Noncompliance: A Word that Kills

In February 2007, I entered the arena of in-center hemodialysis as a brand new hemodialysis patient. Despite nearly 20 years of experience in hospital and clinic settings, I soon found that it was indeed a brave new world I had entered which was completely foreign to anything I had experienced as a physician. Despite my intention of one day performing home hemodialysis as my preferred modality, I had to submit to the regimented perils of usual care hemodialysis giving my care over to nurses and technicians that I soon learned were overworked and underpaid.

But the biggest culture shock was the manner in which choices were made for me and often without any input from my own wishes. Any patient experiencing the shock of a devastating medical condition can be overwhelmed by the changes in their life and mine were literally overnight going from my clinic the day before to their clinic the next day. Fortunately, I had several years of slowly progressing chronic kidney disease to come to terms with the eventual need for renal replacement therapy. Interestingly, I didn't struggle with that aspect, but the loss of freedom and choice soon became apparent from just obtaining a "seat" in the unit. Most appointments prior to this, I was given choices of times and dates to accommodate my own schedule. Here, I was told when to arrive, what days to come and where to sit.

By God's grace, my technician had gone from being my own patient to my technician overnight as well. She is a talented and dedicated health care professional who mastered the tasks of dialysis with compassion and competence as few other techs have. I was pleased to later learn that she had proceeded to an RN program to complete her education. Fortunately as well was our prior relationship of trust and respect so that she felt comfortable listening to my concerns. My first decision that she agreed completely was to limit my ultrafiltration (UF) from the very first day to only 500 ml since I still had robust residual urinary function. I did not understand that day we had violated an antiquated minimum UF rule of 300 ml/hour of dialysis. Yet it made no sense to pull 1200 ml when I had to struggle to make it through that 4 hour session before I got up and went to the bathroom. In fact, there was more than one occasion in my early days of dialysis that I had to pause the treatment to relieve my bladder. That one decision turned out to be an important survival choice which studies confirmed at least a decade later. High UF rates damage residual renal function.

Unfortunately, my wonderful first technician left only a few months later after other techs started vicious and unfounded rumors about her. My safety net collapsed and the real arena of control and retaliation soon followed not even prevented by "MD" after my name. My UF goals of only 500ml and the urban myth of a minimum UF rate persisted and many times over the years, nurses forced me to accept the minimum UF rate and receive 400-600 ml of saline in support. I finally put this to a rest only a year ago by a doctor's order but that still caused one nurse to give me an extended lecture on why it was wrong. After nearly 14 years of hemodialysis, my UF last night was once again, 500 ml for 5 hour session at a UFR of 100 ml/hr and 0.1 kg less than my end dialysis weight two days before. But this took more than a decade to get as a standing order when it should have been done a priori given my lack of significant interdialytic fluid gains even with the loss of most of my residual renal function the last few years.

For such a minor issue to persist for well over a decade despite medical studies showing it is an urban myth, and my own personal situation of not needing even the "minimum UF" settings on most sessions, that was a minor nuisance turned into a major point of contention by all too many dialysis nurses and technicians. The label of me being a "difficult" patient surprised me since it had been my practice and my professional ethics to honor informed decisions by my patients when it was medically indicated or not prohibited. 

The real culture shock which took only a short time to understand was the lack of respect for patient autonomy and the nearly complete lack of informed consent on various choices. (here, and here) One study in 2005 showed that only 12% of patients heard of home hemodialysis as an option before starting renal replacement therapy. Paternalism rules in the dialysis arena from the nephrologist down to the dialysis techs. Further, this culture fuels retaliation I believe much in the same manner psychologically as the Stanford prison experiment produced harsh treatment and control by the the student "guards." Autonomy and choice are squelched by the ever present rushed schedule and lack of time for individualized care from harried techs.

An example of this is when I chose to forgo erythropoietin (EPO) early in my dialysis journey after I learned about the many risks with little if any benefit since my Hb was near normal without any Erythropoiesis-stimulating agents (ESA) support. The first day I declined EPO, the head nurse was very upset with my decision, but the very next day, the FDA released a black box warning and my decision to forgo EPO presaged the new guidelines by one day. Nevertheless, a year later, in 2008 during my first trip to visit my mother in Cape Cod, the clinic director introduced herself with the following statement, "So, you refuse EPO." This after the black box warning and having a Hb over 12.5 without it.

Whenever I declined a treatment or a procedure, it was documented as "patient refuses." Their obvious documentation practices  deliberately made all of my well informed decisions appear to be "noncompliance." When ever I saw that they documented my choice as patient "refuses," I corrected them and stated, no, that is not true. I decline that treatment by a very informed choice based on my study of the issue at hand. Most patients do not have a medical degree and the ability to readily research issues for their own benefit, although a surprising number of my own patients did just that and brought me articles I was not aware of adding to my own education on select conditions.

But this adverse documentation has a purpose in the dialysis industry to justify involuntary dismissals for alleged noncompliance. Involuntary dismissals are a death sentence brought on often by only asking a nurse or technician to wash their hands before treating them.  While the overwhelming number of dialysis professionals are caring, compassionate and competent providers, I have unfortunately encountered far too many who would have fit in well with the SS more so than with Florence Nightingale. In 2018, I became the object of such a cabal of technicians, nurses and a physician who on April 16, 2018 dismissed me involuntarily from my home dialysis program. My doctor claimed I had "failed" home hemodialysis after the technicians claimed that they could not fix what ever was wrong with the machine causing a horrific taste and associated symptoms during dialysis.

Yet, the machines that these techs claimed could not be fixed are the same exact RO and 2008K@Home machines that my current technician did rebuild and restore to excellent function. My two years of forced in-center treatments came about in part by a campaign to show I was not only noncompliant, but also unable to tolerate home dialysis treatments implying in many ways I was either deficient psychologically or incompetent to run the machine. I am grateful that the atmosphere changed greatly after President Trump's executive order in 2019 to increase home dialysis availability and use in the ESRD population. I doubt I would have returned to home hemodialysis without his intervention.

During my fixed in-center schedule from April 2018 until May of 2020, I missed many family outings especially with my grandchildren such as piano recitals, school outings, and family dinners. This is of minor consequence compared to an in-center dialysis patient who is left with no recourse but emergency dialysis from the ER a few times a month instead of thrice weekly. It is a painful, and slowly agonizing death sentence for the alleged "crime" of noncompliance with the dialysis nurses and administrators acting as their accuser, prosecutor, judge and jury. The ESRD networks often rubber stamp these dismissals leaving the patients with no recourse unless they can get placement with another dialysis. But the dark secret of dialysis centers is blacklisting the dismissed patients preventing transfer to any other unit.

This in part happened in my case as well. The week before I was dismissed, I sought a transfer to another physician at another unit in Spokane WA where I trained on the Baby K. On Friday morning, my doctor I was transferring from called me to ask me if I was going to come in for my monthly clinic visit the next Monday morning. I told her yes and it was my plan to thank her for all she had helped me with over the prior three years and part on a professional and amicable level. She contacted the doctor I was attempting to transfer to who had at one point been a colleague of hers in another medical group. When I came in Monday morning, I thanked them for all that they had done. Then my doctor informed me that the other doctor would not accept me as a new patient but he did agree to a second opinion. All this occurred with the other doctor never once contacting me directly. She further stated that since they could not detect or find the offending issue with my dialysis machines, that I had "failed home hemodialysis" and she was transferring me back to in-center "permanently" the very next day.

I was given no choice, no recourse and they pronounced my sentence. I still acted in a professional manner as a physician and I still thanked her for all that she had done for me the last 3 years. I parted peacefully, cordially and professionally despite the obvious injustice of what had just occurred.

The next two years were difficult and I am still not returned to the level of function I had before this occurred. At 62, it may in part simply be the aging process, but there is no doubt that my body took a toll going from 22 hours of dialysis weekly to 12 to 15 hours a week in-center.

The word noncompliance is tossed around in medical circles as if it is the greatest of evils, yet in my instance, it was simply my own choices, my own informed decisions that was forbidden in this arena of dialysis. And I do call it an arena because anyone that wishes to maintain autonomy, independence and informed choices must become a defensive soldier able to defend those rights themselves, through knowledge, to keep those civil rights so easily dismissed and trampled by this industry.

It is with great sadness that I contemplate the number of patients who have succumbed to this sentence of judgement, this death sentence imposed often for no reason other than the power and control of people imposing their will on others helpless to oppose them. Yet, this is most often a silent suffering only known to those close to these patients. Government statistics are sparse at best. It is time that this practice is halted and true patient rights are respected once again in the dialysis unit.

Belding Scribner commented on his "Nobel experiment" that was hijacked by greed and profiteering. His close friend  Christ Blagg, MD eulogized him after his death in the prominent renal journal CJASN:

Belding Hibbard Scribner—Better Known as Scrib

Christopher R. Blagg

CJASN December 2010

"Scrib was always interested in the big picture. In 1961, he was espousing development of dialysis centers but progress was slow. By 1965, he had seen the success and cost savings with home hemodialysis and was urging its use to enable more patients to be treated. Senator Henry Jackson, who had a childhood friend on dialysis, introduced the first legislation for government support of dialysis and transplantation in 1965. Scrib's views were also a major influence on the Gottschalk Committee that looked at the potential role of government in 1967. He, among others, helped to get Congress to pass legislation for the Medicare End Stage Renal Disease Program in 1972, but later became disillusioned as he saw the large profits in the early years and the growth of for-profit dialysis organizations. He said that what he had regarded as “a noble experiment” had become a vehicle fueled by greed rather than concern for providing the best treatment for patients. He continued his interest in renal politics for the rest of his life."

May it be soon that we return to the ideals of Dr. Scribner's "noble experiment" and see the fruit of his dedicated contributions and donations to all that suffer from renal disease. It is time to overcome greed and cold hearted adherence to the bottom line and instead place relief of suffering and restoration of health and life from this wonderful technology that sustains me today. It is time to see that dialysis is also and in many ways most importantly, the true gift of life.

Comments

[Alice Verbeek]

Very interesting to read. My husband was on dialysis for 2 years after he had his kidneys removed because of infections in his kidneys that could not be resolved.
He had Polycystic kidney disease. His last few months he was on home hemodialysis. He really liked being at home for dialysis.

[Peter Laird, MD]

Home dialysis is the preferred modality in many nations. American dialysis has been thwarted by large dialysis corporations filled with the bottom line profits in mind instead of providing the best options for patients. We have had very little innovation in dialysis compared to the rapid advances seen in the other specialties. It is time that the wonder of life saving dialysis become the vision the Dr. Scribner had with his noble experiment in the 1960's. Most of our important innovations in dialysis actually occurred in the 60's and early 70's. In fact, many received superior dialysis in the 1960's for 8 hrs, thrice weekly instead of 3-4 hours thrice weekly that is standard today.

I never met Dr Scribner, but I am motivated by his selflessness and devotion to his patients as Nancy Spaeth still testifies today. She started dialysis December 26, 1966 and is still doing well today. Dr. Robin Eady was also one of the longest living dialysis patients who started with Dr. Scribner as well. His vision of this modality could be put to so much better use today, especially in the home environment than is used today.

We can do better and we should do better.