And It's About Time There Was Some Support For Cushing's!
I added this category this week because we have learned a lot about how to communicate with doctors and other members of the medical team. Unfortunately, the days of the doctor with his black bag knocking at your door are long gone. There are complexities created by reimbursement, costs, technology and an overburdened system. This may be easy enough to put up with when you are generally healthy and you are dealing with a primary care office or pediatrician. But when you have a life-threatening illness contending with the medical system can add a whole layer of stress that no one needs. I've compiled a list of things to think/talk about when you are in a situation like ours and put them below. Please share this with anyone who might benefit. It really comes down to putting your cards on the table. I think oncologists might some times get stuck in a rut. It's cancer after all. You have to set them straight about where you are as a patient/family so that they know better how to meet your needs.
1. Tell me what you know about my disease in plain English, the more basic, the better. I'm not a health care professional.
2. Can you draw me a picture? - this is extremely helpful in getting an idea about what is going on. If they are reticent, you draw the picture of the human body and have them fill it in where the disease is etc.
3. If any kind of imaging is done, ask them to put it up on the light and explain it to you - this was very very helpful to us to understand exactly where the cancer is, how big it is etc. Often, they will try to interpret written reports - why? Because it is easier and less time-consuming. And maybe they don't think you are interested. But if you are interested, ask for this. For us, it helped us understand the situation better.
4. THIS ONE IS HUGE - what is the best way to access your office if I have questions. Who do I call? AND THIS QUESTION IS THE MOST IMPORTANT - how long should I expect to wait for a call back? If you are on a chemotherapeutic agent and dealing with side effects then 24 - 48 hours is not acceptable. A same day response is absolutely necessary because the key to a successful treatment regimen is staying ahead of the side effects.
5. Last, lay your cards on the table. Acknowledge that you have a serious illness on your hands and you know that, but let them know where you are as a patient/family. Everyone knows that we are not accepting this diagnosis as a signal to roll over. Anyone on our team knows that mom and Ilene and I are fighting tooth and nail. They know we are educated and with that comes lots and lots of questions. We tell everyone that right up front - WE HAVE LOTS OF QUESTIONS and that means lots of follow-up phone calls. It is funny, most doctors tell us it is okay if we have questions, but we get the distinct feeling that we are bothering them when we actually call with our follow-up.
1. Find out the doctor's e-mail address and use it. Sometimes they keep odd hours and they like the convenience of being about to answer your questions at their leisure.
2. If you aren't getting response leaving phone messages, send a fax. Faxes generally get high priority in medical offices.
3. Find out if the doctor works with an assistant. Sometimes getting through to the assistant is easier than getting to the doctor. Make that assistant your best friend.