Letter to my dialysis ward

I wrote the following letter to the head nurse of my ward the other day. I am thoroughly disappointed with the way thing are happening – or rather, not happening – there. I just couldn’t stand it any longer and I spent a good part of the night writing instead of sleeping, which I am now suffering the consequences of.

Here is the letter:

“I am writing this letter because my life is too short to play the role of ‘the good patient’ much longer. To that end I only see one solution and that is for me to leave the ward ASAP. This means far sooner than any of you have imagined. I simply cannot stand being met with the attitude that I am met with on a daily basis. Few places in the healthcare system does such attitudes prevail – dawdling and clingy at the very same time.

Seemingly there is no interest in getting the patients back onto their feet. It should be obvious to you that I am a fairly intelligent and independently thinking entity. And despite that I am continually met as if I was a four year old. This happens virtually every time I show up at the ward.

There is a paternalistic attitude where the staff knows best. Patients get no opportunity for bringing any input to the table – let alone learn anything valuable. There is an implicit understanding in all corners of the ward that patients are to be kept as ignorant as possible about their own situation. Quite naturally I can only guess that this understanding pervades every corner of the ward but it is my experience everywhere I have been so far. Why tell patients about their disease? Or use the knowledge that they have of it, for that matter?

At the same time you have a staff that ought to have stayed home virtually every day of the week. They are completely devoid of incentive. They couldn’t care less about their work or their patients. If any of the staff feel like the cap fits then it probably does. On the other hand, there might be many who feel like it doesn’t regard them and they are the ones who should take a second glance at themselves.

I find it particularly sad that one week at a Swedish ward in Jönköping can teach me more that I have learned here in months. I am sad to say it has everything to do with the second problem. Not only was I met with a friendly and kind regard there. First and foremost I was met with a number of people who loved their jobs. People who treasured what they did – every single day, as well as the next day… and the next!!

A significant part of the problem is communication. I have no idea if it is only communication between patient and staff that is running anything but smooth. But the way I see it, staff to staff communication has a lot to be desired. There is no continuity in the treatment. And nobody takes responsibility for the lack of such. It seems to me that everything happens haphazardly. As a patient I feel lycky when some random nurse tells me something useful about my treatment. At the same time I can’t help thinking what other things I ought to have known months ago. I have been met with this sort of perfunctory approach ever since I started as an outpatient many years ago. It is, however, not good enough when one is receiving lifesaving treatment.

I have reached a point in my treatment where I feel almost feel lucky to have survived so far. I have been taught that I can only trust myself and the knowledge that I am able to retrieve myself when I need a deeper understanding of my disease.

Therefore I feel the need to demand that things are progressing in a way so I can come home ASAP. I expect that visible progress is made every time I come in and not every 3rd or 4th week like I experience now. I will see it as a failure if I am not home in less than 4 weeks. I know that it on average takes about 6 weeks to teach a home dialysis patient abroad.

I have to admit that time has made me more and more disappointed in the way things are done in the ‘limited care’ unit. In the beginning I had a positive view of the nurses here. But as things have progressed my experience has been that things are not all that different from the way they happen at the rest of the ward. The result is that I have become gradually more nervous for coming in for my treatments. It was a vain hope of mine that you had somewhat more insight into what ‘patient empowerment’ is all about. I learned the hard way how management had the impression that they knew and used the concept. But it has been made blatantly obvious that it was nothing but a ‘cheer’ – something that is used to pat each other’s back and mutually affirm that you are doing oh-so-well. ‘Patient empowerment’ has become the healthcare version of ‘bullshit bingo’.

I am always willing to enter into a dialogue about these issues. But as things are standing I am ready to call it quits. On several occasions I have tried to reach out to staff members but the majority of them are surprisingly indifferent. I ascribe it to a pervading problem on the management level. I have observed how we as patients are being tossed around amongst doctors, nurses and other staff without the slightest hint of continuity. I have mention it to a few of the doctors as well as complained about it to management. And with a few outstanding exceptions they just couldn’t  care less. After all, what do patients know about their own situation? When was it ever decided that anyone should listen to them? In the end, most of us are here to make a living. Long live the sausage factory[1]

I have two distinct goals with this letter. First and foremost I just want to have dialysis at home as quickly as possible. There is no reason to hold my hand any longer. Believe it or not, I am a big boy now. The other reason is that I thought you needed a wake-up call. There are simply too many wrenches in the work. And if you have any aspirations to enter the 21st century then it might be time for you to find out what ‘limited care’ actually means – both according to the dictionary and the more pragmatic understanding of the term, not least of which includes the understanding of the term ‘patient empowerment’ with all that it includes.

Finally, please allow me to point out that I do have extensive knowledge in this field. Since my time at university I have worked with ’patient empowerment both in the somatic and the psychiatric field. Therefore I will also make it quite clear that I have yet to see staff members (with a few brilliant exceptions) who know what the concept is all about – let alone use it in their daily situation.

If for some reason you cannot live up to my very reasonable demands about dialyzing at home, please tell me how to go about it. I strongly insist that it will be done.

Kind regards, Henning Sondergaard”

This letter might be a polemic and harsh critizism and a little on the controversial side and I am sure I have attracted a few enemies with it. But my point is pretty simple. This is my life we’re talking about. It’s not my job. I know it’s their job (and quite honestly, most of them suck at it) and as I say, I think most of them should go find something else to do because they neither are enjoying it or good at it. This is what do or die but it is only what they do to make a living, and that is the crucial difference.

So how was it received? Well, I am sad to say: “As expected.”  The head nurse got back to me after a while and her reply was this: “We all know that’s how you feel. So let’s see what we can do to get you out of here.” I can’t even begin to describe the level of indifference. It would have been more honest of her to say ‘so what? We don’t give a shit, so go home and live your life’ or any other direct brush off instead of this passive aggressive ‘we know you’re hurt so let’s get rid of you and the problem that you pose for us by being interested in your own treatment’

To me it’s like poking somebody’s eyes out so they can’t see how you broke their leg and then telling them everything looks fine and the pain must come from something else.

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[1] In Danish the term ”sausage factory” points to the fact that many service industries have turned into factory-like industries in the last few decades. I don’t know an English term for that sort of thing and at the same time I am pretty fond of the Danish one.