Surviving the hospital: Yesterday I brought my Dad home from the hospital. He insisted on opening doors for me and for others as we found our way to the parking garage. He was disappointed he didn’t have surgery. In the 2.5 days he was an inpatient at the teaching hospital he was seen by a total of four doctors, two nurse practitioners and one physician’s assistant all at different times and mostly asking us what the other providers had said (not quizzing us–they really didn’t know). It was confusing for my Dad who kept getting his hopes up that they could do cardiac surgery and fix him up. I was his health care agent and tried to be his advocate. It was exhausting to help him wade through it all. I realized just how messy these “breakpoint conversations” are for everyone and how our health care system really is not set up to help facilitate them. For instance, in a hospital there really is very little in the way of real patient privacy. My Dad had a shared room with a cloth curtain between the beds, which were three feet apart. Without really wanting this information, I now know all of the roommate’s medical conditions
and major family situations. He knows ours. I was uncomfortable having the difficult patient/family/provider conversations we were having knowing that Dad’s roomate and his wife were listening. I know it changed what I felt like I could say and ask. At the climax of the main conversation with Dad’s cardiologist (when he was telling Dad his heart was like the engine in an old car–unreliable except to run around town perhaps), the roomate’s colostomy bag exploded and his breathing/forced air machine started beeping loudly. Somehow the conversation continued even though no one could breathe or hear anything. I understand that exploding colostomy bags happen and things hit the fan and you can’t control situations, but this was on a ‘regular’ medical floor and not in intensive care. Surely clever engineers/designers can come up with solutions to the space and privacy issues in hospital rooms, even if they have to be shared rooms. My Dad was ambulatory and the doctor could have taken us to a private consult room somewhere for this sort of conversation and I am sure that would have made it easier for everyone. I was going to suggest it at the time but realized there were no such rooms. I pushed for home nursing care for my Dad and that starts tomorrow–it can segue into hospice/supportive care when the time comes. I had to ask for patient education materials before we were discharged and there really is no clear plan for follow-up with anyone. The home health nurse comes tomorrow and I am hoping that he or she can help pull things together better than they have been so far.
