Early Nephrology Referral Key to Dialysis Decision
Early Nephrology Referral Key to Dialysis Decision
Donal J. O'Donoghue, MBChB, FRCP: Hi. I am Donal O'Donoghue, a kidney doctor in Manchester, England. Welcome to this Skype chat with Lynda Szczech.
Today, we are going to chat about the recent Canadian guidelines on intent to defer the start of dialysis. These guidelines have been interpreted in some quarters as saying, "Don't start dialysis until the estimated glomerular filtration rate (eGFR) is less than 6.0 mL/minute/1.73 m," which is a misinterpretation. But there are some tricky issues about this intent to defer.
Lynda, would you like to say hello?
Lynda A. Szczech, MD: Hello, everyone. My name is Lynda Szczech. I am a nephrologist in North Carolina and immediate past president of the National Kidney Foundation.
I would love to ask Donal to kick off this conversation, but first I want to acknowledge that Donal and I know we are talking about real people, quality of life, and individual decisions. So while we discuss numbers and survival and mortality, please know that we understand that this is a very complex conversation that balances individual assessments of quality of life vs quantity of life.
Donal, go ahead.
Dr. O'Donoghue: The recommendation, published in the Canadian Medical Association Journal, is timely and worth reading. This guideline is based on expert opinion and an analysis of the evidence base; but remember, there is a lack of evidence in this area. In addition, we need to consider that the other aspect, expert opinion, is expert medical opinion -- which is fine, but we need to balance that in clinical practice with the patients' wishes and desires, and patients' views on such elements as quality of life and risks they may want to take.
The challenge, I think, is how to operationalize the intent to defer. For me, the key remark is the importance of being under the care of a nephrologist, and I would expand that to being under the care of a multiprofessional team (MPT) for everyone in stage 5 chronic kidney disease (CKD). You can always challenge this, and there will be patients, for example, with advanced malignancy for whom dialysis would be inappropriate. But I hope our listeners will recognize that when we decide we are not going to follow people with CKD in the multidisciplinary team (MDT) clinic, this is an act of exclusion.
Dr. Szczech: It all comes back to that, doesn't it? By "that," I mean getting to the nephrologist within a reasonable period of time.
I love the phrase "intent to defer" because that gets us away from the hard numbers that we have become so married to over the past 10 years -- the mandate that, "You have to get the hemoglobin from 10 to 12; otherwise, you are a bad nephrologist."
Dr. O'Donoghue: Yes, yes.
Dr. Szczech: Perhaps the decision should be individualized, and "intent to defer" means, "This is what I intend to do, but if something pops up that I need to change, I can do that for this individual patient." I love that individualization. Bravo, nephrology; bravo, Canadians.
Dr. O'Donoghue: Bravo. I think they have done a great job with this guideline. Defer until the eGFR reaches 6.0, but begin dialysis at the first indication that dialysis will be beneficial. That is a difficult decision as well, considering hyperkalemia, fluid overload, and uremic symptoms, and the challenge for the future is to fill in this evidence base.
This recommendation is great practical advice. Do not start too early, watch people, manage them closely, manage those symptoms, and do not forget about preemptive transplantation. This is about dialysis. It is not saying, wait until the eGFR reaches 6.0 to transplant people preemptively. To me, it resonates extremely well.
I have been interested in the UK data in terms of the GFR at start of dialysis, which during the past 15 years has gone from about 6.2 up to 8.5 mL/minute/1.73 m. This level of 8.5 mL/minute/1.73 m is considerably less than in the reported data from the United States.
But the numbers only tell us a small amount. They do tell us about the difference in practice, but I do not believe they tell us the reasons for that, and they certainly do not tell us what is right. Only 2 studies on quality of life were included in the Canadian analysis: 2 studies on quality of life and start of dialysis. This is kind of an indictment for us to get on with it and research that area, but it also is an acknowledgement that it is really difficult to do and a recognition that we may increase the importance of factors we can measure, yet these may not be the be-all and end-all.
For example, when I was younger, nutritional markers were all the vogue, and we thought we would be able to make big inroads with nutrition -- and maybe we have improved nutritional status overall. I say "maybe," because we have not measured it systematically. But serum albumin and creatinine -- these are not the be-all and end-all.
How does implementing this recommendation play in the States?
Dr. Szczech: This is a tough one. As you were talking, I was thinking about all the US Renal Data System data I have about the number of people who start dialysis who have seen a nephrologist in the year before they started dialysis. I believe we have yet to crack 50% of incident dialysis patients seeing a nephrologist in the year prior. So is late referral a big problem? Is early identification a big problem? How does that intersect with the relationship you build with your patients?
Because hyperkalemia is a no-brainer and volume overload is an objective measure, we can judge that. But how do you know when someone is starting to have symptoms such that they are not just having a bad day or experiencing natural waxing and waning? How do you know when there is a definitive turn that justifies what is an imposition on their daily schedule by starting dialysis, potentially 6 months too early?
You have to know someone to be able to help make that decision with them, particularly when they are scared. Name a CKD patient who is not scared when they get the dialysis talk. I worry that what this all feeds into is getting the patients there earlier.
Dr. O'Donoghue: I absolutely agree. Our care must be about seeing them early and building that relationship with a team, knowing people, and knowing what their "silent pause" means. Some people are thinking things through, and some people are signaling other things to you. Being able to listen with our eyes as well as our ears is important in our communication of the message with patients.
Do you think there is a place for symptom scoring to understand this better from a practical clinical perspective, or do we need to research that more to see whether it adds value?
Dr. Szczech: That is a tough question. One size does not fit all. I know I am preaching to the choir, but we have such heterogeneity in our patient populations. From the young woman with lupus to the older gentleman with diabetes, the symptoms they have, how they perceive those symptoms, and how those symptoms impact their lives is going to be different. One of the biggest problems we have had in nephrology clinical trials is that we have tried to make one size fit all with our quality-of-life measures, particularly in anemia management.
Dr. O'Donoghue: Yes.
Dr. Szczech: The translation to the clinical trial is awfully tough. Having said that, bravo to the people who participated in the IDEAL trial. Those brave people took the chance of starting dialysis early -- which must be good, according to conventional wisdom, because it is invasive, it is expensive, it is high-tech -- vs those people who decided to wait, or were randomly assigned to the arm of just waiting. That bravery gave us tremendous answers that are not only going to save quality of life but also save costs that can be redistributed to the rest of the population in a Medicare-based system and in a National Health Service-based system.
Dr. O'Donoghue: I believe starting dialysis sometimes makes us feel secure. We know what is going to happen. We all, to a greater or a lesser extent, are unhappy with uncertainty. To know something, even if it is something bad, enables us to start to figure it out and incorporate it into our lives. We do know that dialysis is a major imposition, and where there is hospitalization, there are associated complications, and there is mortality.
The IDEAL trial has moved us forward a few steps, and now we need to be thinking about that. There is the young lady with lupus and there is the older gentleman with diabetes and diabetes complications, but there is also a range of older gentlemen with diabetes and complications, with a range of different viewpoints and values, cultures and understanding. Even when the biologics or phenotype are the same, the person is more than the phenotype.
Dr. Szczech: Right.
Dr. O'Donoghue: Understanding this will influence how we involve our service users and their caregivers, and how we have mature discussions about what we know, what we do not know, and what is likely to happen. That should be what happens in the MDT low-clearance clinic, predialysis, or whatever term we use for that. Yet, we have meager data in that area. Without data, it is more of a belief that the multidisciplinary approach is the way to go. We can preemptively transplant; we can educate. I am a believer in MDT, but I would like to have more evidence base as well, so it moves from a faith-based approach to an evidence-based one.
What is your opinion about the evidence base around the requirement to be seen by the MDT?
Dr. Szczech: When I read the IDEAL trial and thought about the evidence in its totality, I was reminded of the first clinical trial that was done to test whether ligation of the internal mammary artery cured angina. Everyone thought, how could you ethically assign someone with a steal syndrome to not having the internal mammary artery ligated? You need to make sure that you route that coronary artery blood appropriately. But someone had the guts to do this.
I remember during my fellowship, I was taught to tell people that Medicare would start paying for their dialysis when their creatinine gets to "X" level, even though we had a paucity of evidence back then. So this is a renaissance, but we still need to get into the modern times as compared with the dark ages.
Dr. O'Donoghue: Do we need both?
Dr. Szczech: We do.
Dr. O'Donoghue: We need art and science, and their interplay in this decision making area. We need to train and continue to practice to be really good clinical physicians in this area -- people who know and listen to their patients; people who do not decide for their patients, but know how to listen, how to communicate, and how to pick up the physical signs and interpret the chemistries. This is a fascinating area of practice.
Dr. Szczech: Absolutely, and one of the most important things that we do. Our message to primary care physicians is, do not hesitate to send the patients to us. Even though we are saying we are going to start dialysis later, we want to see patients sooner so we can develop that relationship and perhaps preemptively transplant them.
Dr. O'Donoghue: "Preemptive transplant" is one message. The other message that our viewers will not be party to, but would have known if they had seen us getting the Skype sorted out, is that we are not just technicians; perhaps we are not even technicians. I believe it is quite possible that a number of people with pretty low GFRs could be managed fairly well in primary care. But then it would be difficult for us, the specialists, to have the conversations and know the patients, to get the start time right and to defer until the right time if we just see people, bang, when they need to start dialysis. Late referral is definitely bad, so the message for me is that we should build our systems to avoid late referral. That is a big education message.
The other message, which may be similar or even more profound in the United States, is that we have to pay for our predialysis care. We cannot just say, let's do it. It has to be reimbursed in some way, and it has to be specified. In the UK system, you may think it does not matter because the payment system is clearly quite different -- but in fact, once people are on dialysis, a whole series of things kick in. There is a named nurse and a whole industry, a whole systemized approach to the management of that individual who is recognized and, essentially, funded and accepted by the system. In contrast, preparation and predialysis care, which are a little slipperier, are more difficult to define, cost less, and are less codified. People have said it is better to put people on dialysis because then they can get these benefits and those benefits, but that is not the reason to dialyze someone, and it certainly does not save money for the healthcare system. The decision needs to be based on the clinical need, which should be determined by nephrologists and all members of the support team.
Dr. Szczech: That was very well said. We need to get patients to the nephrologist sooner, but we also need to revamp how we are doing CKD care and how it is reimbursed, so that the resources are available to give the CKD patients the security that their counterparts with 3-cc lower GFR have on dialysis.
Dr. O'Donoghue: Yes. We need to reward primary care and diabetologists for referring patients earlier, and we need to reward nephrologists for not putting people on dialysis. That is kind of dangerous to be putting incentive into the mix, but I hope people will get the message. Reward people for doing things at the right time, and do not oversimplify things.
There is a great video blog from Dr. Jeffrey Berns, as well, about the guidelines if you want to listen. Or read the article in the Canadian Medical Association Journal. Dr. Szczech: For Donal O'Donoghue, I am Lynda Szczech. Thank you for watching our Skype chat. We will look forward to chatting with you again in a few months. Take care.
Dr. O'Donoghue: See you soon.
Donal J. O'Donoghue, MBChB, FRCP: Hi. I am Donal O'Donoghue, a kidney doctor in Manchester, England. Welcome to this Skype chat with Lynda Szczech.
Today, we are going to chat about the recent Canadian guidelines on intent to defer the start of dialysis. These guidelines have been interpreted in some quarters as saying, "Don't start dialysis until the estimated glomerular filtration rate (eGFR) is less than 6.0 mL/minute/1.73 m," which is a misinterpretation. But there are some tricky issues about this intent to defer.
Lynda, would you like to say hello?
Lynda A. Szczech, MD: Hello, everyone. My name is Lynda Szczech. I am a nephrologist in North Carolina and immediate past president of the National Kidney Foundation.
I would love to ask Donal to kick off this conversation, but first I want to acknowledge that Donal and I know we are talking about real people, quality of life, and individual decisions. So while we discuss numbers and survival and mortality, please know that we understand that this is a very complex conversation that balances individual assessments of quality of life vs quantity of life.
Donal, go ahead.
Dr. O'Donoghue: The recommendation, published in the Canadian Medical Association Journal, is timely and worth reading. This guideline is based on expert opinion and an analysis of the evidence base; but remember, there is a lack of evidence in this area. In addition, we need to consider that the other aspect, expert opinion, is expert medical opinion -- which is fine, but we need to balance that in clinical practice with the patients' wishes and desires, and patients' views on such elements as quality of life and risks they may want to take.
The challenge, I think, is how to operationalize the intent to defer. For me, the key remark is the importance of being under the care of a nephrologist, and I would expand that to being under the care of a multiprofessional team (MPT) for everyone in stage 5 chronic kidney disease (CKD). You can always challenge this, and there will be patients, for example, with advanced malignancy for whom dialysis would be inappropriate. But I hope our listeners will recognize that when we decide we are not going to follow people with CKD in the multidisciplinary team (MDT) clinic, this is an act of exclusion.
Dr. Szczech: It all comes back to that, doesn't it? By "that," I mean getting to the nephrologist within a reasonable period of time.
I love the phrase "intent to defer" because that gets us away from the hard numbers that we have become so married to over the past 10 years -- the mandate that, "You have to get the hemoglobin from 10 to 12; otherwise, you are a bad nephrologist."
Dr. O'Donoghue: Yes, yes.
Dr. Szczech: Perhaps the decision should be individualized, and "intent to defer" means, "This is what I intend to do, but if something pops up that I need to change, I can do that for this individual patient." I love that individualization. Bravo, nephrology; bravo, Canadians.
Dr. O'Donoghue: Bravo. I think they have done a great job with this guideline. Defer until the eGFR reaches 6.0, but begin dialysis at the first indication that dialysis will be beneficial. That is a difficult decision as well, considering hyperkalemia, fluid overload, and uremic symptoms, and the challenge for the future is to fill in this evidence base.
This recommendation is great practical advice. Do not start too early, watch people, manage them closely, manage those symptoms, and do not forget about preemptive transplantation. This is about dialysis. It is not saying, wait until the eGFR reaches 6.0 to transplant people preemptively. To me, it resonates extremely well.
I have been interested in the UK data in terms of the GFR at start of dialysis, which during the past 15 years has gone from about 6.2 up to 8.5 mL/minute/1.73 m. This level of 8.5 mL/minute/1.73 m is considerably less than in the reported data from the United States.
But the numbers only tell us a small amount. They do tell us about the difference in practice, but I do not believe they tell us the reasons for that, and they certainly do not tell us what is right. Only 2 studies on quality of life were included in the Canadian analysis: 2 studies on quality of life and start of dialysis. This is kind of an indictment for us to get on with it and research that area, but it also is an acknowledgement that it is really difficult to do and a recognition that we may increase the importance of factors we can measure, yet these may not be the be-all and end-all.
For example, when I was younger, nutritional markers were all the vogue, and we thought we would be able to make big inroads with nutrition -- and maybe we have improved nutritional status overall. I say "maybe," because we have not measured it systematically. But serum albumin and creatinine -- these are not the be-all and end-all.
How does implementing this recommendation play in the States?
Dr. Szczech: This is a tough one. As you were talking, I was thinking about all the US Renal Data System data I have about the number of people who start dialysis who have seen a nephrologist in the year before they started dialysis. I believe we have yet to crack 50% of incident dialysis patients seeing a nephrologist in the year prior. So is late referral a big problem? Is early identification a big problem? How does that intersect with the relationship you build with your patients?
Because hyperkalemia is a no-brainer and volume overload is an objective measure, we can judge that. But how do you know when someone is starting to have symptoms such that they are not just having a bad day or experiencing natural waxing and waning? How do you know when there is a definitive turn that justifies what is an imposition on their daily schedule by starting dialysis, potentially 6 months too early?
You have to know someone to be able to help make that decision with them, particularly when they are scared. Name a CKD patient who is not scared when they get the dialysis talk. I worry that what this all feeds into is getting the patients there earlier.
Dr. O'Donoghue: I absolutely agree. Our care must be about seeing them early and building that relationship with a team, knowing people, and knowing what their "silent pause" means. Some people are thinking things through, and some people are signaling other things to you. Being able to listen with our eyes as well as our ears is important in our communication of the message with patients.
Do you think there is a place for symptom scoring to understand this better from a practical clinical perspective, or do we need to research that more to see whether it adds value?
Dr. Szczech: That is a tough question. One size does not fit all. I know I am preaching to the choir, but we have such heterogeneity in our patient populations. From the young woman with lupus to the older gentleman with diabetes, the symptoms they have, how they perceive those symptoms, and how those symptoms impact their lives is going to be different. One of the biggest problems we have had in nephrology clinical trials is that we have tried to make one size fit all with our quality-of-life measures, particularly in anemia management.
Dr. O'Donoghue: Yes.
Dr. Szczech: The translation to the clinical trial is awfully tough. Having said that, bravo to the people who participated in the IDEAL trial. Those brave people took the chance of starting dialysis early -- which must be good, according to conventional wisdom, because it is invasive, it is expensive, it is high-tech -- vs those people who decided to wait, or were randomly assigned to the arm of just waiting. That bravery gave us tremendous answers that are not only going to save quality of life but also save costs that can be redistributed to the rest of the population in a Medicare-based system and in a National Health Service-based system.
Dr. O'Donoghue: I believe starting dialysis sometimes makes us feel secure. We know what is going to happen. We all, to a greater or a lesser extent, are unhappy with uncertainty. To know something, even if it is something bad, enables us to start to figure it out and incorporate it into our lives. We do know that dialysis is a major imposition, and where there is hospitalization, there are associated complications, and there is mortality.
The IDEAL trial has moved us forward a few steps, and now we need to be thinking about that. There is the young lady with lupus and there is the older gentleman with diabetes and diabetes complications, but there is also a range of older gentlemen with diabetes and complications, with a range of different viewpoints and values, cultures and understanding. Even when the biologics or phenotype are the same, the person is more than the phenotype.
Dr. Szczech: Right.
Dr. O'Donoghue: Understanding this will influence how we involve our service users and their caregivers, and how we have mature discussions about what we know, what we do not know, and what is likely to happen. That should be what happens in the MDT low-clearance clinic, predialysis, or whatever term we use for that. Yet, we have meager data in that area. Without data, it is more of a belief that the multidisciplinary approach is the way to go. We can preemptively transplant; we can educate. I am a believer in MDT, but I would like to have more evidence base as well, so it moves from a faith-based approach to an evidence-based one.
What is your opinion about the evidence base around the requirement to be seen by the MDT?
Dr. Szczech: When I read the IDEAL trial and thought about the evidence in its totality, I was reminded of the first clinical trial that was done to test whether ligation of the internal mammary artery cured angina. Everyone thought, how could you ethically assign someone with a steal syndrome to not having the internal mammary artery ligated? You need to make sure that you route that coronary artery blood appropriately. But someone had the guts to do this.
I remember during my fellowship, I was taught to tell people that Medicare would start paying for their dialysis when their creatinine gets to "X" level, even though we had a paucity of evidence back then. So this is a renaissance, but we still need to get into the modern times as compared with the dark ages.
Dr. O'Donoghue: Do we need both?
Dr. Szczech: We do.
Dr. O'Donoghue: We need art and science, and their interplay in this decision making area. We need to train and continue to practice to be really good clinical physicians in this area -- people who know and listen to their patients; people who do not decide for their patients, but know how to listen, how to communicate, and how to pick up the physical signs and interpret the chemistries. This is a fascinating area of practice.
Dr. Szczech: Absolutely, and one of the most important things that we do. Our message to primary care physicians is, do not hesitate to send the patients to us. Even though we are saying we are going to start dialysis later, we want to see patients sooner so we can develop that relationship and perhaps preemptively transplant them.
Dr. O'Donoghue: "Preemptive transplant" is one message. The other message that our viewers will not be party to, but would have known if they had seen us getting the Skype sorted out, is that we are not just technicians; perhaps we are not even technicians. I believe it is quite possible that a number of people with pretty low GFRs could be managed fairly well in primary care. But then it would be difficult for us, the specialists, to have the conversations and know the patients, to get the start time right and to defer until the right time if we just see people, bang, when they need to start dialysis. Late referral is definitely bad, so the message for me is that we should build our systems to avoid late referral. That is a big education message.
The other message, which may be similar or even more profound in the United States, is that we have to pay for our predialysis care. We cannot just say, let's do it. It has to be reimbursed in some way, and it has to be specified. In the UK system, you may think it does not matter because the payment system is clearly quite different -- but in fact, once people are on dialysis, a whole series of things kick in. There is a named nurse and a whole industry, a whole systemized approach to the management of that individual who is recognized and, essentially, funded and accepted by the system. In contrast, preparation and predialysis care, which are a little slipperier, are more difficult to define, cost less, and are less codified. People have said it is better to put people on dialysis because then they can get these benefits and those benefits, but that is not the reason to dialyze someone, and it certainly does not save money for the healthcare system. The decision needs to be based on the clinical need, which should be determined by nephrologists and all members of the support team.
Dr. Szczech: That was very well said. We need to get patients to the nephrologist sooner, but we also need to revamp how we are doing CKD care and how it is reimbursed, so that the resources are available to give the CKD patients the security that their counterparts with 3-cc lower GFR have on dialysis.
Dr. O'Donoghue: Yes. We need to reward primary care and diabetologists for referring patients earlier, and we need to reward nephrologists for not putting people on dialysis. That is kind of dangerous to be putting incentive into the mix, but I hope people will get the message. Reward people for doing things at the right time, and do not oversimplify things.
There is a great video blog from Dr. Jeffrey Berns, as well, about the guidelines if you want to listen. Or read the article in the Canadian Medical Association Journal. Dr. Szczech: For Donal O'Donoghue, I am Lynda Szczech. Thank you for watching our Skype chat. We will look forward to chatting with you again in a few months. Take care.
Dr. O'Donoghue: See you soon.
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