Respect. It’s like the Aretha song. R-E-S-P-E-C-T find out what it means to me…
Well, to me it means understanding that I’m not the generic patient. What works for the “majority” of patients doesn’t necessarily work for me. I am a unique individual, with my own unique DNA, my own unique chemical structure and I may react differently than expected to a certain treatment or medication. It is understanding that I may not fit the cookie cutter mold of what a certain patient “looks” like. And this applies to my family as well as my docs.
It also means respecting my intelligence, my decision making abilities and my goals of care. In hospice, the focus is always on what the patient wants, what the goals of care are, how we can achieve what the patient desires. I think that should be applied more to medicine in general regardless of setting.
For me, my goals mainly consist of maintaining my vision. Keeping my pain and fatigue at low levels. Maintaining the ability to work at least part time. I know my limitations.
I just wish the medical community would take this into consideration when starting a treatment. Think outside the box. Be more holistic. Understand and respect the patient as an entire person, not just a body. That is what respect means to me in this context.