Recently, I have published two posts in Swedish about a phenomenon I call healthcare violence. I want to share my thoughts on this with all my fellow chronically ill and disabled people, not only those who understand Swedish, and therefore I have written a summary in English. Please be patient with typos, spelling misstakes and incorrect grammar. The original posts can be found here and here.
Healthcare violence is a term that I use to describe when treatments, examinations or assessments harm patients, but the harm is not acknowledged and therefore often repeated. For instance, a patient is harmed by a treatment but the injury is not documented in the patient’s medical record and healthcare professionals act like it did not happen. The core difference between a medical injury and healthcare violence is how healthcare professionals take – or refuse to take – responsibility. When for instance a nurse or a doctor take action to prevent the harm from being repeated, both to the individual patient who suffered the injury and to other patients who potentially could end up being harmed in similar circumstances, it is not violence, even though the consequences can be very severe. Instead, healthcare violence occurs when harm is inflicted on a patient but healthcare professionals refrain from stopping it.
I choose the term “violence” to highlight that the harm is a consequence of healthcare professionals abusing their power. For instance, by not documenting negative outcomes of a treatment, patients risk being forced or pressured to go through the same treatment again in the future, ending up even more harmed. From many discussions with other people with the disease ME (myalgic encephalomyelitis), I have learned that I am not the only one with this experience. In fact, it is a sadly common story. Some of us have been incorrectly diagnosed with depression or exhaustion syndrome (burnout) and therefore been talked into trying cognitive behavioural therapy or physiotherapy. Some of us have been correctly diagnosed with ME but being talked into the same treatments anyway, despite a lack of scientific proof for its suitability. When our symptoms get worse or new symptoms occur and we end up permanently injured by the treatments, healthcare professionals do not document it. Later on, when we see a new doctor, or when we are being assessed by our social insurance agency, they suggest the same treatment again. Since there is no documentation of the worsening of our condition the last time we tried, we are more or less forced to undergo it again. If we don’t, we risk not getting any other medical help and/or losing the financial support that is supposed to be provided by insurance.
There are more examples of healthcare violence. As stated above, the core is that harm is being inflicted to a patient because healthcare professionals refrain from taking action to stop it. Sometimes it happens because patients’ reports of worsening of symptoms are ignored, sometimes it happens because healthcare professionals lack knowledge about a disease or condition and instead of reading up on the disease or condition, they give patients a inappropriate treatment based on prejudices.
As a patient with ME (and a couple of conditions that make my healthcare situation complicated), I am one of all the people with the awful experience of being harmed by healthcare. By calling this phenomenon violence, I wish to highlight the power dynamics operating. It is an inconvenient fact but it is still a fact: Healthcare professionals are subjecting us to violence by causing us harm through the abuse of power.