The landscape of options for treating people with kidney failure is shifting. It used to be that the “only” robust option in the US was dialysis. You can listen to our prior podcast with Keren Ladin talking about patients who viewed dialysis as their only option, and structural issues that led to this point (including this takedown of for profit dialysis companies by John Oliver). One of the problems was a lack of an alternative robust option to offer patients. As one of our guests says, you have to offer them something viable as an alternative to dialysis.
Today we interviewed Sam Gelfand, dually trained in nephrology and palliative care, Kate Sciacca, a nurse practitioner (fellowship trained in palliative care), and Josh Lakin, palliative care doc, who together with a social worker and other team members started KidneyPal at DFCI/BWH, a palliative care consult service for people with advanced kidney disease. As a team, they provide a robust alternative to dialysis for patients with kidney failure: conservative kidney management.
And “conservative,” as they note, can mean not only a “conservative approach,” as in non-invasive/less aggressive, but also an effort to “conserve” what kidney function remains.
We get right down to the nitty gritty of kidney supportive care techniques they incorporate in clinic, including:
- Communication about the choice between dialysis and conservative kidney management: what are the tradeoffs? Function often declines after initiating dialysis, at least among nursing home residents. Dialysis may extend life, but those “additional” days are often spent in the hospital or dialysis, away from home. Symptoms are common in both options, though more anxiety and cramping in dialysis, more pruritus and nausea in conservative kidney management..
- Introducing the idea of hospice early, at the time of diagnosis with kidney failure. Listen also to our prior podcast with Melissa Wachterman on hospice and dialysis.
- Approaches to treating fatigue
- Approaches to treating pain – the second most common symptom (!) – and the answer isn’t tramadol (or tramadon’t) – rather think buprenorphine patch or methadone, and how to dose gabapentin and pregabalin. Also, don’t count out the NSAIDS!
- Approaches to treating itching/pruritus
- Approaches to treating nausea
Our guests were deeply grateful to their colleagues Dr. Frank Brennan, Dr. Mark Brown, and clinical nurse consultant Elizabeth Josland of the renal supportive care team at St. George Hospital in Sydney, Australia (down under) for teaching them the ropes of palliative care in kidney failure. And we got to learn some new vocabulary, including the meaning of “chunder.”
Enjoy!
-@AlexSmithMD
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Moderators Drs. Widera and Smith have no relationships to disclose. Guest Sam Gelfand, Kate Sciacca, and Josh Laking have no relationships to disclose.
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Eric 00:09
Welcome to the GeriPal podcast. This is Eric Widera.
Alex 00:12
This is Alex Smith.
Eric 00:13
And Alex, who do we have with us today?
Alex 00:15
We are delighted to welcome Josh Lakin, who’s a palliative care doctor at Dana Farber Cancer Institute in Brigham Women’s Hospital, former fellow from here at UCSF. And I saw that he actually wrote a post on GeriPal back in 2013 when he was a fellow, but this is the first time on the podcast. Josh, welcome to the podcast.
Eric 00:35
What was the post on?
Alex 00:36
Something about DNR or code status?
Josh 00:39
Yeah, something like that.
Alex 00:42
We’re delighted also to welcome Sam Gelfand, who is a dual certified nephrologist and palliative care doctor also at the Dana Farber Cancer Institute in Brigham and Women’s Hospital. Sam, welcome to the GeriPal podcast.
Sam 00:55
Thank you so much for having us.
Alex 00:57
And Kate Sciacca, who’s a palliative care nurse practitioner at the Dana Farber Cancer Institute and Brigham Women’s hospital. Kate, welcome to GeriPal
Kate 01:05
Thank you. Thank you.
Eric 01:06
So we got a lot to talk about today about palliative nephrology or kidney pal. But before we do, we always ask for a song request. Sam, do you have the song request?
Sam 01:18
Yes. On behalf of the group, we would love to hear down Under by Men at Work.
Eric 01:24
Can I ask, why did you choose this song?
Sam 01:27
Well, a lot of what we do in kidney palliative care derives from, I’d say, the worldwide pioneers in this kind of medicine. At St. George Hospital in Sydney, where Kate and I both got to rotate when we were still fellows.
Eric 01:42
Oh, nice shout out to our Australian colleagues. Alex.
Alex 01:51
(singing)
Alex 02:16
Women glow and men plunder?
Alex 02:21
Can’t you hear the thunder? You better run, you better take cover.
Eric 02:32
Sam, what’s that song actually about?
Sam 02:37
I think we should get our Australian colleagues on the line to explain it. There’s a lot of vocabulary in there.
Eric 02:43
Yeah, there’s a lot.
Alex 02:45
Yeah. The next verse, the next chorus features the word “chunder”, which I googled yesterday and learned means to vomit, where beer does flow, and men chunder.
Josh 02:59
Especially if you drink your beer thickened, gentlemen. Yeah.
Eric 03:03
And a head full of zombies is a reference to…?
Alex 03:08
Yeah, a little bit of marijuana, I think there. Eric? Yeah, yeah.
Josh 03:15
Palliative care. Relevant. Eric?
Eric 03:17
Yeah, bring it back to the eighties. Eighties, right.
Alex 03:20
That’s eighties at least eighties, if not earlier.
Eric 03:23
You think it’s early in the eighties?
Alex 03:24
It might be.
Eric 03:25
Well, that is not the topic of today’s podcast. We’re talking about KidneyPal. So I think this is started because we heard of a pretty interesting service at Dana Farber. Is it called a KidneyPal service? Is that the technical word that is? Tell us, when did this service start and what does it do?
Josh 03:48
You want me to kick that one off?
Eric 03:49
Go ahead. Josh.
Josh 03:51
Part of it. All right. It’s a service we started in about 2018, planning pre Covid times, BC organization. Kind of realized that we had put so much of our energy into providing palliative care for people with cancer diagnoses, we were leaving, I think, like many places were leaving, some of the other groups underserved, notably. And so there’s an institutional strategic planning process to figure out how to do something differently. How do we get palliative care to other populations?
And as a subspecialized institution, the Brigham identified a few areas where we could really lean into to do a better job getting palliative care to people. And one of those places was nephrology. The nephrologists and all the staff that worked there were hungry to have a palliative care team come and join them. So we did some work building an embedded service for patients with kidney disease, kind of within the nephrology division at the Brigham, and staffed it. We were very lucky to get a full interprofessional. Not quite full, but an inter professional palliative care team dedicated to providing specialty palliative care for people with kidney disease. And we built it out from there.
Eric 05:03
Which is all types of kidney disease.
Josh 05:05
All types of kidney disease. Any degree, any degree, any stage, any type.
Kate 05:11
Just one little bit of a creatinine bump, and we will take you.
Eric 05:16
Kate, who is involved in this team.
Kate 05:20
Myself, as the nurse practitioner. That’s a full time role. Ricky, leader, who’s not here, also on the team, Jesse, brain, who’s another NP, Josh and Sam. And then we have a social worker position that’s open, new social worker, starting with us. So those are kind of the team members. And the core team members.
Eric 05:40
Is this outpatient? Inpatient?
Kate 05:42
Good question. We started our inpatient service. I think January 1 of 2019 was kind of the or January 3, because January 1 was like a weekend, but we’ve been open in so since then, and we started our. We opened our clinic in the spring of 2020, like, or January of 2020.
Alex 06:03
Rough time to start.
Kate 06:04
Yeah, tough time to start an outpatient clinic, and then we kind of derailed, got derailed for a bit and then kind of have been picking up steam over the past two years.
Alex 06:15
So inpatient and outpatient. And how does this integrate? How does, on the outpatient side, how do you integrate with the nephrology service?
Sam 06:23
We partner really closely with the nephrologists, and we actually hold our clinic in the same physical space where the nephrologists see their patients.
Eric 06:32
And, Sam, I can imagine you partner very well because you are both pallor.
Sam 06:38
I try. I sort of hat switch, but, yeah. Tuesdays I am with Kate in our kidney pal clinic, and Wednesdays I see my CKD patients. As a nephrologist. We are often partnering closely and co managing patients with advanced kidney disease in the clinic. And occasionally our nephrology colleagues, who would rather focus on other parts of care, just ask us to take over their patient’s care. And I act as the nephrologist with Kate and our social worker as the palliative care branch.
Eric 07:09
So you’re actually switching hats a lot. You’re not just acting as a palliative care doctor, but sometimes in this clinic, in the kidney palate clinic, you’re also the nephrologist.
Kate 07:19
Yeah. She’s learned beautifully to wear two hats at the same time. Actually, I would argue, rather than switching.
Sam 07:25
That’s a little high praise, Kate, because I honestly feel like, I’m like, so about the hypertension, how do you feel about taking four medications? Which actually is how maybe we should always approach that. But it’s been a process to meld the two approaches.
Eric 07:40
And real quickly about the patient population. Are most of these people like Perry, like the dialysis area time, or is it before that, or is it after that? They’re early on dialysis, and. And that’s where your team is getting involved.
Kate 07:56
I mean, I think it speaks to, like, where our, where our whole entire program first started back in 2019, we started with just patients who were on chronic hemodialysis, because that was, they had a weekly IDT meeting, and they had already kind of established an IDT structure for those, that group of patients. And then we did something really cool over the whole entire origins of our program, which is just went where the needs were. We kind of never really set, like, this is what we’re.
Where we’re going to be helpful. This is what we’re going to be helpful with. And we did that in our outpatient setting, too, and we’ve just kind of flowed naturally towards more being more involved in the decision making process around dialysis and the outpatient space and more and more towards that space over time. So, still doing symptom management for people on dialysis, still having conversations about stopping dialysis. But as we’ve kind of made our niche, it’s kind of grown more and more towards that decision making support around initiating or discontinuing dialysis.
Sam 09:00
Yeah, I just want to add, because I think there was a huge learning experience for the nephrologist to see how can we be most useful to them. And at first, the first pain point and patient population that come to mind are the ones who are really suffering, not doing well on dialysis, need to have inpatient family meetings, talk about what’s going on and break bad news, all of those skills.
And then even just within the first year, I think they noticed, like, whoa, this team can really help us way upstream with the patient with Aki, who’s coming in, who needs a much more in depth conversation about their options and what makes sense for them before they’re on dialysis as a default. And so the consult origin shifted to the general consult service of people coming in with new kidney disease, asking our team to be involved in those kinds of consults.
Alex 09:50
That is so interesting. It sort of mirrors the trajectory of palliative care in other serious illnesses like cancer, where at first, the conversations are primarily around, can you help us with symptoms like pain and other distressing symptoms? And then as they realize and build trust and relationship and comfort level, and they see the skills that palliative care has to offer, they become more and more comfortable with upstream conversations about goals of care. I’d love to hear more about, well, many things, but I wonder, could we jump to talking about how you help with those conversations around conservative management versus dialysis?
Eric 10:31
Yeah, I love that because we actually had a podcast with Karen Ladin about that issue. And I remember the thing that I remember from that podcast was that she did these qualitative studies with patients, and patients didn’t know it was a choice because two thirds of nephrologists didn’t bring it up as a choice. And the patients themselves thought, if I don’t do dialysis, I am going to die right away. So there was this need for this type of intervention that you’re doing. So what are you actually doing around this peri? Dialysis versus conservative management space.
Kate 11:08
So, yeah, so our clinic, we take anybody at any stage, we’ve kind of naturally gravitated more towards this decision making space. And then a huge thing that’s grown out of that is our work in the conservative management space. And ever since taking this job, I’ve done a test on patients who are on dialysis, who are before, and be like, do you think this is a choice?
And time and time again, people have said, no, no. And then they kind of look at me like, what is this girl talking about? And so just exactly, that is what we’re trying to do. And I think Sam and I both feel really passionately about, yeah, it might be a choice, but what is that choice? Like, then there has to be something on the other side of that bridge. Right? Like, you can’t just say, okay, you can do conservative kidney management and then send them out along their way. Like, CKM has to be a thing. It can’t be defined as the absence of dialysis.
Eric 11:59
And so that’s conservative kidney management.
Kate 12:03
Yes. Yeah.
Eric 12:05
And so that’s where it’s a real thing now.
Kate 12:07
Yeah. So that’s. Our efforts have. Have been really over the past, growing efforts to kind of define what conservative kidney management is and provide support and guidelines and teaching around, like, what is CKM? What does it mean to provide CKM? And what do you need to have a rigorous CKM clinic?
Eric 12:25
All right, what is CKM?
Sam 12:28
Okay, here we go. CKM. We think it needs to be. And what I think the most positive outcomes have been achieved is when it’s a team based, proactive, holistic approach to the care of kidney failure for the patient who has kidney failure and their family. So what does that mean? It can’t be done by a single nephrologist or a single palliative care specialist. It should be ideally from an interdisciplinary team tackling. Basically, we’ve broken it down into four big domains or categories.
Number one, symptom management, for sure. The symptoms of uremia or kidney failure can be managed with medications, lifestyle changes, and habit changes, diet changes as well, not only dialysis. Number two, a huge part of conservative kidney management is the conservative part. Conservative means to some people that you’re not doing something, but it can also mean conserving what you have.
Alex 13:31
I like that some people say preservative.
Sam 13:35
The idea is that it’s really a continuation of conventional CKD care with Ras, blockade, and SGLT two s, and anything that we know might actually extend the shelf life of the kidneys that you have. But in CKM, we think of it very much as a customized, like, what makes sense for the individual in front of us, how long do they have to benefit from certain medications? Is this a benefit that accrues over ten years, or is it over six months of being very picky about how long we get, let med lists get, and how often we take labs and all of that as part of the CKD management bucket.
And then the two other buckets that I think are essential are the psychosocial support piece and the advanced care planning piece, which is really for conservative kidney management to not turn into a 01:00 a.m. starting dialysis in the emergency room picture. You really need to talk about it. You need to talk about what the expected course of things is likely to be, what an action plan is going to be during the setbacks, and all of the things that maybe aren’t spoken about too much in typical nephrology practice. We focus a lot on those in our conservative kidney management discussions.
Eric 14:53
I’m just thinking back to our Gretchen Swarzy podcast about when we’re thinking about surgical interventions. There’s fundamentally four things that surgery does. Makes you live longer, makes you feel better, makes you more functional, or come up, get a diagnosis. So in this case, like this decision around dialysis, like those three things feel better, more functional, live longer. When you think about this type of conservative kidney management versus let’s get them into dialysis, John Oliver would say, let’s get Davita some money.
Alex 15:28
Great John Oliver episode, by the way. For anybody who hasn’t seen it, we’ll link to it in the show notes associated with this podcast huge financial pressures towards dialysis in this country.
Eric 15:38
What do we know about the outcomes of conservative this type of conservative kidney management versus let’s get them onto dialysis. And what we’ve seen is, over the course of the last couple decades, an early and earlier initiation of dialysis with higher gfrs. Thoughts?
Sam 15:55
Yeah, definitely. I think you just nailed it because people overestimate their survival with dialysis and underestimate survival with conservative management. And then Kate and I always like to say it’s rarely about survival. If you ask people what really matters to the most if time is uncertain, talking about what life can look like with one versus the other is where we spend a lot of our time.
And to answer your question, I think the observational data that exists shows that the survival and quality of life benefit from dialysis is attenuated or completely erased in patients who are very seriously ill, as well as patients who are more advanced in age over 80. So that alone can’t tell us whether dialysis or conservative management is the right answer, but it’s certainly the starting point.
Eric 16:50
And I also love there’s another study looking at the time given, because in some populations, there does seem to be, like it prolongs your life. Appropriate dialysis initiation. But if you include hospital time and dialysis days, it looks pretty similar on the graphs.
Kate 17:12
It’s one of our favorite slides, and we have shown patients it visually before.
Eric 17:17
Really?
Kate 17:18
And we have, like, whenever we talk about CKM, like, one of the first things I say is, this is a treatment that may not, depending on who I’m talking to, what their comorbidities are, I say, this may not extend your life as long as dialysis, but it may give you the same amount of time at home, out of the hospital, out of a medical facility. And so we address that right at the start of when we talk about conservative kidney management. And it’s a pretty good litmus test to see whether somebody would be a good candidate and want to do CKM versus whether they might have more hesitancy around it.
Sam 17:57
In that study, the people who chose dialysis lived more than twice as long. And so when you show some people, they’re like, oh, my God, of course, dialysis. Who would want to not live that long? And other people look at it, and immediately, if that’s what I’m going to be spending my time doing, maybe I’d consider the alternative.
Eric 18:15
So there’s the live longer question. There’s the make me more functional. And I always think back to, was that New England journal? It was. There’s an article ways ago about nursing home patients initiating dialysis. I remember this one always, because, like, we start dialysis thinking, oh, their functional status is maybe they’re uremia coming out. And if you just fix the uremia with dialysis, their function improves. But nobody improved on dialysis in this population. As far as their function. Small groups stayed the same. Most people either died or had a decrease in function after dialysis.
Alex 18:47
Yeah. Manju Kurula study.
Eric 18:49
Yeah. How do you talk about function and prognostication around function when you’re thinking about conservative versus dialysis decisions?
Sam 18:58
You guys are hitting all the greatest hits. Like, truly, every single study we try to talk about when we educate clinicians, but also with patients, that New England journal study is so sobering because dialysis initiation in people living in a nursing facility, it’s so well intentioned, it’s like, maybe we can just get you a little less edema in your legs. You get stronger, you get out of bed. And unfortunately, people who work in clinical medicine know that that doesn’t seem to be the typical experience.
And then the data also backs it up. The corollary study, which is tiny, like that study, has almost 4000 patients, but the one that we sometimes show is from the UK. I think it’s 75 people who chose conservative management and they did functional status assessments by the Karnovsky monthly until death. And then looking back from the year leading up to death, it turns out that those people’s functional status stays relatively stable.
Up till the last month of life, on average, the KPS was around 60. So needing a bit of assistance, not perfectly independent, but instead of having the relapsing, remitting type of curve that we know our patients on dialysis have, with huge vascular events or admissions, and sort of a return almost to baseline, but not quite, and a slow trend downward. Conservatively managed patients with kidney failure look as though they stay pretty stable up to the last month and then have a really precipitous drop right before death.
Kate 20:31
And that’s clinically, that’s what we see that ties into how we talk about their advanced care planning. We get calls and, you know, one week, you know, like Sam and I have, like, our cohort of patients who are ckmers. Like, we can sort of identify where they are on that trajectory. And once they really start to decline, it’s quick. And that’s like, kind of why we do so much time talking about that transition point and thinking about it amongst ourselves, to see how we can best serve people. Up until that point, after that point, what does that point mean?
Alex 21:02
Yeah. And speaking of how to best serve them, at what point do you introduce the idea of hospice? Or is hospice able to layer on top of the services that you provide in KidneyPal?
Kate 21:15
We talk about hospice at the start and say that at some point when your body starts to decline or your kidneys start to get worse, we will, and it makes more sense to bring the care to you, to your house, as opposed to have you come see us, we’ll probably recommend hospice services. That’s like part of the initial discussion.
Eric 21:36
Do you do it in both groups? The groups also who that’s heading towards dialysis?
Kate 21:41
No, just for the CKM.
Eric 21:43
Just for the CKM?
Kate 21:44
Yeah.
Josh 21:44
More complicated in that other space?
Kate 21:46
Yeah.
Eric 21:47
Why is it more complicated, Josh?
Josh 21:50
Why is it more complicated? It’s hard to get people who are on dialysis hospice services in a timely manner, I suppose because of the regulations around hospice, which I think people are pretty aware of. It’s complicated and there are models out there where they’re trying to do concurrent dialysis in hospice care in Pennsylvania, Pittsburgh. But right now, while the rules say someone could continue dialysis on hospice if they have another diagnosis, like metastatic lung cancer, for which they’re certified for, the trend that I understand from the hospices lately is that Medicare and regulatory agencies still often consider kidney disease as a piece of what’s causing that person to get sicker.
And so hospices have gotten, at least in our area, and I think I’ve heard anecdotally elsewhere, more hesitant to try and carve out the dialysis side of things, which means in order to enroll in hospice for someone, they have to elect to stop dialysis. And for most people who’ve been on dialysis, time is very short at that point. So the benefits, it’s hard to kind of realize the benefits of hospice for that group. So they do get signed onto it. We do do preparatory work for people about thinking about stopping dialysis, but less of it is about the hospice piece of things, because it is just a short piece of that care, if even at all. They’re often so sick by the time they choose to stop that there’s not a lot of time.
Eric 23:15
And we will have a link to another. We did a podcast with Melissa Walkerman about all of these issues around dialysis and hospice. So again, we’ll encourage our readers, if they’re interested in that. We’ll have that and a link to another article that Melissa Chimero and myself, we actually wrote on that issue.
Alex 23:34
Can we talk about symptoms?
Eric 23:35
Yeah, because that’s the third one. When we’re thinking about, like, live longer, more functional, or feel better, how do you talk about symptoms in conservative kidney management versus dialysis? And does dialysis fix all these symptoms?
Sam 23:51
Definitely. Yep.
Alex 23:53
No, fixes everything.
Sam 23:58
Yeah, we wish. I think the sad reality is that kidney failure is a highly symptomatic illness. No matter how, you know, it’s even a language thing, you’ll know. I say kidney failure. I don’t say end stage renal disease or ESRD, because technically that’s defined as the illness treated by dialysis or transplant. So Kate and I and Josh, we talk about kidney failure, kidney failure, treatment options, because kidney failure is what causes the symptoms. And then dialysis, in addition, is a modality that can provoke more symptoms. So we try not to sugarcoat it. We share like symptoms are common, and they can be severe and frustrating with either pathway. We do know that symptoms within dialysis care, like routine dialysis care, are not structurally addressed or incentivized to be part of the.
Well, yeah. The quality incentive program that all dialysis units need to sort of try to do their best on their report card really doesn’t have a symptom control metric. It’s a lot of other things. So there are some worries that symptoms are under reported and under treated in the dialysis population. Upfront, when people are deciding on dialysis versus conservative management, we try to emphasize that that’s a huge part of how we partner with patients and families is that kidney failure is likely to cause you some problems. And we have ways to help you with those nephrologists specifically.
And when I was a nephrology fellow, we don’t get a lot of education on non dialysis forms of treatment for uremic symptoms. So we sort of have a boilerplate of tell us your symptoms and we will go from there. So many times, symptoms come in clusters. So we spend a lot of time sort of trying to get a whole sense of what the person’s going through.
Eric 25:51
And I’d love to hear about how you address very common symptoms in both. But real, like, big picture, how do they compare for those who get dialysis versus those who get conservative kidney management? Are the symptoms roughly about the same? Is it more for those who do conservative kidney management? Like, are some symptoms worse, like dyspnea?
Sam 26:13
Yeah. So the number of symptoms is roughly the same. Four to five severe symptoms is the average. But in both groups, which symptoms are most prominent seem a little bit different. Fatigue is the number one most common symptom in all patients with kidney failure, pain is the number two most common symptom. After that, patients on dialysis tend to experience things more like anxiety and muscle cramping from fluid shifts. Sometimes restless legs are worse there, too, whereas patients with being treated with conservative management tend to report more nausea, more pruritus. Kate, what else? Any other trends that you’ve noticed in our cohort?
Kate 26:55
No, I think that’s right. Tim?
Sam 26:56
Yeah.
Eric 26:57
Okay. Can we jump in? You want to talk about each of those from a perspective of kidney pal? I’m going to start off with fatigue. For fatigue, what do you do?
Alex 27:10
Just more dialysis or in conservative management, what do you do?
Kate 27:16
Well, what’s the fatigue from? Like, I think we do, it’s a joke, but I think we do really try. Like oftentimes in conservative kidney management, folks are having day night reversal. So they’re up a lot at night, sleep a lot in the day. So we try to say, okay, can we help them sleep at night. We use a lot of, like, low dose mirtazapine for sleep, anxiety and appetite. And so we try to really target whatever is driving the fatigue.
Eric 27:45
Yeah. Is there a role for. Because when I think about fatigue, too, like, in cancer patients, the more evidence we have around the importance of physical therapy, rehab, actually moving and getting up helps with fatigue. Do we have any around similar data around dialysis, or is it just not there yet?
Josh 28:02
Well, there’s that one study you always share, Sam, where they have people in the dialysis units with the little exercise bikes. Yeah. So that was dialysis world, but. Yes.
Kate 28:11
Yeah.
Sam 28:12
Intramediolitic.
Eric 28:13
Because that’s the problem. Right. You’re sitting three times a week in this dialysis unit, and then you feel bad, you know, in the afternoon after your morning sessions, or you’re lying in bed.
Sam 28:23
No, exactly. It’s really cool. The units that offer this, that you can do stationary bike with your legs, you can do weights with your non access arm. And I’ve seen photos of patients, even, who have amputations and prosthetics doing it. The data for that is at least the data that I’m familiar with is mostly about anxiety and depression scores. But I think. I think one of the things I see you do, Kate, the most is when fatigue is the most common or the most serious thing bothering someone is we talk about their mood, we talk about how they’re coping, we talk about their sleep hygiene, we talk about their social isolation.
We talk about what they enjoy and how to get more of it, and all of that acknowledgement and exploration, I think itself does have a bit of a therapeutic effect. We have one patient, we’ve been doing conservative management for almost two years now. Every single visit, she tells us how tired she is. And every single visit, we go through how you’ve been sleeping. Do you want to try this? Do you want to try that? She doesn’t want to try anything. She was a night shift worker for 30 years. She’s like, I’ve never been not tired a day in my life. But she wants to talk about it. Some patients were giving methylphenidate in low doses, too, when it’s truly like isolated fatigue with no other aspect of identity or lifestyle. And other patients were just talking through it and acknowledging it and trying to help brainstorm, like, what, if anything, could make it better for them.
Alex 29:50
That’s great. I love that holistic approach to treating fatigue. Such a hard symptom to treat. Probably the hardest symptom, maybe, in, you know, across disease categories. Also very difficult in cancer and heart failure, etcetera, and agree with your holistic approach. Can we move on to pain? Any tips? Pearls?
Eric 30:13
And what’s the pain from?
Alex 30:15
Yeah. Because most people wouldn’t have guessed, I think that pain was number two. After fatigue. Most people would have guessed pain number one. I mean, fatigue number one.
Eric 30:23
Maybe itching comes after that.
Alex 30:24
Yeah, that’s what I would have thought.
Eric 30:25
Yeah. Shortness of breath.
Alex 30:26
Yeah. Interesting. Tell us about the pain.
Sam 30:29
Okay. Yeah, no, pain is so common. And neuropathy, I’d say, is the most common pain syndrome. I love that. The initial question that we should always be, what is it from? Because tiny, small fiber neuropathy does respond to certain medications, but radiculopathy does not. So we try to always get a sense of, like, what do we know about what your pain’s from? How much are you willing to go through to get a diagnosis of what the pain is from? And then when it, it comes down to it, how is the pain affecting your function?
What are some functional goals that you would have if pain wasn’t limiting you so much? And pearls wise, when it comes down to medications, before we get to opioids, I actually think nsaids are really underused. I’m going to be come after by the Nsaid police. But nsaids are used in patients with kidney failure for good, understandable reason, for historical reasons as well as, like, they have so many risk factors for complications. But particularly in patients who are already anuric on dialysis.
Eric 31:29
You don’t have to spare the kidneys anymore.
Sam 31:31
You don’t have to spare the kidneys. You’re not trying to preserve 260 of urine a day, which I actually think does have a prognostic benefit for patients who are still oligaric. But if you’re anuric and you’ve got inflammatory musculoskeletal pain, judicious use of nsaids is essential.
Eric 31:49
And I just want to highlight one key point here is just because they have primary, like, thing you’re thinking about is the kidneys. And kidney pal, they often have multimorbidity, they have arthritis, they have all these.
Alex 32:01
Other sources, often have vascular disease.
Eric 32:03
Vascular disease, yeah, exactly.
Sam 32:07
Exactly. Like diabetic neuropathy. Since diabetes is number one cause of kidney failure, diabetic neuropathy is definitely one of the top syndromes. But the amount of sciatica and musculoskeletal pain we see is huge.
Eric 32:20
Okay, I gotta ask then, because we often then start thinking about, like, gabapentin, and we gotta think about, like, renal dosing. Is that a medication that you use for, like, diabetic type neuropathy pain? And how do you think about that with people with severe kidney disease?
Kate 32:38
Think about it very carefully. In people with severe kidney disease, we do use it. We use it a lot for neuropathy. We use it a lot for itch, which we can. That’s a whole other box to open. But we use it a lot in low doses and people with really poor kidney clearance, I mean, we start really slow, like 100 every other night and somebody with really compromised kidneys. And then if they can tolerate it, we increase it after a couple of days. I mean, like really slow and really careful, judicious kind of increases.
Eric 33:08
And do you just avoid, get pregabalin or.
Kate 33:12
No, we don’t. We use gabapentin first, and then if it doesn’t work or works to some degree, but not the way that we wanted to, then we oftentimes go to lyrica as kind of a second choice.
Eric 33:24
And then, Sam, for dialysis patients, you just dose gabapentin just post dialysis and no other additional doses. Right?
Sam 33:33
Right. The starting dose would be usually three times a week after dialysis at about 100 milligrams a day. Many dialysis patients can go up to 300 milligrams per dose. Same with pregabalin. We’re talking 25 milligrams per dose, which sound homeopathic when you’re not working in relation. But it works. It works really well. It’s often. And because it’s clusters of not just neuropathy but also itch, also restless legs, also poor sleep can have a really positive effect on all those.
Eric 34:07
What about snris, SSRI’s, venlafaxine, duloxetine, do you ever use those?
Sam 34:13
Yeah, we do. The data is sparse and you’re supposed to avoid or dose reduce in kidney failure. But we do use a good amount of duloxetine at low starting doses, 20 milligrams a day, and usually keep it there, sometimes up to 30. Going just to it is. Kate and I use a lot of really low dose buprenorphine and low dose methadone.
Alex 34:36
Oh, tell us more, why those so.
Sam 34:40
Of all the opioids, methadone, buprenorphine, fentanyl and dilaudid are the safest for people with kidney failure. Interestingly, they’re the least used, like oxycodone, hydrocodone and tramadol are the most used, even though those are the like, not pharmacokinetically. The ones you want to opt for.
Eric 34:57
We’ll share our Tramadont post, too. When it comes to tramadol, I always thought dilaudid and oxy were kind of middle ground. Kind of. I don’t know, both are kind of not great, but not as bad as morphine. Tramadol, hydrocodone, codeine.
Sam 35:15
Yeah, I’d say that’s fair in low doses. If you’re talking low doses and ckD, three, b or four, you’re going to be fine with either. The worse the GFR, the higher the dose, I think, is where you run into more toxicity with oxycodone.
Eric 35:28
And then why do you like buprenorphine?
Kate 35:31
We love it like a Butrans patch?
Eric 35:33
Is that what you’re talking about? Low dose buprenorphine patch?
Alex 35:35
Like five micrograms per hour.
Kate 35:37
Exactly. I think in, especially in our CKM population, it’s elderly patients who have a lot of pains, aches and pains, chronic pain, back pain, things like that that really inhibit their quality of life. And a low dose butrans patch is like easy for people to remember to do. It doesn’t require taking a pill, and it can increase their function quite a bit and is safe in kidney disease.
Alex 36:04
Patch every seven days.
Sam 36:06
Yeah, you can start it in an opioid naive patient. That’s huge.
Eric 36:11
Yeah, because it only delivers like ten or twelve omes per day with that poach. Big shout out to Katie Fitzgerald Jones. She got us prescribing the pass.
Alex 36:20
She did?
Eric 36:21
Yeah, we had a podcast with her, too.
Alex 36:23
Eric knows I handed off the service to him last week, and I think maybe every patient was on the buprenorphine patch.
Eric 36:30
Do you have any concern, any special concerns of buprenorphine and kidney disease? No.
Josh 36:36
I mean, the only one we run into is if the pain is going to be severe enough that you’re going to hit a ceiling effect.
Eric 36:41
Right. So when we see the patch technically maxes out per FDA at 20. So then you got to switch to either higher, some other formulation of buprenorphine, or switch to something else. Methadone. Thoughts on that?
Sam 36:53
Yeah, we use methadone a good amount. And we start at usually, like, truly 1 mg twice a day. Yeah, and we go up from there. But the number of people in their eighties with back pain who have a GFR of 16 who really only need that much, it’s not small. Like we get a lot of bang for our buck with that much, and they don’t tend to experience as much constipation or sedation.
Eric 37:20
What pushes you towards methadone instead of butrans patch, buprenorphine patch.
Kate 37:25
Oftentimes, like, especially dialysis patients, too, like the vascular pain will go towards the methadone and we use that. Thats kind of our go to vascular pain medication. What pushes us, ease of use a lot of times is what pushes us. I mean, if you have an 89 year old person whos frail and at home, its like the Butrans patch is like, going to be so much easier for them than measure this liquid methadone into this syringe three times a day, like those kinds of things.
Sam 37:56
And I think we offer methadone when, like you guys mentioned, in the inpatient setting, particularly if you commit to a butranth patch, you don’t know for seven days, you know, it takes several days to get to steady state. If you have a more dynamic situation or something, you want to be able to titrate a little bit faster. I might opt for Sedona verb, which.
Eric 38:14
Also takes a while to reach a steady state, too.
Sam 38:16
Absolutely. Absolutely.
Eric 38:17
You could continue to go up on the dose versus like a buprenorphine patch. Maybe not. Okay. Because we’re talking about pain, which is very related to dyspnea. How do you think about dyspnea? We’re going to do more lightning now because we got more. Only a couple minutes left. How do you think about dyspnea management?
Sam 38:33
Dyspnea manager so it’s like all these symptoms, I just, we haven’t said it out loud is, I always think in two buckets. One, the sort of underlying disease management piece, and then two, target the actual symptom. I don’t care what it’s coming from. So if dyspnea is coming from volume overload in a sort of person with heart disease, kidney disease, I’m leaning hard on diuretics and sort of daily weights sliding scale. That has been really effective for a lot of our conservative management patients. If it’s not effective or if the dyspnea is coming from another non volume mediated thing, we use the same opioids we just discussed. For low dose dyspnea or for low degree dyspnea. Yeah.
Alex 39:15
How about aging Benadryl?
Josh 39:17
Always Benadryl.
Alex 39:21
That’s a joke for our listeners. All right, don’t reach for the Benadryl first.
Josh 39:26
This is like what you taught me about Coalesce when I was in.
Eric 39:29
Turn off Josh’s microphone right now. [laughter]
Josh 39:38
Yes.
Eric 39:39
Why wouldn’t you, Gaba, tell me why?
Kate 39:44
Oh, Sam knows why.
Eric 39:47
Sam, why?
Kate 39:49
Because they told us to. In Australia.
Sam 39:51
Yeah, that’s what they. In Australia. Number one. So we’re gonna do it. Number two, itches in neuropathy. It’s not actually histamine mediated, for the most part, in uremia, so we treat it the same way we treat other neuropathies.
Eric 40:03
So same thing. Start low. And people who are still making urine 100, maybe even three times a week or daily or q other day, depending on what their GFR is. Yeah.
Sam 40:14
Yeah. I need to say that going straight to the medicine is not right. First of all, you really have to make sure it’s uremic. Itch. It has to be full body, no rash, dry skin.
Eric 40:25
Because dry skin is super common in diagnosis.
Alex 40:27
Patients start with lotions, probably.
Kate 40:29
Yeah, that’s what my answer should have been. Topicals.
Alex 40:33
Topicals first, Sarna.
Kate 40:35
Anything with, like, menthol in it, over the whole body, right after you get out of the shower. Those kinds of things is always the first line. And then the gabapentin after that.
Alex 40:47
Kate says as she scratches her arm.
Eric 40:49
Yeah, I noticed that. For those of us, we’re all scratching real quick. There is a look. I can’t remember if it’s for renal disease, but isn’t undansitron. There’s a little, tiny evidence. Am I. Am I not thinking about that? Right?
Sam 41:03
I think I’ve seen that. We don’t. We haven’t used it for that indication. There’s also the diphylacophalen, which I’m so proud to just be able to pronounce because I’ve never prescribed it.
Eric 41:15
What’s that?
Sam 41:16
Oh, it’s a, like, kappa opioid receptor modulator. It should be quite effective for uremic. We’ve never used it. It’s almost never covered. Listeners have used it and know how to get it covered. I’d love to know. But our secret ace in our pocket is uv light.
Kate 41:33
Oh, yeah, yeah, yeah.
Sam 41:34
They had two incredibly refractory uremic pruritus cases, like, just suffering like crazy. And you send them to dermatology. They set up uv light. The first treatment is usually, like, 37 seconds. So our patients come back to us and are like, that was ridiculous. And it works immediately.
Eric 41:53
Can I just go outside and get some sun?
Sam 41:56
Yeah, not in Boston.
Eric 41:58
Okay, one more. One more. I gotta ask. Nausea.
Alex 42:03
Lightning, round nausea?
Sam 42:05
Yeah.
Kate 42:05
I mean, underline.
Eric 42:06
Cause you try to fix the underlying reason there when you think about symptom management.
Sam 42:11
Well, because the most common underlying. Well, one of the most common underlying causes of nausea is diabetic. Like, gastroparesis or motility issues. We often use a motility enhancing agent first. Like metoclopramide. Yeah. And then, you know, constipation is so common that we also make sure that that’s not contributing. And we try to make sure they’re not using constipating anti nausea medicines like undance.
Alex 42:35
How about nausea from uremia?
Sam 42:37
Yeah. So in Australia, they use haloperidol in very low doses, 0.5 milligrams orally for that as first line or metoclopramide.
Kate 42:48
And always stuff standing. I mean, I think the kind of mistake with nausea related to uremia is to say, you take this as needed. It’s not going to work. You have to really instruct people. Take this two times a day, three times a day on a schedule. I don’t care if you feel nauseous or not. If somebody is actually nauseous from uremia, and you know that clinically, it’s not going to like, come and go and can be taken as needed.
Eric 43:13
Great. So making sure that they’re standing well, man, we could go on for an hour, but I want to thank all of you for joining us on this podcast. But before we leave, we want to do another shout out to our australian colleagues.
Alex 43:27
Thank you, folks in Australia down under. We really appreciate how much you’ve taught our colleagues who are joining us today.
Eric 43:34
Here’s a little bit more special song for you.
Alex 43:41
Buying bread from a man in Brussels he was six foot four and full of muscles. I said, do you speak of my language? He just smiled and give me a vegemite sandwich. Disgusting. Do you come from the land of down under? Web beaters flow and men shunder Chunder can’t you hear? Can’t you hear the thunder? You better run, you better take cover.
Eric 44:22
Thank you, Josh, Sam, Kate, for joining us on this Jerry pal podcast. That was fabulous.
Sam 44:28
Thanks for having us.
Josh 44:29
So good to see you.
Eric 44:30
And great job with kidney pal. I love the service to our listeners. We’ll have a bunch of links on our website to learn more, including about the articles that we’ve discussed on this podcast. And again, a very big thank you to all of our listeners for your continued support.