I just want it/he NEEDS it!

Discussions for Patients, Family, and Friends HD For Patients
1

Here is a story about a man who is choosing to discontinue dialysis because the center he goes to is closing it’s doors. Makes me wonder that if home hemo were available if he could’ve made the choice to live!

This article about a dying dialysis patient just SCREAMS home hemo…your thoughts?

http://leaderadvertiser.com/articles/2004/09/01/news/news02.txt

Elderly dialysis patient decides it’s easier to die
By Maggie Plummer
of the Leader

With the news that Polson’s dialysis center will be
closing its doors on Sept. 24, patient Jerry Paul of
Polson has decided to opt out of dialysis treatments.

That means he is choosing to die.

He’s not angry, he says.

He’s just plain worn out.

Moving to Missoula or Kalispell is out of the
question, and he is tired of commuting to Missoula for
treatments, like he did for nine months last year.

“It’s too rough, that traveling back and forth,” he
said at his home last Friday. “It’s no good. You’re
not back till 7 p.m. It was just killing me, so I
decided it would be easier to just give it up.”

That means he could die any time now.

His opting out of dialysis is not meant to be a big
show of protest against the recent St. Patrick
Hospital decision to close the Polson center, he said.

“It’s just my own choice,” he remarked in a low voice.

However, if the St. Pat’s Polson center had stayed
open, he would have continued his dialysis treatments,
he said.

According to dialysis nurses, it is always a patient’s
choice whether or not to undergo dialysis treatments.

Many folks have told Jerry and his family that,
presented with the same situation, they would probably
do the exact same thing he’s doing.

Currently Jerry is the only one opting out of the
treatments, but a second Polson patient said last
Friday that he may just decide to in late September,
when the local center closes.

On the day of our interview, Jerry felt tired but
“pretty fair,” he said.

He had already been off dialysis for a week.

He was relaxing in his recliner, his elderly poodle
Mickey by his side. He wants Mickey euthanized once
he’s gone.

Jerry’s last treatment was on Wednesday, Aug. 18.

Two days later he mowed his own lawn.

“He’s a determined man,” said his granddaughter, Tami
Degele.

The 84-year-old man has other medical problems,
including a pacemaker that keeps his heart beating and
macular degeneration that has left him legally blind.

About three years ago, Jerry’s kidneys quit working.
“We don’t know exactly why,” he said.

Born in 1920, he moved to Polson when he was nine
years old. “It was pretty quiet here then,” he
recalled. “There were wagon wheels and horses up and
down Main Street.”

Jerry’s adopted father used to run sheep down Main
Street when moving them from pasture to pasture. The
winter pasture in those days was what is now the old
part of Polson’s golf course.

He graduated from Polson High School in 1939 and has
lived in the same Polson home for 55 years.

He operated Wardrobe Cleaners in downtown Polson from
1946 until selling it in 1980.

All his life, he has enjoyed working with wood.

Jerry’s daughter, Sue Holmes, sids that she and the
rest of the family are not so much upset with St.
Patrick Hospital as they are with U.S. Congress for
“butting in” by creating new dialysis regulations that
are devastating for rural areas.

“They complicated the whole deal,” Holmes said. “They
pass regulations but don’t look at what it means for
rural areas.”

She explained that last January the federal
legislature passed a bill requiring kidney
specialists, called nephrologists, to visit dialysis
patients once a week in order for a facility to
receive full Medicare reimbursement.

“It’s complicated stuff,” Holmes commented.

The two nephrologists are in Missoula, she said, and
they have to cover all four of St. Patrick Hospital’s
dialysis centers - Polson, Hamilton, Butte and
Missoula.

“No way could those doctors cover all of that,” she
said. “What does Congress have to do with dialysis? If
they’re not going to research the repercussions of a
bill, they had better not pass it. They should keep
their noses out of it.”

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2

Lin, This is a sad story but what is even worse is no one who can will do anything about it. There is alot of talk in Washington about the cost of dialysis but how often do you hear them talk about the lives of patients on dialysis. I have seen 3 or 4 things proposed in Washington to cut the cost. I have never seen anything come from Washington to improve what is going on. I take that back the are doing the 5 year study then probably another 20 years to decide to do anything. My opinion only.

3

I wish someone had thought about the option of home dialysis and looked on Home Dialysis Central for home programs in MT. There are 6 clinics that offer some form of home dialysis – 6 offer PD and 3 offer some type of home HD. Although it would be inconvenient to go to training out of town, he got to Missoula before and it seems like if he’d known he could go there and get trained to do PD in a week or so, he might have considered that rather than choosing to die.

I also don’t believe the facts as presented to the patient and his family about the reason the clinic is closing. As far as I know there is no requirement that says for a dialysis clinic to remain open a physician has to see patients once a month. The ESRD Conditions for Coverage (regulations) as they are currently written do not require that any staff see any patient any set number of times a month. Although the regs list staff qualifications and roles, the regs say nothing about patient-staff ratios.

Physician reimbursement is separate from clinic reimbursement and paid by different arms of Medicare. Although both dialysis and physicians are covered under Medicare Part B, dialysis is paid by Medicare intermediaries just like hospitals while physician fees are paid by Medicare carriers.

Why did government step in? Reading horror stories from patients that seldom saw their doctors and multiple complaints about the care they received in dialysis clinics, our elected officials thought they were doing the right thing when they offered a financial incentive to nephrologists that saw their patients more. If a physician sees his/her dialysis patient once a month he/she gets a certain fee. If the physician sees the patient 2-3 times a month, he/she gets a higher fee that month. If the physician sees the patient 4 times a month, he/she gets the maximum fee. Doctors have said that they can’t see rural patients 4 times a month because they have to travel long distances to do this. The government said that they could use advance practice nurses to see patients for some visits as long as the nephrologist saw the patient at least once. The government is also looking at the possibility of reimbursing physicians for telemedicine (visiting with patients using high tech cameras and computers).

The General Accounting Office (GAO) has done several studies on dialysis.
– Here’s a study entitled Problems Remain in Ensuring Compliance with Medicare Quality Standards that was released in 2003. It was a pretty scathing indictment of clinics, Networks, and surveyors re: quality of care and patient satisfaction:
http://www.gao.gov/new.items/d0463.pdf
– A study entitled Medicare Dialysis Facilities: Beneficiary Access Stable and Problems in Payment System Being Addressed was released in 2004. I haven’t read this report, but find it interesting that access is not a problem reading stories like the one reported.

The Institute of Medicine issued a 426 page document in 1991 called Kidney Failure and the Federal Government. In it there were reports of patient focus groups that pretty well described what patients thought and wanted. Here’s one place where you can order it. It’s also available on Amazon.com. I don’t know if libraries would have it or not, but you might check.
http://www.nap.edu/catalog/1818.html

There are many more studies and so much concern about patient satisfaction that this is supposed to be addressed more in the new ESRD Conditions for Coverage that are supposed to be out in a few months. Also CMS has developed a patient satisfaction survey to help clinics assess this more consistently.

4

I wonder if the physician law is a state thing. I know that in our program the Nephrologist is required to see patients at least every 4 to 6 weeks. That’s the law. Unless it’s just different for home patients. Beth do you know if there is a difference between Federal Regulations and State Regulations?

5

Beth,
Thank you for questions you answered. Do you know if there is a Medicare regulation that requires a patient to get a physical from his nephrologist when he first changes to a new unit? Any requirements for further physicals, annually, or after a period of time?

Regarding the new regulations that you say are coming out in 3 months, have you and others been invited to preview same? Can patients preview?

6

Many states follow the federal regulations that govern dialysis facilities. Some states add additional requirements. To find out more about what your state requires in addition to what the federal regulations require, you might want to contact your ESRD Network. The Forum of ESRD Networks is a sponsor of Home Dialysis Central. There is a map with links to every Network’s website at http://www.esrdnetworks.org/.

You can find the federal regulations on the Home Dialysis Central website at (type exactly if this word wraps):
http://homedialysis.org/v1/resources/pdfs/42CFR405_Subpart_U_10-1-0_8.PDF

These regulations establish policies for patient care and planning for all Medicare certified dialysis and transplant programs in the US. All members of the team are supposed to do an assessment of every new patient. Typically, this means that a physician would want to do a physical on a new patient to be sure that he/she and the clinic can provide the care the patient needs. Clinics I’ve been affiliated with (hospital and free-standing, non-profit and for-profit) have all wanted to see home patients every 4-6 weeks, but I’ve not seen this requirement in the regulation.

By federal regulation, medically unstable patients must be assessed and the care plan reviewed by the team monthly every month. Medically stable patients must be re-assessed by the team and care plans must be reviewed at least every 6 months. Patients can and should participate in development of the long-term program (treatment options) and regular care planning. There is no difference in how in-center and home patients are to be treated under this regulation.

As far as I know, CMS has not shared the most recent draft of the Conditions for Coverage with anyone outside government. However, a number of organizations and individuals have communicated with those charged with drafting the regulations advocating for consideration of specific provisions. There is no guarantee that the regulations will be published in 3 months. They’ve been back and forth from CMS to the Office of Management and Budget several times.

By the way, your ESRD Network may be looking for Patient Advisory Committee representatives. These patients are liaisons between the Networks and the dialysis clinic. I don’t know how many PAC members are home dialysis patients, but believe that home patients have a definite viewpoint that needs to be shared.

7

At the first center I was in I never saw my neph. in house. I had to make an appt. and go to visit him, and after the initial first few months on dialsyis I was only required (by him) to see him every three months. Now the neph. visits me every week in the unit… I don’t think the regs. would be different from state to state as it’s fed. regs. that dicate most. Lin.

8

As I said before, doctors get paid now based on the number of times per month that they see a patient. Whereas in the past, patients may have seen their physician once a month or less, it’s possible they see their physician more. [Although one doctor I spoke with recently said that the extra amount Medicare pays for 4 visits over 2-3 is insignificant to him.] The question is whether the patient finds the “physician visit” valuable and whether seeing a doctor more helps patients do better. Only time will tell.

I don’t think it matters whether the physician sees the patient in the clinic or the office. However, it’s certainly more time efficient for a physician to make rounds in a clinic and chart that he/she has seen all the patients there. If the doctor plans it right, he/she could see patients coming off and going on in the same span of time and cover all their patients in two part days a week.

I believe a patient is likely to get a more valuable physician visit in the doctor’s office where there is time set aside to ask questions/get answers, have an actual exam, and be able to talk with the doctor in privacy – something that’s sorely missing in any dialysis clinic I’ve worked in. When patients I worked with complained that they hadn’t seen their doctor in weeks (or months), I strongly encouraged them to set up an appointment at the doctor’s office. As long as the appointment was about their kidney condition, the visit be covered under the monthly physician charge.

Finally, I don’t think it’s a bad thing for nephrologists to hire nurse practitioners to fill in for some of the weekly doctor visits. Nurse practitioners may have better interpersonal communication (including listening) skills than some doctors, they can adjust medications as needed, and they can report what is needed to help the patient to the doctor and the clinic nurses.

9

Lin I’ve been thinking about this and at the same time the issue of providing dialysis in a nursing home. What I wonder is would it be a good idea for a home dialysis machine/set-up to serve more than one person? Rather than needing a whole full-blown dialysis unit to serve a small number of people what if you allowed a home dialysis setup to serve four people?

So instead of an industrial sized RO each machine would have a small RO. And rather than staff there would be helpers. In a nursing home it could mean that two or three people would not need to be transported to a unit for treatments, an expensive and for the patient an unpleasent process. In the situation in Montana it could mean that you could setup “super home units” that would serve people in rural communitties.

On the one hand I can see how a system like this could be abused but given the alternatives the State should be willing to try anything. When the alternative is certain death the rules should be very bendable. I think this situation calls for a solution beyond the normal home hemo.

10

Bill, I just read your post and think that is an excellent idea. Living in a Rural Community with 2 very small dialysis centers there are times when patients have had to travel over 2 hrs because the units were full. I can see where your idea would be a great benefit in an area like ours. Our local hospital has a 3rd floor completely empty I wonder why they couldn’t see something of this nature up there. Maybe because they wouldn’t make any money.

11

Great idea, and I too often wonder why dialysis isn’t being done in nursing homes and assisted living centers too. I listen too and watch the patients coming into tx., see their condition, and hear their complaints about the long waits for transportation, bumpy rides not feeling well ect… Too, where I live it’s hot in the Summer and often brutally cold in the Winter, too many temperature extremes for our often sick and frail population to be transported, and yet they are. The local nursing home is making money on these people because they have their own ambulance service that charges! Often wondered if these people wouldn’t be better off dialyzed at the nursing home. The AKSYS machine or others like it sound perfect for such a use. Lin.

12

Offering dialysis in nursing homes (NHs) does save residents the stress and time to travel to facilities. When Medicare is paying for ambulance transportation, it also saves money. I’m not sure how many NHs offer home dialysis in their settings, but it is being done.

NHs can contract with dialysis clinics or Method II supply companies to provide dialysis at their site to their residents. Under Method I, the dialysis clinic would provide the dialysis and support services and bill Medicare. Under Method II, the supply company bills Medicare for the dialysis and the dialysis clinic sees the NH resident regularly for clinic visits just like it follows other home patients.

Since the goal is that NH residents receive high quality care, here are two memos from Medicare to state survey agencies to make sure they understand the rules and survey appropriately.

13

Thanks for the info Beth. I think it is important to be proactive when it comes to vulnerable nursing home populations. Beth what are your thoughts in regard to allowing patients in rural communities the option to set up home hemodialysis cooperatives? Using the Montana situation as an example, already there seems to be a degree of cooperation among the individuals and families involved – they take turns driving for example – and I would guess that most rural communities would be willing to support their neighbors. I think the State of Montana and CMS should step aside in some instances - when the alternative is no treatment or when the nearest center is a certain distance away - and from what’s been reported this is one of those times.

As Marty says most communities have some unused space, should Marty’s community be allowed to set up a home hemodialysis cooperative on the unused third floor?

Lin – since the Aksys reuses it’s blood tubing and needs a day to get ready for treatments it’s one person per machine, which could work in some situations. A standard machine on the other hand could be used by more than one patient, which would be more efficient/cost effective.

14

I am always concerned about rural patients and where and how they get dialysis treatment. I believe whenever possible, they should be educated about home dialysis options (PD or HD). I’m sure this doesn’t happen often enough. Training needs to be scheduled for the convenience of the patient and his/her home dialysis partner (if needed), not at the convenience of the staff or clinic. Patients need to know that once trained, they wouldn’t have to drive anywhere to get treatment and would only have to go to a clinic appointment every month or so.

I do not want to lower standards for rural patients because I think rural patients deserve 1st rate care. Therefore, I don’t think Medicare should loosen standards for rural settings. Rural clinics should have to meet the same staffing requirements, the same water quality requirements, the same requirements so far as patient rights and responsibilities, etc. Instead of lowering standards for rural clinics, I think we need to think “outside the box.”

You mention a home dialysis cooperative. Before I comment specifically on this, I’d need to know more about what a home dialysis cooperative would “look” like. However, in the case of the hospital that has an empty floor, wouldn’t it be interesting to use the space to set up a regional training site to teach patients from throughout the area how to do home dialysis – either PD or home hemo?
– The regional training program could hire experienced training nurses that knew how to operate multiple machines to run the program;
– The regional training program could train patients on the type of machine their doctors requested and that patients would use at home.
– Home patients could be Method II and supply companies would deliver machines and supplies and bill Medicare for them.
– The regional training site or the closest dialysis clinic could provide support services for the patient and bill Medicare for this.
– Physicians that followed the home patients could see patients in their office or in a monthly clinic and bill Medicare the physicians fee.
– The regional training program could set up patients needing in-center backup with the closest dialysis clinic for transient dialysis.
[Thinking about this, maybe WellBound (one of the sponsors of Home Dialysis Central) could help set up such a regional training program in cooperation with the hospital and area nephrologist(s).]

Having a regional training center could serve two purposes:

  1. it would offer patients in that area the option to do home dialysis and
  2. it would take the pressure off clinics that might not want to set up their own home program, but would be willing to support trained patients.

How do you think this would work?

FYI – We have information for professionals that tells them what is needed to set up a home training program.

15

Beth, I don’t think this would work as so much responsibility and accountability is going back to the center if they were to undertake it all they may as well have their own program which they don’t want to seem to get into. I can tell you in our rural community older patients are discouraged by doctors to even start dialysis. The drive is 45 minutes and most need to be driven because they are weak. The spouses who are in good health and elderly really have a hard time in the winter. I can name 2 specific cases where the driving responsiblility took it’s toll on the partners. They really burnt-out. If you have to drive 45 minutes you also have to wait during the treatment because it’s to far to drive home them turn around and drive back.
Not to mention the fender benders on slippery roads and the deer hits. I can also tell you of 2 specific cases of younger patients who obviously didn’t feel well enough after dialysis to make a long drive so their spouses ended up with the responsibility. Both spouses who happened to be female were very depressed. Not only were the husbands not feeling well enough but they had to quit their employment to be available.
Another aspect of Rural Living is there is no public transportation so to speak. You can hire a cab but that is very very expensive when you are going that far and have to pay them to wait. All though I agree rural patients “should” have the same standards, I don’t know if it is realistic. What is worse lower the bar so homehemo can be an option or have the doctors telling them it, it probably isn’t worth starting dialysis in the first place. I also know 1st hand of a daughter who lived in one of the closer cities 2 hrs. away actually moved her parents just because both dialysis centers in our area were full.
A couple of years ago in our area they did a pilot study with senior citizens where they got a county nurse to check on them once a month, a social worker and a $200.00 month voucher. The purpose was to see if their quality of life would improve and with the voucher if more would remain in the home and not nursing homes. The theory being if they needed help from a family member, that member could use the money to buy wheelchairs etc. or hire someone for a break. It just happened the nurse working in the program was my neighbor. When she got out into the community she met patients who were going to have to go on dialysis. She was shocked to find out these patients weren’t told anything about home dialysis. She was even more shocked when she told the primary care physicians in our area that I was doing dialysis at home and they told her she was wrong because it COULDN’T be done.
If some how we can’t get away from the power of doing home hemo depending on the centers; I doubt these problems will ever be corrected. I truly would like to understand how George Harper set himself up so he could break the dependence of the center dictating the rules. If I ever had to; I would go this route before I would take dad back in-center and watch him give up.

Obviously I have been doing dad’s dialysis a few years and I couldn’t get a center here to back me even if I agreed to pay for our current center to monitor us and to pay to have my equipment kept up by the people already doing it. Does this make any sense to you? Money wouldn’t be their issue and neither would training. It’s just because the center says NO.
There has to be away for patients to get home hemo without having to be so dependent on the centers or it just isn’t going to happen.

16

You don’t suppose we could get George Harper to explain how it worked when he became his own Medicare provider do you. Was he then able to order his own machine, did his nephrologist have to write the prescription first. how did he provide for maintenance on the machine, did he go direct to the companies to order his own supplies? At this point did he have a nurse or someone at the center backing his home dialysis or just a nephrologist who could get him into a center if need be? I don’t suppose its a good idea for patients to start going this route but … what would you do to preserve your quality of life and your family and what safety net would you give up to do so?

17

When we started the program we had to have a nephrologist in our area because we were so far away from the nocturnal’s nephrologist. The nephrologist we had in-center was going to keep dad as a patient. But the center told him he couldn’t. The center wouldn’t back him if he did this. It’s just my opinion but I don’t think they wanted other patients getting any ideas about wanting to do their own home hemo dialysis. Patients are at the mercy of the centers and what they choose to offer and this rock isn’t budging so we need to find away around it. My opinion only. I think Bill’s idea of a co-op. could be a start. Homebound is a great idea talk to them about starting a division in our area. I’ll work for free.

18

Beth I am very interested in your opinion of some scenarios, each one takes it a little farther so I’m sure one will cross the line. Let’s imagine that six of the Polsun patients form the Polsun Dialysis Cooperative (PDC). They are given a storefront in town by the owner or the city, and free utilities (including cable and internet). The member’s families and their neighbors clean the place up while all six PDC members and their designated helpers move to Seattle for four to six weeks of home hemodialysis training.

Scenario one:
They are all trained on the Aksys PHD. Once they are finished training their Seattle Provider co-locates all six PHDs, chairs and supplies into the co-op’s club house. All members can dialyze at any time so long as their helper is present or another member’s helper. Members dialyze at all different times but in general choose to treat at the same time (or a half hour plus or minus) on a five to seven day a week schedule. There are any number of helpers present but at least one person who is not on dialysis.

Scenario two:
They are trained on the B Braun Dialog to do more frequent dialysis. Once they are finished their Provider co-locates all six B Brauns, six small individual ROs, chairs and supplies into the PDC club house. All members can dialyze at any time so long as their helper is present or another member’s helper. Members dialyze at all different times but in general choose to treat at the same time (or a half hour plus or minus) on a five to seven day a week schedule. There are any number of helpers present but always some minimum - 1 helper to 2 patients for instance The helper(s) is present during the treatment and sets up the machine.

Scenario three:
They are trained on the B Braun Dialog to do three day a week dialysis. Once they are finished their Provider co-locates three B Brauns, three individual ROs, chairs and supplies into the PDC club house. Members switch off dialyzing a half hour apart (or whatever works out) on either a M-W-F or T-Th-S schedule. Only one of the helpers is present during the treatment. The Provider pays a stipend of $40 per treatment the helper on duty works about 6 hours and pockets $120.

So for under all three hypotheticals lets assume that half the patients are self-cannulaters, and lets assume that while they were in Seattle all six helpers learned to cannulate. Lets also assume that they are all stable enough to meet the Provider’s home patient standards but lets also acknowledge that people’s stability ebbs and flows.

Okay let me say - I’m for all three. In fact I am not sure that this is something only people in rural areas would be interested in doing. Thoughts?

19

Marty, Same scenario where I live, which is rural area. Was traveling 45mins to 1 hr. to neighboring county for dialysis becasue there was no unit in the county I live in. Luckily I am still able to drive myself or don’t know what I would do. As I age things could change and is yet another reason to get on home hemo. Lin.

20

Sorry it took me a while to respond to Marty’s question about George Harper. I found a couple of lengthy but interesting articles about George Harper. The first describes the ups and downs of RV travel with a hemodialysis machine (pictures included). The second describes why and how he set up his own supply (durable medical equipment) company to become a Medicare Method II provider. It was not an easy task and he had many frustrating moments along the way – mostly from the corporation he was trying to work with. I’m not sure that everyone would have the energy to keep fighting like he did, but I’m in awe of all he did.

http://www.cc.utah.edu/~cla6202/GeoH.htm

http://www.globaldialysis.com/georgeharper.asp