The Unengaged: I'm not going to sugarcoat this one. If you are employing people to either take care of other people or be a medical part of the donor evaluation process, make sure they believe in what they are doing. Otherwise you know who gets the short end of the stick? The patient. The donor. I'm not suggesting you fire anyone who shows a degree of apathy. Coach them. Mentor them. Show them how to be better. Watch how they are doing their jobs. Tell them how they could have done it differently. Teach them how to embrace change.
I fully understand that non directed donors like me (in Canada) are rare and new. I understand for some doctors it's a test of ethics (are they hurting one person to help another?). And I am okay with that-in fact I am thrilled that many doctors are taking time to reflect on their concerns and uncertainty-that always makes us better at what we do. But figure it out before you bring it into the room with the donor candidate. Do not project your doubts on them and make them feel foolish about wanting to donate a kidney. If during my visit with Dr. N she had just been honest that she had some uncertainty with living donation vs throwing big words and condescension at me I would have left that meeting with far more respect for her. And I wouldn't have felt so crappy. Same thing goes for some of the people working in the trauma ward. I know you didn't know what to do with me and I know I was outside of what you were used to. Heck, I even had my own gaggle of doctors you'd never seen before. I am sorry that I was an inconvenience to you. But that should never have been my problem to deal with.
Communication Breakdown: If a patient has major surgery and there isn't someone in the waiting room...waiting...for new of how things went, question that. Make that someone's job. And even better, if several people on staff promise that a call will be made to a patient's family contact, make the call. And finally, if you are the nurse, who find out from the panicked patient that no one called her family and that patient asks for her own phone while barely out of anesthetic and on morphine, offer to help her (above handing her the iPhone).
The other big one was the no blogging or social media "rule" enforcement. It might have been good to do a more in depth check with Canadian Blood Services to be sure you were delivering the right mandate. I am confident though that learnings have been taken from this incident and hopefully things of this nature will be handled better in the future.
Anonymity: This should not equal "not existing" to people who ask for a patient by name. This should not mean scowls from nurses when people send flowers.This should not equal conversations about me in hushed tones when I am in the same room. And if it has to be this way, tell people up front and get your lists and rules in place before admitting the patient. Don't add new rules and regulations every day.
Jello: Just get rid of it or have options for the pour souls that are on whatever diet classification involves clear fluids etc. Do a poll...you'll be hard pressed to find many over 12 who admit to liking jello and I bet the number dramatically goes down if it's what's for breakfast (paired with vegetable consomme).
The admitting process: I found it very "do it yourself". Having to find the right building, the right floor (admitting file in hand)...that was all a little weird. The package I received in the mail was full of pages and pages of information that didn't help me prepare for my experience and I've found since the surgery I wished there was more relevant info as to what to expect post surgery-for this specific kidney donation surgery. Oh and you might want to update your "what to bring" materials if they reference Walkmans. I'm just saying. Another great option would be to have it online so that a patient can easily access the info before and after and search for info related to their particular questions. I'd be happy to write that for you (that is an offer, not sarcasm).
There are a few other things I think could be improved and as the program knows, I'm open to discussing what worked (a lot) and what didnt (and we already have discussed a few items). It is a new process-so in many cases I understand I was a test case and they are learning from me. But somethings I experienced I think would still have happened regardless of why I was in the hospital.
Live and learn right?
I am always ready to learn although I do not always like being taught. ~Winston Churchill
