Jane wrote:
As far as the unit being kept cold like hospital operating rooms, the Medicare regulations do not support this. It states that the temp. in the unit should be set for the comfort of the patients, not staff. Freezing patients is ridiculous and cruel.
Beth wrote:
Jane, you’re 100% right about what the regulations say and I agree that it’s wrong for clinics to have the temperature set for staff.
Where can the above mentioned regulations be found to read?
Jane , you sound like such a compassionate person. I only hope you can get out of these centres very soon and do it in the comfort, peace and WARMTH of your own home. 8)
The current Conditions for Coverage (ESRD regulations) can be found at http://www.homedialysis.org/v1/resources/pdfs/42CFR405_Subpart_U_10-1-0_8.PDF
The proposed Conditions for Coverage can be found at
http://a257.g.akamaitech.net/7/257/2422/09feb20050800/edocket.access.gpo.gov/2005/pdf/05-1622.pdf
Medicare has to read through tons of comments and publish final regulations by 2008. Medicare’s goal is to publish them next year.
Beth:
If a clinic tries to discharge a patient for expressing to the surveyor his/her thoughts about the quality of the care in the clinic, my suggestion would be to tell the clinic that if it threatens discharge, you’ll be contacting the state survey agency and ESRD Network to file a complaint. You may also contact a lawyer to see what legal rights you have.
There is no time to do this. The patient must go to dialysis every other day in order to live! Unless one is emotionally prepared to go to the hospital ER should he be “dumped” this is too much to take.
Beth:
I bet that last threat would move your complaint to a higher level in the chain of command (to risk management people) who will have better judgment than those in the clinic who are emotionally involved. Discharging someone because of complaints about a cold clinic is pretty ridiculous.
Why don’t the higher ups know what is going on in their clinics? As I see it, they are the problem as they are not monitoring what goes on. If they cared, they would monitor! All they would have to do is give the patients confidential surveys which ask them how they are treated with the assurance that they could not be harrassed or “dumped”.
One corp whose unit I was in gave out patient surveys, but the questions were too general or about subjects that did not specifically target how we were treated. Patients don’t trust surveys like this. Also, I have seen corporate and state spend time at units, see the dirty conditions and other violations and it was fine with them! We have some ppl who are not doing their jobs!!!
Beth:
The ESRD regulations state that patients have the right to file complaints and grievances without fear of retribution. The ESRD regulations do not allow a clinic to discharge a patient for expressing his/her opinion. Reasons listed for discharge include if the patient is dangerous, if his/her medical needs are beyond what the clinic can provide, or if the patient refuses to pay fees.
Yes, this is what the regulations state- it’s all there in black and white, but plenty of patients have experienced otherwise! There have been reports of threats and dumpings.
Beth:
I think because patients are dependent on dialysis for their lives, so they worry about repercussions that in most cases never happen. However, as long as clinics can make someone fear they’ll be discharged, patients won’t speak up and those clinics that use this fear can continue to provide substandard care in an uncomfortable environment.
This has happened and continues to happen. Ask patients in many units across the country or on internet groups if they feel that they can freely make their concerns heard without fear of retribution and they will tell you NO! Does anyone from the Network or state ever pay patients a visit, give them a patient satisfaction survey, provide them full assurance that should they need to file a grievance they will be protected from harassment and dumping? Officials in some regions may enforce the regulations, but this does not happen across the board.
Beth:
If I were in this situation, I wouldn’t want to stay in a clinic that provided poor quality care and where staff treated me disrespectfully. Some patients don’t have many options. However, anyone on dialysis who has the capability or has capable loved ones should consider home dialysis so they can have help to dialysis from someone who cares for them in a comfortable environment.
I wouldn’t say some patients don’t have many options-I’d say most don’t. I totally agree that any patient in less than good unit conditions would be far better off to get themselves in a home program if they possibly can.
Beth:
And there needs to be a good way that surveyors can find out what really goes on in clinics without patients having to fear retribution.
If I could accomplish one thing it would be this.
beachy
Jane , you sound like such a compassionate person. I only hope you can get out of these centres very soon and do it in the comfort, peace and WARMTH of your own home.
Thank you so much, beachy. I don’t see how anyone can see what goes on in many of our American units and turn their head. I have strongly desired to have the opportunity for a better tx through a home program and my unit management tells me it won’t be much longer. But when I do exit the unit, I will not forget the in-center patients and will continue to search for a way to build protections into the system for patients. Patients should never have to fear retribution for expressing their valid concerns. Even home patients can go through all types of problems if their units play unethical games.
Just curious Jane, but you speak of dumpings and threats and I’m wondering if you have experienced such at the units you’ve been at? Also, how many units have you been at and for how long?
I’ve certainly felt uncomfortable at times in the two unit’s I’ve been at. In the first one because they were insisting fluid needed to be removed, and I insisted it didn’t; as it turns out I didn’t need fluid removed and the fact that it was, was making me ill and fuzzy headed to say the least; it’s not a situation where one is even able to fight for themselves. It’s fine for someone not on dialysis to say that getting out and exercising will make you feel better but when you are physically ill and weak it’s not possible, no more so than when someone has the flu would you expect them to do so because “it will make you feel better”. In the second unit a male tech. developed a very unhealthy obsession with me and I thought I could divert things; as it turned out I couldn’t and when I alerted staff all that was done was he was moved to the other side of the unit. Mr. wonderfull who is liked and admired by all still manages to hide his true self, and is still working with a vulnerable population, but at least it’s no longer me. People just don’t get it that all people who take care of pts. aren’t nice caring people; some just pretend really well! I know that bad things happen, even in nice units, and too that most of the time we as pts. are patronized. I would not have thought that at one time, especially since I worked in healthcare for so long, but it’s the way things are. There’s a wall of silence in dialysis units. Many pts. don’t see these things, but for those who do it’s just not acceptable and home hemo is our answer. Doing dialysis takes up three days per week, and that’s all it should take. We shouldn’t have to spend the little time we have fighting to right the wrongs. Lin.
I hope that people on this board realize that I know that staff at clinics can be challenging and that advocating for yourself gets overwhelming at times. I have seen staff fight with patients over insignificant things and I’ve advocated for patients and told staff to pick their battles. I always saw my role as patient advocate as my most important role. Healthcare is not what it used to be. You can’t even imagine how often I’ve complained about care, not just in dialysis, but in the entire healthcare system.
I have a friend who is a transplant recipient who over the years with kidney disease has had 41 medical errors (yes, she’s counting) some of which could have killed her. I was just on the phone with her until 2 a.m. this morning because she’s tired of being the “pain in the ass” that someone called her and being proactive in taking care of herself. In my opinion, she has post traumatic stress syndrome from phlebotomists who ignored her suggestions and multiple doctors that she used to trust who seem to believe that she’s high risk to sue because of their oversights and errors.
When she was on dialysis, she was put in a corner away from other patients because she spoke up for one. She turned the lemons into lemonade by using the sink beside her to let her do painting at dialysis. Last night she told me she almost bled to death while sleeping when her dialyzer developed a crack. By the time the tech saw the problem on his way to get a cup of coffee (she had complained that there was no line of sight to her from the nurses station), there was a 3 foot pool of blood on the floor and she had an 8 point drop in her hematocrit. And people were angry at her for complaining about the visibility in the clinic.
So do I know problems exist? Yes. Do I know that patients who complain can be treated badly? Yes. Do I know that errors can be made? Yes. It takes constantly being a self-advocate and as my friend says, it helps to have advocates outside the sytem to help you fight to survive the healthcare system. In my role as patient advocate, whenever I have the chance to share people’s experiences with CMS and surveyors, I do. But patients need to tell their stories too.
Beth, I think we know by now how much you do care, and you are absolutely right about pts. advocating for themselves. I’ve experienced a few horrific things since starting dialysis five years ago and I know that bad things can happen. I’m sorry your friend has also experienced the worst. Most of these things will never come to light however because of the way things are set up and handled within the dialysis field. It’s the biggest reason I want to do home hemo! I don’t ever want people controlling the machine (my body) irrespective of my concerns, and I don’t ever intend on begin groped and worse by a male tech. while I had needles in my arm knowing that if I screamed it would be ME that was looked at like a crazy person. People think it can’t happen in dialysis; they think it can’t happen anywhere in healthcare but it can, and does and the reasons are clear. No one wants to admit there might be a problem because the reputation of the unit and companies that own them will get a bad rap. It’s therefore easier to cover it up as in my case by telling the pt. “it’s your word against there’s” There will never be proof of any kind of wrongdoing because it’s management that handles things and it’s in their best interest to do damage control. Other staff is cautioned to let management handle things, and then there’s that wall of silence. Keep your nose down and clean, and don’t go sticking up for a pt… unless it isn’t bad for the unit and company. If I didn’t experience such things first hand I probably wouldn’t beleive it myself, but I did and that’s the biggest reason I want to do home hemo… I know it’s hard work, but my dignity and respect are worth it. Thanks to you and Dori we do have people who know how important those things are, and that all too often they suffer in an incenter setting. Thankyou, and I’m sure I speak for all of us! Lin.
Lin,
I have been at numerous units in different parts of the country as life has taken me in different directions and have been on dialysis for quite a few years (have beaten the statistics I guess). I have never been dumped, but have been threatened and harassed in a past unit.
Yes, I’ve had some interesting experiences. I had an administrator who went berserk on me one day. It was rumored that she was on prozak. I was tethered to the machine, as usual, and she came out and started ranting and raving at me saying I was always trying to cause trouble by not going along with things like most of the other patients did. Huh, I am always respectful but blind faith has never been my style. I believe in being educated on my tx. and actually ask questions. The admin. seemed to have two personalities. When she was in her good persona she was real friendly and loved to educate me. She’d say she wished the other patients would care about their txs. like I did. But then when she would get in that other personality…watch out! When she went wild on me, I believed the prozak rumors were true. I had to tell her she better settle down and get away from me and learn what it means to act professionally. She slinked away and the next time I saw her she acted like nothing had ever happened.
I have read your many posts about the male tech and about your tx issue. You do as I do- you repeat things often hoping to educate the dialysis community. On another occassion, the unit got dinged and that was the time I was threatened. I was taken aside by one of the professionals and asked if I was the one that caused the unit so much trouble by reporting them. I was given that speech they give you of “Maybe you would be happier at the other unit in town” (the one that was even worse than the one I was in!).
Another great day I had was when one of my previous neph went ape on me, because I asked him a question he could not answer. It was something relating to the machine and nephs don’t know the machine but they will act like they do. Well, he went balistic and I countered with, “Excuse me but I’m old enough to be your mother and I don’t appreciate being spoken to in such an unprofessional manner!”. The neph, Mr. Arrogance, was so pissed off that his face turned red and I thought I saw steam come out of his ears. Every nurse in the place had their ears peeled. Amazingly, the patients slept through the whole incident lol.
There is something about being tethered to the chair unable to freely defend oneself that makes it really troubling when a professional decides he is going to start an argument. I am always polite, but when that sort of thing occurs when I am on the chair that is when my line is crossed and I go into defense mode lol. I don’t think these medical professionals realize what a cardinal sin it is to harass patients on the chair. Just like with the administrator, I wondered what the neph was going to say the next time I saw him. He, too, acted like it never happened. Strange huh? I guess they blow up at times. Probably wasn’t even me they were frustrated with, but because I don’t lay there and go to sleep like most patients I became their target.
Oh well, these were just some of my funniest/craziest moments in dialysis. My current staff is a 10 compared to some of the previous staff- I can’t believe that almost every single one is so nice. But there’s still the patronizing and wall of silence you spoke of from the higher ups. Does it ever end?
You are so right that we shouldn’t have to lose anymore time than we already do to bring unit violations/unprofessional behaviors to the public’s attention. Home hemo is our well deserved ticket to freedom. But I don’t think I could go free knowing that those vulnerable little elderly ladies and men are still there with no one to defend them. Not just them- all patients are victimized by the mentality that rules in so many of the units. I don’t know if I will succed, but I feel like I must always try to do my best to expose this situation and bring change. As I’m sure you know, Lin, there were numerous heroic patients and patient advocates that proceeded us who did their best, too, to carry this message. They died handing the baton on. It’s disheartening that so few patients will put up a fight and the patient advocates are so few. But I never give up hope that there will be a breakthough.
Thanks Jane! At least I don’t feel so all alone. When I told a few things about being incenter some pts. chastised me for talking about it, or stopped just short of calling me a lier saying those things can’t happen in a unit, especially a “nice” one. Isolation is the worst part. When in the unit you are “allowed” to talk to the other pts. but someone is always around the corner or behind the part way opened glass making sure you don’t say anything they don’t approve of. People ask me why I would want to do home hemo and be so isolated; they don’t realize that in a unit there is no real privacy, and yes there is control. I’ve tested it out a few times by telling someone something and next thing I knew I was directed to the office where I was told if I had any complaints or problems I should not tell anyone besides management. When one does that the only people who ever hear about it are you and management and the only one it becomes a non problem for is management. My bp goes sharply up when I go into that unit and I have no control over that; I just smile and fake it till it’s time to leave. Some people think when my eyes are closed I’m sleeping but that is not going to happen.
The staff (most of them) are wonderfull to me, and very nice but I make no mistake in knowing that I must watch out for myself, especially since visitors aren’t really allowed. At least in the first unit my husband was allowed to sit with me the whole tx. . Now I feel like anything can happen and be covered up and made nice nice. For most of the pts. ignorance is bliss, but I’m not ready to go that route lol Doing dialysis should not be causing me stress, but it is and it’s all so insidious that a pt. who notices looks like they’re being paranoid. Changing units doesn’t help because the same unwritten rules are still in effect. Even though the unit looks clean, staff are pleasant ect… the thing they protect the most is the unit and their job. I knew some were aware the male tech. was at very least saying inappropriate things because he told me someone had commented on it to him, but when staff was questioned no one would speak up. It’s good to know where I stand (sit lol). but the best place for anyone who trully knows the rules in a unit is home where they don’t have to worry about such things. No one really knows what goes on in the unit, not even support staff. Even some of the pts. don’t realize. At one point I wouldn’t have believed it myself, but after five years of dialysis I know
the rules, and the only way I don’t have to follow them is if I do home hemo…
I want to mention again that I think it’s super that a nurse reading this board contacted me and told me she would be backup in case things didn’t pan out at the unit I’m at. It doesn’t sound like much to most but it meant so much to me! Prior to being here that did not happen.
If it hadn’t been for Dori and Beth that could not have happened!
On another matter I read in one of the publications at the unit that Nxstage has 500 people using their machine now; can’t wait till that’s 501! Lin.
Lin,
Your above post is one of the best on the subject of unit conditions. Most patients are in denial and accept mediocre, subpar patient care and/or unit condtions. This makes it hard for the patients who are aware as they know better, but can not change things unless there are enough aware patients who will speak up with them.
There are many unspoken laws in such dialysis units similar to communist control. You are so right that it is impossible to have a conversation without ears listening somewhere who will turn one in to the powers that be should one hold opinions in opposition to any lack of professionalism.
There are staff, too, who know that patients are being denied credible care, but can do nothing about it for the moment as they have jobs to protect. They do the best they can to provide good care on a limited basis, but even the best staff are nervous from the strain of being short staffed and/or being forced to conceal from patients fraudulent unit practices. Here, it is their job to bring healing to patients, but they are prevented by the many fraudulent things that go on behind the scenes. I have seen these better staff break from the strain by dispersing to other jobs, sometimes not even being able to say goodbye to the patients that they care deeply about. Once they question authority or resign they are out the door pretty quickly.
It is the ultimate slap in the face when there are so few out of both patients and staff who will acknowledge the unit problems and unite with the aware patient/patients to look for strategies to expose unit conditions and find a means of enforcement. Management knows this and happily keeps everyone controlled since it is not likely anyone will succeed in exposing them, barring very exceptional circumstances.
One learns very quickly in many dialysis settings when unitized for kidney txs. that dialysis care is not the compassionate, professional care one thought he was going to get. One learns he must figure out how to navigate the system and find out the best angles to getting appropriate care. If one does any less, he will be swallowed up by the many dysfuntional/overbearing personalities and dysfunctional situations that occur within the units.
And taking things to an extreme as you suffered, a unit can even contain the alcove and sworn secrecy that a sexually perverted individual seeks. Similar to the recent case in the news which brought out how ppl of a profession cover for each other (i.e police, medical, soccer students etc.), dialysis units can be one’s worst nightmare.
It is pretty crazy that the only safe way for many dialysis patients to get good care is to get out of the units, entirely, into home care. That is all that can be done unless one’s state has achieved a patient advocacy group that keeps dialysis care honest through allowing patients full rights to particpate in their care and full protections/enforcement should they have to file a grievance.
Dialysis rule: If no one else but the pt. witnesses it, it didn’t really happen, and since no one will look and there are no cameras (and never will be!) there will never be any proof of any wrongdoing. At least at home one doesn’t have to worry about that. It sounds cynical but it didn’t start out that way, and it took more than one bad experience to reinforce “the rule” and make me a believer. Some of the fight is going out of me because my family comes first. As I’m sure you well know there just aren’t enough hrs. in a day.
Most of the staff in the unit I go to are very nice and helpfull up to a point; they will not rat out a fellow staffer or will twist things to make nice-nice. I’ve said it before and it bears repeating; It’s like one big dysfunctional family. Many don’t see it because they don’t look, or plain don’t care. Some like to pretend everything is peachy kean so that they don’t have to do anything about the faults. I speak up, and I’m sure I’ve been tagged for that lol Do I care? No, the easy way is not always the best way. Right now I can’t wait to get that addition on and start training, if not at the unit I’m at, at the one whose nurse contacted me. Who knows, in regards to exercise I’m hoping to have enough energy and feel better too so that I can do that again. Maybe I can find a corner for my exercise bike so that I don’t have to visit the yucky basement. Lin.