Navigating the Ethical Crossroads of Dialysis: A Journey from Corporate Healthcare to Patient Empowerment

When a former dialysis industry insider steps away from their calling, torn between the devotion to patient care and the stark reality of corporate healthcare, you know there's a powerful story to be shared. We welcome this courageous guest to unravel the complexities of dialysis care in the U.S., a narrative marred by an ethical tug-of-war between patient-centered care and the efficiency-driven mentality of large-scale operations like DeVita.

Our conversation travels from Ohio to Los Angeles, across the heartbeats of patients who've become mere numbers, through the corridors of standardized healthcare that often overlooks individual needs. The episode not only casts a critical eye on the consolidation of dialysis practices but also illuminates the empowering tales of patients and families who've taken charge – navigating the healthcare maze with tenacity and self-advocacy. It's a call to understanding, a nudge towards engagement, and a testament to the idea that connectivity can be a lifeline – whether that's through technology or the solidarity of shared experiences. Join us as we confront the status quo and explore the profound impact of empathy and education in healthcare.

A conversation about the kidneys and what happens when they fail.

Transcript

Speaker 2: 0:22

In early 2000,. A company by the name of DeVita was created and that company used a corporate model and it wasn't a non-profit, it was a for-profit business. Today they're one of the largest providers of dialysis services in this country and so that speaks to that. They've done very well taking care of dialysis patients. They're building centers all over the country, and so that's kind of illuminating to me is that the companies before them didn't get as big as they are. There's a reason for that.

Speaker 2: 1:05

I understand that when this first happened it was the idea of standardizing the process. If you had all these different non-profits and all these different companies, all of them had their own separate kind of standard and then there was a governing body which is Centers of Medicare Services, who pays them, and they kind of oversaw all of these different companies and that these consolidations made it easier for them to be able to work with this particular companies and standardize this practice. But on the ground level, for what I do at the process of the service level, it was a bad idea. What we're seeing is patients being treated as numbers, and this was very difficult for me because I in fact left the industry for a while. I spent nine months away from the industry, even though I know this was my calling. I stayed away from it because I could no longer be a part of what I believed was a system that was counterproductive to what patients actually needed. Yes, from the baseline level of it, we are providing a service and they are living. They are leaving in most cases better than what they came in, but in many cases they are not. That's that tug of war that I've been having and this is the result of that.

Speaker 2: 2:34

This is my way of still helping patients but looking at the issues and trying to help the people who are running these companies or these corporations, see that there's something beneath all of this that is unethical, that we have to be ethical in what we're doing and that if we make these people out to be just like car parts in a factory, and that they, you know, they mean, you know that, you know if the quality's up, you know we met those four, you know key indicators and that this part is, you know, quality assured and we're just sending that part out into the world when we know that's just not the case. But we met all of the government standards. We didn't go above and beyond, but we just met the standards that this person is gonna be okay, and that's just not the case. And so those are just a tip of the iceberg on how I got here and how we ended up doing this. And what led me to do this is that I just couldn't. I couldn't watch anymore as people were treated as parts.

Speaker 3: 3:43

Great, something else that's come up, and I know this for some of the people that we've had conversations with and that we'll get back to, and you know we'll do some more interviews with those folks, and you know, you and I have been at this for some years and trying to figure out the best way to present it. And you know, thankfully Zoom has come along and we can produce these things and we can get them out to the world fairly easily. Like at a point we were talking about traveling the country and meet with folks, and that may still happen, but like now, you know, for whatever reason, the world as it is has made it easier for us to do this and have conversations with you being in Ohio and me being in Los Angeles, and you know the people that we talked to, my sister in Florida and you know my friend Elliot, who's here in the Valley and what have you. But my point is what I was gonna say is that we've spoken to people who are finding success in their treatment because of the research that they've had to do themselves, right, right, and not everybody can do that.

Speaker 3: 4:54

Not everybody has the energy or the time or just like the education, to know where to get the education. You know what I mean. So we're serving that role in a way, but something that I think is gonna be important moving forward is empowering those people who are going through that process, not only the people that are being affected by their kidney dysfunction or their kidney you know, their lack of, you know, function in their kidneys but the people that love them, the people that are around them. You know, like how do I help my sister? Like how do I help somebody in my family who's going through something? Or a friend, like how do I? You know, because if the patient doesn't know what's going on, you know nobody around them knows what's going on. Right, right.

Speaker 3: 5:47

So, I think that's like a big part, because I'm like I wanna add value, Like how can I help? Right, how can you help? Yeah, you know as well as how can I keep myself from going down the same path. So you know, just briefly, just talk about that element of how are we going to empower the patient to become their own best advocate.

Speaker 2: 6:14

Yes, absolutely, and I think that starts with just educating them. And when I first started we had no education, so patients came in and they learned on the fly. It's like showing up for work and not knowing what your job is and someone telling you and showing you what your job is and then you having to perform it. You know it's gonna take you time, maybe weeks, maybe months to wrap your head around exactly what you're doing. You can do the process of it, but you don't know what that process is actually doing, right. And so when I started in dialysis in the late 90s, there wasn't an education program for patients. And then in 2000, when they corporatized some of the companies, then those companies began to roll out education programs, but I became a part of that process. I knew that that was like a passion, but so I began to teach those classes. What I found in that process is that then the doctors were reluctant to send me the patients to have that conversation, and I still haven't figured out what the reluctancy is in educating a patient, and maybe through this process we will figure that out and why some doctors are reluctant to educate their patients, but at the end of the day, these patients have no clue of what's happening and they're just being blindsided. And so I think the idea of creating that class for patients, for family members, and even with this Zoom even when family members watch this Zoom in our series that they are gonna get some knowledge about what their family members are going through, what's important to help them with.

Speaker 2: 8:10

Whether it be and it really gets back to what we eat and that is 90% of what these patients are experiencing the foods that they need are so expensive that they can't afford them. They're going to dialysis three days a week and they're not working. They're on disability. That's another thing we need to talk about is these patients are disabled, but when they go to the grocery store, there's no break on the groceries. There's no cheaper route for them to get the foods that they need, and so then they get the foods that they can afford, and the foods that they can afford are gonna kill them. It's gonna make our process and dialysis more difficult. Their labs are gonna be out of range all the things that we're requiring of them. They're not gonna be able to meet with the foods that they have to afford to eat.

Speaker 3: 9:06

That's a great place for us to kind of close this episode up and just having stated what our pathway is, the reason why we're on that pathway, knowing that it's overall education not only for us, but also just digging into what are some of the root problems. Also, how can we affect change, how can we make the different elements understand each other? And so that's what people have to look forward to. That's what we're gonna do here with what's the deal with dialysis? We're gonna help people answer questions and we're gonna answer them for ourselves and you, being the person that's been in the industry, your perspective you are the best person to ask those questions and to answer some questions. Basically, you take a question from somebody and go to all right, where can I find the answer to that? And, in that answer, affect change so that this person who has the question feels better about what their options are.

Speaker 2: 10:19

What their pathway is. Yeah, and I just wanted to add to that All of this came from stories that I was being told by patients and what their experiences were before and while they were having dialysis. So I wanna make that clear. And what I found something super interesting I alluded to it a little bit and I just wanna just touch on it just a tad bit is the idea of narrative medicine, the idea that someone else's story can heal someone, that it can empower them, that it can enlighten them, that it can inform them. And that's what we want to do here the stories, the people that we will interview and talk to.

Speaker 2: 11:02

Their stories will empower people who otherwise don't feel empowered at all, who feel like they don't have any decision making in this process, that they've been given a doctor, that they've been given a site to have their dialysis, that the manager at that site has been given to them.

Speaker 2: 11:20

They didn't pick any of those people, they didn't get to decide what modality they wanted, because they didn't know that there were modalities, that there were options. These people are being led into a process and to an industry that's benefiting from them without ever having to do a thing for them, not even having a conversation with them, and so that's what we want to stop. We want to affect that change here, and so this is a sort of narrative medicine. We're going to use Elliott's stories, we're going to use Vowel's story, we're going to use Alphela's story, people that we've interviewed already and people that we're going to interview in the future and their stories will empower people and will educate them and will give them pathways that they can think about or ways that they can figure out their situation by seeing what someone else did and how successful they were not successful with that.

Speaker 3: 12:15

So that comes under. I mean, and you know me, it's all about inspiring others to inspire others, like that's it.

Speaker 3: 12:23

Like somebody else's, somebody's story can inspire you, and you know, to take a path right. And so, as we are inspired by the people that we interview, like we're going to pass that inspiration on to other people, and that's how we make change, that's how we affect each other and that's how we, as human beings, can be our best selves, because we care, because we're compassionate, because we just, you know, we want a better. Everybody wants a better life. Everybody wants to be happy, right?

Speaker 3: 12:58

And when your health is in the best shape, it's hard for you to find that, that state of mind, of happiness. So it is very difficult, and that's why they call wellness right. You know, yes, and so thank you for that. You know that addition, that's a great perspective and I think people should know that that is, you know that's our approach. You know we're taking the human approach to all of this. You know it's about human beings. It's it starts with those people sitting in that chair and the people that have affected you in a way that you feel like you need to go to bat for them and for the ones that are coming and for the ones that have no idea what's going on in their life.

Speaker 2: 13:39

So, yeah, so here we are. I owe them a great deal, man Right, so here we are closing up another.

Speaker 3: 13:48

you know what's the deal with dialysis. We'll be back. Hopefully we've added some value to you and some perspective. I know that every time I have a conversation with you, I learn something new and I grow, and I will pass that on. So come back, see us again on what's the deal with dialysis, please do. In the meantime, just do your best to stay well, do your best to educate yourselves, be your best advocate and, you know, come back and help us inspire others.

Speaker 2: 14:21

So absolutely Be well, yes, indeed.

Speaker 3: 14:25

Have a wonderful day.