Episode 50: The Benefits and Barriers of Home Therapies with Michelle Carver

Episode Transcript:

Dr. Maddux: Patients who dialyze at home report better outcomes, more independence, and a better quality of life than in-center patients.

Home dialysis affords people living with kidney disease the flexibility to treat themselves on their own schedule. However, it's not without challenges, including infections, complications, and inadequate caregiver support. Michelle Carver, Chief Nursing Officer and Senior Vice President of Nursing and Clinical Services at Fresenius Kidney Care, joins us today to discuss the benefits and barriers of home dialysis for people living with kidney disease. Welcome, Michelle.

Michelle Carver: Hello, Dr. Maddux. Thanks so much for the invitation.

Dr. Maddux: It's nice to have a chance to talk to you. Talk a little bit about your views on how patients begin to take control of their clinical care and their lives with advanced kidney disease through home dialysis.

Michelle Carver: Well, obviously home dialysis is a passion of mine, and I believe that more patients should be afforded the opportunity to select a home modality. But it isn't without its challenges. As you know, our patients face significant burdens just with chronic disease management. I think a lot of times what keeps them from selecting a home dialysis modality necessarily isn't their disease or the dialysis itself, but it's all the other things that they're trying to manage in their life while still facing chronic kidney disease. I think one of the things we have to do a better job as an industry in nephrology is helping patients address some of those barriers that we need to remove for them so they can be more empowered and able to self-manage more of their disease independently.

Dr. Maddux: What characteristics do you find make for a good candidate for home dialysis?

Michelle Carver: Over the years, I've been asked that question a lot of times, whether it be at conferences or just during educational series around who makes a good home dialysis candidate. And in my mind, there's really only one thing a patient needs to be able to do home dialysis, and that's the motivation to learn how to do it independently. I think there's a lot of other things that we can solve for, but the one thing we need them to have within themselves is the desire to want to learn more about their disease. After that, I think we can, through an interdisciplinary team approach, actually solve for a lot of the other barriers that patients face.

Dr. Maddux: One of the things that's always interested me is that patients on home dialysis are inherently more engaged in their therapy because they provide some of that therapy to themselves. Do you find that patients are more willing to incorporate their kidney treatment into their general life issues they're dealing with when they're dialyzing at home because of that responsibility they have?

Michelle Carver: I do think that's a big piece of it. I think the motivation to want to be more independent is key. But I also think that just managing a chronic disease in itself takes a lot of opportunity for patients to actually learn how to take care of themselves. And with chronic kidney disease, and I'm sure you've witnessed this over the years, we take a lot of the control away from people. 

Not recognizing it. We tell them a schedule that they need to be on. We tell them what to eat, what to drink, how often to come to treatment. We slowly cause the patient to kind of become the person to be cared for instead of the person that's caring for themselves. And so one big kind of cultural shift I think we all need to think about as health care providers is,

How do we empower patients to want to learn more about their disease and want to be more engaged? And that requires us giving up some of the control, which I think is fearful for some healthcare. We like to be able to tell patients what to do to improve their health. But really this is a partnership. We need to learn from the patient, okay, what can you do? What things can you do by yourself and encourage them to do them more frequently and more often. And then that's kind of the steppingstone to being able to take on home dialysis. I think we have to start with just the baby steps, even in CKD, before they enter dialysis or renal replacement, what things can patients be more independent with? That helps to kind of build the concept of really being a self-managed patient managing a disease at home.

Dr. Maddux: Thinking about the educational offerings for patients and this concept of discrete choice questions for them. How well are we doing today for example in educating patients that would encourage them to consider this option and what could we do differently?

Michelle Carver: I think we all show up with unintentional biases. And so just as a healthcare provider, I think we automatically start to fit patients into boxes and we think, oh, you would be a good home candidate and you would not. And I have to be honest, I've done this for a long time and I've trained a lot of home dialysis patients myself. Some of the best patients I've had on home dialysis are not the ones that I would have looked at and said, oh you would be an exceptional home dialysis patient. I think we have to recognize that any patient has the capability, if they're motivated, to be able to take care of themselves at home. It may take some creative thinking, how we approach certain patients, but at the end of the day, we need to kind of remove those biases and recognize that we should show up and educate patients as if any patient is a candidate for home dialysis because more often than not, they will surprise us, especially if they have the motivation to want to take care of themselves more.

Dr. Maddux: Would you consider yourself an advocate of a home first philosophy?

Michelle Carver: I would, because I think one of the other things we have to consider is once a patient enters an in-center dialysis clinic, it does become comfortable. It's like anything when you get into a routine, it's hard to break that routine. For a lot of patients, once they start or initiate in-center, it's a big leap then to go from having someone caring for you and the social interactions you have from an outpatient clinic environment to then taking all that responsibility on your own and recognizing that you're not going to be coming to a facility frequently and that social interaction. So I'm a big believer in home first, because I believe we should approach patients with the concept that any patient is a home patient until they prove us otherwise. Allowing them the opportunity to try it, not all will be successful, but a large percentage will if we give them the opportunity. And we're creative about how we approach training and support at home for those patients.

Dr. Maddux: Given your long experience in the arena of home dialysis, what do you think the biggest barriers to retention and sort of improving retention rates are? What are the things we can do differently?

Michelle Carver: In nephrology in general, we have approached home dialysis as in a way that we want to take the in-center environment and put it in someone's home. And there is innate challenges with that concept. I believe to really keep patients home, we have to approach home dialysis completely differently. And that's going to require, especially in the US, changes in some of the regulatory requirements that we're currently under. But I do believe the first step is just recreating what home dialysis looks like. It really can't be in-center just done at home. We have to approach things differently. Because the other comment I was going to make around this is this is hard to do long term.

Best case scenario when you're living with a chronic disease, doing your own dialysis day after day, month after month, year after year is challenging. It would be challenging for any of us. I liken it to thinking about people who want to get in shape or lose weight, how difficult that is to do. Imagine doing that and also dealing with a chronic disease.

It is usually not the dialysis treatment itself that causes patients to fail home dialysis. It's all the other things in their life that they have to figure out how they're going to manage while taking this on. I really think to improve retention, we have to simplify it. We have to make dialysis at home easy, like taking a shower. So it just becomes part of their normal daily life. 

So that's going to require a balance between our nurses and physicians and a really open mindset of what is absolutely necessary for a patient to do at home to deliver a safe dialysis treatment. And we have to be comfortable maybe doing away with some of the other things that we require that are really burdensome to do time and time again for patients.

Dr. Maddux: To expand the population of patients that may select these kinds of treatments, I've thought about some of the problems we have by calling it home dialysis because it implies that it's happening at your physical residence.  Have you thought at all about this concept of home dialysis, but not at your own home, or sort of community-based centers where patients are performing their own treatments with sort of minimal help?

Michelle Carver: I've had the opportunity to visit a few other countries where they do have those models, where they actually have community-based resources in which patients go and do their own dialysis treatments at a location where they're not managed by clinical staff at all, but patients are independent. And I do believe that as, an organization, we are going to have to look to ways to actually incorporate some of those creative ways to get more patients on an independent dialysis modality. Because one of the barriers for many patients are all the social determinants of health that they're dealing with along with their chronic disease. So patients that don't have reliable housing, patients who don't have reliable storage, or patients that simply don't want to bring dialysis into their living environment but would rather go somewhere else and have their treatments delivered. I do think it's a very interesting concept, and I do believe it's one that we should explore to offer it to a larger patient population in the future.

Dr. Maddux: I've been interested in exploring the concept of whether transplant is ultimately a home therapy. Any thoughts from you on that?

Michelle Carver: I'm a big believer in transplant as well. And I think a lot of the same things that get a patient to a transplant are the same things that we need to offer our patients to get them on home dialysis. I mean, it takes a very motivated patient to be able to do all the activities that they need to do to be transplanted. Same thing on home dialysis. So, I do believe. And oftentimes we see higher transplant rates in our home dialysis patients, and I think it's because the modalities are very similar in nature. It takes dedication and commitment long term for either transplant or home dialysis to be successful.

Dr. Maddux: The connected health environment for home patients seems to be one of the really important steps to provide reliable and safe oversight of people performing their own treatments. How well do you think we've done at developing that environment or is there a lot of room still to improve?

Michelle Carver: We've had some great advancements. I think we've come a long way from the time when I first started training home dialysis patients where they were physically writing on paper flow sheets, everything they did in the home setting. However, I think there's a lot more opportunity. And one of the things that I think about in technology, especially is it can be overwhelming to patients.

And sometimes we think, something that's very fancy and has a lot of bells and whistles is the next best thing. When in fact, what I believe is the simplest things usually are the most beneficial to patients, so that literally the easy button. Some patients do better with minimal technology. So, the more we simplify it and the less they have to interact with buttons and alarms actually is usually better for most patients. Now there's some patients that are very drawn to kind of technology in itself, but for the most part, patients want this to be as simple as possible. They don't want this to consume their life. They just want to be able to deliver their dialysis and go on with their daily activities of life. I'm a big believer simpler is better, and I give the example of our peritoneal dialysis patients. We tend to push them towards a cycler, which requires learning machines and troubleshooting alarms, when in fact, many patients would do just fine on manual exchanges and probably have less burden, especially in the beginning when they're trying to learn so much about how to take care of themselves.

Dr. Maddux: Michelle, it's clear that one of the health equity gaps that we see is the access or adoption of home therapies. What are the some of the things that we might be able to do that would begin to bridge this equity gap that may be from a wide variety of social determinant issues that arise?

Michelle Carver: That's an excellent question. And that's one of the things that I think should be our big focus going into the future is how do we make this easier for a broader patient population? And one of the things is training. Today, it does require quite a commitment in training, both for peritoneal dialysis, but also home hemodialysis to learn how to do this at home. So how do we simplify training? It's hard for people, especially who have families or are still working to take off that amount of time from work to learn how to do their dialysis. So, you know, is there technology improvements that help us train patients with fewer hours or days commitment into learning how to do it? That is one thing. I also think exploring how we can offer solutions that are flexible. So training patients in the evenings. I know some programs today do that. They offer flexible training schedules, but that's usually on a very clinic by clinic basis. So how can we make that more broad across nephrology that patients can train during flexible schedules or even during the weekends. I also think, how do we integrate and support care partners at a 

much higher level. Today there are therapies that do require a care partner. Obviously if patients choose to do nocturnal hemodialysis at night that still requires a care partner. Many patients can be independent but what I will say is almost all patients need some kind of support to be successful long-term at home. Whether that's a care partner that knows everything about their dialysis or just someone that helps them with the little things. It may not be support related to dialysis. It may be somebody that helps them buy groceries or fixes meals a couple days a week so that they can do their treatments. We need to do a better job of supporting care partners because we get very focused on the patient sometimes and we forget that patient success actually relies heavily on the support system that's around them to help manage their chronic disease. So how can we as a health care organization and industry support those care partners that also need additional intervention to help support their loved ones?

Dr. Maddux: In your view, is there adequate nephrologist adoption of home therapies, or do we still have work to do to expand the population of nephrologists, both willing and able to prescribe home therapy?

Michelle Carver: We have some nephrologists that are very passionate about home dialysis, but we certainly have room to grow. We have pockets where we have committed physicians that are referring patients to home often and continuously. And we have that other markets where we lack referrals, because in some cases, they may have not gotten the exposure to home dialysis, either in their fellowship or in their practice managing current patients. And so you're less likely to refer a patient to a modality that you're not as comfortable with. So, I do believe that it does take some additional education and support to make nephrologists comfortable with more modalities like peritoneal dialysis and home hemodialysis.

I think we have a much longer way to go to get people comfortable around nocturnal therapies. I think programs that are willing to give patients the opportunity to do nocturnal, but that is not widespread at all. And I believe more patients could benefit from that modality for clinical reasons if we could get nurses and physicians more comfortable with the concept of patient sleeping while on hemodialysis.

In the end, I think it takes a partnership, an interdisciplinary partnership between the nurse, the physician, the social worker, and the dietitian to really make patients successful at home. All of them are key to the patient success, the care partner success, and it seems in our successful programs when you have willing interdisciplinary team members that are willing to try creative approaches to learning different ways of supporting patients at home. That's where the real magic happens and where we see the biggest adoption and retention of home dialysis for our patients.

Dr. Maddux: I'm here today talking about home therapies and the views of Michelle Carver, our Chief Nursing Officer at Fresenius Medical Care and Fresenius Kidney Care. And Michelle, I want to thank you for joining me today to just diving a little bit deeper into some of the issues around advancing home therapies.

Michelle Carver: Thank you so much.