Henning’s Corner of the World: Doctor, Dear Doctor, You Don’t Get It All.

by Henning Sondergaard…

All over the Western world medical care in the best interest of the patient has been abandoned in the name of financial interests and cost benefit analyses. Long gone is the idea that the life and wellbeing of patients is what really matters to medical clinics. Interest in the patients has been replaced by a simple formula of what is most profitable for those involved – be it the clinic staff or all those in the dark corridors of the Medical Industrial Complex.

When I say profitable, I don’t necessarily mean monetarily (though that is the case in many instances) but equally the question of what kind of research is most interesting and/or promising has risen to the fore when it comes to what kinds of treatments a certain hospital will adopt – all in the holy name of “what we deem best for the patients”, of course. Now, that once again easily translates into “what is truly best for our coffers” with the hope that it actually also benefits patients; something that has been proven over and over again not to be the case.

This poorly disguised kind of utilitarianism is what floats the boats of most administrators and doctors because they (and we) all know, without money no clinic. And money does only in the rarest case come from sources that have the patients’ interests at heart.

Quite naturally most health care professionals don’t want to discuss this sort of thing – especially not with patients or caregivers. However, it’s a simple fact of the world we live in. Only a miniscule fraction of patients in the Western World can afford their own treatment so they rely on public healthcare or greedy insurance companies for their treatments.

This reliance on others is one of the many reasons why we should be very wary of the things we are told and the treatment we receive in general. No doctor can escape the fact that he is paid by someone other than the person he is treating. And I doubt that any doctor today can say he hasn’t experienced the bribery that happens on a daily basis in all the clinics and hospitals of the world.

It also means there is only so much doctors can do even if they are thoroughly diligent in their patient care. They will only be able to do whatever they are asked to do considering the constraints from administrators and drug companies. And what they are asked to do is often far from what is best for their patients – and they know it!

Of course they have the choice of doing what they know is best for the patient. And there are times where I have received treatment that was not kosher. But very often the result of such actions from a particular doctor will be that they are ostracized by their peers and their employers.

That is why we as patients have to become our own best health care professional – or amateur, if you wish. Remember that the root of the word amateur is connected to the Italian word, amore, meaning love in English.

In our day and age it is a requirement for us patients to be on top of our own disease. We are not only the ones who live with it. We are also the only experts on the exact experience of what it is like to have our particular disease in our particular case. Hospitals are good for testing, collecting data from lots of people, using statistics and finding all kinds of ways to use these data but unless you consider yourself and your disease part of a large statistical material that is far from enough.

Doctors and all other health care professionals will never be able to know our disease the way we know it. They are experts on biological issues within the human body. But that also implies that they see the human body as a system – or as I like to put it: a machine. This mechanistic view completely discounts the human life that we experience where our disease plays only a (small) part.

I do think it’s imperative to know all my lab results. I diligently collect them and compare them, both against each other. It is of utmost importance that we go have our tests and we talk to our professionals as often as it is humanly possible under the constraints the clinics adhere to.

I do think it’s of utmost importance to eat properly. I am constantly checking my food if there is something I am not quite sure of. I use a number of apps and homepages to do this. I talk to my kind and knowledgeable dietician, exchanging ideas and tips with her. And I have regained a passion for food and cooking after I started dialysis – because I am curious on top of wanting to do the best I can for my body.

But these things don’t mean a thing unless I am able to compare my numbers to how I feel on a particular day or at a particular period in my life. What have I eaten? How was my overall health? Was there complications not connected to my kidney disease? Did I get enough sleep? All these questions can only truly be answered by me. All the education and fancy talk of our health care professionals falls short when it comes to the complicated web of information that makes up my life.

We need to learn to see the subtle relationships between how we feel and what we can glean from our test results and our talks with both professionals and other patients who are (or have been) in the same situation as ourselves. Only then will we be able to have a better understanding of what is going on with our bodies, based on lived experience and not exclusively on an array of biological markers and test results.