A friend of mine was just diagnosed with Parkinson’s disease. He saw two neurologists in the same practice on the same day. They both asked basically the same questions, conferred in the hall, and then came in and said: “we believe you have Parkinson’s”. I called that a dx-bomb or diagnosis bomb!
Any dx-bomb is bad enough, but when it isn’t followed with some serious Q&A, the dx-bomb can be emotionally deadly. For my friend, the dx-bomb was followed by: “we are going to put you on a new medication”. And that was the end of their medical care for the day.
Surely every adult has some vision of what it means to have Parkinson’s. Likely none of those visions are pretty. Doctor’s, perhaps understandably, feel they are finished when they determine the diagnosis. Unfortunately for patients, the doctor’ finish is their beginning. Patients are not so much interested in how the doctor got to the diagnosis but rather where the diagnosis will be taking them.
I think it is time that something is done to ensure that dx-bombs are always followed by patient education. I think it is time that patients receive help understanding their conditions and treatments rather than just being treated. Accordingly, I propose:
Patient Education Bill of Rights
All patients have the right to medical condition and care instructions:
- In their native language
- At their level of understanding
- That help them hear, see and understand
- That allow sharing and review of instructions with loved ones (i.e. electronic)
- Which identify what, when and how testing and care will be done
- Which identify what the patient needs to do, as well as when and how
- That include alternatives, risks and benefits of all testing and treatments
- With ample opportunity to discuss any questions with their caregivers
What do you think?