A few weeks ago, we posted a 'patient voice' feature from Suzie Kos on the benefits of being on PD, to accompany the NephJC chat on the ISPD position statement on Encapsulating Peritoneal Sclerosis. In a twitter conversation, we heard another side from a different patient, who had been through peritoneal dialysis, and commented that the first commentary was "sterilized regarding the cons of PD". When asked to elaborate, his response was: "In 140 chars: (1) bad modality option for given family situation. (2) burden over depleted Px self-care potential. Details require more spc". Here is his insight. It is a perspective many health providers likely do not appreciate.
There are many facets to being a successful patient and to finding the right treatment for each individual. Many of these areas are not adequately taken into account; often decisions are based on assumptions, especially when it comes to dialysis modality. Regularly descriptions of dialysis treatment(s) and disease management are "sterilized" or overly simplistic. They do not fully convey the burdens placed on a patient, and in fact many of the burdens are invisible as they are rarely discussed in any meaningful way.
There are a number of dialysis modalities available to patients, and each have their own strengths and detractors. This is often one of the first choices a patient with end stage kidney disease must make, and one that often leaves little time for consideration or to gather the appropriate information to truly make an educated decision. While modern pre-dialysis clinics attempt to prepare patients, this is often inadequate due to the sheer magnitude of preparation truly needed. Patients also come equipped with a series of biases stemming from lack of preparation, personality & experiences, lifestyle, or simply preconceived notions, all of which will directly affect patient choice. Without examining these, how can one know that they are making the correct decision?
Patient aspects aside, it is also possible for rushed and biased decisions to be made by healthcare teams. This can stem from the pressures of patient biases and demands placed upon physicians, to meet desired quotas. The most common part of all home therapies "sales pitches" is that patients quality of life increases as they have increased control of their healthcare. This is unquestionably true, however it implicitly assumes the burden of home therapy can be adequately managed. But if the burdens are not proactively and thoroughly examined for each individual, how can this be assumed?
As a former Mathematics instructor at the university level, one of the most instructive ways to help people understand a concept and to truly test how things work is to look at extreme or absurd situations. These always test understanding, show any flaws in your approach, and show whether or not something can hold up under strain. Strangely enough, I am a living example of this.
Diagnosis by Assumption: Preconceived Notions of Family and Physicians
My time on dialysis began in March 1988, when at 13 I was diagnosed with ESRD. This came after an initial misdiagnosis through psychiatry as being anorexic or bulimic. I was very skinny with little appetite as my health degraded with the then unknown ESRD, and my family was already convinced that I was purposely not eating or making myself vomit as a means of coping with my parent's divorce. I was never asked this, of course. They had arranged a meeting with a psychiatrist to address the problem and after about three out-patient interviews, the psychiatrist agreed with my family and I was admitted for two months of isolation and observation in the children's hospital psychiatry ward. After the two months of me denying any of this in interviews and not physically seeing the results they expected, a blood test was done: I had kidney failure.
I was furious. I remember crying after getting the results with my mother. On the one hand I felt vindicated. I told my family and the psychiatrists "See! I wasn't lying to you for two months! Why wouldn't you just believe me?" On the other hand I was scared, as despite not fully understanding it, I did know ESRD was something very serious.
That was the first time that biases and preconceived notions directly affected my healthcare, and it would not be the last.
About ten days from that initial blood test, I was laying in a hospital bed, this time on the Nephrology floor, with a new PD catheter emerging from my belly.
After the previous two months of isolation, in a way it felt great to have a defined illness. I would soon get back to my normal life. In many ways I was glad things were happening so quickly. Unfortunately, healthcare and speed are not always desirable.
Choosing Dialysis Modality: Patient, Family, and Physician Bias
I was presented with a choice a few days earlier in a meeting that lasted about 20-30 minutes. I had to start dialysis and there were two ways to do it: (1) hemodialysis (HD), or (2) peritoneal dialysis (PD). I can paraphrase the meeting as follows:
With HD I would have to come in to clinic three times a week in the morning for four hours. I'd miss school. Hemo involved getting a line, then a fistula, and then having needles put into that fistula to connect to the machine each time. You'll have a restricted diet, and hemo can make you feel "sick".
With PD you do it yourself at home, six times a week but only while you sleep, then when you get up you just have a normal day. It works better than hemo, and you have a much less restricted diet. You'd have to get a line in your belly, and you'd have to be trained how to do it. Most likely you and your mom.
This meeting is where the biggest choice so far of my life had to be made; then and there. In the mind of a 13 year old, given what's already happened over the last two months, and what was just described to me, what do you think the choice would be? What do you think the choice of a parent who'd been watching their child waste away with illness be? Which would work best in the mind of the physician?
Obviously, I chose PD. In fact, after all I had already been through, I demanded it. How could I choose anything else? PD seemed so easy, and compared to the alternative I literally wondered why anybody in their right mind would choose HD; it sounded like torture. Looking back on it now I was blinded by the fact that I just wanted to be done with hospitals and wanted my life back. My mother was blinded by the need to have the best method to make me healthy again. Perhaps the healthcare team was a bit blind to the impact that my recent experiences would have on my decision. Combine that with a program's desire to increase PD numbers or home therapy numbers and to get people off of hemo, PD seemed to be "the best decision that could be made all around". Given that, why examine or discuss it any further?
It never was.
Training & Primary Care: Empowering Patients Doesn't Necessarily Address Patient Burden or Self-Care Capacity
The issue now was starting home training. This proved to be another area that is subject to a bit of hand-waving. Since PD was the treatment choice viewed as the best for my situation, everything that could be done would be done to facilitate that happening.
At the time, there had to be two people who are trained as the caregiver: the primary and the assist. This was to be myself and my mother, however as I had a single mother who worked until the evening, it was determined that since I "seemed to be smart and mature", I was going to be the primary caregiver. For reference, normally the primary is the parent & the assist was a family member or the patient until one went to the adult hospital on turning 18. But, here we were.
I would perform the day-to-day bandage changes, charting, weighing, sterile procedures, cleanings, machine set-up, hook-up, detach, clean-up, and any needed CAPD exchanges through the day. I would also attend any clinic visits needed on my own as they happened during the day. As my sister and I were "latch-key kids" I was also the primary manager of my ESRD diet and medications.
I would get one night off a week: my mom's early night home, where she would set up the cycler instead of me.
If how I came about to choose PD didn't raise any eyebrows, this training plan ought to raise a number of concerns even if you have no idea what any of those procedures involve. Not only was I just 13 years old, going through school and generally just growing up, on top of all of that, I had the burden of essentially my entire healthcare also put on my lap.
It was assumed that would be fine as my family support system seemed adequate, and it was assumed that I was able to handle the responsibility; they'd educate me how to perform the tasks, and all patients were given education on managing the other aspects of their disease (diet and medications).
Study Extreme Cases to see What Breaks: A Series of Unheard Calls for Help
Previously, I mentioned looking at extreme cases to test an approach, understanding, and to see how something holds up under strain. I was the extreme case, and unfortunately I was the one to break under that strain, all without anybody really noticing.
Things started fine at first. I finally was able to be discharged from hospital, go back to school, see my friends and start my life again. My PD supplies were delivered on schedule as well as my machine. We had a large closet in our apartment that was mostly unused so that was where the supplies were kept, out of sight, with a few of them kept in my room for easy access.
I needed twelve hours of CCPD so my hook up time was about 7:30pm. So I had to start the set-up around 6:45pm. All went very easy. My mom asked me how it all was after about a week or so, and I told her that it was fine. Well, it was more she made a statement than a question: "You don't mind doing all this. It's not that bad." That's the only time I can recall her, or anybody for that matter, asking me directly about how I was coping (most questions from the healthcare team were technical or procedural in nature). My mom was a very "out of sight, out of mind" kind of person. Part of how she coped was to not really look at things too closely or to become a bit blind if things were bad; a bit like an ostrich. She put on a good poker face when talking to any of the healthcare team, but in the end she coped by assuming all was well and not questioning that assumption.
I remember one night in particular, I was hooked up and I think the Oscar's or Emmy's were on TV. My machine couldn't be unplugged to move to the living room, and the tubing extension on my catheter was too short to reach from my bedroom. I could just peek around the corner of my bedroom door and see the edge of the TV where my mom and sister were watching. I'd ask what was going on periodically, but eventually my interruptions were met with frustration. I went back into my room on my own and tried to listen to what they were saying with little success. That was the first time I felt frustrated by PD. Nothing major, but that was the beginning. And it continued to build from there. It seemed everyday was just filled with dressings, lunchtime exchanges, machine set-up, connect, disconnect, then being stuck in my room each night at 7:30pm.
The responsibility of PD was becoming a burden, not empowering. I was beginning to become unhappy.
At this point people may ask "why didn't I say anything?" Well, to whom? What was going to change? The doctors, nurses, my family, and myself initially all wanted PD. It was easy, and it was the best choice. While never said aloud or discussed, the distinct impression I had of the alternative, HD, was that it was to be avoided at all costs, it was best to keep me off of it, and modality change was taboo. Also a number of times I was told that if I found PD too hard, I could simply be admitted to the hospital and they could retrain me. Wow, that sounded great!
Discussions about any of this did not happen during clinic visits; I was never asked. Only procedural reminders of what to do, how to do it, and how great dialysis was going for me.
It was on one Friday night, my night off for setting up, that things really began to change. My mother was to set-up that night so I was happily watching TV enjoying my time off. She was late coming home, I believe because she went out for a surprise dinner date, and eventually got there about an hour after I was supposed to be connected. When she saw that I wasn't connected, I was scolded. When I replied that "This is my night off! You're supposed to do it!" "Well, I forgot. You should have known to do it anyway." Not only did I have to manage it five nights a week, but now I had to be ready to pull up the slack of my assist, just in case. It was obvious my mom soon forgot much of her training, simply due to lack of use. She could set the machine up usually without much help from me, but that was it. Alarms, connections, problem solving, was soon all left to me. If she had a problem, I was called to fix it. Her initial training was a headache due to work schedule, so me even suggesting a retraining period was out of the question. My unhappiness grew and I began to resent PD.
Things started to crumble, slowly, but surely. Resentment built and, in hindsight, as a coping mechanism to relieve the burden I became non-adherent. Initially it was small things: I stopped weighing myself and doing blood pressures. Then I stopped filling in the PD home records and just filled them out with fake numbers for clinic visits. I got caught by the clinic nurse, but was told that "she'd just rather see them blank than have fake numbers." They were blank from that day forward, no questions asked.
Eventually, I transitioned to full on non-compliance and stopped doing all sterile technique. No gloves, no mask. Ever. Soon I stopped doing all self-care procedures I was supposed to, save dialysis itself. I'd keep the same dressing on for a week and when I did change it I literally just pulled off the old bandage and put on a new one. I stopped bothering to warm up the dialysate for the daytime manual exchange and would just use it cold during lunch time. I didn't care anymore and couldn't be bothered.
Nobody knew any of this of course because on the surface all was well. In the eyes of my mom and my doctors dialysis was going well, and no problems were seen. At clinic my blood work was good, I was told dialysis was going well, and that was that. Out of sight, out of mind...for everybody.
Some time later, I was admitted to hospital because my mom asked for a "break". It was a standing order that if a parent was having a hard time coping that an ESRD child could be admitted for a week to help alleviate the pressure. I believe she was going to go on a short vacation and my sister was going to stay with friends. When I was told I was to be admitted, I simply looked at her and my doctor and asked "when do I get a break?" They chuckled dismissively and I was admitted.
During my stay, I was caught by the nurses not wearing sterile gloves during a set-up / connection one night. When asked, I responded "I forgot." When I was caught again, the nurses on the ward were present for all further procedures. My exit site had begun to have some nasty ooze around it so I was having sterile bandage changes with an iodine scrub daily. I was also having an extra week of "reminder training" by a PD nurse to ensure I could do everything. Of course I could, I passed with flying colours. In fact, I was the only patient using a specific model of cycler, so I often answered staff questions faster than they could look in the manual.
"But, being able to do something and wanting to do something are very different things."
It was also during this stay that I first told somebody "what's what" so to speak and faced head on biases of the healthcare system; one of my physicians in this case. I was brought into the floor's parent conference room with my nurse and one of the Nephrologists. It was basically to be a stern "dressing down" by the doctor in charge of the home therapy program as he and my nurse both thought that I was manipulating the other nurses into doing my dressings for me, and thought I was just being a lazy teenager with my home care. Actually I was quite thankful to the staff when they offered to do it.
After berating me for a bit he wanted a response for my behavior, my growing infection, etc... In typical teenage fashion I simply shrugged my shoulders and said "I dunno". He scolded me about various things but the exchange that will burned into my mind forever was "You're going to be the only person who will have a tunnel infection in this clinic. Ever! I'll not have your lazy attitude ruin my clinic numbers. You'd better have an answer that's more than 'I dunno'." Ilooked at the nurse, then to him directly and said "I don't really care about your numbers. And as far as I know doctors and nurses are supposed to care about their patients, not their numbers. I'm not a number, and maybe you ought to spend your time doing your job instead of shining your trophies."
Needless to say, he was shocked. He stood up and walked out without saying a word. My nurse looked at me and said "I can't believe you just said that. Nobody has ever spoken to Dr. X like that before." "It's true isn't it?" She left the meeting room as well and I was left to go about my day. I was told that he was angry about it for several days and had very little contact with him after that. Obviously it was not a very constructive encounter. Educational, yes, but not very constructive. Unfortunately for me it also meant no follow-up or further meetings on the topic.
Burden Leads to Disaster
I finished my remedial training and was told to "try not to forget anymore" and my family was reassured that I knew how to do everything perfectly well, which was true. My exit site cleared up somewhat and I was released although nothing really changed. Same set-up at home, save that my mom would set up my cycler two times a week instead of one. She asked me on the second day at home if I had changed my dressing. I did, and we never discussed any of the home care procedures again. Out of sight, out of mind. Clinic meetings were similar, all asking about procedures. I answered them, but more often than not I lied right to their face; I was still resentful and as non-compliant as ever.
It only got worse until inevitably, disaster struck. Unknown to anybody, a tunnel infection was brewing and I contracted peritonitis. Badly.
I came home from school one morning sick and vomiting. The guidance counselor drove me home as my friends found me laying on the bathroom floor at school hunched over the toilet vomiting when the 10 am bell rang. I had excused myself from class to use the washroom almost an hour earlier. My mom was still home when I arrived as she was getting ready for work. About 45 minutes before she had to leave, I began getting searing pain in my abdomen. She soon called the dialysis clinic after the cramps became almost unbearable, and they said to call a taxi and get there ASAP.
I couldn't stand long enough to get the elevator and when she wheeled me into the clinic slumped over in a wheelchair I could see the nurses and doctor's faces literally go white. Things moved fast then; a sort of calm panic. I was examined by the Nephrology fellow who was present, however my belly was no longer tender even when he pushed on it, hard, and I was having a hard time talking and staying awake. Then and there he told me "you're being admitted" and wheeled my up to the Nephrology floor. The ward was full, so they put me on the fold-out couch in the parent conference room. One of the PD nurses and ward nurses came in to look at my dressing. When she saw it, she gasped and told the ward nurse to run and get some iodine. In the meantime she rummaged through some supplies that were already in the room . The last thing I remember was the PD nurse literally emptying a bottle of rubbing alcohol on my exit site, and me telling her that it was cold and smelled funny. I passed out.
I woke up in the ICU two days later. The peritonitis was severe; almost fatal. When the Nephrology fellow came to visit me he told me that it was two days later and that for a while they weren't sure I was going to make it. Specifically, that if my mother had not been home to call the clinic, I would have died. He then said that "maybe we need to re-think what we're doing with you." I asked what he meant, but he just said "well, we'll talk about it later."
During my stay in hospital for the peritonitis, my PD catheter literally fell out of my abdomen while I was taking a shower. After having the tunnel sutured closed by the Nephrology fellow, I asked him "what now?" His response was "I don't think we're going to put another one in", to which I simply smiled.
I was on PD for one year.
That was a lot of background to go over, but it was necessary in order to make the points that I want to make about choosing dialysis modality. I'm a completely different person than the 13 year old boy struggling to cope, whose cries for help went unheard for so long. I'd like to think I'm a pretty successful patient now, well educated, and well adapted. From non-adherent, to non-compliant, and finally to being fully concordant; I am truly in control of all aspects of my treatment. I've seen a lot, and been through a lot. In three decades you see patterns of behaviour in people, some reflections of my own past behaviours, and all of it coming down to human nature; how we cope and why.
"The choice of dialysis treatment isn't merely about which dialysis option you think you like best, what works the best, or what gives you the best clearances etc.. You also have to take into account a whole slew of hidden costs to the patient, the family, and the support system."
On the flip side, healthcare teams have to ensure that they maintain an arms length from the decision process, be flexible regarding what they and what patients want, and remain bias free regarding what is "best" or what units sometimes "push" patients toward.
Dialysis will last an average of five years in most units. The right modality is the one that keeps anything from breaking under that strain. But that can only be found by ensuring all of the red-flags that were missed with me are thoroughly examined by both patient and doctor pro-actively, and that the healthcare team are continually looking for how patients are coping, or how they are making it known they need more help. This is not always verbal communication.
Hidden Costs, Non-Adherence, and Non-Compliance
So now we come to the crux of the matter. Home dialysis, HD or PD, in-center dialysis, even transplantation has a series of costs, some explicit, some implicit, and some very often unrecognized. All of this was meant to highlight that. Again, I was an extreme case, but remember testing what fails are when you can truly gain deep understanding.
For some, a given burden is easily shouldered. For others, not so much. Without even considering modality, for some people ESRD itself, the diet or their medications, prove to be a burden that consumes the entirety of a patient's "currency" for self care. How many have encountered patients that habitually don't adhere to diets? Fluid restrictions? Shorten their treatment times? Have a jaded or combative attitude? I guarantee you that most would love to not have huge fluid goals and a controlled diet. When chatting with patients who were struggling a bit I've often asked "If I had a magic wand that would fix your fluid goals/diet issues without any effort from you, would you want me to use it?" The answer is always a yes. But when the work it takes in reality to get them there is too much of a burden on their self care ability, things are left to slide. The result is usually both family members and healthcare teams simply demanding more or "better behaviour" from the patient and offering more education instead of addressing the issue; alleviation of burden.
This is not an education issue.
It's about coping with burden.
If it is not addressed as such, "education" can easily become "nagging", and that is a source of further resentment, guilt, shame, defensiveness, and so on.
Instead of focusing on the "why" a patient must do something, a focus on the burden is needed; the "how" a patient is to actually go about doing something. Lack of day-to-day patient support, patient resources, not having meaningful, two-sided communication between patient and physician or nurses, choosing the wrong modality, or not changing to a more suitable one, all cause and compound this to varying degrees.
Some patients find their burden alleviated when they are able to control more of their treatment, i.e., home therapy or self care. However I think this is a bit of a false sense of relief as it can often confuse two different types of people: those who are "controlling" and those who are "in control" of their healthcare. A very subtle but distinct difference, the latter being a true relief of burden while the former potentially exasperating it. How many people are familiar with the stereotypical "obsessive" dialysis patient for whom the Earth falls off it's axis if they have the wrong chair, for example? How many of those people are calm, relaxed, and truly in control of their healthcare?
More is not always better for all people.
Patient self care also means different things to different people. Some may be fine with the entirety of PD or home hemo, while others may only be open to certain aspects of it. Some may be amenable to frequent in-centre treatment, but not frequent home treatments. Some people may be able to manage their diet, but need help with almost everything else. Some may be able to mange small pieces of several aspects of their treatment. Again, all of this needs to be considered when choosing treatment type, and in a perfect world the healthcare system would have infinite space and resources to tailor the treatments completely to the patient. This is obviously not possible, which is why making sure the best possible options for a given patient in a given situation are presented.
In the end, the system needs to be dynamic, flexible, and aware. Enough to be proactive, not reactive, about keeping people healthy and happy. Granted, things are light years ahead of what they were thirty years ago. The almost constant medical and technological innovation I have seen in my lifetime with regards to dialysis and patient care is incredible. And yet, in areas such as patient education, preparation, day-to-day assistance, and communication with healthcare teams can still be quite lacking.
Without including in-depth questions on a patients ability to cope, adapt, and adjust as well as doing the same for their support net, a simple "pros & cons" evaluation of treatment types isn't very meaningful.
I hope at least some people find this discussion helpful.
Patient Perspective written by Steve Quinlan, who describes himself as:
My name is Steve and I am a 42 y/o male with ESRD. I have been on dialysis for 29 years: as of 2017 that would make 1 year on PD, 28 on HD. I have had two attempted transplants, in 1989 and 1991, both rejecting almost immediately after a few weeks. I am currently undergoing work up for a third transplant. I'm a stay-at-home dad and teach martial arts.