I have written previously about Patient Centered care, health care that establishes a partnership among practitioners and patients, where the patient is respected and has input into his or her care. Seems like a fairly simple concept but, as you will see in this post from my friend and fellow PwP Alan Zimmerman, patient involvement was not wanted during his recent hospital stay and any attempts to get involved were discouraged by doctors at the hospital and the VA.
Alan is a member of the Parkinson’s Foundation Patient Advisory Council, advocates with the Public Policy group at the Michael J Fox Foundation, maintains a couple of Facebook group pages on PD, and somehow finds time to serve as president of the local East Tennessee support group, PK Hope is Alive. His recent four day stay in a local Knoxville hospital prompted this post on the support group website:
“I spent four lonely days in a brown L.A. haze” from “Come Monday” by Jimmy Buffett
In other words, I was in the hospital for four days and three nights.
There is good news and bad news. The good news (from some perspectives including mine) is that i am still alive. The bad news is that PwP seem to be thrown into the “One size fits all” bag. Oh! Almost forgot. There is even more good news: The nurses were fantastic (with one exception).
As many of you know, I’m fairly knowledgeable about most things Parkinson’s. That piece of trivia probably worked in my disfavor.
Intellectual curiosity? None noticed from Dr. Wong. Did he do any extra reading or look at a few PD studies? Not that I could tell. I even asked for a neurological consult but was ignored. Evidently this doctor already knows everything.
What gives a mere patient the right to come in here and challenge what we do?
Learn anything from the patient – no way. The patient could not possibly know anything because they do not have a MD or DO behind their name. Only those that do are considered worthy. At least that is the attitude that came across from one doc.
Don’t ask me about delivery of medications. Unless of course you are interested in an illustration why PwP dread hospital and time spent in the ER. Had my particular form of the disease been different, I could easily have found my way to the “crazy ward.” Why? Because I would not have received my meds on time and could have suffered a severe reaction.
Why? Because medication delivery was so very hap-hazard. You will get it when you get it. You are on our schedule now. We have you captured.
“You can check out any time you like, but you can never leave!” from “Hotel California” by the Eagles.
And speaking of meds, Dr. Wong gave me three days worth to last me until I could see my primary care physician. I got lucky (kind of) in that I was able to make an appointment to see Dr. Mistry at the VA. Whew! Or so I thought. Of course, by the time I get the meds through the VA mail order system, I should be well.
I even copied research on Blood Pressure and Parkinson’s Disease for Dr. Mistry. I figured it would help her treat me. Since some PwP have BP that fluctuates significantly (as does mine), one cannot treat it as high or low except when carefully and frequently monitored. Dr. Mistry refused to even look at the research I provided. Intellectual curiosity seemed non-existent.
I also discussed the “Outcomes Project” sponsored by the Parkinson’s Foundation. With over 10,000 participants, there is a whole lot of data. I only told her about a portion which includes developing a treatment plan by three physicians discussing the patient. The primary care physician, a general neurologist and a Movement Disorder Specialist should all talk to each other in ordser to provide for the best patient outcome. She was quick say that idea is worthless.
I’m at a loss. I have no idea where to start nor how to convince.
Good write up of the situation and good information regarding the critical need for timely meds by the Parkinson’s patient. I do not suffer the disease nor any of the other diseases that require medications routinely and timely so my med taking isn’t critical. I do however live with a diabetic who must also stick to a timely regiment of eating and medicating. We have had the “misfortune” of spending countless hours and days in many different hospitals with the emphasis on many. I am convinced of one thing. Once placed in a room for overnight visit(s), all bets are off. Unless you carry your own private nurse with you (ha!) and she is prepared with the meds you need and the timely dispensing of, you are not going to have much luck in meeting your needs and requirements as it comes to punctually getting a med at a certain time. Now if you have your private nurse with you, but haven’t sneakily brought your meds with her, she must go to the nurses station and once again state the urgency. And she can even speak to the head nurse. And that might serve to make it a little closer to your deadline, however, if it doesn’t happen and my guess is it won’t, you will wait until it works into their schedule. They are not trying to be arbitrary or contrite, they just do what they can as they can. And this is not to say they aren’t good nurses. It is not to say its not a good hospital. But it is to say I know of almost no instance where you don’t have to wait for their schedule. So, reflecting on what you can do as a patient with Parkinson’s, or even diabetes, is to carry at minimum on your person, one or two of the pills you absolutely must have. Now you will of course need to exercise discretion and not disclose this (hopefully you have an advocate/friend there with you that could easily bring what you need with them and after you’re checked in, can hide it away for the time the nurse doesn’t get there when you need it. ] Just a suggestion from someone that would love to fix the problems that seem to come into play whenever things are going south on us. Good Luck and pray something helps.
It is certainly true that PD is not the only illness with a need for medication to be On Time / Every Time while hospitalized. Thank you for your comments.