Other health conditions

Hi Folks

What other chronic health conditions are people asked to check in on monthly trip and due there own blood work and track they own #'s.? Where the company has the power over you, to end your tx, if you do not comply?

Marty, It sounds like your trip to the center is a smooth ride? My doctor is west of me by 25 miles, my center is 50 miles east of me. The doctor I see on the last Tuesday of each month where we go over the lab report and talk on any issues. Then on the last Wednesday I go to the center where the soc worker might be there? But I must talk to nurse who likes to change things the doctor and I talked on, then I have to talk to dietician on guess what ?phosphorus, and what foods contain high phosphorus. This after hearing the same thing for the last 10 months. I guess that after 10 months of the same, the folks think I’m bit slow, and need to be told each and every time the things, till if I make it 10 years on dialysis it might sink in .
bobeleanor :smiley:

Bobeleanor, Our center is outstanding when it comes to working with patients. When we have a clinic visit the nurse and nephrologist are in the room at the same time with us. Therefore everyone knows what the nephrologist orders, everyone has a chance to question what he says,
and a resolution with all parties is agreed upon before anyone leaves.
I used to be enthusiastic about encouraging patient to travel to get into home programs; I cut way back on that since I realized not all home programs were run like ours and 1 clinic visit a month after training wasn’t always the truth.

In all 3 clinics I worked in from 1978-1996, doctors participated in clinic visits with the nurse, dietitian, and social worker. When we had 3 doctors at my last clinic we had 3 separate afternoons for clinic visits – one for each doctor’s patients and the dietitian and social worker were expected to attend in addition to the home training nurse and doctor. We held care planning conferences each clinic day.

It sounds like your doctor doesn’t go to the clinic for clinic visits. If he did, he could examine and talk individually with several home patients the same day. Does your clinic have team care plan conferences where all members of the team share their input and do they invite you to attend? OR do they share with you the plans the team developed to get your feedback? OR do they ask you sign a form that says what the team decided to do? The best way is for patients to attend team care planning meetings, but this isn’t always possible for a variety of reasons but patients should have as much input as desired into the plan of care.

Hi Folks

Beth, I was just wanted to know outside of cancer. What health conditions would have people do all the things that dialysis people do at home and still have us go to center. If you are in center the person just has to show up 3x a weeks for 4 hours. No flow sheets no blood draw. And you wonder why more people do not do home???:roll:

All the work that one has to do on his or her own and on top of that going to the center 1 or 2 times a month. Just to hear the same lab report from 3 people. You know I can understand the doctor or center wanting to see you if they saw something in lab report or flow sheet and a phone call was not good.

My mother has a pacemaker and alz. And she is not asked to see the doctor or a nurse on a monthly . We just have to get a phone call once a month to check her pacemaker. This takes all of 4 minutes and they calls us only once a month.
bobeleanor :smiley:

Bobeleanor, I think the Nephrologist needs to see the patient so even if the labs look good he can sometimes tell by looking at a patient something else is going on. Had it not been for a nephrologist visit I wouldn’t have caught dad’s skin cancer. He noticed it and set us up with a visit with the dermatologist.
There are definitely ways to make home hemo dialysis more convenient for the patients and to elmininate unnecessary runs back and forth but I don’t think this is something a patient has any control over. It is a given patients have been dumped from in-center treatments for non-compliance or whatever and this appears to be legal as I haven’t heard of center being forced into letting the patient return. It is more than likely legal for a center to set up the policy the way they see fit to do business unless it does harm to the patient. I would consult with an attorney in the medical field. If I remember correctly George Harper traveled with his Fresenius Machine in a motor home. His center was bought out and he was then told he could no longer travel with the machine in his motor home.
He went to great lengths with lawyers and doctors to keep his right to travel. The company didn’t budge and in the end to solve the problem he became is own durable medical supplier. I think and this is a big think not an I know. But I think this gave him the legal option of getting a dialysis machine and supplies and billing medicare for his treatments. Rather or not this cut his ties completely with a clinic I don’t know but my guess would be it did. I think someone could make big bucks, if they wrote a step by step book on how to become your own dialysis providor.

Hi Marty

I understand the doctor thing ,which is what I want. And I read the trouble that man had and what he had to go to get what he wanted.

On a center or company ending a person dialysis , I hope that the company will not have that much power over a person life, that if the person life depends on if he/she gets along with each person in the center. I would think that a dialysis company would need to have real reasons to end a person life. Think about it, if you give one center or company a real reason to end your tx, then where would said person go to get dialysis? I think that the center or company would have to prove beyond any reason that said person is unfit for a reason. The rules that the ESRD have set say as much say so. And that a board made up of a doctor ,a pt, a person from the person network, would have the company person and the said pt come before them and tell the company side and the pt. side. What do you Think?
bobeleanor :smiley:

I don’t think the company looks at it as ending a persons life. In the cases I heard about where patients were let go they either had to find another center or go to the hospital. I do believe non-compliance to policies can be used as a reason to dump a patient. On the professional board wasn’t that was the nurse was talking about…don’t comply and 3 strikes and your out. I think they could definitely get away with it. Our center has a lot of patients who travel a distance to get there so I think they set up with this in mind. I think other home programs thought more of just patients close to them and didn’t take into account patients would be traveling a distance to get into the programs. We just need more programs to get started so there isn’t the need to travel such distances to get into a home program.

I believe George Harper became a Method II supply company to provide his own machine and supplies. This meant he had to get a Medicare provider number. He had to contract with the companies that made the machine and various supplies needed for home hemo. As a Method II provider, he also had to have a contract with a dialysis provider for the support services as described in the Medicare manual at http://www.cms.hhs.gov/manuals/Downloads/bp102c11.pdf which include:

• Periodic monitoring of the patient’s home adaptation (including visits to the home in accordance with a written plan prepared and periodically reviewed by a team that includes the patient’s physician and other professionals familiar with the patient’s condition);
• Emergency visits by qualified ESRD facility personnel;
• Maintaining a record keeping system that assures continuity of care;
• Maintaining and submitting all required documentation to the ESRD network;
• ESRD related laboratory tests included in the composite rate or in the Method II payment cap (See list in §30.2.1 and §70.2.A);
• Testing and appropriate treatment of water; and
• Monitoring the functioning of the dialysis equipment.
Some covered support services may involve indirect patient contact. The patient, for example, may need to consult with a nurse regarding dietary restrictions or with a social worker if the patient is having problems adjusting.

The ESRD Conditions for Coverage (federal regulations) state this about home support services:
to diets.
i Standard: Self-dialysis support services.
The renal dialysis facility or center furnishing self-dialysis training upon completion of the patient’s training, furnishes (either directly, under agreement or by arrangement with another ESRD facility) the following services:
(1) Surveillance of the patient’s home adaptation, including provisions for visits to the home or the facility;
(2) Consultation for the patient with a qualified social worker and a qualified dietitian;
(3) A recordkeeping system which assures continuity of care;
(4) Installation and maintenance of equipment;
(5) Testing and appropriate treatment of the water; and
(6) Ordering of supplies on an ongoing basis.[/i]

I think it would be terrific if clinics that did training made arrangements for home patients who live long distances from their clinic to see the doctor and other team members at a nearby clinic. In fact, I was talking with dialysis staff at a meeting at my local NKF about distance to the home clinic being a barrier to home dialysis for people living in western KS who have to drive to Wichita (south central KS), Kansas City (eastern KS), or to one of the border states to get training and support. Doctors already travel to these outlying clinics to see their patients. I suspect it has to do with their Medicare certification and who would get paid for the visit – the home training program or the clinic where patients were seen. This is something I’ll try to follow up on and will post what I learn.

Speaking of patient discharge, the Conditions of Coverage also have regulations on when a patient can be discharged:
i Are transferred or discharged only for medical reasons or for the patient’s welfare or that of other patients, or for nonpayment of fees (except as prohibited by title XVIII of the Social Security Act), and are given advance notice to ensure orderly transfer or discharge.[/i]

Patients are discharged from dialysis clinics for “noncompliance.” Some patients are blackballed by a dialysis corporation so none of their clinics will accept a patient. This leaves some patients getting dialysis through the emergency room if there are no clinics in their area other than the corporation’s.

To try to help clinics resolve problems related to conflicts between staff and patients, the ESRD Networks developed a manual and toolkit. The American Association of Kidney Patients was represented. I think it would have been better if there had been a larger patient voice on this workgroup, but no one asked me.
http://www.esrdnetworks.org/dpc.htm

Beth wrote:

The best way is for patients to attend team care planning meetings, but this isn’t always possible for a variety of reasons but patients should have as much input as desired into the plan of care.

This is what I was discussing in another thread before I read this one. What are the reasons?

See the other thread. I would like to propose that we no longer post on this thread and post to the other one which has a very similar topic.

Hi Anonymous
I just love anonymous people posts. So you think that a company that is payed to provide life saving health care also should made the decision on if the consumer should stay or go? Do you think that it should be base on too high a # on blood draw, if you have a # that is to high three times out you go ? How about fluid gain, centers want no more 1.5k between tx, If you come in 2k on three times out you go? We must set a limit ok?

How many chances do the people who work in the medical before they are out? If a doctor takes off the wrong limb I guess a fine is ok, no out of work ,no jail time. Same for a nurse who gives the wrong meds, oh well misstakes do happen. Nurses and doctors are only human. The ESRD is a joke, i have black and white proof on this, which might( more than likely) will come out later, not on this board.

Maybe consumers should commit a crime at least then they get a lawyer and judge and jury of peers. In dialysis no lawyer no judge just a manage or head nurse says your out.

Beth, my question which you did not answer what other chronic illness has the consumers doing as much and if the consumer mess up three times and out you go? I know in my case I would have been dead by 23. Those that work in the medical who think that if a person screws up # of times and out they go, maybe the person who feels this way should think of another line of work.
bobeleanor

Hi y’all,

[QUOTE=bobeleanor;10968]Hi Anonymous
Beth, my question which you did not answer what other chronic illness has the consumers doing as much and if the consumer mess up three times and out you go? I know in my case I would have been dead by 23. Those that work in the medical who think that if a person screws up # of times and out they go, maybe the person who feels this way should think of another line of work. bobeleanor[/QUOTE]

Bobleleanor, I’m not Beth, but perhaps I’ll do. :slight_smile: I agree with you completely. The only other aspect of care I can think of where patients MUST “comply” (NOT my word) or face punishment is treatment for resistant tuberculosis. Sometimes patients are put in isolation or supervised to be sure they are taking their meds because they could harm others if they are contagious. Nothing else comes readily to mind.

IMHO, in-center dialysis = outpatient institutionalization. The center is an institution, much like a nursing home, hospital, mental health facility, etc. Power is concentrated in the hands of professionals, and patients are largely powerless–unless they learn a LOT and gain the respect of their care providers.

I’m not surprised to hear that you have saved your own life, probably more than once. People are human, mistakes DO happen, and if you don’t know enough to correct them, they can, on occasion, be fatal. Knowledge truly is power.

Beth did answer your question in dialysis, though, when she said:

Speaking of patient discharge, the Conditions of Coverage also have regulations on when a patient can be discharged:
(2) Are transferred or discharged only for medical reasons or for the patient’s welfare or that of other patients, or for nonpayment of fees (except as prohibited by title XVIII of the Social Security Act), and are given advance notice to ensure orderly transfer or discharge.

Patients are discharged from dialysis clinics for “noncompliance.” Some patients are blackballed by a dialysis corporation so none of their clinics will accept a patient. This leaves some patients getting dialysis through the emergency room if there are no clinics in their area other than the corporation’s.

To try to help clinics resolve problems related to conflicts between staff and patients, the ESRD Networks developed a manual and toolkit. The American Association of Kidney Patients was represented. I think it would have been better if there had been a larger patient voice on this workgroup, but no one asked me. http://www.esrdnetworks.org/dpc.htm
.
Centers are not allowed to discharge patients for “non-compliance”–most of which, I’d wager, is caused by poor education so folks don’t know why it’s in their own best interests to get their full treatments or not be fluid overloaded. And, some “non-compliance” is no doubt caused by patient-provider conflicts that make people unwilling to go to the center.

Your anger is understandable, but anger is FUEL. The question is, can you find a way to use it productively to help change things for the better?

[QUOTE=Dori Schatell;10971]Hi y’all,

Bobleleanor, I’m not Beth, but perhaps I’ll do. :slight_smile: I agree with you completely. The only other aspect of care I can think of where patients MUST “comply” (NOT my word) or face punishment is treatment for resistant tuberculosis. Sometimes patients are put in isolation or supervised to be sure they are taking their meds because they could harm others if they are contagious. Nothing else comes readily to mind.

IMHO, in-center dialysis = outpatient institutionalization. The center is an institution, much like a nursing home, hospital, mental health facility, etc. Power is concentrated in the hands of professionals, and patients are largely powerless–unless they learn a LOT and gain the respect of their care providers.

I’m not surprised to hear that you have saved your own life, probably more than once. People are human, mistakes DO happen, and if you don’t know enough to correct them, they can, on occasion, be fatal. Knowledge truly is power.

Beth did answer your question in dialysis, though, when she said:
.
Centers are not allowed to discharge patients for “non-compliance”–most of which, I’d wager, is caused by poor education so folks don’t know why it’s in their own best interests to get their full treatments or not be fluid overloaded. And, some “non-compliance” is no doubt caused by patient-provider conflicts that make people unwilling to go to the center.

Your anger is understandable, but anger is FUEL. The question is, can you find a way to use it productively to help change things for the better?[/QUOTE]

Hi Dori

I understand in center needs to have consumers try hard to follow the rules set up for there own good. My point is not about being in center but home consumers. Since my trip into dialysis started I have try very hard ,not for the center sake, but for my own sake. But from the start the company that I’m with has made it more diffcult than it has to be, by speaking, nothing is put on paper. I have machine that will record phone calls, not my doing ,the company has called me (manager) and told he was going to discharge me from home program. I let him in same phone call I needed that on paper. No paper as yet this three weeks back. I have let this company know that I will tape record any and all phone calls from this point on. No more phone calls. I do not have time to play games, which from the ESRD letters that I have seems to be name of the tune. “Play by rules and be nice” this from ESRD.

On what you think to be anger. I let go by since you do not know me. I look at it as standing up for my rights. I understand a good bit about anger and being pissed off and all the rest. These are for kids or adults that lack a understanding of issues. Like people who feel that a person is angry without first talking to the person face to face. Maybe you have not had anyone stand up for their rights. Maybe you like people who play by the “Rules and are Nice” You yourself admit that the dialysis world for the most is behind in the thinking on consumer care. And how long have you and other groups been working on changeing people thinking?

I’m really not angry, I just want some respect. I will be going back to my doctors that have knowed me for most of my life. My history is to much for these people. They do not understand and don’t seem to care about other health issues.

Have a Good Day
bobeleanor

Sorry, Bobeleanor, I think we’re misunderstanding each other, here. You sound angry, from your emails, but I can only go by what I read. And, I’m certainly not someone who agrees that people should “play by the rules and be nice.” (Well, okay, nice is good). As I just said in my last post, I think there’s a power differential between professionals and “patients” (dialyzors!) that is unhealthy. Dialyzors should be treated with respect. Your problems are with the home program–but it’s a home program that is acting out of an in-center mentality. They are still trying to control you with “important rules” that may not really be needed to give you quality care. A true home program wants to empower people, not throw bureaucratic barriers in their way.

HI Dori

Yea ha I on my laptop.
We do misunderstand one another. The thing I like about the internet, is that you can not hear the person real voice. I understood that to show anger or mad ,whatever, the person would use bold or big text. I have try very hard over the last year to help these people understand(at the company) that one size won’t fit all. And just like you and Beth and I’m sure countless others, it seems to be like we talking to a wall.
I have often said that I’m sorry on this page for being mis understood, and I do not have a problem with saying I’m wrong or I’m sorry. I just think that a time may be at hand forme at least to try something. That is why I will go back to my real doctors. I will seek the advice and a way to go from them. I have trust in them. They were always honest with me even if it hurt me. I hope my main doctor reams me a new one. He told that I was spoiled by being with him, he told that in the real world not all medical people are the same. What I have in mind is not for me, I know that when I get to my doctor he and I will get what is needed for me which is to be left alone by this company. What I want to do if I can would be for others more later.

thanks Beth and Dori
bobeleanor