Dialysis May Not Be Best Option for Older People with ESRD

[beckums70]

Link on dialysis for older folks as promised:

http://www.protectpatientsblog.com/2015/05/dialysis_maybe_not_the_best_ch.html

[Charlie B53]

Quoted from the article
"Fewer than 1 in 10 patients choose peritoneal dialysis, which can be done at home and requires special preparation and training. Hemodialysis occurs at a center."     End Quote

This is BS.  It is a lack of information.  People are not informed very well.   PD is very simple.  Sure, it takes a bit of attention but over all it is very easily done and can greatly extend life, not having the debilitating side effects of hemodialysis treatments.  PD is gentle on the body.   Some people do have an uncomfortable 'full' feeling, but in time they will grow more accustomed to this.   Drain pain can be an issue with smaller people, tho it is possible with anyone, it is NOT everyone.

PD can be a very good thing.  It should be promoted, recommended for many many more people.

[DayaraLee]

I've spent quite a bit of time researching different modalities, and if the choice was placed before me now, I can't say with 100% confidence that I fully understand the many, many pros and cons of each option. However, if an individual is a decent candidate for any or all the types of dialysis (including home hemo with a care partner), I think they should be given the information and the time to process and ask questions about it. At the end of the day, their choice is their choice. But without understanding the possibilities and ramifications, it would seem like it's a blind choice.

My last grandparent passed away last year at the age of 89. If she'd lived another 9-12 months, given her decreasing kidney function, dialysis would have been something she and her surviving sons would've had to discuss. She probably would've decided against it (despite being a relatively healthy and perky 89-year-old!)... Even at her very advanced age, though, I hope that she would've been given all the information she needed - good and bad - to make an informed decision.

[kickingandscreaming]

This has nothing to do with age, but...One problem--and it's a biggie I think-- is that the profession has a blind spot (or 2) and it has to do with money. Medicare reimbursement specifically.  Nephrologists and Dialysis clinics make their best money on in-center Hemo and PD.  Home and nocturnal Hemo are less profitable and so are often "overlooked."  I recently read this disconcerting article: http://homedialysis.org/news-and-research/blog/158-dialysis-choice-or-dollars

On January 10, 2013, the Patient-Centered Outcomes Research Institute (PCORI) awarded a $1.9 million dollar grant to Arbor Research Collaborative for Health for a study called “Empowering Patients on Choices for Renal Replacement Therapy” (EPOCH-RRT) to study the selection of dialysis modality for kidney failure. Francesca Tentori, MD, a nephrologist and research scientist at Arbor Research, was the lead on the project. The initiative focused on "filling the knowledge gap that currently exists regarding patients’ priorities around dialysis modality" and was intended to gain "meaningful information for patients and caregivers."

There was one problem: the research was proposed to focus solely on in-center hemodialysis and peritoneal dialysis, the two types of dialysis that are the most commonly used—and, coincidentally—the most profitable to use, as well. In the spirit of full disclosure, the study itself did mention other dialysis options, such as hemodialysis done at home (home HD), kidney transplant, and conservative management (no dialysis or transplant), and even provided a very limited list of resources.

However, the new, "Choosing Dialysis" Arbor decision tool based on the EPOCH-RRT study, still only provides for two treatment options: in-center HD and peritoneal dialysis. Home Dialyzors United (HDU), the only dialysis patient group dedicated exclusively to peritoneal dialysis and home hemodialysis, has a mission to inform, inspire, and advocate for the home dialysis community. When we learned that Arbor Research was testing a "decision aid" that excluded home HD, including nocturnal and short daily HD, we vigorously opposed releasing this tool to the public without including ALL available treatments.

Here is another tool for deciding on options: http://mydialysischoice.org/

[DayaraLee]

Very troubling, considering that laymen usually rely on the "experts" to fairly and impartially provide the information we need to make decisions. To add to that, it looks like Arbor's study may not have even been compliant with the law (Social Security Act) in integrating only the two most profitable modes of dialysis into their tool and ignoring the rest.

HDU feels strongly that patients deserve the right that the Conditions for Coverage grant to: "Be informed about all treatment modalities and settings, including but not limited to, transplantation, home dialysis modalities (home hemodialysis, intermittent peritoneal dialysis, continuous ambulatory peritoneal dialysis,and continuous cycling peritoneal dialysis) and in-facility hemodialysis." And, yet Arbor requested—and PCORI funded—a study that directly contradicts this mandate.

Doesn't inspire much confidence that our medical professionals are prioritizing patient education or choice at even the middle of the list.    Aren't patient outcomes (which they're invested in, even if only to boost their own stats) somewhat better when we're knowledgeable and involved?

[Simon Dog]

I think home hemo can be more profitable that in-center, however, a clinic needs to reach a critical mass of patients - so they have enough to amortize the cost of the home care RN over a large number, and also have enough that home care reduces the number of shifts, or reduces the number of chairs to the point where fewer staff need to run a shift.   There is also the overhead of training a new patient - lots of RN time there - and guess what?  The RN gets his/her regular salary, but the MD gets $500 for his/per participation in your training.

[DayaraLee]

The bottom dollar runs it all, and I get that. Understand it, too, in the context of business and such. I guess it just makes it even more important to be your own advocate and, if circumstances allow, have a family member or friend look out for you and your interests as best they can. I don't have siblings or children, and my similar-age cousins are scattered across the country. If I survive my husband, it'll be me, myself, and I growing old, pretty much alone. Better start making better friends!!   

[Charlie B53]

Could this be another example of Corporate Greed?   Treatment selection not necessarily in the best interest of the patient but in the profitability of the Clinic?

I would venture a guess that the mortality rate of all those HOME TREATMENT patients are lower than those Cloinic based patients.   The reasoning may be simply that those patients self treating at home are taking a more active role in monitoring their progress.  Taking more interest in the quality of treatment and staying more compliant with their medications.

Am I wrong?   I have been before, just not too often.

[beckums70]

My personal experience was that PD was presented to me as the first course of action from very early on, way before I was ready for dialysis.  My doctor's encouraged me from the very beginning to do PD, and they do have a stake in the dialysis center I go to which also does Hemo.

When I had my last yearly check up with my Nephrologist he mentioned to me that although they present PD as a first choice to most of their patients (some patients are not good candidates for PD for various reasons) the majority of them choose to go with hemo.  When I asked him why he thought that was, he said that many don't feel confident enough to operate the machine or hook themselves up to it every day.  He also mentioned that a lot of patients want a technician or nurse to come to their homes and connect them to the cycler every night, and when they find out that's not how it works, they decide for HD.  I felt my center and my doctors did a good job of educating and training me on PD and talking to me about my options; however, I also took some of this into my own hands and did some research on my own. 

I am often blown away at how many people don't know what their lab values mean, and don't really understand how any of the dialysis modalities work.  My nurses told me of one patient who had PD catheter placement surgery and then cut the PD catheter tubing afterwards because she didn't realize it was placed there to do her therapy.  I don't think for a minute this wasn't explained to her before surgery, but some people prefer to remain ignorant about their care. 

So maybe it's a two part problem.  Perhaps some doctors and clinics aren't doing enough to educate patients on their options, and maybe some patients are not willing to either listen or do their own research to figure out what is best for them.

I work with the elderly, and there are many who would not be able to handle PD.  Keeping up with ordering supplies, lifting heavy boxes and bags of dialysate, disposing of all the garbage and even being able to keep their homes clean and their hygiene up would all be factors making PD more difficult for many, especially if they don't have a dependable care partner.  My point in posting this was to relay the fact that dialysis is often too hard on the elderly, no matter which form they use, and may not buy them much more time.  Many choose to live out their last days without the hassle and discomfort of dialysis.  It's up to their loved ones and healthcare professionals, in that case, to support their decisions.

[beckums70]

I periodically scan over my statements from my PD clinic and get Medicare statements as well.  Clinics are most definitely NOT losing money by offering PD to their patients.  I'm not sure that in this case, corporate greed is a factor.  Clinics are paid a per diem rate on PD patients, so every time I do a treatment at home (which is 7 days a week) my clinic gets reimbursed about 400.00 from Medicare.  When I had private insurance they got more than that.  On top of that they get reimbursed for my monthly labs and clinic appointments and for any other service they provide to me, for instance my social worker making time for an unscheduled visit. 

I don't have secondary insurance anymore so my clinic writes off the remainder of what I owe them after Medicare pays their 80%.  This means that they lose quite a bit of money on treating me every year.  I don't get a lesser quality of care at all even though I can't pay what I owe them.