesting. That's not even just celebrating your wins, it's celebrating each other. The wins of everyone else as a whole. That's that, yeah, exactly. That's that's powerful.

Renata

For sure. Yeah. I love it. I love hearing what other people are doing. I love asking them questions. I got asked recently if I'm on an agenda in our meeting, what would I like? And I said, I want to hear one win for everyone for the week because I love hearing when we're winning.

Fred

That's that's great. That's a really great. So you heard that. Celebrate your wins. Now, if you could say one thing to the medical assistant, the CNA, the nursing student, anybody who's listening right now. People who may never consider disability care as a career path, what would you want them to know?

Renata

I think it would be don't make assumptions. It is going to be just as challenging as whatever environment you're coming from. And if you love learning and you love being challenged, and you're an academic, and I don't say that by when I say an academic, I don't mean you have to have a degree to be an academic. I that's not the way I use that term. I use the term academic as you're someone who likes to learn, you like to read, you like to research like you. I I find you're an academic, you're someone who likes to learn, you like to be better, you like to, you know, 1% better every day. To me, it is the people who want to learn and are always wanting to, you know, know more and love stimulating their brain and enriching content. If you're someone like that, then disability is gonna be amazing for you because it is such a challenge. There's so much to learn. There are so many disabilities. I I don't I can't list all the disabilities. And I've been working in the sector for a year and I still do meetings now, and they say, Oh, they've got, you know, this disability. I go, what is that? What on earth is that? I don't know what that is, and I have to go and research it. So you're never gonna be the master and you won't even really be the jack of all trades. You'll you'll be the person who's always learning and bettering themselves so that you can provide that service and provide the right type of care. So if you like that and you like the sound of that, then it's definitely gonna be for you. It is such a challenge. Don't assume that it's gonna be slow paced and easy because it's not ED. It is really, really such a mentally enriching environment to work in. And if that's for you, then it's the right place for you.

Fred

That's awesome. And I have one last question for you. What gives you hope about the future of disability care?

Renata

Oh, that's a great question. What gives me hope about the future of disability care? I am seeing the change every day. I think the way that disability care uh has been historically, and I'm I'm not gonna go into it because it's quite a sad history, but if you look into the history of disabilities, you know, up until a certain period of time, I don't know what what century it changed, but disabilities were seen as, you know, mental health conditions and people were locked away and treated terribly. So we've come a really long way from our history. Disability has, and and so has mental health. And we've come such a long way, and there's still such a long way to go that every day it gets better. And I'm seeing my organization, the one that I work for, make such changes in this space. We are, we are, you know, one of very little organizations that gets all the heads in the business together and we'll put 20 people in a room for one customer, and we'll get all of those heads together. Don't care who they pay, how much they're paid, who they are, what level, if they got insight, we want to hear it, and we put them in a room and we talk about one person. We don't give up on people. I actually got an email from my CEO yesterday. It was a big threat, and we were celebrating a win for a customer, and he said, we don't give up on people and we don't turn them away. And it really struck with me because we were getting together, you know, two, three times a week for just one customer. And that's the extent we will go to. We will problem solve and we will talk and we will make ways and we will put the heads of the, you know, of the organization together to make decisions and collaboratively think, whereas another organization might turn that person away because they're too hard basket, they're too, you know, too difficult. We can't do it. We don't have the supports, they're too much of a risk. And so I'm seeing that change in disability. And I think it starts with organizations like mine. I'm sure there's others out there that are, you know, are also making waves. But I'm seeing that change in the place that I work, in that nothing is too hard, nothing is too difficult, no one as a person is too difficult. Well, we have to find the way to make support work for them. And inherits models of support means getting people together, problem solving, and and you know, committing to people when you bring them on as a customer, committing to them, committing to being a part of their life, and no matter how hard it gets, not walking away. And I think I see disability moving that way. I see that commitment, I see advocacy and rights, and I see it changing from the old ways, which was, you know, a funding focused and organizations just wanting to get money and moving towards being really, really about the person at the center of it and committing to that person and being a part of their life. And my hope is that we keep moving that way. We keep, we keep thinking about the person behind it all and we keep being willing to go to the extents that my organization goes to to protect people, to never give up on them, to advocate for them, and to remember that they're at the center of it all and you know, they're why we do this. So I hope disability keeps moving that way. I hope organizations get on board with us and really go all in on their customers and and and don't just think of them as a number of a cumulative, you know, population of people that they serve. That each individual deserves enhanced models of support, one-on-one time, you know, focused energy, focused attention to detail. And when things get tough, bring all the heads together, have a conversation, see what you can do before you think of ceasing supports, because don't give up on your people. Yeah.

Fred

Wow, that was that was powerful. Thank you so much. And this has been such an eye-opening conversation. I mean, I think a lot of us we're gonna be walking away with this, seeing disability care, the dignity in healthcare in a completely different way.

Renata

Yeah, absolutely. I think I think we we don't put enough emphasis on the art behind being a healthcare person, you know what I mean? And I say I I guess say art of nursing because that's ingrained in me because of four nightingale days, but it's not just nurses, it's all healthcare professionals. There is a dignity to it and there is a skill behind the art of it. And it's not about how smart you are or how much you know. That's all important as well, but it's about who you are and how you approach your patients.

Fred

Yeah. Well, thank you so much for your time, your expertise, and being willing to share your perspective with us here in the States.

Renata

Thank you so much. I'm really excited for them to hear a little bit about Australian nursing and about disability care, and really excited to spread the word and hopefully, you know, some people have a change of career, then, you know, you never know. Or they might get to know a little bit more about the person with a disability and how we can change their impact, the impact we have on them when they they access healthcare services. So thank you. It's been an absolute pleasure.

Fred

All right, it's time for your map moment.

Speaker 1

It's time for your map moment. A quick little foot to keep you gone. Stay close.

Fred

If you've been listening to this conversation with Renato, I want you to think about something. When was the last time you truly centered a patient's dignity in your clinical care? Not just being polite, not just following protocols, but actually seeing the person in front of you and adapting your care to honor who they are. Here's your challenge for this week. And I want you to try this on your very next shift. I call it the dignity check-in. When you're with a patient, any patient, I want you to do three things. Number one, and I'm sure you already do this. Introduce yourself by name. Not just I'm the medical assistant, but hi, I'm Fred Nazario, and I'm going to be helping you today. Number two, ask permission before touching them. Go ahead and say, is it okay if I take your blood pressure now? It's a small thing. But it gives them agency. And number three, make eye contact and sit down. Even if it's just for 30 seconds. That physical act of lowering yourself to their level changes the power dynamic. That's it. Three things. And here's what I want you to notice. How does the interaction change? Does the patient open up more? Do they seem more at ease? Do you feel more connected to the care you're providing? These aren't soft skills. As Renato showed us today, dignity is a clinical skill. It improves outcomes. It reduces risks. And it honors the person in front of you. Try it this week. And then I want to hear from you. Email me at mappodcast at Outlook.com or drop me a message on Instagram or Facebook at Matt Podcast Official. And tell me. What was your Map moment? How did centering dignity change your interaction with a patient? Remember, your work matters. And the way you show up for your patients, all of your patients, has the power to change lives. In school, they teach us that a life-saving intervention is loud. We are conditioned to believe that real medicine looks like chest compressions, trauma shears, and crashing monitors. We're addicted to the alarms. We think that if the room isn't chaotic, the stakes aren't high. But Renata just exposed the most dangerous blind spot in our entire industry. The most devastating failures in healthcare do not make a sound. When a vulnerable patient is stripped of their dignity, no alarms go off. When someone with a disability is written off as difficult or chemically restrained, just because a clinician wouldn't take three minutes to learn how they communicate, the monitors don't beep. The patient just goes quiet. And in this field, quiet risk is deadly. You want to be a hero on your next shift? You want to actually save a life? Understand that sometimes a life-saving intervention doesn't require a crash cart. It requires a chair. It requires the absolute humility to sit down at eye level, look at a terrified human being in the face, and ask for their permission before you touch them. Dignity is not a soft skill, it is the ultimate clinical safety net. And when you are the one providing it, you aren't just doing the job. You are standing between the patient and a system that is perfectly willing to erase them. You are their armor. Keep your eyes open. Protect the quiet ones. Until next time, keep learning, keep growing, and keep following your map, your medical pathway for success.

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