Today, a patient died. Superficially, one could say she brought it on herself--she was an alcoholic who died of liver failure and secondary renal failure. Her common law husband cared for her better than anyone else could. When she was belligerent, he was tolerant. When she was incontinent, he cleaned her up. When she was confused, he made decisions. He gave her medications. He transferred her to her wheelchair and transported her to dialysis three days a week even though he had sciatica and could barely walk himself. In the end, he had to stop working to stay with her full time so he could watch over her and attend to her every need. He barely had time to sleep and was exhausted all the time. For his commitment, he faced derision and scorn from the medical establishment. His questions were left unanswered, he was repeatedly kicked out of dialysis, hospital rooms, and doctor's visits. Even this morning, while his loved one was dying in the ICU, the nurse who came on the morning shift threw him out of the room saying visiting hours did not start until 11am. The patient died at noon.
During the last few months, the husband would come by the office at least 2-3 times a week. My nurse and I would do our best to figure out what was going on and what, if anything, we could do. Most of the time all we could provide was a bit of moral support and answers to some of the easier questions--Why is her ammonia level going up? Should I increase the lactulose? What about the diarrhea? But much of the time there were no answers--Why didn't the nephrologist talk to you about these labs? Why did the nurse just shut off the bp monitor instead of alerting the doctor that the bp had dropped so low it was no longer measuring? Why did the ER send her home if she is not alert enough to make any decisions about her own care? Why is the next appointment with the specialist 6 months from now?
The husband's main concern over the past few months was to make sure that he did not do anything wrong. His biggest fear was that he would miss something and she would die because of it. All the while, the chaotic, uncoordinated and careless medical system was constantly ignoring things and allowing her to sicken further.
When the health system loses its ability to care, something is dreadfully wrong and it needs to change. I can do my part to help my patients in my own way, but when my patients leave my medical home, I have to be able to rely on others to care for them as I would, or even better as my patient's husband would. Healthcare is a compound word; one part cannot exist without the other. I think too often we forget this in our busy health businesses, and it does not serve the patients or the healing professionals well.
John Brady, MD, FAAFP
The Village Doctor
It is hard to believe what I hear, what you write. The person he loves is dying but get out visiting hours do not start til 11.
I may be very tired right now sitting in an airport little sleep for a few days but, if I cannot stand that story, tired ornot, I mean- how can he?
Posted by: Jean Antonucci | March 24, 2009 at 09:35 PM