Nursing U's Podcast
Nursing U is a podcast co-hosted by Julie and Caleb. We embark on an educational journey to redefine nursing within the modern healthcare landscape.
Our mission is to foster an open and collaborative environment where learning knows no bounds, and every topic—no matter how taboo—is explored with depth and sincerity. We delve into the essence of nursing, examining the intimate and often complex relationships between nurses and their patients amidst suffering and death.
Through our discussions, we aim to highlight the psychological impacts of nursing and caregiving, not only on the caregivers themselves but also on the healthcare system at large.
Our goal is to spark conversations that pave the way for healing and innovation in healthcare, ensuring the well-being of future generations.
'Nursing U' serves as a platform for examining the state of modern civilization through the lens of nursing, tackling issues that range from violence, drugs, and sex to family, compassion and love. We will utilize philosophy, religion and science to provide context and deeper understanding to the topics we tackle.
By seamlessly weaving humor with seriousness, we create a unique tapestry of learning, drawing wisdom from the experiences of elders and the unique challenges faced in nursing today.
Join us at 'Nursing U,' where we cultivate a community eager to explore the transformative power of nursing, education, and conversation in shaping a more whole and healthier world."
Disclaimer:
The hosts of 'Nursing U', Julie Reif and Caleb Schraeder are registered nurses; however, the content provided in this podcast is for informational and educational purposes only. Nothing shared on this podcast should be considered medical advice nor should it be used to diagnose or treat any medical condition. Always seek the guidance of your doctor or other qualified health provider with any questions you may have regarding a medical condition or health concerns. The views expressed on this podcast are personal opinions and do not represent the views of our employers or our professional licensing bodies.
Nursing U's Podcast
Ep #025 Pt 2 - From Healing to End-of-Life Care with Compassion & Communication featuring Alex Gamble
What if our focus on saving lives is actually limiting our understanding of care? As we uncover the profound responsibilities nurses carry in palliative and hospice care, especially within the intense environment of the ICU, listeners will gain insight into the emotional challenges faced when patients cannot be saved. By exploring these dynamics, we aim to broaden the perspective on nursing beyond just the act of healing, highlighting the importance of understanding the full human life cycle.
Join us as we navigate the poignant transition from healing to supporting a dignified dying process. The crucial role of communication and adapting to the dynamic nature of patient goals is emphasized, showcasing how nurses can align care plans with patient values. We share compelling personal stories that illustrate the transformative power of open conversations in healthcare, revealing how a patient's awareness of their condition can pivot their healthcare goals, urging healthcare providers to cultivate empathy and curiosity.
We'll also delve into the emotional weight nurses carry and the cultural factors that shape nursing culture. We discuss the importance of fostering environments that support emotional intelligence and professional development, advocating for integrating palliative care principles across healthcare settings. By championing openness and communication, we aim to enhance the quality of life for patients and families, while also calling for educational systems to support the emotional well-being of healthcare professionals. This episode is a tribute to the tireless dedication of healthcare providers who strive to align care with the evolving goals of their patients.
Hi, I'm Julie.
Speaker 2:And I'm Caleb. Welcome to Nursing U, the podcast where we redefine nursing in today's healthcare landscape. Join Julie and I as we step outside the box on an unconventional healing journey.
Speaker 1:Together, we're diving deep into the heart of nursing, exploring the intricate relationships between caregivers and patients with sincerity and depth.
Speaker 2:Our mission is to create an open and collaborative experience where learning is expansive and fun.
Speaker 1:From the psychological impacts of nursing to the larger implications on the healthcare system. We're sparking conversations that lead to healing and innovation.
Speaker 2:We have serious experience and we won't pull our punches. But we'll also weave in some humor along the way, because we all know laughter is often the best medicine.
Speaker 1:It is, and we won't shy away from any topic, taboo or not, from violence and drugs to family and love, we're tackling it all.
Speaker 2:Our nursing knowledge is our base, but we will be bringing insights from philosophy, religion, science and art to deepen our understanding of the human experience.
Speaker 1:So, whether you're a nurse, a healthcare professional or just someone curious about the world of caregiving, this podcast is for you.
Speaker 2:One last thing, a quick disclaimer before we dive in. While we're both registered nurses, nothing we discuss here should be taken as medical advice. Always consult with your doctor or a qualified healthcare provider for any medical concerns you may have. The views expressed here are our own and don't necessarily reflect those of our employers or licensing bodies.
Speaker 1:So let's get started on this journey together. Welcome to Nursing U, where every conversation leads to a healthier world.
Speaker 3:I know you guys wanted to talk a little bit about palliative care and hospice and introduce those ideas into the conversation, and so I wanted to bring that in. If I can pivot us a little bit, yeah, yeah, yeah.
Speaker 3:Because, caleb, you'd asked in preparing for this conversation, you talked about this notion of like hospice as a relief valve, particularly for nurses. So for the folks we're talking about that are in the intensive care setting, and I think that question so beautifully reflects some of these themes that we've been touching on in terms of the importance of understanding the larger system. Right, like understanding this bigger context outside of like. Okay, I went through my training and I'm excited about the ICU. I see there's real suffering here. It lets me use my brain in a way that's very fulfilling and I'm really meeting a deep need. So I go to that space. But if I came right out of training and I got a little bit exposure to some stuff, but I'm now getting my deep experience in the ICU, that often is divorcing me from this larger picture of what the rest of the system looks like or about even what the human life cycle is like. Right, the part of my education where I'm understanding the people that I'm serving in the context of their whole life that had a birth and has a living and has a dying and has a death, and that that's a cycle that everybody's kind of caught in right, that we often there's many of us that find ourselves as a really important piece of a really powerful system and we're not getting the bigger context and it causes us to form a view that's very narrow. So let's bring that. But what am I talking about? If I work in the ICU and I just see patients that are critically ill and trying to die and I see myself as my purpose is to save them from dying, that might make help me be really focused and really effective at that work of hanging those pressers and following those maps and titrating those meds and alerting the rest of the team when they need more attention, getting the RT in there and doing those things and I might be a hell of a good ICU nurse. And when I have a patient whose body is dying and is beyond the the, all the tools, all the many tools that we have with ECMO and with everything else, I have failed. With everything else I have failed, and one and two and 10 and a hundred of those, it's so injurious that I can't come back right. I am a failure because I'm divorced from this notion that everyone is going to die and we can do everything we can to to stave that off, and sometimes we're going to reach people in a place where their body has just got undergone too much injury and everything that we do is not going to be enough to do it. And that is part of life. That is not my failing right, but that means understanding the bigger context of the life cycle, of understanding what the ICU is in the context of the medical apparatus. And if we don't say that, if we don't think about that, then we're prone to this kind of injury. And so what?
Speaker 3:When we talk about hospice first, whenever I say that word hospice, I always, particularly in a patient care context, stop and with a person, with a patient or with their family, I'll say, like that's a, that's a big word. Do you know what that word means? What's your experience? Have you heard of hospice? Do you have experience with hospice? What I find is about a third of people have heard ofice and, or I should say, about a third of people have never heard of it. About a third of them have heard of it and have some knowledge that's accurate, and about a third of them have heard of it and have some knowledge that's inaccurate, right? So that's why I always stop, because that's going to be kind of a minefield.
Speaker 3:Also, if we're talking about hospice, we're talking about people that are at end of life, who are approaching the very end of their life, and there's a lot of emotional resonance there too. So it's important to kind of stop and unpack that with folks. The failure of our system to do that is part of the reason why people have so much misgiving and misunderstanding. Because you know there's there, it's scary, and nobody is, is sort of holding get coming back, julie, right, that image of like holding the space to go. Yeah, it's scary and we can talk about it, and then it becomes less scary as we talk about it, right?
Speaker 3:So what is hospice care? Hospice care is care for people at the end of life, which is defined within the hospice benefit as the last six months of life whose goals for their healthcare have transitioned to focus entirely on their comfort and their quality of life, right? So if I am a nurse in an ICU and I see my job is staving off death, I don't want to hear about hospice. I don't want to talk about hospice, right? And I don't see there's no such thing to me as a relief valve. It's like I get these people through or I failed, right? That is a stuck context. Many of those patients are going to die, no matter how perfectly you carry out their care, and all I'm going to receive is injury from that. If, instead, I can see that I am engaged in the care of people who are very, very sick and they have indicated by coming to me in the ICU that they wish to continue living, their goal is to be restored. Their goal is to go on living. I'm going to do everything I can to accomplish that goal. Over time, their body is going to tell us whether or not that goal is achievable when they come in here. We don't know. We're hopeful. We hope we can get them back to where they were before Over time.
Speaker 3:What happens in the ICU? We see whether or not they can. We see whether their blood pressure stabilizes and we can wean their pressors, which is evidence of their body healing right. We see whether they can come. They can breathe on their own. They can do their work of breathing. They can protect their airway there. They get extubated. We can see whether they can sit up and eat and drink or whether they're going to need a feeding tube. We can see whether they participate in therapy and they're going to get back on their feet right.
Speaker 3:As hours turn into days, turn into weeks, we see that story evolve. Or we see them get stuck. You know, we can keep their body functioning, but they need these supports and they can't be weaned from them, which is evidence that their body is no longer recovering. Or we see them decline that, in spite of what we're doing, in spite of maxing out their pressers, they're still tanking right. Something else is happening. We've done everything that we can and they are actively dying, right. That time piece that's there.
Speaker 3:And we would step back and contextualize it and say like, yeah, you brought me a very sick person and what time has shown me is this person is dying. They are not sick and recoverable. They are dying and that's part of the life cycle. And my job now is not to try to restore them. My job is to help them through their dying process and to do that with as much comfort and as much dignity as we can possibly manage. And what that means is supporting the people around them to understand what's going on, which requires communication skills and awareness right, and the ability to do that, to have those conversations to name what's going on right, which requires both awareness of what's going on, a language for that permission to do that in that process. And so, in our siloization of medicine, we have created a system called hospice that is full of people who are really good at that process.
Speaker 3:For people who are at the end of life and who have shifted their goals to focus on comfort, we have a system to support people through that process, to make sure their symptoms are very well managed, to make sure that their families are very well supported. Right, the hospice benefit doesn't end when the person dies. There's bereavement services that carry on with their loved ones for up to 12 months after that fact, right? The question is that that knowledge and that skillset that's embodied by hospice, those skills are needed by everybody in the system, particularly people that are going to take care of folks that are dying. So how do we share that knowledge? The ICU nurse is going to have patients who came in wanting healing and whose bodies show us over time that that healing will not be possible. How are we going to support them to do that? So there's an educational need to see.
Speaker 3:Getting back to this question of context, right, to see the ICU as within a context of a larger system, to see our work within a context that I'm here to serve people who are very sick, in accordance with their goals, and know that their circumstances are going to be dynamic. They're going to be changing and as my circumstances change, my goals change. And as my goals change, the plan of care changes. And can I see myself, as an ICU nurse, as having a really, really, really important part of that care, both in the delivery of the medical services right, paying the paying the bags right Running, giving the actual medications, doing the thing that's making the difference and communicating, seeing what they're going through in real time, being the person who's there, putting the most time and touches on that patient, on that family, and can I recognize what's happening and help them through that process? Right, can I help prepare them for what's there? Can I see where they are? Right, is this a family who has been watching mom decline for years and they know that it's coming and they've made peace with that because they understand what that looks like? Or is this a family who's never considered the possibility that they're going to lose this person and they're working that out for the first time and they need somebody to help make that space safe to like, think and talk about that, right? So I think, right, our opportunity is to look at what hospice is and recognize there's elements of that part of our system that are applicable in other places, and think about how do we get those perspectives and those tools to other people that are touching that same part of the life cycle and how do we just really get a deeper cultural sense for all of us about what the life cycle looks like, like what it is and how we can navigate that effectively? Right, because our, the care for our patients isn't just what's your pain on a scale of 10, right, it's like do I know what's going on? Have I had a chance to think about what that means for me? And is the care that I'm getting in alignment with what my care goals are? And that, I think, is.
Speaker 3:There's this other layer of who gets to drive that conversation that I see nurses often getting caught inside of, and that's a piece where there's flexibility, but I think we don't often name that right, where our nurse is the first one to recognize like listen, mr Smith, and 5B is not going to get better, right, we're just watching them decline. And can they be the one to recognize like, listen, mr Smith, and 5B is not going to get better, right, we're just watching them decline. And can they be the one to put that on the radar? Can they speak that truth? You know, as a medical team comes and I see so much movement on that, right, like our ICU teams, our rounding process has gotten so much better over time.
Speaker 3:You know it's like what the standard is that the nurse is there in that conversation and that the medical, the rest of the medical team, is looking to the nurse and saying like, and what else are you seeing and how is this conversation going? There's such an opportunity. It's such a powerful role If we can see those opportunities, right. If we can think about it in this deeper way, right, if I can get out of this sense of like my whole job is just to make sure this person doesn't die. It's like, no, I have a way deeper job than that. Like that's a really important part of my job and I damn sure better be good at that.
Speaker 3:But there's this other thing too, which is like seeing and I'm also keeping track of where this human being is in their life cycle and how they're navigating that space and how the people around them are navigating that and what they need, right. And so in palliative care, we rely on our nurse colleagues to like, recognize, like hey, these guys are really struggling and this is really heavy and it's really serious and can we get some more support in here? Can we get a palliative care team in here? Can we get some more people to help support that process? But palliative care is not owned by palliative care providers. Right, the nurses at the bedside are primary palliative care providers, in the care that they're giving for patients directly and addressing their symptoms and supporting them with communication to make sure they know what's going on and in helping to make sure that what's happening around them reflects, like, what their, what their wishes and interests are.
Speaker 2:So so how does you know? I I think in in our messages I mentioned that educating about hospice and palliative care is obviously an important piece to increasing utilization, because utilization is, you know, typically.
Speaker 3:Not as good as it could be Right, right.
Speaker 2:So yeah, not as good as it could be Right, right, so you know, thinking the thought experiment of hospice as a release valve for moral injury and critical care nurses.
Speaker 2:How you know, because the education piece is just one piece, it's, you know, you can tell someone why the service is valuable and important and and they can have full comprehension of all of that, but if they don't have the existential maturity to make the decision to utilize the service, all that education is worthless. So I do think that that's a larger societal, maybe psychosocial, issue. I mean, we've all experienced the diversity of the psychosocial emergence of emotions in the dying process. In the dying process, meaning there are cultural differences that are just obvious, you know, there are cultures that are very stoic, there are cultures that are very expressive, there are cultures that are, you know, somewhere in between. There's all, there's this, you know, spectrum of experiences of how the psychosocial awareness of death and dying is treated. And to me, this conversation from a philosophical perspective, to you asking you, because the education piece is just that one piece, it doesn't matter if the existential maturity is not reaching that psychosocial level.
Speaker 3:Yeah, well, it's comfort with that conversation, it's comfort with the idea, right, and so I think part of it is we have to expand our notion about education, right. That it's not just about facts, it's not just about somebody being able to say, like hospice is an insurance benefit that's available to people in the last six months of life whose goal is comfort.
Speaker 3:It's recognizing that we're talking about goal transition. Let me take a step back. There's a formula that I think is like our way star right, our true north, which is this the right plan of care for any patient hinges on what the goals are that we're trying to achieve right, and the goals depend on a prognostic awareness, right. So let me run that forward. It's what I think the future is going to look like. That dictates what my goals are going to be for myself, and then that's going to establish a plan. So here's the example I often give. I am right now, as far as I know, relatively healthy. If tomorrow I wake up short of breath, I'm going to go to the ER. If I can't breathe, I'm going to the ER because I'm freaking out and they might ask me there you know, alex, what are your goals for your care here? And I'm going to be like what are you talking about? Are your goals for your care here? And I'm going to be like what are you talking about? Get me better. Yesterday I was healthy and I could breathe and I want to go back there, all right. And so they're like okay, well, what can we do to achieve that and I'm like whatever, cut chunks off me, irradiate me till you're in the dark, you can poison me, I don't care, just get me back how I was before this. Right now, fast forward a couple of days, we've got a bunch of blood work and all this kind of stuff. They come back to me. They say, alex, your shortness of breath is not a viral pneumonia Like all the shortness of breath in your life before. This was. Your shortness of breath is because you have very advanced cancer and it's closing off parts of your airway and there's pneumonia that's in there and it's in your chest wall, it's all over your body. And they say what are your goals here? I'm like well, the antibiotics you're giving me really seem to help ease my breathing, so I want to keep those going.
Speaker 3:But I'm not sure about this chemotherapy and radiation. I think I want to learn more about that because I don't. I don't have a good enough sense of what that's going to look like, and I've seen people go through that and I don't know if that's going to be good for me. They got pretty sick and I'm not sure why I want that to look. I definitely want to change my code status, though, right. So they asked me in the ER what are you willing to go through? I'm like anything, you know you can break my ribs, you can do whatever you have to do. And now you're telling me I got all this cancer in here. If my heart stops it's probably going to be because of this cancer, so you're probably not going to be able to get started again. And if you do, with all this cancer in my ribs, so every breath I take after that's gonna be painful. I don't want to go through that, all right. So what am I demonstrating here?
Speaker 3:Dramatic shift in my goals in a very short period of time, based on what my prognostic awareness, my understanding of my situation and what it means for my future. So what's crucial is that patients need to be told as best we know what's going on with them and what that means for the future, and that's with sensitivity to what they want to know, because sometimes people don't want to know. So we need to ask how much do you want to hear? Who do you want to be involved in your decision making? People can divert that to someone else, but whoever's making the decision needs to know what's going on and, to the best of our knowledge what that means for the future, so that they can digest that and think about what it means for their goals, which has to do with who they are and what's important to them. What is an acceptable quality of life? How do they define that? And then that's what's going to determine the right plan of care for them.
Speaker 3:The thing I want to point out now is that that whole enterprise going from prognosis to goals to plan has an emotional weight underneath it, because if you come in and tell me, alex, you've got advanced cancer and your life is going to be shorter than you thought it was going to be two days ago, that means all the long-term things I had in mind to do are probably going to be off the table, and if I'm going to use the time and energy that I have left effectively, I'm going to have to grieve the loss of those futures that I thought I was going to have. This is an intellectual exercise to share this information, and all that information has an emotional weight. And so the education to come back to your question, what is the education that's needed at the level of the nurse in the ICU? It's, yeah, the awareness of what hospice is and who it's for, and the capacity to hold and be with the emotion that attends these conversations, that if the nurse can recognize the prognosis, she can see.
Speaker 3:I'm maxing out these pressors. Their organs are shutting down, their creats going up, their liver enzymes are going up, their mentation is terrible. These are the signs of someone who's inactive, dying. That's communicated. What that is, that's going to have an impact.
Speaker 3:If you come in and tell me that my dad is dying, I'm going to feel a kind of way about that. If you are going to want to hear from me what that means for the goals, I'm going to have to get through the emotional part of that before I'm going to be able to talk to you about what my goals are for his care now, as a person who's speaking on his behalf. If you want me to get to the place where you don't have to keep putting him through this thing cause you know it's futile at this point I'm going to need help with the emotional weight of going through that process. I need to know what's happening, I need time and I need support and understanding what that means and I'm working my way through that where I can go, where I can get to that place where I can go.
Speaker 3:Yeah, if he's dying, if he's not going to get better, he wouldn't want to go through this, right? What he would want is to get his dignity back. He'd want all these tubes and all this stuff out of him and he'd want to be comfortable and help me. Help me go through that with them, right? So that's the crux of the thing. It's not enough to just understand the life cycle and understand the system and recognize these signs. That is necessary, but insufficient.
Speaker 3:What I also have to have is an awareness that that is an emotional process, cause you see people you've seen veterans, you've seen vet nurses who are like six is dying, and then they go in there and they just start trying to bully the family into transitioning to comfort, like this is over, it's done, and they're just trying to tell them what to do. They're stuck on the intellectual exercise. This is at. At the end, we can see that he's dying, you got to stop doing this, you're doing this thing, and there's no awareness that, yeah, you guys are on the same page. They don't want this to keep going if it's not going to work, but they, they, they need support for the emotion that's showing up that I'm confronted with the dying of someone who's irreplaceable to me and I, and and I feel like you're telling me that I'm going to kill him. You're at, you're telling me I got to make this decision right. There's a gentleness that has to occur in that communication for someone to to hear no, you are not doing. Their body is dying. What you're doing is helping us make sure that we support them properly, to help us recognize that, given this new prognosis that it's clear they're not going to get better, that, what would his goal be?
Speaker 3:Most people's goal is not to live as long as possible, no matter what. There are people out there that are like that. They're like, yeah, I don't care if I'm not going to wake up and be able to recognize my family and watch the chiefs, you know, contend for a third Superbowl win Right, like I just just keep my heart beating as long as you possibly can. Those people, in my experience, are very, very few. Most people will say like, yeah, if it's clear I'm not going to get better, I'm not going to wake up, we're not going to know my family's there, I'm not gonna be able to eat a bowl of ice cream, you know I yeah, I don't want that. What. What you're be dignified. I want my family to be okay, right. These are the concerns that we hear from most folks. The challenge is the way our system is set up. Is we need direction? Right, I need that plan of care.
Speaker 3:But the right plan depends on the right goal and the right goal depends on that prognostic awareness right as my situation changes. I have to know Most people's goals start the same Get me better, put me back how I was before this, help me go on living longer, enjoying that quality of life. As time goes on, with any illness that becomes more difficult. At some point I can't be the way I was before. The cost of trying to get me there goes up. Right, I'm in the ICU, I'm on four pressers, I can't leave. You know, do I can't wipe my own mind, right? The cost is going up, the benefits going down. At some point I can't be the way I was. At some point I may not even be able to survive. So as that cost benefit shifts, the goal starts to shift.
Speaker 3:People are less focused on restoration, particularly when it's clear I cannot be restored. They're more focused on their comfort and their quality of life. At some point that's the entire focus where there may even be things to keep me alive longer and I don't want them because this quality is not acceptable to me. Those are personal questions. What I tell patients all the time is what we do for you is not so much a medical question, as it is a personal goals and values question that has to be informed by an understanding of what's going on with you medically, right? So, prognosis, what's my situation and what does that mean for my future goals, that's the side I carry, what's important to me, what am I willing to go through, what trade-offs am I willing to make? And then the plan is the one that reflects that goal right, and underneath all the emotional weight of hearing that my future won't be the one that I was hoping for of you know, talking about what's most important to me of confronting, like making these decisions, and surrogates and everything else.
Speaker 3:And so I think when we talk about that educational piece, the education has to include the emotional component.
Speaker 3:That, for me, is one of these big challenges.
Speaker 3:Right, as we said earlier, we are fearful to talk about hospice because it's it's in a part of the conversation that I'm really uncomfortable with, that I'm really fearful about, and I need somebody to hold that space with me where I can enter into that conversation that frightens me and can show me that it's safe, julie, just like you described so beautifully earlier.
Speaker 3:Right, that holds that with me and I can look at them and I can go, oh, we can talk about this. And then and this is, I think, the really compelling part is if I can see that outcome, if I can see how much better it is when we can help someone through that process, right, when they're properly supported and they can make a hard decision and they can get to that place of comfort and they can sit a hard decision and they can get to that place of comfort and they can sit, step back and go. I know I did right for my loved one because I managed my emotions and I thought about what they'd want and I carried that forward and there and this is. It was a situation and I hated the whole thing, but I know that I did my job. I supported them, I made sure their voice was heard and we did the right thing for them it's not taught really to nurses to do that.
Speaker 1:I think ICU nurses get more opportunities for the experience to talk about that, because we get them at their death a lot of the times. I feel like a lot of nurses feel like it's not their place. I had a terrible. I was a nurse for probably about two years in the ICU and you know by then you're already charging and you know that's how they how they do. But I was in charge that night.
Speaker 1:I also had patients and a gentleman who had been on the ventilator and who had been on like a balloon pump for a really long time. He needed a heart transplant and we couldn't find one. He was too sick. He, you know, he kind of was at the bottom of the list. So we ended up getting him off the balloon pump and he had been on the ventilator and we had been sedating him and this, that and the other and trying to wean him a little bit. And then he was just on some PRN push medications. Well, he extubated himself and he was what they. What's allowed is like these partial codes, these partial DNRs like give me medicine, don't give me chest compressions. Give me chest compressions, no medicine. Put me on the ventilator, but don't that which is so vague and so gray. And so he was gray, vague, and it was probably literally gray.
Speaker 3:He was literally gray too, and so he was probably literally gray, jeez.
Speaker 1:And so he extubated himself. He was awake, you know, and he was okay for a while. We did an ABG, wasn't too bad. I think we had him on like a private face shield, I think, or an arm rebreather or something like that. And within seven or eight minutes, you know, and of course we're like okay, rest of the and of course we're like okay restaurant is there. We were all there. He went into VTAC and the wife was there. We pulled her in and I can't remember on which side he was. I think he was a do not re-intimate, but I think he was a chemical code, but maybe not CPR, I'm not sure.
Speaker 1:Well, the wife couldn't make her mind and I was just like you got to make a decision right now, and my naiveness and kind of a little bit of thinking that you know I and it, probably I don't even know what I actually said, but it felt in my mind that I had kind of pushed her to like he's ready to go, he's dying you know, and so she was kind of like like okay, don't do CPR, let's just let him pass.
Speaker 1:Those words came out of her mouth. I heard another nurse heard respiratory, heard we were all in the room but now he's dead. We didn't code him. Now she comes back and she's livid and very angry. She took our names and put it to the nursing state board of nursing and we got called in about this.
Speaker 1:You know, negligent, angel of death and and all this kind of thing that dramatically shifted me of how I and I approached family members, and I think every nurse could probably think of an experience that either pushed them one way or the other to talk about death with families, and you know, and then you get the, then you got the transplant network, who you know. They got all their own rules in of itself, you can't talk about this, you can't talk about that, you can't. You know, you're not going to say it, and they have to be trained, and so there's so much just opposing information that nurses are. They just come across. It's not even like a scheduled class and we're going to teach you about this and we're going to teach you about this. It's as you, it's just experience, and so I wish that it were more mainstream, that we could or we felt a more ease to talk about it, just like we talk about putting someone on dialysis or can you know?
Speaker 1:Crt continuous, that is a huge thing, you know. You have to get the line, you have to get the doctor, you have to have a one-on-one nurse. I mean it's a big deal and it's quite expensive and it honestly rarely works. You might be on that for four or five days, you're still gonna die and so why can't we talk about the opposite of that? You know, it just doesn't feel it's treated as if it's inappropriate to bring those kind of things up and I just wondered what you thought about shifting that yeah you know, in the setting within the hospital.
Speaker 3:Yeah, yeah, there's a couple. I mean there's so many things you just touched on with that. I mean just that experience you described like there's so many layers that we could peel back and unpack, but like the two things that really jump out to me, you know. The first one is you know to your point about, yeah, nurses often feel uncomfortable to be drivers of that conversation. Like, absolutely, this is the context that you're in, right, who are the people you're working around? What is the delegation of responsibility? Like what are you comfortable with? Who's going to have your back right? Like, so, if you go to the extreme extent of like what I'm describing, of like really participating in this conversation, like bringing someone forward, are you going to be supported in communicating in that way? And that's going to depend on what the local culture is around all these questions, right, if you're working in an ICU that's dominated by medical providers who really see the job as saving lives, right, and not the care of very sick people, that is going to include some of these people dying and helping support that that you know. If you don't have a robust, if your local culture does not support a robust approach to that, then, yeah, you're probably not going to be very well supported in those conversations and knowing what the boundaries are and how that works is going to be important to keep you out of trouble. Number one and number two to think about is that a culture I can succeed in, right, if there's not room for me to be a provider of care here, which includes those communication and emotional aspects like, am I going to be able to succeed and thrive in this space over time? And that may not be such a big question when you start out, because you're mostly just focusing on, like the bread and butter skills, that acquisition, and then, as those come into play, you're like, hey, I'm learning to notice when these people are dying and I'm learning to see this stuff that's there and I think that I feel comfortable enough to recognize this, to participate in that. Am I going to be supported to do that? And so you may come to a place where the place you started isn't the place you finish, because you get everything you can from that environment and then it's not going to support that next stage in your growth to build those other skills.
Speaker 3:Also, recognizing that people come to their training with a variety of skills, right, I have a dear friend who were the same age. He's done his career in the service industry and just went to nursing school and he's bringing a lot to that, that work that the nurses around him don't have fresh out of training Cause they didn't spend, you know, 30 years in bars seeing people decline in alcoholism and struggle with emotion and learn how to talk to them, you know, and deal like. He tells me stories of his work in the ER and it's like clear, his work in bars is serving him really well in his work as an ER nurse. Right, his ability to connect with his patients and communicate with them in effective ways is just a very different place. So there's that aspect of it.
Speaker 3:And then the other piece, I think is, yeah, that question to the end, right of like, yeah, how are we going to like do that communication, like where do we sort of form that education? And that, I think, is very much like a live question, like to me that's very much like what can we do systematically to help people come along in that space? And and the challenge is there's a local politics like we're just talking about. And then there's the societal piece, right, caleb, and that's the question. I think that, like you're asking is like, as a society, how do we move the needle? You know, you're you're reading and thinking and writing about these big historical contexts and sort of shifts in, like, mass culture, and those are questions I find extremely interesting and and, yeah, like to the degree we can see these patterns and flows that might tell us something that we can bring to our local cultural space. But in the end, I think we also want to try to match our sphere of concern with our sphere of influence. So what do I mean?
Speaker 3:I'm often overwhelmed when I think about all this stuff we're talking about. The system is so big, it's so broken and I'll never be able to fix all these deep problems, and I'm overwhelmed by that and I feel broken down and I'm like I don't want to do anything. I quit and and I can make an impact right, every patient and family that I come across, I can make an impact with them, my local unit, my team, the wards that I go to, the people that I interface with. Every time I talk to a nurse at at a bedside, there's an opportunity for me to embody something right, to embody this conversation, julie, to your point, to offer something to, to query from them. Where are they with this thing?
Speaker 3:If I go to the icu and I see this horrible situation, I go to the nurse, I'm going to ask her, like, how this patient's doing, and in her answer, in his answer, I can hear how they're doing too, right, like are they telling me all this medical stuff and it sounds like we're missing the point. Are they having a lot of emotional distress about what's going on? And so what I'm going to endeavor to do is try to meet them where they are. If it sounds like you were missing this larger context, I just want to then take this opportunity to name that and if I can talk about, like, where the rest of that is, and if I can name the emotion that I think is probably coming up there, like, and this is really, yeah, like. So, hey, tanya, it sounds like you're doing a great job caring for you know, bob, and it's really tough.
Speaker 3:And can I just share a moment of our common humanity and the struggle to sort of be in the face of that and just name that with them and then talk about, okay, and what's our next thing going to be, and be part of that educational process, right, so can I embody that piece that we've described as missing, right, the oral tradition of the hospital, right, like that, all of us, as we grow in this space, we're hopefully learning and building these skills and perspectives, and can we continue to embody that with the people that we come across like in that environment?
Speaker 3:And I think the question you're asking is a really profound one, which is like the system isn't teaching us that. How do we systematize that knowledge? And for me that's like the next big enterprise is how do we make the emotional parts of this work a formal part of our education? And that's so tough because it evokes our own stuff. Our stuff comes up. If I say, julie, we're going to talk about dying and how we communicate with patients about dying, you're not going to hear anything I say, unless we can make a little space for what?
Speaker 3:comes up in you when I say that and that can be done, and to me that's like the frontier is. Can we create educational contexts that invite the emotional experience, emotional reality of these people that are learning, that are in that space? Can we go? This is, this is heavy. Can we begin to reflect on that? Right?
Speaker 3:The process I think that you both embody and share in this conversation is what that looked like for you. You know, when you got knocked over by that first scale and you look down and there's a rod sticking out of your leg and you're like, okay, conversation is what that looked like for you. You know, when you got knocked over by that first scale and you look down and there's a rod sticking out of your leg and you're like, okay, maybe you need to take a break and get this rod out of my leg. And what's that going to look like? Where do I go to find someone that can pull this serious injury out of me and then help me learn how to walk again? And then come back and be like, okay, what can I kind of do here?
Speaker 3:You know, and so I think, you know, you all are explorers in that space. You've lived it and you're figuring it out and you're you're contributing to that and you're contributing to both our cultural conversation, right, You're putting information into the mix that people can come and find and participate in, and I think it sounds like also thinking about and how would we formalize it Like? What would that process look like? Right, and it's tough because you know the learning environment for nursing it's not a, it's not a normal classroom man.
Speaker 3:You know, like there's so much, there's so much going on and there's so much richness, but how do we take advantage of that? And how do we do that when the people that we've relied on to do that, who have a deep background so they can meet each moment? Right, because, like that case you described, like you said, every nurse has those stories that stay with them forever, right, and that was the thing that was crazy to me as a medical resident, like being on nights on the oncology floor and seeing a patient really break the wrong way and and the nurses did everything properly, but they were so traumatized by the experience that at the end of the shift there's a note sitting on the table Like you guys are great, I'm not cut out for this and I'm gone.
Speaker 1:Right.
Speaker 3:Because I can't make sense out of what just happened and nobody was here to help walk me through that and, like, in process, through that. And so can we have a system that's dynamic enough to recognize, like, the moment that someone suffers this injury, the moment that someone's confronted with these lessons we don't know what it could be two o'clock in the morning, right, and the need is there at two o'clock in the morning. And what would a system look like that can support someone through that, that crisis, that is their education, and hold them together as a human being and say, okay, great, and now that you're, now that you know this, now that you've experienced this, like let's, let's unpack that and let's do that. And I I'm heartened by things like ICU debriefing sessions, right, where there is a recognition, like the story that you told, right, what is that? That needs a debrief, right, we're going to have that moment and what are we going to do? We're going to go.
Speaker 3:This partial code thing is nonsense. It doesn't make any sense. It's confusing. Why was it so hard to figure out what to do in that moment? Because we hadn't just talked about what was going on. Why is a partial code nonsensical? Because it's futile right. If I do everything perfectly in a code. And somebody with advanced illness? Somebody with a stage four cancer? If I do everything perfectly in a code, it's less than a 5% chance that anything's going to happen. If I take something out like chest compressions, it's 0%, that's futile it's not going to do anything.
Speaker 3:So if I the first thing that I'm in that story going it's like, yeah, partial codes are a bad idea, and and it's. And what does it lead us to? Story going it's like, yeah, partial codes are a bad idea, and and it's. And what does it lead us to? A catastrophe, disaster where you, as a medical provider, are trying to make sense out of what you're supposed to do, and then what we can really step back to is that little sidebar that I took prognosis goals and plan right what's underneath that whole thing, and that's the place I feel like we get distracted.
Speaker 3:We're so focused on plan, plan, plan, plan, plan, plan plan. Our training is about plan, plan, plan, plan, plan, plan, plan, under the assumption of goal, under the assumption that everybody wants everything for effort, and the truth is that ain't so. But the only reason that their goal will change, the only reason they will articulate a different goal, is because they've understood the situation is going to be different, is because they've understood the situation is going to be different. And so we hold this responsibility, like the prognosis, the medical situation, the you are inactive, dying. That's our expertise, that's our recognition, that's the piece that we hold. We have to communicate that. We have to be good communicators at that. We have to not only have the skill to recognize it, but also be able to gently open that conversation and work through that, recognizing that it's going to be quite confronting and probably pretty difficult. And I should also pause there and say not all the time. Sometimes people are really ready to hear it. Sometimes they've, they've known that, and then you've named it and they're like oh my God, thank God someone said it, cause I've been feeling like I'm dying for a while, and my doctors have all been scared to say it and I I knew there was something going on, because people were acting weird around me or I can feel it in my body and there's a readiness that's there. So that's, and that, I think, gets back, caleb, something you touched on earlier. Right, is this like cultural context thing? Right, like, yeah, there's these like different cultural aspects.
Speaker 3:The thing that I think is, when we get to the level that we've been talking about, which is the level of the individual human person, the patient that we're taking care of is like their culture may not. It's like there's other layers, like, okay, I'm, I'm, you know I'm Chinese. Okay, do I see myself as part of the Chinese diaspora? Do I participate in that culture? Do I feel excluded from it? Right, like, my culture matters and the way that I see myself inside of that matters too. So, like, at the level of the individual, we have to get all the way down to where they are I talk about. We need to meet them where they are. They're situated within a context that may include their ethnic background, their religious background, their their local cultural tradition, like the town they grew up in, the neighborhood, their socioeconomic context. There's all these contextual pieces that are there that give rise to what is their existential maturity, right? What is their readiness to participate in these kinds of conversations? Like, how much time have they spent and thought about this?
Speaker 3:I found working in rural Missouri, working with a lot of farmers and a lot of deeply religious people, and a lot of those people came to those end of life conversations ready because they lived lives. They were part of cultures that saw the cyclic nature of life conversations ready because they lived lives. They were part of cultures that saw the cyclic nature of life. They saw death, they were around it, they knew what it was like, they knew that it was coming for them. They thinking about it their whole life. They were from religious traditions that reflected on death all the time and talked about the seasonality of life, and so they were ready because they had prepared.
Speaker 3:And our culture gets away from that. We don't see life and death, we isolate our old and our infirm and we siloize dying right In the medical system. We say, oh, they're dying, get a hospice, yeah. Or if we're not ready to accept that they're dying, we say, well, they're not ready for that yet, right, and we separate it out and we hide it, and so we don't have a sense of comfort with that context. We can't. We have a hard time seeing it when it's there, and so there's a real depth to the challenges that get in the way. You know and Julie, your example is so good it's like the craziness of our local context where we allow for delivering care that we know to be futile, and that's confusing and that's distressing and like what is that about?
Speaker 3:And I'm not afforded the opportunity to say like, hey, I think we need to reform the system. I don't think that's a good thing for us, or you're. It puts me in a bad situation. If I'm the nurse here at three o'clock in the morning and he saw facts, debates, and now I'm trying to have a conversation that we should have had under the light of day, with support for the emotional of her. You were doing the best you could with what was in front of you in a broken system with communication. That's really lacking, right? And then she came away feeling really upset Holy cow, what a surprise, right?
Speaker 3:So if we're going to say that's not the outcome that we want, then we need to think about okay, well, how did we get there? Right, we put our nurses in a bad situation because we have an order set here that doesn't make sense and we don't give guidance of what's going on and the wife is not in a good situation to understand what's happening. Because we're not sharing the prognosis accurately. We're not saying, hey, if we're not reintubating, why would we not do that? Well, it's because we've reached some limits. Okay, so let's say we've reached some limits and let's talk about what our goals are here in that space. But if we rush that and we do it in the moment, it's going to feel chaotic, it's going to feel scary. After the fact everybody's going to second guess it.
Speaker 3:Right, we want to have this communication as a controlled environment as we can. Sometimes it can't be helped. Sometimes they come into the ER crashing. We're doing all this stuff. It's a disaster and we're going to have to figure out how to support people to process that trauma after the fact. But often we've had control somewhat of the situation, to the point where we can be thoughtful about how and when and where that communication takes place. And then we need to have the courage to do it and we need to have systems that prioritize and emphasize that, that recognize that like figuring out prognostically is this someone that we think is going to be recoverable, or is this someone who's dying? And how do we communicate about that? Right Cause, even like, what does it mean to be dying? Right, there's like we can do a deep philosophical unpacking of that and look at the biology and the legalism of it. Here's how I define it.
Speaker 3:The human body has an incredible capacity for healing I mean damn near miraculous but at some point we reach a limit of the body's ability to heal itself and keep itself going. And so even all the incredible medical things that we can do in the hospital I work at one of the most astonishing medical institutions in the country and even all those things that we're doing are not fixing what's broken in the body. Our medical knowledge is what are the circumstances that the body requires in order to heal? So all these things that we're doing intubation pressers, all these medicines we're doing, these things that we're doing intubation pressers, all these medicines we're doing we're just trying to find the balance that we know the body meal needs in order to be able to heal itself. And if it begins to heal, there's recovery potential. And if it can't heal, if we just have you stuck in stasis, then your body has shown us that it's reached the limits of its ability to heal and then you're dying.
Speaker 3:The myth there's this myth that I think we're always up against in the ICU, which is the myth of stability. So what happens every day? Our nursing staff are in there and they're looking do I? Am I holding the balances Right? The potassium looks right, the pressures look right, urine output is good, holding stable. Family comes in. They want the update. You go like he's stable. Every single day. They're hearing stable, stable, stable, stable.
Speaker 3:There's no such thing as stability in an ICU. You're either getting better or you're getting worse. If you hold all those numbers, perfect, we're stable. Every day, my body is weakening. I'm deconditioning, right. I'm losing the strength of my swallow. I'm losing my ability to protect my airway. There's no such thing as stability in the ICU. I'm either getting better, right, my systems are taken back over. You're weaning the pressers because my cardiovascular system has recovered. You're decreasing the amount of ventilatory support because my breathing apparatus has improved. You're weaning me off of my sedation and my alertness is improving. I'm either getting better or I'm getting worse. There's no such thing as stable. And what does that reflect globally my system's ability to recover. All the stuff we're doing in the hospital is we're just maintaining balance, the balance that's required for the body to heal itself. But the body has to heal itself right and there's a limit. So can we recognize it and can we say what that is, and can we help attend to the emotions that come up when we're confronted with that reality?
Speaker 1:Yeah, so profound. It really makes me wish that I had a little bit of like that. I had had this conversation 10 years ago, when the thoughts are swirling around but it feels like there's no support, and so I hope that people listening nurses well, I'll take the nurses listening to this podcast and even any healthcare worker really can just take a step back from all their doings to really let this conversation sink in so that they can then question and inquire within themselves what do I think about it? What do I think about death? Where am I with my aliveness and how do I feel about it, my aliveness and how do I feel about it, so that then you can help other people explore, because it really just is exploring. But I think it definitely starts within, and that's something that's not taught, and so hopefully, you know, our, our little podcast will resonate with a lot of people to start thinking about their experience.
Speaker 3:Yeah, I think that's beautifully said, julie. I think that and I wow the exploration right. I think the gentleness of that of it's an invitation to curiosity and exploring and that's something that's for you and it's something that the people that are around you your patients, their families, your colleagues that we're all exploring right, and so can we be open and can we be gentle inside of that, and I see the conversation you all are hosting as that, that as an invitation to reflection and to openness and curiosity, and I I just really appreciate the work that you all are doing and hosting this. I'm so grateful for the opportunity to come and just be a part of that, for this time that we've shared together. Um, that, yeah, if it can help someone take us, take a second to take a step back.
Speaker 3:To me, that's, that's the philosophical moment. Right Is like can I reflect on what's happening? Can I come out of my victimhood that things are just happening to me constantly, which is often, I think, the way we feel in the situations we're talking about and recognize like, oh no, this is happening and I'm in it and I can think about it and I can think about which way do I want to go with this. This isn't going the way that I want it to go. If I look down and I'm messed up I don't want to be messed up there's something else for me, right, there's. There's more stuff that's out there, people that care, there are tools Other people have dealt with this before and I'm going to make my own way and I want to find what's going to help me make that way. So I love that. Yeah, the exploration, the exploration, for sure. So so important, yeah.
Speaker 2:Yeah.
Speaker 1:So good.
Speaker 3:Thank you so much. Thank you, guys, this is a treat. This is a real treat.
Speaker 3:Yeah, and thanks for letting me talk, just share from my experience and speak to these really important questions you guys are raising. I think, if it's okay, the one other thing I might offer, just because we have talked so much about and recognize there is so much confusion and misunderstanding and fear around talking about things like hospice I've talked quite a bit about hospice. If I might just offer to whoever is listening to this, knowing that our hope is that it's nurses that are seeking palliative care, is for anyone with a serious illness, at any age, at any stage and no matter what their goals are. As I said very briefly earlier, palliative care is not owned by palliative specialists like myself. Palliative care, under that definition, is provided by everybody in the system. So every nurse at the bedside is a palliative care provider, right? What did I say? The focus of my work was Quality of life, with symptom management and communication and, as we've talked about, that is very much the work of every bedside nurse of helping support, good communication, of helping with comfort, of helping with symptom management, and so all of those things are owned.
Speaker 3:If you are struggling in your patient care, the palliative care team the team of specialists that are really focused on that is there to support you too. So we think about our work as being defined as for our patient, but we recognize that the wellness of our patient is bound up in the people that are around them their loved ones, their community, their family however they define that and the people that are caring for them too. We say, sometimes our patient is the patient and sometimes our patient is the nurse or the doctor on the other team that's there, that they need support for that too, and we're there to do that. And so I would really encourage everybody hearing this to see palliative care as an extra layer of support for everybody that's involved. That's right for anybody dealing with a serious illness, no matter what's going on with them, because that's that's who we are and that's what we're there for.
Speaker 3:And if this is helpful and this is useful, my hope and my expectation is that my colleagues in palliative care around the country, around the world, are similarly dedicated to supporting these conversations, to supporting our colleagues as they're trying to make their way in this work. That there's a struggle that's there and it can come at any time, and our system, insofar as it's defined, who's to be there to support our nurses in that struggle? Yeah, palliative care is a big part of that, and so I would be remiss to not take this opportunity to share some more knowledge and some definition that palliative care is not something that we have to wait until we're ready for. Anybody dealing with a serious illness can use that extra layer of support, and the people that are caring for them can use that support sometimes too.
Speaker 3:So thank you for this opportunity to to hopefully shine a little light on palliative care, which sometimes sits in the dark, which suffers from a terrible marketing problem because because we're really here to help and and people hear the word and it freaks them out and and then they're the door is shut to them to help that they could get. So reach out to your palliative folks, learn about more palliative care. Be a champion for palliative care. Embody that spirit of palliative care that says we're here to help and we're going to make sure that you're comfortable and you know what's going on and that your voice gets heard. Right. I think that's something we can all. We can all organize ourselves around. I love it, oh, absolutely.
Speaker 1:Oh, absolutely yeah, Perfect, perfectly said yeah.
Speaker 2:Thank you so much.
Speaker 3:Thank you guys. This is really a treat, thank you.
Speaker 2:We hope you've enjoyed this week's episode.
Speaker 1:Remember, the conversation doesn't end here.
Speaker 2:Keep the dialogue going by connecting with us on social media posted in the links below or by visiting our website.
Speaker 1:Together, let's continue to redefine nursing and shape a brighter future for those we care for. Until next time, take care, stay curious and keep nurturing those connections and don't forget to be kind to yourself.