Tough decisions await those with end-stage kidney disease
成绩单
主持人安珀·史密斯:
锡拉丘兹上州医科大学, 纽约 invites you to be The Informed Patient, with the podcast that features experts from Central 纽约's only academic medical center. 我是主持人,安柏·史密斯.
Today we'll be talking about people with end-stage kidney disease and when and how they may go into hospice care. 我的客人,博士. Ayorinde Soipe, agreed to talk about a study he led recently that examined these trends in the United States.
欢迎来到“见多识广的病人”节目. Soipe.
Ayorinde Soipe, MD: 谢谢你,Amber. 很高兴今天来到这里.
主持人安珀·史密斯: I understand you accessed 美国肾脏数据系统 database for this work, 它包含了3的数据.400万患者. How did you choose the 800,000 whose data was used for this study?
Ayorinde Soipe, MD: 因此,, 美国肾脏数据系统, 简称USRDS, 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 3.400万患者 with kidney failure across the U.S. 接受透析治疗的人. So to arrive at our analytic sample of 800,000名患者. 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, 在2000年代, 在这个领域已经做了一些研究, but despite the changes in the landscape of hospital utilization across the U.S.,没有更新. 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, 然后我们来到了800,000名患者参与了这项研究.
主持人安珀·史密斯: 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名患者, 占分析样本的27%, 是否有临终关怀登记的历史.
主持人安珀·史密斯: We should probably describe what hospice enrollment is for listeners.
Ayorinde Soipe, MD: 是的,当然. 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.
主持人安珀·史密斯: 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: 透析, 通过定义, 是一种干预, 是一种治疗吗, 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. 通过扩展, any patient who has now reached this stage of being dialysis dependent are said to have reached end-stage renal disease. CMS的现行政策, 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.
这就是政策. So it's like you have make a choice if you wanna go into hospice,you have to forego dialysis. 现在住在临终关怀医院的病人, 基于CMS策略, cannot at the same time be getting dialysis. But I need to mention that there are some efforts currently being trialed, 正在研究的, CMS试图打破这个障碍.
因此,re are efforts underway, but those are not policies yet.
主持人安珀·史密斯: 我来问你, if someone with end-stage renal disease suddenly stops taking dialysis, 我想我在想, 我知道透析是必要的, 但这也令人欣慰吗? 没有它,他们会痛苦吗?
Ayorinde Soipe, MD: 绝对.
Patients who have become dialysis dependent, who need dialysis to survive just because their kidneys have failed. 他们无法清洗自己的血液. 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.
因此,y become what we call fluid overloaded, meaning that they have 太 much water in them, and then this fluid overload leads to them having challenges with breathing. 所以他们变得呼吸急促, 他们无法呼吸, 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, 哪个会有点不舒服.
主持人安珀·史密斯: So maybe the policies need to keep up with this, it sounds like.
Ayorinde Soipe, MD: 当然, 可以肯定的是, especially if we're talking about patients who are seriously ill, 依赖透析的人, 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, 拥有高质量的生活. If they have to forgo that modality that gives them some comfort, then we are not really doing the best for them, 从这个意义上说.
主持人安珀·史密斯: This is 推荐最近最火的赌博软件's "The Informed Patient" podcast. 我是主持人,安柏·史密斯.
我正在和医生谈话. Ayorinde Soipe, an internal medicine resident at 推荐最近最火的赌博软件.
在你的研究中, how many of the people died on dialysis and how many died in hospice when they were not on dialysis?
Ayorinde Soipe, MD: 我们的研究使用了数据库, 正如我们所说, 美国肾脏数据系统, which is a database that contains information for patients across the U.S. 接受透析治疗的人.
So 通过定义, 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名患者. 所以现在, talking about those who discontinue dialysis, 不用去临终关怀医院, 在我们的分析中, 我们显示的是大约66,000名患者 who died between 2012 and 2019, 这大约是我们样本容量的8%, did not actually go into hospice 即使在停止透析后. So this is a unique subset of patients that our study was the very first to, 实际上阐明, 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, 即使在停止透析后. This is something that is worthy of looking into.
主持人安珀·史密斯: So do you have any theories for what some of those things might be that would prevent them from entering hospice?
Ayorinde Soipe, MD: 从历史上看, 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. 因此,re 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. 所以可以肯定, 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.
主持人安珀·史密斯: 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. 当病人住在临终关怀医院时, they are able to receive different kind of modalities of treatment that will make them comfortable, 使他们的呼吸舒适, 减轻他们的痛苦. 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 他们无法呼吸 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, 帮助他们摆脱痛苦.
再进一步, 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. 因此, dying process in a patient who is in hospice, compared to a patient who's not in hospice, 是完全不同的. Hospice helps our patients be comfortable, 满足他们的护理目标, so that they can enjoy a little bit more at the end of life.
主持人安珀·史密斯: 好吧,博士. Soipe, I appreciate you making time for this interview and telling us about your research.
Ayorinde Soipe, MD: 非常感谢你,Amber. 今天很高兴来到这里.
主持人安珀·史密斯: My guest has been internal medicine resident Dr. Ayorinde Soipe.
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