I am Mickey’s daughter, Roberta, a patient safety advocate. When my father started dialysis, my basic knowledge of this treatment was nil. Because I had, for years, been a patient advocate, I knew that my father and I needed to be educated - this was his life. Through my entire nursing career, I encouraged patients, and their loved ones, to ask questions in order to fully understand that which was being done, as well as to allow them to make informed decisions and choices. Unfortunately, many advocates (patients or their loved ones) in the hospital setting or dialysis setting, are viewed not as advocates, or part of the team, but as ‘problems’, ‘challenging’, ‘troublemakers’, ‘bothersome’ ‘annoying’, and so on. Having worked in healthcare for around thirty years, I knew this type of thinking was the result of those providing care not having a complete understanding of what the patient and/or their loved ones were experiencing, as well as those providing care not understanding it is the patient’s right to know everything that is being done to their body and why. I was aware, more than I wanted to be, of the labeling of patients/families. It was deep rooted in the healthcare system. It was a journey to be remembered.
As a result of researching, through the internet, I quickly learned that many patients, in many units, (throughout the United States) were not being delivered quality safe care. Soon, my father and I would start to encounter that which many patients had already experienced and shared with me.
I reached out to many dialysis experts, from the beginning to the end of my father’s dialysis journey - six years. These individuals gave their time in providing direction and explanations to our questions. If it was not for these individuals, I am sure that many more mistakes would have happened. My father and I, being astute of staff practices, prevented many errors. This was the result of our being educated. I must admit, it did not go over well with many in the unit. We were advocating for safe care. We soon learned that speaking out to ensure correct practices were being implemented resulted in resentment from many. This took a heavy emotional strain on my father which no patient should ever have to encounter, especially during a dialysis treatment.
My involvement in dialysis advocacy soon grew to where I had the opportunity to review dialysis facility surveys, from over twenty states, dating from 2003 through 2006-7. For California, dating through to 2020. My review of these surveys, not only supported my thinking that there were problems in dialysis units, but made me more aware that I needed to try and effect change. I was shocked at what I had and continued to read in surveys related to delivery of care. Through communication with patients/families/professionals, I realized that these aforementioned feared retaliation if they spoke out to ensure they, their loved one, or their patients received safe care. This, I soon learned, was part of the dysfunctional culture that evolves in the dialysis setting. I quickly learned, from many patients, that if they asked a question, or questioned a practice, it only took a shrug of the shoulders, a certain eye-movement, a facial expression, certain body language, etc., -> -- all that sent a clear message to the patient - do not ever ask me again. This I heard over and over and continue to hear.
After communicating, for six years, with state and federal individuals connected to the world of dialysis, I knew that something needed to be done. The federal agency, CMS (Centers for Medicare and Medicaid Services) was to protect patients and ensure that facilities were surveyed every three years. CMS contracts with each state (state survey agency) to act as their agent to inspect facilities. However, dialysis facilities are not a high priority for CMS, thereby, leaving patients exposed to situations that can place them in harm's way. I, often, wondered if those working at CMS would want to receive the care that some of the patients were receiving. A good question. Although I, myself, had seen many problems within the survey process, I still knew that cited deficiencies spoke loud and clear and supported the fact that safe care was not being delivered in many facilities.
In 2008, I approached California Senator Alquist’s staff and shared my concerns related to care that some patients were receiving in their units. Senator Alquist, is a true patient advocate, as evidenced by her sponsoring various bills. I presented to each Senator’s office, who was on the Senate Health Committee, a list of surveyed facilities in their district, along with cited deficiencies. Shortly, after this, CA SB 1474 was sponsored by Senator Alquist. However, three days prior, or thereabouts, to introduction into the Senate Health Committee, the proposed bill was removed from agenda. There were a few patients, who had the courage to come forth; they wanted to testify, however, at the last minute, changed their mind. Again, the fear of reprisal from their facility. There were various reasons given me for agenda item removall e.g. (1) the newly revised ESRD Conditions (federal-level regulations) were released and there was no need for increased state-level oversight which was included in SB 1474, (2) that the data provided to the Senators was not valid and (3) that the facilities were owned privately by physicians (not large or small corporations). This information, my understanding, came from the providers and provider groups. In fact, I can state that the information/data provided to each Senator was valid. The information and data came from: (1) review of dialysis facility surveys and cited deficiencies, (2) ESRD Networks Annual Reports and (3) the Centers for Disease Control and Preventions - MMWR infection reports/dialysis patients. However, after review of the 2020 surveys that were conducted, it is my opinion that (1) there is no change in the type of care that patients are receiving since the new ESRD Conditions were released, (2) there is no difference in the types of deficiencies cited since mandatory certification of dialysis technicians and, in fact, there were a significant number of facilities that had major deficiencies in infection control for 2020. Additionally, many facilities had Conditions NOT met. Conditions NOT met is a serious infraction and calls for more than what I consider a slap on the wrist e.g. that facility must write and provide to the state and/or CMS their plan of corrective action for cited deficiencies (POC). However, when I see that some facilities continue to have the same and/or similar cited deficiencies, I must again say that without adequate enforcement, the survey process might not have the teeth needed to effect change.
The CDPH is not able, as many states, to inspect facilities every three years. CMS places dialysis f acilities low on the list. This places patients, often, in compromised situations. It is evident, in my opinion, that we can not rely on providers self-monitoring, as evidenced by facility survey findings. It is even frightening, and many advocates fear, that one day dialysis providers might, in fact, be told 'you can now self-monitor'. If government agencies, as well as providers, can not realize that many facilities have major problems, and that patients lives are at stake, then we have come to the end of the road. If these aformentioned can not realize, from the surveys that are conducted, that there IS a problem with delivery of care, then indeed the end of the road is here. The bottom line is that for years and years there were no consequences for preventable errors that resulted in injury or death and there continues to be no sanctions to deter situations that place patients in harm's way. Of great concern is the following that should be everyone's concern:
When the survey is conducted there is a sample of patients that is the focus. If, for example, a facility has 60 patients, the survey sample, might be around 7-10 ?. Hence, the medical records are reviewed and patients interviewed in this sample. Therefore, what is frightening --->>> if a serious deficiency is cited for one, or two patients in the sample size, one must wonder how many patients out of the sample size had the same serious preventable error. One example that comes to mind is the patient who left the dialysis unit, for numerous treatments, over estimated dry weight. This was not noted by the dialysis technician, or the RN. The patient became fluid overloaded and required hospitalization. . One could say if one patient in 1o had a serious outcome, how many in 60 had the same negative outcome? Certainly, something to think about.
Recently, due to many patients contacting me stating they did not want to contact the state, to obtain a copy of their facility survey report (due to their facility finding out and potential staff resentment/reprisal), I obtained the surveys and posted to our site. Some patients requested their facility provide a copy of the survey, but they were denied such - being given various reasons, excuses. It is obvious that many facilities have not been inspected in years, far longer than the three year timeframe required. When the Conditions were open for public comments to be submitted, we suggested that dialysis facilities, similar to nursing homes, post their most recent survey and/or complaint investigation in a conspicuous place within the unit for those entering to read. This never made it into the final Conditions. Questions always come up as to why? If providers continue to profess excellent care and great outcomes, why not be transparent and display the survey report. There is more to quality safe care then outcomes that providers speak about. A patient who has good outcomes, great lab values, etc. might be a patient who has experienced a preventable error that resulted in potential or actual harm, or even reprisal for speaking out to ensure safe care was delivered. All advocates ask is that providers realize and understand that there are facilities that have staff that do not provide quality safe patient care. This is evidenced in the surveys that are on this site.
There are dialysis facilities that have been cited for major deficiencies. However, often the state does not return to the unit, to observe, in order to ensure the facility’s plan of corrective actions (POC) have been implemented. Therefore, how do we know that this is happening? There are surveys where the state has cited serious deficiencies and upon return to the facility, the same deficiencies are cited. The 2020 surveys are quite concerning in relation to infection control. Providers, aware that infection is the number two killer of dialysis patients, should take a close look at these surveys because there are significant deficiencies in numerous units surveyed, including Conditions NOT met (serious infractions). Further, even though there are specific guidelines surrounding involuntary discharges of patients, we continue to see patients being discharged for no other reason, other than a personality conflict with a staff person. The surveys for 2020 also show clear evidence that facility staff are NOT following their own facility policies and procedures. And, many medical directors being cited for not ensuring staff are adequately trained and following policies. Of concern was one facility where one patient's dialyzor was given to another patient. The facility was cited. The state returned a few months later only to cite the facility again, for the same deficiency. Obviously, the facility did NOT follow their POC. This, in itself, proves that unless the state returns to ensure compliance, we do not know what is happening in the units. And, of further concern are those facilities that are not implementing their Quality Improvement Programs by identifying problems, investigating reasons for such and problem solving to stop whatever the problem might be e.g. infections acquired. This is not a new cited deficiency and even some facilities, prior to the new Conditions, were cited for this lack of implementation. (The QAPI - Quality Assessment and Performance Improvement program is imperative in order to prevent errors from continuing).
Perhaps the dialysis providers need to be more concerned about their existing facilities and use the survey as a tool for improvement, rather than being concerned about the timely inspection of their new facilities, in order to open in time to serve patients. We hear the providers speak to states/CMS for not inspecting their new facilities in time, but we have NEVER heard a provider speak to having their existing units inspected timely to ensure compliance. Yes, providers want to open new facilities to be able to provide treatments to patients, but they must also be concerned about their existing facilities and if they are in compliance,with their own,facility policies and procedures.
We know that providers are legislatively-powerful, but we wonder if some of these legislatively-powerful people, would want the care that is shown in these survey reports. I wonder if shareholders would want to receive the care that some of these patients are receiving? Quality care goes far, far beyond the data on Dialysis Facility Compare and the Quality Incentive Program (QIP). Outcomes are not the only indicator of quality care. When a patient’s dry weight is not met, treatment after treatment, and no one identifies such, resulting in the patient being fluid-overloaded requiring hospitalization, then something is wrong with this picture.
Providers, we beg you to take a serious look at that which is happening and improve care. This can only start with having adequate unit-level supervision and ensuring that all staff are adequately trained and understand the rationale for their actions. A contract should be written and signed by the staff/physician and patient/family that states the patient can ask questions and question that which is being done without and resentment, reprisal, defensiveness, etc on staff/physician's part. This contract should include that those providing care understand the importance of patients being fully educated and participating in their care.
It is my opinion, that if staff are adequately trained and educated and aware of correct practices, but do not implement such, then their actions are intentional because they are fully aware that they are placing patients in potential or actual harm's way.
I challenge providers to be more transparent, admit when mistakes happen, and work with advocates/patients/families who have experienced problems with care in order to correct problems. However, before anything is done, providers must ensure that their staff fully understand what the dialysis patient experiences as it is a life-changing experience with emotional, as well as physical changes. Providers must ensure that their staff are patient advocates, that the culture that lies within is changed so that patients are viewed different. I had a dialysis staff person tell me that a certain patient was a 'good patient'. I asked what that meant the response was shocking... 'the patient never complains about anything'. The other side of that was 'oh that patient is a problem'.. I asked, 'why?', the response was, 'the patient always is complaining about something'.. What was the patient complaining about? Simple.. being cold, uncomfortable in the dialysis chair (not made for comfort), feeling nauseated during dialysis treatment, the needles hurting in her arm, the staff not coming when she needed help, etc. Certainly does not seem like a 'bad' patient to me? This labeling of patients and their loved ones must end.
A total transformation of the dialysis culture is needed NOW, not tomorrow, or the next day, but NOW.
Roberta Mikles BA RN
Patient Safety Advocate