Podcast – Avoiding the "Crash" into Dialysis

Up to one in four patients “crash” into dialysis unexpectedly, often with a catheter, which poses health risks and diminishes quality of life. This episode of Kidney Health Connections explores the challenges of patients starting dialysis treatment urgently and without proper preparation and education. Registered Nurse (RN) Emily Morey, a care manager at Interwell Health, describes the traumatic impact of these emergencies on patients, noting their fear, loss of independence, and increased vulnerability to infections and other complications. However, she emphasizes that patients can recover and regain independence with proper care and trust in their healthcare team.

The conversation highlights the critical role of early education and intervention in improving outcomes for patients with kidney disease. Optimal starts, which may involve preemptive transplants or planned dialysis with a functioning access, significantly enhance patients’ quality of life and ability to maintain their lifestyle. As a nurse, Morey also stresses the value of family support and a team-based approach in managing chronic kidney disease. Her stories of helping patients through these transitions illustrate the transformative power of compassionate, patient-centered care.

Transcript: 

Welcome to Kidney Health Connections, a podcast exploring the future of kidney health and the rapid shift to value-based care, where you can learn about the latest innovations that are helping patients live healthier, more fulfilling lives. Here's your host, Dr. George Hart. 

Dr. George Hart: Hello, everyone. The term crash doesn't have a very good connotation, does it? And crashing into dialysis is as dramatic and dreadful as it sounds. All too often, patients start dialysis having had little to no CKD care. Up to one in four patients crash into dialysis and up to two thirds of patients initiate dialysis with an unplanned start, which means they start dialysis with a dangerous indwelling piece of plastic, which is a catheter through which we do dialysis.  

One way we improve outcomes while lowering cost is by increasing the rate of optimal starts, which we define as a patient receiving either a preemptive transplant, starting dialysis at home, or starting dialysis with a functioning connection between an artery and vein, which is an AV fistula or an AV graft.  

I'd like to welcome today our guest Emily Morey, who's a nurse manager at Interwell Health, and she joins us today for a conversation on how we can boost optimal starts with early modality education.  

Emily, nice to have you here. Thank you for all you're doing and look forward to our conversation. 

Emily Morey: Thank you for having me. 

Dr. George Hart: Oh, absolutely. You and I have worked in dialysis centers. We've cared for patients now for a long time. I think I have more experience than you do, but don't let the gray hair fool you. And we've seen the impact on patients when they crash. Give this audience a little bit of perspective. What does that even look like? 

Emily Morey: Crashes are really, in a word, traumatic for patients. I worked in a dialysis clinic outpatient for four years and handled a lot of the new in-center admissions. And I would say that, roughly, we fell along the track of the statistics. About a quarter of our patients had no idea that they had kidney disease, had no idea that they were in trouble, that dialysis was in their future. And many of them hadn't had adequate preparation. Often, they would come in with a family member or a caregiver, not always, but by and large they were terrified. I often describe it as having suddenly a part time job that you never wanted and didn't apply for.  

Those crashes into dialysis, patients land in the hospital, often acutely, emergently unable to really understand what's happening to them. And when they go out of the hospital, however many days or weeks later that might be, their life has changed forever. It's terrifying, it's depressing, and it takes a lot of their independence away from them in a split second. It's terrible for patients. 

Dr. George Hart: I couldn't agree more. And you've done a really good job of kind of describing that. Can patients crawl out of that hole? I mean, do they get better over time? 

Emily Morey: Absolutely. They can come back from a really rough start. It often takes a lot of trust, a lot of time, a lot of regaining that independence that they've lost is a big part of it. And so there's a lot that's placed on the team — the dialysis team, the technicians, the nurses, and the providers who are supervising their care through their dialysis to help them to take that power back and get to a place where they are more comfortable, or at least have some better understanding of what's happening and have the ability to make other choices, take next steps. 

Dr. George Hart: So how long does it really take for a patient to overcome the deconditioning and the debility that comes with a crash and before you can really begin appropriate education so that they can come back up for air, if you will, and kind of figure out how they're going to live with dialysis? 

Emily Morey: That can depend on a lot of things as well. Of course, everyone who comes into dialysis is dealing with a different level of comorbidities, of other things going on with their health. People who are also suffering from congestive heart failure, COPD, diabetes, hypertension, or whether their kidney disease is from a genetic cause. It very much depends what their starting point was before that crash and whether they had some idea that this was coming.  

If someone crashes into dialysis unexpectedly, but did at least have a connection with a nephrologist, knew this might be sometime in their future, just hadn't been prepared for it, at least they have a little bit of understanding. But coming from a zero-knowledge base, it can absolutely take months where people are dealing with a lot of depression, hopelessness, helplessness.  

Dr. George Hart: All that time the patient has an indwelling catheter. Do you see these catheters get infected or see consequences from these prolonged catheter exposures? 

Emily Morey: Absolutely. The risk of an infection from an indwelling catheter can be extremely high. When I was working an in-patient dialysis, I would not uncommonly see patients needing to get quite a lot of antibiotic therapy through their dialysis catheter because they had some kind of exposure, because they had some sort of reaction that was really, really rare for folks who had a developed fistula or graft to run their treatments with.  

There's other complications that come along with having a catheter. They clot much more easily in my experience. And then there's just the body image issues of having a prominent piece of tubing sticking out of the upper chest, generally, that they can't shower, they can't swim. And a lot of people feel really uncomfortable going out of their houses, going out in public, because they feel that that makes them look like they're sick. 

Dr. George Hart: You do a tremendous job of actually explaining what a crash is, and it sounds like it really lives up to its image, and that's not a very good thing. Compare that to a patient who starts optimally. 

Emily Morey: I mean, it's night and day. It absolutely is. When a patient has that early intervention, early education, to get the opportunity to find out what their options are, to get educated about their options for peritoneal dialysis, home hemodialysis, to get reviewed, to get approved for transplants, to potentially get a transplant ahead of time instead of ever needing to start dialysis, obviously is an enormous difference for their quality of life.  

But to be able to make that choice instead of being in the hospital, in a situation where they are so acutely ill that providers are making decisions, family members might be making decisions, but in those planned starts, in an optimal start with that education ahead of time, they keep that power, and it really, really is helpful for mental health and preparedness. 

Dr. George Hart: Do you find that more patients are able to stay employed? 

Emily Morey: Absolutely. Absolutely. People's quality of life just in general is much better when they know what to expect, when they know what dialysis would look like for them, whether it's a planned in-center dialysis or planned home dialysis. To be able to say, this is what I'm going to do, this is what my schedule will look like, this is how I can build my life, work my life around my dialysis, rather than having it come in and hit them like a train without any prep time, they're much more able to continue their lives the way they want. 

Dr. George Hart: I totally agree, and that's been my experience, and I certainly believe that early education is important. And that's what I want to really talk to you about now, which is, how do we prevent these crashes into dialysis? Give me an idea of how you're going about having the conversations with families and with patients to try and prevent this. 

Emily Morey: One of the biggest concerns is that there is a lot of denial involved when folks have chronic kidney disease for the patients themselves and for their families. Since it's such a quiet disease, people can have stage 3, sometimes stage 4, chronic kidney disease for years that doesn't really affect their lives. They don't really feel poorly, they're able to work, they're still able to do the things they want to do. So they don't feel sick. So it doesn't feel like this is something to prepare for.  

The first step to really quite a long process to get approved for transplant is to learn about it. And there's a barrier. It's fear, denial. There's a lot of grief involved in losing that function. 

Dr. George Hart: 100% agree with you. What you describe is a process in — a grieving process — in many ways for patients and families. It also means that there are benefits that you might develop over time having a longitudinal relationship with a patient or with a family. Am I right in thinking that? 

Emily Morey: Oh, absolutely. Building these long-term relationships, it's very much about trust. I bring a lot of my personal experiences into my conversations with my patients and talk to them like we're just real people having a conversation. Not nurse-to-patient necessarily, but more of, “I'm here to help.”  

There's a lot of counseling that goes along with it. There's a lot of education that goes along with it. But once those patients start to trust me and trust that I have their best interests at heart, when patients really know that I am listening to where they're at and not just checking boxes off on a list of what comes next, they are willing to work with me. And once we have give and take, they can really make some serious progress in taking those next steps and learning how to better care for themselves. 

Dr. George Hart: You and I haven't known each other very long, but I have no problem imagining your ability to help break down those barriers. I mean, I'm ready to share with you just with this first 10 minutes here. I'm sure you have some specific stories and anecdotes that might stand out. Any come to mind that you might want to share with this audience? 

Emily Morey: I have worked with so many patients over the years. There are absolutely those people who stay with me in my heart.   

I had a patient back in my dialysis days — when he first came to us, he was, he was angry. He had crashed into dialysis. He was feeling very alone. He didn't have any idea how he was going to make this work. I live in Maine. We are known for our long, cold winters. And getting transportation back and forth to the clinic was a huge hurdle to help him through with getting the social worker on the case, helping him to learn how to make those phone calls, being his advocate calling on his behalf when transportation was a problem, pharmacy issues were a problem, finding ways to get him to trust me, to tell me what the problems were so that we could work on them together, made a really big difference for him.  

He was able to start driving again once he was well managed, his blood sugars were under better control, he was safer to get himself back and forth to dialysis and he would come in with a smile on his face again, which I honestly never expected when I first met him. But to be that person for him that he could really, really listen to, it made all the difference. 

Dr. George Hart: Listening first, learning, understanding, it makes a difference, doesn't it? 

Emily Morey: It really does. 

Dr. George Hart: Yeah. I couldn't agree. In your current role, you have this experience from being a dialysis nurse. You spend a lot of time talking with patients about the different modality choices: transplant, different dialysis choices. Give us a little bit of an insight in what you find to be important in determining who's a candidate for transplant or who might be a candidate for home dialysis. 

Emily Morey: I try to remember that we all have our biases and someone who looks like maybe they wouldn't be a good candidate may still be. So I start with the data, I start with the numbers and say these are the qualifications for transplant. If someone is close but not quite there, I can hang on to them and continue to review.  

But as far as someone being a good candidate for home dialysis, I look at how they respond to when I'm trying to teach them something new. We do a little bit of education. I try to at least elicit some teach back, just try to ask, “Did that make sense? Can you explain to me how you understood what I said?” And framing that in a way that sounds like maybe I didn't say it right, rather than maybe you didn't understand me, so that I really, I can see what they can learn from me. And gauging their interest and trying in different ways, having conversations on different occasions in different circumstances. If I can see them face-to-face, rather than over the phone to say, I'm not going to count somebody out as a potential candidate to be really successful with home dialysis without giving them the chance to show me that they strongly believe they can. 

Dr. George Hart: Kind of a home first approach. 

Emily Morey: It's really beneficial; the outcomes for patients who can dialyze at home and just their overall quality of life. I think that I want to give people every opportunity to show that they can, rather than to show that they can't. 

Dr. George Hart: Yeah, I love that.  

Patients rarely go through all of this alone. You know, their families are impacted. Can you just shed a little insight for us on the importance of family and support in this whole journey? 

Emily Morey: Having strong family support is incredibly beneficial. We all know who our emergency contact is. Rarely do we think that someone is going to have to call that emergency contact. People who are dealing with late-stage, end-stage kidney disease have a high likelihood of having periods of time when they're not thinking as clearly as they'd like. Their memory can be a little off in those times when they're very uremic.  

And having an extra set of ears is how I always say, if someone has a partner with them, one of their kids, a friend, someone to be there for an extra set of ears, it's so nice to know. Then I know that someone else can help them to remember and can help me with encouraging them to implement any changes that would be beneficial for them. Family support, some kind of system that they can rely on when they're struggling: paramount. 

Dr. George Hart: Yeah. Taking care of folks with CKD and ESKD is really a team sport, and it requires a lot of, a lot of effort from a lot of different people. We've talked a little bit about transplant, we've talked a little bit about home therapy. Dialysis may not be for everyone.  

Emily Morey: It’s true. 

Dr. George Hart: Sometimes patients are too clinically unstable. Sometimes it's a patient choice. I'm sure you've had those kind of conversations too. 

Emily Morey: I have. I just recently spoke with a patient. He and I had met face-to-face. I was having a more in-depth conversation with him over the phone, and he is very unsure of what his next steps will be. He knows that some people live for years and years and continue to do what they want to do on dialysis. He knows that there are factors that can affect that.  

He asked me during our conversation if I could find research for him to show quality of life on dialysis for people in their late 70s, as he is, so that he could make a better-informed decision on what his next steps might be. And I was blown away. I'd never heard that question before, but I was really glad to be able to walk him through: These are some really reputable sources. These are some places that you can look — National Kidney Foundation and others — to try to find the answers that he's looking for. But also offered him, “If you have more questions, when you get through your data and you get through your studies, come to me and ask me.” I have absolutely helped people through this decision-making by answering any of their questions in finding what the right choice is for them. 

Dr. George Hart: Emily, I think I could just talk with you all day. Your passion, your experience all shines through, and you bring quite a bit of value to the patients you serve.  
 

For more information on how value-based care can improve optimal start rates, please visit our website at interwellhealth.com and subscribe to Kidney Health Connections on the listening app of your choice. Thank you so much.