Patient Compliance

I have assumed clinical coordinator responsibilities at a 14 month old HHD program. My initial assessment of the situation is that there is a large range of patient compliance( as any unit). I admit, though, the non-compliance has far exceeded my expectations. :shock: Specific areas are patients do not fax in their flowsheets (we provide a fax machine), not completing the flowsheet in its entirity(and refusing to do so i’m told), no-show for their appointments, not drawing scheduled labs, and of all things, not doing their prescribed treatments! . I surmise that some of the issue was unclear expectations set for patients by the previous CC, and no firm action with patients who did not comply with their training agreement as well as lack of regular nurse initiated contact with the patient ( I suspect this could be major).
Going forward, my team will definitly set clear expectations with new patients (including time frames, 3 strikes your out ) Establish understanding so that if those expectations are not met, the patient will be assisted to find dialysis elsewhere. Most of our effort will be committed to building solid relationships with these patients to encourage their success, by things such as regularly calling patients even if there are no reported issues. ( I think a weekly “just checking in phone call” is appropriate–is that realistic??) and getting to know them on a more personal level, sending birthday cards, etc.
I’m a little puzzled however on how to transition the non-compliant group I inherited to the “new” rules ( not really new, just re-stated and reinforced). Obviously, it will be a case-by-case basis, and me taking some time to discover some reasons they may be not following through with the terms of the agreement, but I’m looking for any sage advice I can get with this whole issue.
I am not so naive to believe that home hemo patients are going to toe the mark all the time. (After all I admit I am some times not compliant with diet, exercise, medication either!!) I especially appreciate Jonathon Hope’s perspectives (found on this website).
Am I on the right track here? Any similar experiences? Do I have an unusal situation? Anyone have a different “out of the box” approach?
Also, if any one can come up with a better word than compliant, vs. non-compliant, please share! That always has a negative connotation for me. :?

Hi Liz, and welcome to Home Dialysis Central. Even though I don’t run an HHD program, I wanted to respond to your post because of the approach you’ve described to patient “compliance,” a word that I fully agree with you has a negative connotation.

At the Medical Education Institute (the non-profit organization that developed this site), we’ve spent the last dozen years doing research with people who have kidney disease–qualitative, quantitative, and even informal research. What we’ve learned from our own findings and the research of others is that when you’re talking about a chronic disease–like kidney disease–compliance is not the issue. The notion of compliance arises out of an acute healthcare model, where temporarily “sick” people come to be “cured” and then take over their lives again. In an acute care model, healthcare professionals are the experts, and their job is to care for patients. Patients’ job is to be passive and do as they’re told (“comply”).

In a chronic disease model, there is a recognition that the disease is not going to be cured, and that the patient is on his or her own far more of the time than he or she is supervised by a medical professional. The patient’s job is not to comply, it is to self-manage, which includes following the treatment plan (instead of compliance), managing and reporting symptoms, and maintaining safety. The professional’s job is not just to provide care, it is to prepare patients to self-manage and become their own experts.

So, the challenge I see in your approach is that it seems grounded in an acute model–you want to tell your patients the “expectations” and give them “three strikes or you’re out.” But if they’re out, they’re really in–in a center where they will be very, very unhappy, since they are used to being so independent that they seem to have left the sick role behind entirely and believe they’re entirely in charge on their own! (The center will be unhappy to have them, too.)

It’s ironic that many patients are so passive that it’s difficult to get them involved in their care at all; while yours seem to have swung to the opposite extreme! The question is how to get back to a team approach, where both staff’s input and that of the patient are both valued and both are required for a good outcome. Is there any chance that you could call a meeting of all of your home patients (or perhaps several small meetings) where you express a desire to get to know them and to work together to be sure they are getting the best care possible? It may defuse the situation and make it seem less accusatory if more than one patient is present when you explain that you need to have their flowsheets, their blood tests are important clues to their own well-being, that they may be charged (can you do this?) for appointments they miss, etc. I’m certainly concerned by missed treatments–it would be important to know whether these are really missed, done but not documented, or changed from one time of day or day of the week to provide the type of flexibility that HHD is supposed to offer–and what the adequacy numbers are for those patients…

If I were you, I’d ask each patient what his or her preferred call frequency is. Some might feel comforted that someone will check in with them and they will be able to ask questions, and some might feel that a weekly call is intrusive.

Anyway, I hope that some other folks who really do deal with these issues will also reply and tell you how they handled them!

I find this area very interesting and would lke to give it more thought. But my first thought is…is this situation part of the Double Bind Theory in dialysis patients that Linda Alexander explains. (maybe an offshoot) One would would think that if you want home hemo, or even PD would be that you want the independence in treating yourself. But then again is the, or are some patients so used to being cared for that they…I remember in my case that my spouse wanted desperately to come home. (I will shorten this) We were still held to 3x’s/week and I did all I could to convince her that upping the time would be beneficial. Odf course after uears of incenter, although logically she knew more is better, she resisted at first to do more. She knew we had more control at home but then again it was me, her “helper” that kept everything on track, ie. flow sheets, orders, meds, etc…So now I am thinking was there a difference between home and incenter as far as a caregiver/patient relationship.
Just thinking.
I would like to get back to the double bind scenerio however.

Howdy. I am a newly trained patient on home hemo. I first began hemo in 1997, and later had a transplant and now am back on hemodialysis. I was fortunate enough to have a Neph that cared enough to get me hooked up with the right program. I feel better now than I have for several years and most assuredly feel better on home hemo(everyother day) than I did in center. In the more than ten years I have dealt with kidney disease one thing has become very clear. The term is Health CARE. Many times professionals be they at the bottom of the chain or at the top forget what their role is in caring for the chronically ill. The pros are often impatient and have the attitude of “buck up” towards the patient. Some of us do not want to deal with the situation we are in and most all of us would fell much better being healthy. At any rate could it be that those who are not compliant simply need a little “care” from the pro folks in their life? I totally agree Dori’s assessment and suggestions above. I have a loving family who supports me in what I do. I AM VERY BLESSED. Many patients out there and I suspect the non-compliant in the above facility fall into this catagory do not have this support. WOW a weekly phone call? What a wonderful idea! Home dialysis is an amazingly transforming experience for people who have had dialysis in center. I know that there are those who feel as though they were sent home to not be worried about. Thank you. Paul.

I want to followup on Dori’s posting of July 26, 2005. I am soon to begin my new career as a home HD nurse/educator. Dori, do you have suggestions for a good theoretical model on which to base a HHD clinic? I totally agree that the philosophy of care is much different than the acute model, but need some basic grounded information to take to my docs re: my philosophy. Can you provide links to good research articles or references to texts?
Thanks so much,

Hi Kathy,

I’m in Boston today to do a talk for the ESRD Network Patient Services Coordinators, so this will be quick, and I may post something longer later. In terms of chronic disease self-management, the “guru” in the filed is Dr. Kate Lorig at Stanford. If you look in PubMed ( for Lorig K, you’ll find a lot of references that are very helpful.

These days, the Medical Education Institute has been looking into the Ryan and Deci “Self-determination theory” (SDT). This is an empirically generated theory (that is, every piece of it is based on published research findings) that holds that all adults have three critical psychological needs that must be met for them to develop (think Maslow’s heirarchy of needs…), and their environments can help or hinder this development. Those three critical needs are:
– Competence (this is a VERY similar concept to self-efficacy)
– Autonomy (the need to feel as if one generates one’s own actions)
– Relatedness (interconnection with others)

Clearly, the in-center hemo environment does a good job of fostering relatedness, by putting together a lot of folks who are in the same boat. But I would argue that in-center hemo does a very POOR job of supporting people’s feelings of competence (unless there is in-center self-care) or autonomy. This is where home dialysis can really shine. If you put “Self determination theory” into Google, you can find the Ryan and Deci website, which has lots of downloadable pdf articles that should serve as useful background. There was a fascinating SDT-based article about diabetes care that led me to the theory in the first place–it found that diabetics who felt that their care team supported their autonomy had significantly lower A1c’s.

Liz and Kathy,
I just read with interest your above pieces. I would like to say that my husband is on noctournal and I am his care-giver. We are monitored on the internet nightly. However every night I have to call in to the center and talk to the observer/s with vitals, weight, and temperature. I have to do the same thing in the morning. Reports are sent to the nurses in charge of the program with every ity bit of info. The observer heard through my voice that I was not feeling well. I was in a lot of pain with a back problem. I got a call from the center the next day to see how I the care giver was and could they do anything to help me. With this type of program we are in constant contact with the center and we are all like family. The observers always remind us of bloods twice a month and always ask how we are. Once a month we have clinic and everyone attends. Very Very rearly does someone miss. I think that if you make contact with each patient/caregiver at least once a week they will feel part of a family. Just my thoughts.

I can not begin to say how terrible the “Non-compliant/ Compliant” labeling is. I have and am probably still labeled “Non-compliant”. Not because I am not self manageing my care, but because I self manage my CARE. One good example, I had a very high PTH. They wanted to remove part of my Parathyroid. I accessed the issue and said no to the removal. It becomes a quality of life over quantity of life issue. This I don’t think is taken into consideration by the “Professionals”. I also have a problem with the term “professionals”. How exactly do you become a “professional”? From my experience most of the “professional” know just about as much as I do or less even. Patients are not text books, all though to often are they treated as such, we are human beings. The human body is not the same for every person. A point that often goes over looked. I could keep going, but I think my point is made…
as for the calling once a week??? That is rediculous in my opinion. I would put a stop to that immediatly. Maybe if a patient wants that then offer it to them. Some people would respond well to that I am sure. I on the other hand would tell you where you could shove it. If that meant I would have to leave your clinic, then I would be looking for another clinic.
I may die someday because of my choices, but they will be my choices. It is a sad state of affairs that lawyers and lawsuits should anything to do with my choices. Except when a transplant team made a horrible mistake while doing my transplant, which cost me my organ, I can not find legal retrobution for their blatent error…

Wow, Pat, your husband’s center really sounds like an example of one that is doing things right, and focusing on caring–not just for the dialyzors but also for their partners. I’m glad that you’ve found it!

LSB, I completely agree with you that informed adults should be able to make quality vs. quantity of life trade-offs. It’s your life, and you are the only one who can decide what changes are worth making. As long as your care team tells you what will happen if you do one thing vs. another, and you understand, the decisions need to be YOUR choice.

What bothers me is that I believe too few folks do always understand, and sometimes people make poor choices because they have poor information. And that’s a different issue.

Yes we have a great center. Rubin sure cares about the patient and the family. If you do not understand what is being told to you they really ask questions to see if you totally understand. This is true patient CARE.
I totally agree that many folks do not always understand what the care team is explaining and don’t bother to ask for clairification. The patients and their caregivers/family need to be better advocates for themselves.
I try to talk to who ever I can and tell them they need to speak up and ask questions if they do not understand. Can you tell. I have a big mouth!
It is so important to ADVOCATE for one’s self.

Dori, Pat it in a top notch program. Dad is in the same program. You just have no idea how good it is to be in a program where the objective is to work with the patient to make dialysis the best as it can be and to make their life easier. They truly know all patients aren’t the same and their situations aren’t all the same. They have rules but these rules are more guidelines than enforcement issues. I can remember when dad came home from the hospital I called in to say I know I am suppose to call in dads BP’s etc morning and night. But for a while I would like to call at night and instead of calling you in the morning, I’ll give you dad’s off treatment information the night I call in to start treatment again. The reason I did this was because dad had just come home from the hospital
and if he was sleeping when he I took him off the machine I didn’t want to have to wake him. So as long as the BP and Temperature was OK they allowed me to bend the rules. They too figured for a couple of weeks rest was probably more important for dad than the rule of calling in right after treatment. This whole thing with “compliance” just boggles my mind. Every patient would be compliant if you took the time to understand their needs and yours and worked together to solve the problem. Once the problem is solved you may not have followed the rules but you do have a compliant patient.

what is this whole concept of ‘punisment’ for non-compliance?

I think dialysis professionals don’t really have a clue about how it really feels to be a dialysis patient,and being so judemental towards them is BS

I have been a home dialysis nurse for 5 years for both PD and Home Hemo patients. I absolutely love what I do and I understand that dialyzing at home can be a challenge for most patients. I also realize that everybody is totall and completely differnt. Unfortunately, the nurses in the home programs are held completely and totally responsible for wha the patient does and doesn’t do. It is very frustrating when you are written up or verbally beraded because your patient did not draw labs or send in their treatment records. Both of which affects payment to the facility because your insurance both private and Medicare will not pay without specific outcomes and treatment records. Although I do what I do because I absolutely love it and can not see myself doing anything else, my position is always threatened becuase of these issues. Those of you who work just imagine being held accountable for what someone else does or doesnt do. Personally, I don’t believe in harrasing patients. We are all adults and have to live with the choices we make. However, dialysis management requires that we continue to make attempts to retrieve these items because they are looking at the bottom dollar while the nurses (on the front lines) if you will are put right in the middle, between the patient and managemen. This is a very difficult place to be. There were 3 nurses in my position before me who could not handle the stress of this job. I care for my patients and want to remain consistent in their care so I just can’t leave. I do however, fear, that if a patient who is not following the home dialysis requirements and something happens to that patient, under my direct care, I will be held accountable. Regardless of how much documentation I do, some of the most “non-compliant” patients are the first ones to talk about law suits. It will always come down to…well you are the health professional and you should have done more. I have had patients tell me one thing and out right lie on me in front of their nephrologist.

I respect every patients opinion but just remember there are two sides to every story. Just like each patient is unique and different, so are health care workers. Some really care and some just want a paycheck. Some health care workers are have awesome knowledge and skills and some are clueless. However, somehow, we all get lumped together as well.

I think that if a patient wants to “self care” withiout rules or guidlines, then there should be another modality called something like “Total self care dialysis”. Then the patient could live however they choose to and health care workers would not be held accountable for it.

As a former police officer, I have been in the middle, many times in my life. Yet, many dialysis personnel act like individuals on dialysis are small children. At Davita, I was tired for being called every single day, because some one wanted some form or God only knows what else. Dialysis is a medical treatment for individuals with kidney failure, not a jail with correction officers. I would not blame the nurse, if I did not turn in a flowsheet or do a blood test, when they asked me, I told the truth, either I did not turn it in or I did not want to do the lab, very simple. No, I did not lie to the Nephrologist and he did not freak out as did Davita, about every little thing.

I was really trying to do my best in performing my treatments. Every blue moon I would miss a blood test, because of something that would happen with the cycler, is that my fault that the machine is not working correctly? At Davita, it was blame the patient, first, ask questions later. Davita just did not want labs once a month, which is very easy. They wanted labs for this, that, and just about everything under the sun. For some reason, they thought I had every disease under the sun. Guess what, they ran all kinds of tests, they found nothing, as I told them they would not find a thing. Yet, to them, patients are fools.

Being a part of the Davita Home Dialysis program is very, very demanding, because they tend to be very, very obsessive and complusive. On a Davita home visit, they started to look thru my refrig without asking, that is a jailable offense. That is how criminals on probation are treated, not someone on a medical treatment.

The dialysis clinic that I currently going to, is very laid back, not obsessive or compulsive. My former Nephrologist and his office were outstanding, but, I was not going to tolerate the Nazi mentality at Davita. I have had alot of experience with people and money and I have never, ever seen people as obsessed with money as Davita. I agree, Nurses are not being paid enough. I love the Nursing staff at my current clinic. I turn in my flowsheets and labs on time, because I want the clinic to get paid and so they can do the right t hing for me with the labs. The clinic truly cares about the people that need dialysis. I want my clinic to make money so they will always stay open. If you are curious, someone on dialysis claimed that I did not know what a Nazi was? My family is from Deustchland(Germany).