Episode 46: Opportunities for Home-based Dialysis with Brigitte Schiller, MD, FACP, FASN

Episode Transcript:

Dr. Maddux: People living with chronic kidney disease need individualized care. In center dialysis is one size fits all solution. Many CKD patients feel that doing dialysis at home allows them a greater sense of control, more independence, and the flexibility to choose a time of day for dialysis aligned with their way of life. Brigitte Schiller, Fresenius Medical Care senior vice president of Home Therapies, joins us today to discuss the opportunities and ecosystem needed in home-based dialysis.  Welcome, Brigitte.

Dr. Schiller: Happy to be here. Thank you for having me.

Dr. Maddux: What's going through your mind these days about home dialysis? What are you thinking about with regard to the people that we care for?

Dr. Schiller: I think about the incredible opportunity to really, truly individualize care for many more people within the United States and globally. I've had an interest in home dialysis for many years. I have heard lots of the arguments for and against, and I've come as an nephrologist looking both at the evidence that we have and also at the experience that I've had. Seeing patients really transforming their lives through home dialysis, that there's a real need to do this.

For many reason, the time is right. The technology is as good as it ever has been, and there is a willingness now to go there. I think from the whole aspect of how health care is changing.

Dr. Maddux: What are the attractive features for patients for home dialysis.

Dr. Schiller: Like you said in the introduction, patients love to be independent and have flexibility. You know, the idea of any of us would be told three times a week, this is where you show up with exact time. That is not a very human way of undergoing a therapy. That is really life changing. And so, the control of it also right doing it at the time when you can do it, having the flexibility adjusted to your way of life, to the routine life changes, things happen in life.

We plan it while it happens. Having more autonomy over their therapy, those are the themes that come up repeatedly. And many people are empowered to feel that life goes on when we help them to understand that home dialysis can work for them.

Dr. Maddux: Talk a little bit about the evolution of the technologies that have made it easier for patients.

Dr. Schiller: There's actually a very interesting video that has impacted me a lot. Caroline Hellman, who was the first home hemodialysis patient in the sixties. There's a wonderful video from Northwest Kidney of History in Dialysis, where her mother talks about what it was like to do this in the sixties. When I watch this video, I'm reminded of that technology was not very advanced, but a mother's love for her daughter in a very unimaginable situation, quite frankly, overcame the technology she was. 

Nowadays, we have for home hemodialysis, very easy machine where a cassette is put in, which revolutionized more than 18 years ago. How home hemodialysis can be looked at again, really easy to set up, not needing as much space, even allowing for travel, which is a big thing for patients. Imagine losing your flexibility of just going about your life on a weekend trip to attend graduations, to attend family weddings, family reunions.

On the peritoneal dialysis side, we have a very easy way since the eighties of doing continuous ambulatory CAPD where patients manually can do this. Or we have shifted more in the US now to APD, where patients do this while they're sleeping. Technology really is very advanced. We now add connected health to it. The digital component of health care, where a lot of patients actually talk about that they feel safer because somebody is sort of watching over them from behind; that there is some feedback to the health care providers to really know what happens when they do dialysis. So, it's really from the technology. I often say, give me the machines, give me the devices, and then let's put the care delivery system in place for patients to really do well.

Dr. Maddux: Talk to us a little bit about what the data shows on the outcomes for patients that are at home or engaged in either home hemo or peritoneal dialysis.

Dr. Schiller: That's a very complex question, and I can tell you that I have watched how we're doing it right here in the United States. There are many data. I think the majority of nephrologists believe that there is a lot of evidence to say that home dialysis is good for patients, that it has advantages with respect to outcomes, some hospitalizations, quality of life, especially.

However, there is always a little bit a question, if these data are convincing enough, and that has to do with what the data, where they come from. A lot of them are registry data, a lot of them from other countries. Some of them the prescriptions of how we prescribe home hemodialysis varies in terms of frequency and time on dialysis, etc..

So it's very hard to get a very clear picture because of the of these reasons. What I will tell you is and even then when we have randomized trial, which is the gold standard, we have the FHN, we have the nocturnal trial from Canada.

Even though there is very clear evidence, then sometimes people question if it's big enough, if the trial was generalizable to everybody. When I would think at this stage of where we are in nephrology, we could actually say the physician should have that decision and that discussion with the patient because it is about outcome. Of course we want to give the best therapy, but it's also about what fits into your life.

ESKD is a very complex disease which has many facets of how our outcome is influenced. And so having that very clear and honest discussion between the physician and the patient, I think adds the value to this.

Dr. Maddux: Let's talk a little bit about the barriers to home dialysis and how well is our infrastructure set up to actually get as much support as we need to give to these patients?

Dr. Schiller: The barriers are multiple. I usually put them into three buckets. There are some barriers from the patients. The patients have some fear about doing this at home. The patients are worried about burden of therapy. But all of this, we can help from the infrastructure perspective is that in the United States, only about 50% of the centers have actually home programs, and not all of them actually have patients.

So there is some opportunity to do. What we know is that when we have the home focus, if it's in-center with the expertise of the people who take care of those patients, if it's a freestanding home center, it works. It is the commitment of everybody involved. It doesn't just need the provider, those that provide dialysis. It needs the nephrologists among all of them, as really leading those discussions and guiding the patients towards the right treatment.

And it needs the expertise of the nurses. And when that comes to play, we have had multiple examples in the United States where 20% even higher can be achieved. We have local pockets within the United States where we see programs getting to 40% of home dialysis. So the argument I don't have patients who are wanting to do home dialysis, I think that becomes a bit old fashioned and tainted.

When we put our mind to it, then this can happen. I had in my professional life, a lot of opportunity to meet extra physicians who would have 50% of the patient at home. And I remember, especially one young colleague when I ask him, So why do you have 50% at home? That is unusual in the United States?

He said to me it was a mind shift change. I actually, at some stage, just looking at everything, at the evidence and how well people do with home dialysis, I decided to talk to them about home first, and this is what happens. So they actually very easy ways of how to do it. And so the more we help everybody involved, all the interested parties to show them how easy it can be, then the barriers fade.

Dr. Maddux: How important do you think quality of life data is? We've become much more sensitive to patient reported outcome measures and quality of life assessments for patients. You've had long experience in home therapies. What do you think the story is for patients and their quality of life related to this?

Dr. Schiller: I think the data is even more overwhelming when it comes to the benefits of quality of life, and that can be on many different levels. That can be, from what we discussed earlier in terms of flexibility, really having control over your life to actual symptoms. Right. Some people sleep much better with home hemodialysis. There is good data that actually depressive symptoms can be. Now what is this due to? We don't know all that much about it.

Right? Quality of life to measure. You know, we have certain instruments. We're getting better of looking at easy instruments, validating them in home dialysis as well. To really assess what is quality of life for these patients. But in general, patients can tell you what they treasure, what is important to them. And I believe strongly from my experience and from the evidence that when we go there first, what is actually important for that person realizing that dialysis doesn't change you as a person. You have hopes and dreams.

You want to maintain financial stability for your family, want to see your kids grow up. You want to see your friends, you want to be participating in life. And when that is the priority, then discussion between the physician and the patient starts off in a very different way. And so I've had the pleasure and the privilege, quite frankly, to meet many physicians.

One of the physicians who I quote often is actually a physician from the U.K. who told me over lunch, I ask my patients when I know that we're getting to dialysis, you will need now a therapy, because your kidneys are close to not working enough anymore. Where would you like to undergo this therapy at home or outside?

And of course, 80% of people will say at home. So then the discussion starts very differently. In fact, I would have wished that while I was practicing that I would have thought about this. I didn't do this. But I'm trying not to spread that word that as many physicians can at least think, if this is a question how they want to start this discussion.

Dr. Maddux: Talk for a moment about how internationally home dialysis presents options for access to care that may be in-center hemodialysis or other methods don't. How do they approach home therapies in that population?

Dr. Schiller: That's a very good point and a very important one. To really look at what can we learn from other countries who have done this before? Now, the countries that come to mind is usually Canada, Australia, New Zealand. We talk about Hong Kong, but Hong Kong needs to be looked at in a different way. If you have a policy that there is a PD first, then things go from there in a very different way.

So the comparable to the United States is really Canada, Australia and New Zealand. And what you see there is that most of these countries can reach between 20 and 30% home dialysis and they do this firs, it might start off by because geographically this is just what is possible, right? We are saturated with centers across the United States, maybe in the rural areas less so.

And that's where home dialysis then might grow faster. What these countries, however, will give us is really a good example and take away an excuse that we could not do with this. As an immigrant, I've heard it often that this is not what we do in the United States. And so I was fortunate to work actually in my prior role in an organization where we actually did.

It happened with U.S. patients, and it happened because of a conviction that this was good and this is what we can learn from New Zealand, from Australia, from Canada. One aspect I might want to point out is that many of those countries, when it comes to home hemodialysis, are actually doing nocturnal home hemodialysis, and that comes out of two reasons I believe.

One of them being you can easier do longer time because you're sleeping anyway and the other one is to really taking dialysis out of your life and having it part of your routine. So what better way than doing it outside? I'm always amazed that we have not really embraced this enough here in the United States. I understand there is fear of some patients and some physicians to prescribe it, but really the data don't necessarily justify that fear because the data, especially from Canada, show that there is actually this fear of that fatal events happen because we dialyzer at night has actually not proven to be shown.

There is opportunity for this. Another interesting aspect, if I might add, is that when you reach a certain percentage of home, you need to think about who the people who need dialysis are. Not everybody lives in a house big enough. We live in big cities. There are smaller apartments. We live in multigenerational families, all in one place.

And so how to do this? I was very interested to find out that New Zealand for many years implemented what they call community houses. And community houses are houses where first of all it was implemented so if a person doesn't have the room at home to do this, then let's create in the community a place that is like a home where I meet actually with other fellow citizens who also need dialysis.

While this was first actually driven by the economics of not being able to do it in your own home, it also has another important aspect, which I think we also need to put into the equation, and that is the cultural aspect of bringing disease and illness into your home. There are many cultures who want to keep that separate, who do not want to be sick in front of their children.

And as we embrace this kind of ways of how people think about dialysis, some of these barriers tumble because, of course it makes sense then to have maybe somewhere these are little apartments, somewhere in the neighborhood where they live. This is where they go. There is one person to help a little bit, not a clinical expert, somebody who can help as a infrastructure person, administrative things.

And then they come and they do dialysis together. It's like building a community. So I really hope that we in the US are looking into those options because obviously access to health care is a big topic, an important one, and this could certainly overcome some of these hindrances that we're seeing right now and that patients can be clear about that. These are the barriers we need to overcome.

Dr. Maddux: We've had some limits from calling it home dialysis because it doesn't necessarily have to occur at your own home. And you and I have talked about home dialysis, but not at your own home. And I think this concept of creating community centers where people could come together and dialyze is really quite an interesting model. Both peritoneal dialysis and home hemodialysis each have some what are called technical challenges that can occur. Peritoneal dialysis can have membrane aging and failure that can occur over time. Home hemodialysis has the issues of vascular access and cannulation. Can you just speak to some of the methods for overcoming some of these particular barriers.

Dr. Schiller: For many years we really have talked about the chronic the cycle of chronic kidney disease. And I think for us to really remember that most likely a patient who lives for a long time with end stage kidney disease will go through many of those modalities. We hold that transplant is the gold standard as the primary hope and goal for all of our patients will last forever.

And some patients have that privilege and others don't. When you go from one methodology, to the other, when you from the beginning talk about this, that you may start with peritoneal dialysis, often easier to be starting home dialysis with something that does not involve needles like home hemodialysis, easier from the technicality of it. A lot of patients love this idea.

If we in our mindset of how ESKD needs to be treated from the get-go, start thinking that there is many different options for us to choose from. Your life changes. I recently heard from a patient to say that there is no failure of therapy. We do not fail therapy. Our life situation changes. It was very important to me to hear it this way, because I think the more we think like patients who undergo people who undergo dialysis, the better we can serve them. Home hemodialysis with vascular access. Yes. Needling. We need to be very clear that needling is the primary reason why people don't think they can do a home hemodialysis. And we shouldn't push anybody into this. But we also can help them overcome that fear that can start in the center.

I've heard many patients saying to me it was that technician that convinced me to do home hemodialysis because he said to me, Hey, I can teach you doing this, no magic, you can learn this. And so it is this attitude. We talk a lot about empowering patients and we talk about what that actually means. And I have come to the point that I'm believing that we, the health care professionals, need to empower them because we actually have some reservations to this.

All of a sudden empowerment means that the patients will make decisions because they know what is good for them. Now, if this is not according to our clinical evidence, we're there as a backup. But letting them decide what is right for them will help us to do this. One point, if I may add, is the transition from peritoneal to home hemodialysis is frequently talked about now and it shows better outcomes is the selection of patients we all need to see.

But what I think the data already show is that, again, when you set up the infrastructure, when physicians, the multidisciplinary team work together on this, it can be done and it's very successful. And again, patients who are already at home, some of them do want to have a break. They go into center, but most of them actually embrace this independence and flexibility.

Dr. Maddux: This sense of fluidity between modalities, I think is one that we don't utilize much. They sort of exist in their own little spaces, but the concept of being able to shift from one home therapy to another home therapy to get respite care when needed seems to me to be one of the infrastructural things that the system needs to be able to provide.

Dr. Schiller: Fully Agree. When we talk about home dialysis, what actually needs to change is how we as a system provide it. All these transitions of care, the change from one to another is dependent  on how we can respond to this. Respite care is in many countries. In fact, the Australians talk about this, that in order to maintain home programs you need to offer respite care.

A person told me, I'm taking a two week vacation every year. I know I need that. It is just this interruption of not having to do it every day. And I think when we're really honest with ourselves, anything that I need to do on a daily basis with respect to my health, I quite frankly don't last that long.

My own experience obviously often makes me then very tolerant and very sensitive to what we ask patients to do on a daily basis. So finding these opportunities of respite care, of maybe assisted home therapies, right. Not on a continuous basis, that would unlikely to be feasible and pragmatic. But there are periods in life when life is even harder with or without ESKD, and we all need support and being able to have these conversations that what makes me excited about being able to provide home to many more people.

Dr. Maddux: We see when we look at the population of people doing home therapies, what I'll call a retention problem does what you've just discussed salt the retention problem or do you think it's goes beyond that?

Dr. Schiller: I think it's a fair hypothesis to think that it will. When we look at what patients talk about, what barriers are at the beginning, it's sort of the fear is the dominant theme. And also the burdening of the family, right? You bring a disease and it is a chronic disease and of course your family make up the way how you function as a family, as a loving family is impacted.

And over time that gets more difficult. And so the retention from the perspective of burden of therapy over time is certainly something that we would hope that respite care assistance can alleviate. Will it completely solve it? We don't know that, but this is where we need to go. And again, I think home dialysis is not really rocket science.

It is common sense. It's having a pragmatic approach to what would we need. And one of the things that I really love for us here at Fresenius to do is, we have enormous channels and a big motivation and execution, being connected to the people who do dialysis, with our patient advocates, with our patient advisory boards.

We listen and the more we listen, the better we can translate this into a better care model, into the right products. Because ultimately, at the end of the day, I know we all the professionals try to stand in their shoes, but we actually really learn only when we listen to what they're telling us.

Dr. Maddux: We're living in a technology environment today that is highly intuitive. So a lot of the devices we use are very intuitive today. They are personalized to what our needs are and through our actions we tell them we're interested in. To what degree do we have a gap in the intuitiveness of the systems that we use today for this kind of therapy and the way we engage patients?

Dr. Schiller: A meeting in the UK, which I attended many years ago, patients were a big part of the approach to home dialysis. And I heard then that a patient said my machine is actually light, I cannot sleep. I remember sitting in the audience thinking, Gosh, I've never thought about this, that there's actually light that interferes with the sleep of patients.

It is actually small things Frank, often it is how I'm getting to the machine. If it's ergonomically possible. How much supplies I'm having in my home. We think often that is just the easy fancy machine. It is actually the service model around it. People want to make sure that when something happens with that machine that that gets swapped out immediately.

They want to make sure that the supplies are not an extra half time job for them. It's the documentation of the administrative stuff. A lot of this we have had for many, many years here at Fresenius. And we have a lot of experience on this. We have an almost 20 year history to understand what people actually want and what they need.

And it's out of that listening that these additional capabilities have actually occurred. So home dialysis to me is not a device. It is an ecosystem of really understanding that it's easy to build a center. We have done this well for 50 plus years to make many people live longer with dialysis. Now we're at the level of where we are asked to give people the dignity and the autonomy to do dialysis.

And this requires us to come and standardize, to some degree, home dialysis and then to individualize it. So standardization does not mean one size fits all. It sort of develops the foundational framework and then we can individualize. So that's the exciting part.

Dr. Maddux: As you think about the future of home therapies and we think about technologies maybe like online fluid production, other such things that are more intuitive for patients, where do you think the where do you think the home therapies will be ten years from now? And what do you aspire to?

Dr. Schiller: I hope that we have listened to all the big themes that we're hearing from people who are affected by the disease and who require the therapy. Some of them are exactly the topics that we already have touched on. Right? I believe that we need that ecosystem. We have machines that are easy, that can be made easier. There is new technology.

There's always advances to do. But what we need to do in all of those decisions is, what is it that is important? And when I'm hearing patients talk about it, it is make sure that I'm safe, make sure that I can do it for the long haul. Help me out when I need help in between. Don't expect me to do this like a robot for years.

Help me to adjust as my life evolves. The remote monitoring is certainly a big part that makes people safer. There is some good data to show that it helps with retention so this is a good thing and there's obviously lots of stuff we can do. I'm also very excited about hearing that our data analysis, our potential AI in the future can help us to identify people earlier, not just who does well, but when is their potential complication happening so that we, the system and the infrastructure can be prepared for this before it happens.

So really to come to what we ultimately wanted for dialysis to be, we dialyze to live. We don't live to dialyze. And that is where I hope the future will get us in many ways. And for that we need to think about lots of things that are not necessarily just the clinical part of dialysis, but the human factor around living with dialysis.

Dr. Maddux: I'm here today with Dr. Brigette Schiller-Moran, talking about home therapies and the opportunities and challenges that we all face in trying to create more patients interested, more physicians interested in an ecosystem that works well for this therapy. Brigitte, thanks so much today.

Dr. Schiller: Thank you. It was a pleasure and a privilege.