Barriers to home dialysis

Discussions for Patients, Family, and Friends HD For Patients
41

Hi Folks

What is the best way to get to the meat of the subject to the links from cms ? The problem I had is the way all these groups write things up. In talking with my soc worker the one thing we both agreed on is that they do this way to keep everyone guessing at what is is?

Ive been going over the links that Beth and Plugger posted and I’m still guessing at who will enforce and how they read the new guides lines? and what happens to dialysis providers and dialysis consumers? And who will stand and defend the consumer? The provider has lawyers .

You know that when a person wants to buy a house the advice they get is have a lawyer look the contract over , but in today’s medical world , the medical world have the lawyers but the person dealing with all the paper work that they must sign, they have no one (not connected with provider) that can advise them of what they are signing .

bob obrien

42

Hi Bobeleanor,

I think that until the interpretive guidelines are released, we are ALL in the dark about how exactly the new regulations will be interpreted.

43

Hi Folks

Hey Dori

Will the interpretive guidelines be so written that a lay person can clearly understands. The rules we live by now in dialysis lets each center go how each reads the rules. So in a good center you will have Drs., Nurses , Soc. worker, techs, each working towards getting all the information to the consumer. While other centers want the consumer to come in and shut up and ask no questions.

When will the interpretive guidelines be out there?

thanks
bob obrien

44

[QUOTE=Dori Schatell;16236]Hi Bobeleanor,

I think that until the interpretive guidelines are released, we are ALL in the dark about how exactly the new regulations will be interpreted.[/QUOTE]

Ever learning, what does your statement mean?..how many ways can regulations be interpreted??

45

[QUOTE=bobeleanor;16238]Hi Folks

Hey Dori

Will the interpretive guidelines be so written that a lay person can clearly understands. The rules we live by now in dialysis lets each center go how each reads the rules. So in a good center you will have Drs., Nurses , Soc. worker, techs, each working towards getting all the information to the consumer. While other centers want the consumer to come in and shut up and ask no questions.

When will the interpretive guidelines be out there?

thanks
bob obrien[/QUOTE]

Bob, your previous post and this post express my sentiments exactly! You can have all the regulations in the universe, but if there is no fair system of patient representation or enforcement of regs, it is a farce!! The obvious problem is, where is the level playing field that supports and protects patients’ rights as much as those of the providers?

46

The Centers for Medicare & Medicaid Services (CMS) is writing the interpretive guidelines as we speak. They are being written by experienced CMS staff members and experienced state surveyors some of whom have worked in dialysis. Once they’re completed, they will need to be approved by a CMS attorney before they are published. When they are published I will post a link to them.

You asked whether they will be understandable to patients. There are 18 topic areas, some of which are more technical (infection control, water and dialysate quality, reuse of hemodialyzers and bloodlines, etc.) and some are less technical and probably easier to understand (patients’ rights, assessment, plan of care, care at home, personnel qualifications, responsibilities of the medical director, governance, etc.). I suspect some sections will be short and others will be long.

I don’t know at what reading level this document will be written, but it is being written so state surveyors who work in Medicare contracted State Agencies (typically nurses, but occasionally dietitians or social workers who work for the department of health) can know when to cite a Standard level (less serious), Condition level (serious), or Immediate Jeopardy (most serious) deficiency. These agencies survey:

  1. New dialysis clinics that want to be certified to offer dialysis,
  2. Dialysis clinics that are “bad performers” according to key data on patient outcomes;
  3. Dialysis clinics that state agencies get complaints about; and
  4. Dialysis clinics that are due for routine surveys that are done on average every 3 years.

In addition to the interpretive guidelines, CMS conducts several trainings with surveyors in locations around the country. The first trainings will be conducted in September before the regulations take effect October 14. They’ll be conducted on an almost monthly basis for several months to hopefully reach those surveyors who survey dialysis facilities (one surveyor may survey several different provider types).

My suggestions for anyone who has a concern about the quality of care that he/she is receiving at a dialysis clinic or how he/she is treated:

  1. Express your concern through the chain of command in the clinic and give the clinic/corporation a chance to resolve the problem–dialysis clinics should provide patients with information on their grievance process now, but will be required to POST patients’ rights starting October 14, 2008;
  2. Contact the patient services representative at your ESRD Network (http://www.esrdncc.org has a map with links to Networks). Starting October 14, this information should be POSTED in a public area of your clinic.
  3. Call the surveyors (see http://www.medicare.gov/contacts and click on “organization,” in the field, use the down arrow to search for ESRD State Survey Agency…ESRD Networks are here too), and enter your state. You will get the contact information. Starting October 14, this information should be POSTED in a public area of your clinic.

Patients (or staff) can report problems to the Network or ESRD State Survey Agency anonymously, however giving your name and contact information allows them to get back in touch with you if they need further information. If you are concerned about retribution (I’ve heard patients express this concern), ask if they will keep the name of the person making the complaint confidential.

  1. Contact your federal elected officials by email, phone, or letter. Ask him/her/them to allocate more money to Medicare for survey and certification of dialysis facilities and require that the funds be used by ESRD State Survey Agencies to survey dialysis facilities more frequently. It’s my understanding that skilled nursing homes and home health agencies are surveyed annually or more often as needed. I don’t think it would hurt for dialysis facilities to be surveyed as often considering how much Medicare spends on treating dialysis patients, much of which is spent for hospital stays and drugs.

From the professionals I’ve spoken with who work in clinics and dialysis and manufacturing companies that sell products to dialysis facilities, the perception is that the regulations are good, are stricter, and enforcement of them will improve care. However, money has to be available for enforcement so that clinics other than the known bad performers are surveyed more frequently to pick up those faciltiies that may have OK data, but still provide substandard care and/or treat patients disrespectfully or scare them into passivity.

47

Beth wrote:
“Patients (or staff) can report problems to the Network or ESRD State Survey Agency anonymously, however giving your name and contact information allows them to get back in touch with you if they need further information. If you are concerned about retribution (I’ve heard patients express this concern), ask if they will keep the name of the person making the complaint confidential.”

Beth,
You say to ask if the Network will keep the patient’s name confidential. Do you know if this a requirement that they must do so? I know of numerous patients who called their network asking to be kept confidential and they were told they needed their name and clinic info or they could not mediate for them. Also, do you know if the networks can record calls from patients? This is another concern I have heard expressed.

I’ve said it before and I’ll say it again- patients have confided in me their clinic issues and literally pleaded with me not to break their confidence as they were so afraid ( terrified is a better word) that dialysis staff would harass/abuse them, deprive them of care or even harm them by putting something in their lines. Their biggest fear is that they will be kicked out of the clinic altogether with nowhere to get their life-support treatments.

Because so many patients get only barely adequate 3x txs and are unemployed, they don’t have the energy or the resources to wage a legal fight should they be tossed out. There may be a very minute percentage of patients who are not troubled by these possibilities, but it is an unspoken assumption, a known question mark in the mind of almost every dialysis patient, that daring to question could get them “dumped”.

Dialysis patients are so beholden to their families who struggle alongside them to keep them alive- they don’t want to do anything that would cause their loved ones more stress and grief. They do not trust the system as there have been no safeguards to protect their rights. Word gets around about how certain networks and state agencies are corrupt and patients don’t know if they can trust their network to protect their rights or not. This is the way its been for years. Patients know how it works and staff do, too, - there’s a “don’t talk” rule.

If patients and staff could report grievances without retribution, the dialysis industry would be changed overnight. If they could anonymously report and be told to check back with the surveyors on such and such date for an update and/or to provide further information for the surveryors’ investigations, the industry could be cleaned up. Better than that, patients and staff should be able to present their grievances totally free of retribution.

This medical situation has been like a hostage situation for many long years. It’s never been right and never will be. Anyone with any common sense can see this has been a flawed system with an imbalance of power. When I picture the many faces of dialysis patients- every race, every color, young, old, educated, uneducated, you name it,- it is a travesty that a vulnerable population should have to suffer above and beyond the demands of their chronic illness at the hands of unscrupulous providers. I never forget those faces- they’ll be with me always. I guess I’ll be trying to clean up the system to my dying breath. I’m proud of the other advocates out there who have also dedicated themselves to this cause- they know who they are.

48

I have been performing nocturnal home hemodialysis treatments four nights per week for three years. As one of only three people within my dialysis center afforded the opportunity, I consider myself fortunate, and I am reluctant to complain. The treament modality has without a doubt saved my life. Therein lies the rub. The biggest problem I have encountered is the burden that falls on caregiver households. The cost of energy, water and all the intangibles provided by your spouse, your family and/or your friends to enable home treatment is not really discussed in the NHD training. I wonder if this is a concern for others.

49

Unregistered, I absolutely agree that these things should be made clear up front so you know what to expect. But I think a few things are important to note:

1). If you were doing treatments in-center, you would have the cost of gasoline to get to and from the clinic three times a week, which–especially today–probably more than offsets the cost of water and electricity at home. No-one pays for folks to get to the dialysis center.

2). When we’re making it clear what the burdens of nocturnal HD are, we also need to make it clear that standard in-center HD has huge burdens that are most often ignored. These include a strict diet and fluid limits, having to take many more meds ($$$), the difficulty of arranging travel, having other people in the center die around you, never knowing how you’ll feel from one day to the next so it’s hard to plan even a night out, not being able to do chores at home–so they fall to your family to do… And this is without even mentioning (well, okay, now I’m mentioning it) that the treatment itself is the least like how the body works and the most likely to cause troublesome symptoms, hospital stays, and early death.

3). The “burdens” on a care partner depend entirely on how much work the dialyzor is willing to do for him or herself. Some folks do everything themselves, so their partners are only burdened to the extent that they need to be there during a treatment. Other dialyzors are not able to do anything. This puts more of a burden on the care partner, but this still has to be compared to the burden of getting someone who needs 100% care to and from a center three times a week.

50

Our utility company (Pacific Gas & Electric) offers reduced billing for home dialysis for electric and gas. They do this by increasing the base quantity for which they charge their lowest rate. While utility companies policies undoubtedly vary, many home dialyzors may find it useful to call their utility company.

I agree whole heartedly with “Unregistered.” Nocturnal dialysis is far superior to any other available alternative and has been life-saving for my 79 year old wife, Jane.

Mel

51

Just thought I would stop by and say hello. Thought I would mention it is a good time to get involved with the elections and make some of our politicians aware of what is happening in this field of medicine. I’m trying to do what I can to make sure my state reps stay in office - they were great in getting a bill for certification of dialysis techs through! Hope I will be able to revisit how they might help with home dialysis after the election.

52

Hi Folks

Hi Plugger, good to hear from you.

I’ve taken your way and I’ve contact my state rep in Harrisburg PA… After the post of Rich and my own time in dialysis I think the only way to try and get change is on state level. I’ve talked to my guy and his only understanding of dialysis is from yrs. ago I sent him a letter and a picture of the nxstage and pureflow. I talked in the letter of the changes in dialysis since the 90’s. I can’t say if he will take up my issues and help me understand how things work in PA. But this must be fought on every level, that each person thinks is best

best to you
bob obrien

53

Good for you! Folks, you can also volunteer for just about any national or state race right now, even if you just have an hour or two free. Just stop by campaign headquarters, and they will put you to work. Or, put your zip code into our Media Guide to pull up national and local media contacts so you can easily write letters to the editor: http://capwiz.com/meiresearch/dbq/media/.

54

Great to hear Bob! Excellent advice Dori, not much changes if people don’t get involved. As my State Senator put it, if all the politicians hear from are special interests, all we will get is legislation for the special interests. I’m going to love to see what the feds do on October 14th, I have heard some worry though if things aren’t enforced.