On TV these days there are plenty of advertisements for medications. It is hard not to notice the long disclaimers at the end. Do not take if a, b, c, d! Notify your doctor immediately if you develop x, y or z. Who would take any of those medicines after they hear all that? When put in perspective, it is a very small percentage of people on these medications who develop the side effects. But the companies are required by law to inform patients with the disclaimers so they can make an informed decision.
Recently, while taking care of a mesothelioma patient after surgery, we talked about the balance of information. How much do you want to know versus how much you are told. What was the right amount of information for this patient?
Full disclosure is important so that people can weigh their options. Knowing from the outset that if you choose to have surgery, it will involve pain, it will be difficult, unpleasant and exhausting. You may or may not have a breathing tube in your mouth, a tube in your nose, tubes in the sides of your chest, and even a tube in your bladder. That it will be in your best interest to do things that you do not want to do, like walking. You will be restricted in your fluid intake. These are the basic facts. Not all of them, but important ones, about your surgical experience.
Should there be a lengthy disclaimer listing all the possible things that could go wrong? Would you feel better knowing all the possibilities ahead of time?
In my experience, most people want to know what is going on with them and their loved ones. They trust that there will be open communication and that everyone will do their best. It would be impossible to list all the possible scenarios that might happen before, during and after surgery. Everyone’s experience is unique.
Anyone with a question today about just about anything turns to Google to find the answer. During your mesothelioma journey, the information you find may or may not be pertinent to you. Sometimes the information can be confusing and complicated and not in the right context for your particular situation. If this happens to you or your loved one, ask your mesothelioma team. The journey with mesothelioma is a team effort, and hopefully, with open communication you will find the right balance of information, to make informed decisions.
My patient had found her balance, she and family members could concentrate on recovery, knowing that for her and her family, she had enough pertinent medical information, in the right context, to make her decisions.
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