Tough decisions await those with end-stage kidney disease

Host Amber Smith: ​

Upstate Medical University in Syracuse, New York invites you to be The Informed Patient, with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith.

Today we'll be talking about people with end-stage kidney disease and when and how they may go into hospice care. My guest, Dr. Ayorinde Soipe, agreed to talk about a study he led recently that examined these trends in the United States.

Welcome to "The Informed Patient," Dr. Soipe.

Ayorinde Soipe, MD: Thank you, Amber. It's a pleasure to be here today.

Host Amber Smith: I understand you accessed the United States Renal Data System database for this work, and that contains data for 3.4 million patients. How did you choose the 800,000 whose data was used for this study?

Ayorinde Soipe, MD: So the, United States Renal Data System, called USRDS for short, has clinical and demographic information for patients with kidney failure and who are on chronic dialysis across the United States.

The database was initially created in 1989. And as at the time when we did our study, the database contained 3.4 million patients with kidney failure across the U.S. who are on dialysis. So to arrive at our analytic sample of 800,000 patients. What we did was that we utilized a statistical software called SAS to identify patients who had died between the years 2012 and 2019.

The reason why we chose 2012 was because earlier on in the year, in the 2000s, some studies had been done in this field, but despite the changes in the landscape of hospital utilization across the U.S., there was no updates. There was no recent studies that had updated those findings, so we decided to use 2012 as a cutoff.

And then we also used 2019 as the other cutoff just because the data from USRDS for 2020 upwards was still being prepared, so we focused our analysis between 2012 and 2019, and we came around to the 800,000 patients for the study.

Host Amber Smith: So of the patients in your study, how many had a history of hospice enrollment?

Ayorinde Soipe, MD: What our studies showed was that approximately 218,000 patients, which was 27% of our analytic sample, had the history of hospice enrollment.

Host Amber Smith: We should probably describe what hospice enrollment is for listeners.

Ayorinde Soipe, MD: Yeah, for sure. So hospice is the type of care that emphasizes comfort and quality of life among patients with advanced illnesses.

So it's not uncommon for us to see patients who have very serious illnesses to be referred to experts that are called palliative care experts, whereby the coordination of the patient's care can be aligned with the patient's goals of being comfortable when they eventually decide to go into hospice. So hospice helps these patients to have a more comfortable end of life.

Host Amber Smith: Now, can these patients be on dialysis when they're in hospice? And I should ask you to please describe what dialysis is.

Ayorinde Soipe, MD: Dialysis, by definition, is an intervention, is a kind of treatment, whereby excess water and toxins in the blood are being removed by passing the blood through a machine -- this is the dialysis machine -- and then returning the blood back to the patients.

So this is done for patients whose kidneys have failed and who cannot perform these functions naturally anymore. By extension, any patient who has now reached this stage of being dialysis dependent are said to have reached end-stage renal disease. Current policies by the CMS, the Centers for Medicare and Medicaid Services, is that patients who have a primary diagnosis of end-stage renal disease and who choose hospice would not be able to get dialysis.

So that's the policy. So it's like you have make a choice if you wanna go into hospice,you have to forego dialysis. So patients who are in hospice currently, based on CMS policies, cannot at the same time be getting dialysis. But I need to mention that there are some efforts currently being trialed, being explored, by CMS to try and break this barrier.

So there are efforts underway, but those are not policies yet.

Host Amber Smith: So let me ask you, if someone with end-stage renal disease suddenly stops taking dialysis, I guess I'm wondering, I know that dialysis is essential, but is it comforting as well? Will they be in pain without it?

Ayorinde Soipe, MD: Absolutely.

Patients who have become dialysis dependent, who need dialysis to survive just because their kidneys have failed. They're not able to clean their blood. They're not able to get rid of the excess water in their blood. Eventually, all these things kind of accumulate in them, especially the toxins and the fluid.

So they become what we call fluid overloaded, meaning that they have too much water in them, and then this fluid overload leads to them having challenges with breathing. So they become short of breath, they can't breathe, and eventually this can lead to a lot of discomfort. So patients who are receiving dialysis definitely benefit more by the dialysis helping them clean their blood, and also getting rid of the excess water in their system, compared to somebody who's not receiving dialysis, which can be a little bit uncomfortable.

Host Amber Smith: So maybe the policies need to keep up with this, it sounds like.

Ayorinde Soipe, MD: Certainly, for sure, especially if we're talking about patients who are seriously ill, who are dialysis dependent, we need to be able to let them have a choice If they want to go into hospice and they want to keep doing dialysis, mainly because hospice's role is to make them comfortable, to have good quality of life. If they have to forgo that modality that gives them some comfort, then we are not really doing the best for them, in that sense.

Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith.

I'm talking with Dr. Ayorinde Soipe, an internal medicine resident at Upstate.

Now in your study, how many of the people died on dialysis and how many died in hospice when they were not on dialysis?

Ayorinde Soipe, MD: Our study used the database, as we said, the United States Renal Data System, which is a database that contains information for patients across the U.S. who are on dialysis.

So by definition, any patient who is in that database needs to be on dialysis. Then for our own study, what we did was then to now identify those who died between 2012 and 2019. So that now narrowed down our sample size to 800,000 patients. So now, talking about those who discontinue dialysis, without going to hospice, among our analysis, what we showed was that approximately 66,000 patients who died between 2012 and 2019, this was about 8% of our sample size, did not actually go into hospice even after stopping dialysis. So this is a unique subset of patients that our study was the very first to, actually elucidate, was the first to show that every year from 2012 to 2019, there's a specific proportion of patients who stop dialysis but still do not go into hospice.

So what could be responsible for this trend? There needs to be some other factors playing in the background that's keeping these patients from going to hospice, even after stopping dialysis. This is something that is worthy of looking into.

Host Amber Smith: So do you have any theories for what some of those things might be that would prevent them from entering hospice?

Ayorinde Soipe, MD: Historically, the major barrier that has been identified as what is causing people from using hospice is the CMS policies. But as I said, even when patients stop dialysis, they still don't go into hospice. So there have to be other factors in the background that's keeping them. This could be just a theory: It could be maybe secondary to lack of knowledge among providers on the benefits that hospice will give to these patients. Or it could be secondary to some cultural or demographic barriers that need to be explored more, that need more efforts to try and ameliorate. So for sure, this is an area that needs to be further explored so that we can really identify what's keeping those subsets of patients from going to hospice even when they stop dialysis.

Host Amber Smith: Can I ask you to compare what death is like for someone with end-stage renal disease if they are enrolled in hospice versus if they're not?

Ayorinde Soipe, MD: The main goal of hospice is to make the patient comfortable at the end of life. And when patients are in hospice, they are able to receive different kind of modalities of treatment that will make them comfortable, to make their breathing comfortable, to make their pain comfortable. When the patient who's on not on dialysis is dying, it could be secondary to a lot of toxins building up in their blood. It could be secondary to a lot of water building up in that system whereby they can't breathe very well anymore. If they don't receive hospice treatments, the dying process might be a little bit more uncomfortable compared to somebody who's in hospice, who receives other modalities to help them with their breathing, to help them with their pain.

And going further, if somebody is now in hospice and is able to even get dialysis when in hospice, this even helps better because what that will do is that you'll be able to manage their symptoms. You'll be able to help them breathe even more by giving them some form of comfort in terms of dialysis. So the dying process in a patient who is in hospice, compared to a patient who's not in hospice, is definitely different. Hospice helps our patients be comfortable, meet their goals of care, so that they can enjoy a little bit more at the end of life.

Host Amber Smith: Well, Dr. Soipe, I appreciate you making time for this interview and telling us about your research.

Ayorinde Soipe, MD: Thank you so much, Amber. It's been a pleasure to be here today.

Host Amber Smith: My guest has been internal medicine resident Dr. Ayorinde Soipe.

"The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe.

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