Patient Involvement

On this board we talk about what patients are allowed and not allowed to do when in home hemo programs but I thought I would bring this out to a broader range. It is something everyone should be concerned about.
Yesterday on television I happened to catch a documentary on a couple who lost their child in the hospital unneedlessly just because of the chain of command. The child was in John Hopkins one of the leading hospitals.
Upon the childs death the family sued. John Hopkins wanted to settle the parents refused to settle until something was done to prevent it from happening again. The mother had noticed the little girl was going down hill. She called in a nurse and asked her to call the doctor. The nurse refused saying the little girl was fine. Another nurse came in and the mom requested she call the doctor as her daughter wasn’t looking or acting as good as she was. The nurse didn’t call the doctor and said her vitals were ok. The next day the little girl died of severe dehydration.
What John Hopkins admitted to was that the hospital was run from the top
down. Meaning the orders came from the top and no one could challenge them. Since that time they initiated Rapid Response Teams so if a nurse saw someone failing they could call the Rapid Response Team instead of the doctor then the rapid response team had the authority to do what was required. This mother continued to fight for the cause asking why couldn’t families also call the rapid response team when they saw something. At first this idea was balked at because it was FEARED patients and their families would be calling for things such as water, bedpans etc. However, they did decide to allow it. They found patients nor families abused the power of calling the rapid response team. A few other hospitals have also developed this protocol and I think it was estimated 600,000 lives have been saved. This is why I get so vehement
when policies are in place anywhere that doesn’t allow for patient input, change or negotiation.

Mart, what a story, I agree with you. Patients/family input is soooooo important. I know when Ralph was in Albany Med in April. They listened to me. Thank God I stay with him as the first night there his blood sugar went to 40 and if I had not been there they would not have known he was in trouble. He was incoherent. I sleep right next to him and I wake up at any move he makes. The nurses were really happy I was there.

Pt Involvement you know means many things. I understand that in dialysis center if a pt dies from a heart attack and he and his family have a will and avc. dirv. that say to let person die . The people who work in center will try everything to bring person back. And why, I understand it is so other pts don’t get upset. Pt involvement is good if the pt and family understand things fully. So family members fight over what is the best thing.

bobeleanor :?:

From what I understand, some corporations have taken the position that if a person is doing dialysis, he/she is choosing to live. Although I agree that the person who has chosen to do dialysis has chosen to live, I believe if someone who has kidney failure is on dialysis and has stated in writing that he/she does not want CPR, it is a violation of that person’s rights to do CPR on him/her. That said, some states only honor DNRs in the hospital so this may be why some corporations have taken across-the-board position to not honor DNR requests.

Experts in the renal community developed a “Model Policy and Procedure for DNR Orders in Dialysis Facility” to help clinics know what to do to honor their patients’ rights to self-determination. You can read it in this lengthy document on end of life care in ESRD starting on page 56:

In my opinion, home dialysis patients (and everyone for that matter) should discuss their wishes for all kinds of treatment with their family, to develop written advance directives, and if possible to name someone as a healthcare proxy to make treatment decisions on their behalf if they can’t communicate their own wishes.

If someone who doesn’t want CPR has a cardiac arrest outside of a hospital, an advance directive and naming a healthcare proxy may not be enough. In my state, anyone who desires no CPR must have with them at all times (on their person or in their home) a signed and witnessed or notarized “out-of-hospital DNR” form (could be called different things in different states). I got this form for my patients who desired it from the emergency medical service agency in my county. Some states require emergency responders to perform CPR no matter what the patient desires. In my opinion, it would better serve patients if the attorney for each dialysis clinic/corporation learned and disseminated information to clinic social workers – who are often the ones who discuss advance directives with patients – about what the state law allows/requires related to DNR orders. This would help them help their patients make the best decision for them which could include doing everything possible or doing nothing and many things in between.

Your hospital patient representative or social services department should be able to provide forms and be able to tell you about the laws in your state or here’s a link to a registry that has forms based on state laws:

One of us always stays with our family member when in the hospital as we have experienced both good and terrible care. Articles we’ve read suggest patients always having a family member or friend accompany same for hopsitalizations to protect against any wrong conduct or derelect of duty on the part of medical ppl.

At one hopitalization, our loved one was ordered a medication by an alternate doctor for nausea and related problems. The moment it was taken a drug reaction occured. We called the nurses immediately, but they just milled around and acted like they didn’t know what to do. The main one asked if our loved one had panic attacks. We told her no, absolutely not- didn’t she recognize a drug reaction when she saw one! We insisted she call the doctor. By the time the doctor showed up it was all over after an agonizing time for our loved one and us. And even the doctor didn’t have much of an answer for what had happened except to say the medication must not have been agreeable.

We had thought that nurses know what to do medically for our loved one when in the hospital, but these nurses sure didn’t know what was going on. And then, the doctor certainly wasn’t forthcoming either. So, it sure taught us what can go on in hospitals and we have been on guard ever since to learn how to seek protections should we ever have to go through another hospitalization.

It’s a good idea in a hospital for patients to have an advocate (family member or friend) with them as much of the time as possible. Studies have been done that show that errors can occur and new allergic reactions can always happen. It’s good that the nurses called the doctor. I’ve heard of situations where some are reluctant to do so.

In my opinion, if the family member or friend sees that his/her loved one (patient) is having a problem and the staff and the hospital are not responding to it, call the patient’s doctor and explain the situation in as much detail (symptoms, etc.) as you can. I have a friend who has a kidney transplant and other medical issues. She has experienced multiple (more than 40) medical errors. She is considering writing a how-to book with all the tips she’s learned about what has and what has not worked. She told me how once she had to sneak out of a hospital and go to the bar across the street to call her doctor for a medical error when the hospital staff wouldn’t call him. This is not something I’d advise in anything but the most drastic situation.

Beth wrote:

I have a friend who has a kidney transplant and and other medical issues. She has experienced multiple (more than 40) medical errors. She is considering writing a how-to book with all the tips she’s learned about what has and what has not worked

Let us know when it comes out- I’d like to buy a copy! It’s really sad, but when dealing with the “medical professionals” it’s like any other situation in life-some are ethical and some are not and one must be one’s own best advocate…

I disagree with your summarization Heather, I think the vast majority of
medical professionals are ethical. I think the major problem is some in the field assume to much power over the patient. Beth’s friend wouldn’t have had to go to a bar to call the doctor if the nurse would have called the doctor for her. Obviously, this nurse took her position that she had the power to make the decision whether or not the doctor was needed. As in the case at John Hopkins, the nurses took their position as having power over the patient and they didn’t call the doctor. How John Hopkins resolved the issue was to allow patients to have power. The reason we see such vast differences comparing centers to centers and home programs to home programs is not as much to professionals being unethical as it is the controlling power over the patients some abuse. A good example of this is, when I go to the hospital and stay with dad most nurses don’t say a word, but you get the few that insist it’s the hospital policy you can’t stay. Now does this conflict amount to anymore than someone trying to use their power? I don’t like to do it but my response is OK if I can’t stay transfer him to another hospital and what am I doing nothing more than using the power I have. These conflicts have nothing to do with Medical Judgements or Ethics. Whether or not bobeleanor could pick up his supplies or get EPO at a unit closer to them had nothing to do with Medical Safety or Ethics someone was exercising their power to prevent it from happening; instead of using their power to be more accommodating.

I don’t know how you use the word ethics, Marty, but to me everything you have described is what I consider poor medical ethics.

Heather, I think what Marty was saying is that you shouldn’t throw out the whole barrel because of a few bad apples. In other words, because there are some “control freaks” in healthcare, it doesn’t mean that every professional needs to be in control. I think Marty is right that if the patient and the provider work together on overcoming barriers to following the treatment plan, most patients will choose to do what is best for them. However, to work on the barriers together requires that patients are full partners in care and the system has to be “democratic” instead of “paternalistic.”

As a full partner, patients are fully informed and the healthcare team checks to be sure that they understand their treatment prescription and what can happen if they choose not to follow each aspect–in an informative way, not a punitive way. People have the right to make choices in healthcare and to live with the consequences related to those choices, just like all of us in other aspects of our lives.

Hi y’all,
Marty wrote:

The reason we see such vast differences comparing centers to centers and home programs to home programs is not as much to professionals being unethical as it is the controlling power over the patients.

I could not possibly agree more. Most of the conflicts that I’ve seen patients (dialyzors or otherwise) have with medical staff comes from a staff person trying to exert inappropriate control. This is true in my own life, too–the most memorably horrible encounters I’ve had with the medical system happened when I knew what I needed, and they refused to let me have it. But in a dialysis center or a hospital, people are vastly more vulnerable than they are in just a clinic setting. In-center dialysis is pretty much outpatient institutionalization.

CMS (Medicare) these days is talking a lot about “patient-centered care.” It sounds like the Rubin center is an excellent example of how to put that into practice–it would be great if we could figure out a way to share their practices with the rest of the community. Maybe we could start by talking with them about writing up a “How We Did It” story for this site. :smiley:

My experience, or rather my mothers experience, cos I was so messed up from meningitis, is a classic example of this.

I’ll cut it short, but I was bedbound, for several weeks, & unable to walk without suppport. I had a commode in the room, & called for assistance with a bleeper. nearly 20 minutes went by & I didn’t want to mess the bed again, has no stool control & was on all sorts of stuff, so I though I could make it by holding on to the edge of the bed. table’s leaning on the wall etc. Of course the stupid nurse who’d brought the comode back had left it as far away as possible by the door!.

I made if close, then BANG on the floor!

After that my mother insisted on being by my bedside for the remaining weeks, & my dad came in during the day. This was outside visiting hours & against there protocols, but what could they do.
Such is the wonderful care of the NHS. There were 3 night staff to 26 patients!! & this was supposed to be an accute ward!!

Sounds awful! I’m not sure that’s about control, though, so much as poor planning and staffing.


The control came in when the parents wanted to stay. They had to insist on it.

As far as the Rubin writing a how we did it. I don’t know. But the motto
on their letterhead etc. is Dialysis with Dignity.

I don’t think it is a how to. I think it is an attitude. The Rubin Center is confident in their knowledge of dialysis. Their goal is to maximize a patients health through more dialysis and to allow them to be independent again and live their lives taking care of themselves with as much freedom as possible. They aren’t afraid of letting go. They trust their judgements on how much to allow to whom, it’s individual. How would you write a how to, to nurses and nephrologist who are just plain afraid someone is going to screw up and get hurt even though their are plenty of home patients who prove this doesn’t happen. How do you write a how to that explains
you see dialyzors as people and you see your role as helping them maintain their health not run their life. How do you write a how to saying you apply commonsense to situations and you accept rules aren’t carved in stone and your not afraid the world is going to collapse if a rule gets broken.

They are like you and Beth open-minded, not driven by fear, use your commonsense, and work to accomplish a goal, more than working to abide by rules that have no affect on a person health.

I think when Dori said that the issue was not one of control but of poor planning and staffing, she was referring to the place in JW77’s posting where he discussed how the nurse didn’t come when he needed to use the commode and he fell as a result. Having to fight to stay in JW77’s room was probably a control issue.

I think one of the important “how tos” for staff relates to how determining that a patient knows how to do a certain procedure, how to report key elements of treatment, how to report symptoms and problems, etc. To give up control, staff have to believe that a patient has incorporated and can practice alone or with a partner what the staff have instructed. The goal is for patients to be safe at home. In my opinion, competency can be tested by asking the patient questions to relate the steps of a procedure, to ask patients to demonstrate the steps of that procedure (and have the nurse thow in some unexpected quirks so the patient has to troubleshoot them), and through periodic simply designed tests. These should build confidence for both the patient and the training staff which should make turning over control easier.

Hi Folks

When I read some the great post on this page I feel like I in the first grade and you folks are in high school and beyond. Keep it comming

bobeleanor :oops:

Hi Marty,
Beth is right, I was referring to JW’s post re: control.

As far as a “how-to” for the Rubin center, I’d like to know how they have managed to teach their staff a positive, fearless, common sense approach to patients. As you’ve noted, this may be hard to get at, but I’m looking forward to giving it a try! :smiley:

Dori, I’m glad your looking foward into giving it a try. If there is anything I can do to help let me know. I know if all home programs were run like the Rubin a dialyzor could go anyplace to get into a program. The nephrologist in charge of the home program at the Rubin sees my father and other patients who go a distance to get there free of charge. He does this so we can see a nephrologist at home (who gets paid by billing medicare) and we can stay connected to the hospital at home the nephrologist is associated with. I cannot think of 1 obstacle the Rubin has to prevent a dialyzor from getting into a home program. I can remember when I first called about their program this is what impressed me. I was talking to the RN, CNN and I asked her if the distance would be a problem.
She mentioned maybe the water but she no sooner said it then she said don’t worry about it, if we run into a problem we’ll just work it out. I knew right then and there I had connected with the right kind of people.
Don’t want to ramble on but here is something else I get amuzed by. The nurse on the Profession board was complaining of non-compliant patients. They wouldn’t send in their flow sheets, fill them out and they even gave them fax machines. Let’s take the Rubin approach. First once the patient told them they had trouble setting the fax machine up with their home phone the Rubin would help them find another way. They would be permitted to e-mail, call, maybe do a couple less readings whatever it took to help the patient. The Rubin therefore doesn’t have the problem of non-compliant patients. The Rubin has proven over and over to me that the solution to problems isn’t sending the patients elsewhere where it maybe better because the RULES are different. This is why I get so vehenemt when the suggestion is made the patients doing the changing like moving or changing clinics. I have yet to hear of one honest valid reason why centers can’t work with patients to make home programs work. Other than they strive to meet RULES, PROTOCOLS, and POLICIES and it’s my way or the highway instead of striving to help the dialyzors.

Boy Marty are you so rigtht.
We also found the Rubin to be so accomodating. We just had another problem with the dialysis machine ( I think it is getting tired and it is an omen since we will be starting Nxstage in 2 weeks. But Friday night I went to my stitching meeting and come in at 9:30 and started to get Ralph an the machine ready. I could not get the conductivity up. MaryEllen (our observer) worked with me until a tech called me at 11:15 and we decided to give it up for the evening. The Tech will be here on Monday to fix the machine. MaryEllen immediately asked if we needed a back up since we would have been off Friday, Saturday, and Sunday.
So we were in Saratoga at 6:30 am on Saturday for back up. Every one at the clinic was very helpful and made us fee welcome. WE were not able to get into our home center at Clifton Pak as they are full.
I truly wish all centers/home programs would learn that it is patient first and be really helpful…

Pat, 2 weeks isn’t far off. I am almost as excited as you are. I can’t wait to see what kind of a job NxStage does for nocturnal patients. In my book the Rubin and Staff are just plain “class”.