Let’s talk Treatment Adherence

[paul-met-debbie]

Adherence, compliance: I am fine with any of these words. Compliance for me means being in touch with what is. Non-resistance. So that’s fine in regard to every aspect of reality, also to the normal and special needs of the body. But for the sake of clarity lets call the correct following of a prescribed method of disease-treatment “adherence”. It is then easy to understand right away, that compliance in my book can even mean non-adherence. Let’s go from there.

I had already read the studies you mention, thank you for the references. I am not surprised by the results. Of course when the management of the body is so elaborate and sometimes complex as in the case of a body with cf, reality can not be caught in a model called “rules to follow strictly” and counted as a percentage of “failure or succes”.

This compulsion of the human mind to measure everything, naturally produces unreal or vague results (30-70% is hardly some result I would want to report proudly). If fishermen would all go out to sea using fishing nets with a mesh of 2 inch width, we would all believe that all creatures of the water have a width of 2 inches or more. Thereby disregarding 99% of underwater life. Equally, there is a lot of underwater life prospering in the ocean of cf patients and their daily routines that can’t be caught in the nets of physicians, psychologists or beancounters.

So if you try to catch the complex reality of cf patients taking their daily medication and doing their daily therapies by comparing it to a theoretical ideal model of prescribed instructions, you are going to find a lot of discrepancies. You can call these “a failure to adhere” or see it for what it is: practice and theory are never the same and life is inventive and volatile. The discrepancy per se does not mean that the patient is doing anything wrong. Only that he/she is doing things differently than what’s on the paper.

Having said this, my reality is that of course I deviate from any model-treatment constantly to cope with the day-to-day, sometimes hour-to-hour changes in the condition of my body and its needs. I consider model treatment (protocol) simply not subtle enough to apply to a system as delicate as my specific body. So adherence is not even a target per se. I play with the possibilities of medication, training and therapy, constantly finetuning the momentary requirements. One day I take more enzymes than another. I have changed my antibiotic therapy several times past year, both switching to other antibiotics or trying out different dosages of the same – not necessarily in accordance with the standardised dosages. I nebulize twice a day, but the length of the session is variable and depends on how clear my lungs feel. There are days that I don’t take supplemental diet nutrition, and days that I take several bottles, depending on my other meals. I also finetune my anti-inflammatory medication to the needs of the moment. My fitness training as well is dependent on the needs and form of the day.
I don’t count the number of breaths I take nor can I influence the minutes of deep sleep my body takes. There is a lot of surrender and automatic healing going on, more than adherence to any protocol could invoke.

Regarding “my” conscious input: this is being done to the best of my intuition and the knowledge I have from experience, self-study and my doctors. Guilt or shame do not come into it. Like you, I don’t do this for any person, I never did it for my parents, not for my doctors and not even for my own person. This is purely a thing of well-being of the body. There is no real doing in it. The body is served what it naturally needs. That’s compliance. I don’t always succeed and sometimes forget things. Often the available knowledge is insufficient or questionable and an experiment is in order. This is only natural. Even if I would purposely disregard my body (this hasn’t happened much), still this would be entirely up to me without shame or guilt or anyone to answer to. The body will answer me, and I can choose to listen, or not. But natural demands of the body find an attentive ear with me.

That does not mean I will always concur. I can imagine a situation where the body wanting desperately to survive and my “being” nevertheless will find another response. For instance I don’t see myself ever pursuing a lung transplantation. I am even not sure whether or not to start trikafta. There is more to the body and life than lungs. There is the entire body to consider, the bodies of others and there is wholeness in which everything naturally has to run its course. Also in these cases adherence to a theoretical scheme is non-applicable.

Another situation where adherence doesn’t work for me, is when treatment has no, poor or only fictional results. Generally I don’t like so called preventive medicine – only if very strong evidence (long term meta-studies) is available I will look at it. Or when a medication has a high NNT number I feel very reluctant to try it – and if, only for a short while to test its effectiveness. I don’t think any approach that is mostly based on protocol or statistics should be applied with a disease like cf that presents itself so uniquely in every patient.

A different thing yet to consider for female patients: most known medicine is based on the male human body model. Only small allowances are made for body weight and then the results of scientific research are applied one-on-one to the female body. Only recently awareness is growing that this is at least a questionable, possibly even a dangerous practice. This puts adherence in a completely different light also.

To conclude I would like to say that the question should not be: to what percentage is this patient adherent to his/her treatment protocol? The question should be: is this human being and the way he/she lives with the disease in touch and compliant with reality? This is a much bigger framework and requires a much more holistic view, that deserves to be found and respected before anything else. Try to find a doctor who supports and understands this.