Based on my experiences, I have come to believe that it is important to either have an advocate or be an advocate for yourself if you are ever treated in a hospital or managed care setting. I feel strongly that no one should ever go to the hospital alone.
The following was written by Dr. Nicky Pipkin, a cardiothoracic surgeon who has metastatic colon cancer. He recently moved to another state after retiring. At his former workplace, he was able to receive care for his condition from providers who knew him. Now, he doesn't know anyone and is experiencing what many patients experience. Dismissal, frustration, and the inability to gain access to timely care.
For those patients seeking to empower themselves, consider Dr. Pipkin's unique perspective on this topic.
"The empowerment of patients is very much like gaining power by any other individual in any other circumstance. There are definite ways that it can be done. Most commonly discussed is power which is gained by knowledge. That knowledge can be gained by training, education, experience, or all the above. The internet has provided much information to patients that was never available before. This has indeed enhanced participation in the decision-making processes associated with their care. The more you know about your disease, the better you can direct your care in the way that is best for you. In certain situations, the loss of control for a patient can be very depressing. Knowledge about one's options, pathology, pathophysiology, etc helps a patient gain back some of that control.
Another way of gaining power is to borrow, so to speak, someone else's. For instance, a patient may say, "My daughter is in the healthcare field and she has advised me not to undergo this particular treatment."
When I first present to a healthcare facility for evaluation, I prefer not to mention right away that I am a thoracic surgeon. I have several reasons for that. Usually it comes out as the first level providers review my medical history. It may also come out when they interview me personally. Frankly I don't mind if they ever realize it, so long as they talk to me intelligently and treat me with respect. If ever I begin to sense I'm getting the runaround, or they are talking to me in a condescending manner, or not listening to what I tell them is an important point, then I began to let it be known I'm in the healthcare field. The effect is dramatic. Usually they speak to me in a higher level of communication. Usually they listen to me when I tell me something is important and something else is not really important. Interestingly, usually every subsequent person that comes in the room already knows I am a thoracic surgeon. Word gets around fast. And yes the power that that title brings enables me to avoid unnecessary delays in scheduling tests that I know are critical. They know (or assume) that I know what is right and wrong and that gives me huge influence over my care. Of course being impolite or arrogant in that situation, imparts an adverse influence. But trust me, knowledge is power.
So how can we be empowered? What about the idea of a patient advocate, a medical patient advocate such as an RN or even an MD (retired) who can ask the questions a patient could never think of. In other words, the patient borrows that provider's power because they have more knowledge than the patient does or can hope to achieve in a short amount of time."