It’s all about communication
This post is in response to a comment I got from a reader a few days ago.
Complications happen. Any time you subject yourself to any kind of medical procedure you are exposing yourself to a risk. It’s a small, calculated risk but it is there. Complications can be handled well or badly. There is a growing body of evidence that suggests that most patients will understand and forgive a complication as long as they get a good explanation and follow-up from the attending doctor. That is, the main guy. The guy with whom the buck stops. Once you start involving a bunch of other surrogates you get into trouble.
I’m going to use my reader’s example to illustrate this point. A patient has what is colloquially called a “pain pump”. This is a device implanted in the body of patients with intractable pain that delivers drugs directly into the fluid surrounding the spinal cord, blocking pain impulses from passing through. It’s not a common device and requires a pain specialist, usually and anesthesiologist, to put it in and manage it. It’s a dangerous device. Things can go wrong. The drugs are powerful. The device is complicated. The number of people who have to understand it is long. Consider: the doctor who put the pump in, the surgical team that helped, the pharmacy that compounds the drug to be delivered, the person who programs the pump, the person who gets the drug from the pharmacy, the person who refills it, the pain clinic that manages it, the nurse who answers the phone when there’s a problem. There’s a whole chain of people and communication can break down at any point.
Then the patient gets a complication. Drugs supposed to be injected into the pump are instead injected into the skin surrounding the pump. Patient ends up in the Intensive Care Unit. There’s not enough time in the world to list all the links in the communication chain that are added when you start getting the hospital people involved. Especially in a patient with an uncommon problem and unfamiliar device.
As a patient or patient advocate you don’t have alot of control over this communication chain. You can, however, make it shorter for yourself. Go to the top as much as possible. In the above example, the go-to person should be the pain doctor, the ATTENDING pain doctor, the head guy. He/she should know everything about you or your loved one. If she doesn’t, or abdicates this responsibility, go to the ICU attending. Stalk him/her. If they round at 5 AM, be there at 5 AM. This can be a problem because ICU attendings in large teaching hospitals tend to change every week. Or go to the nurses. Find one you like and get your information only from him/her. Don’t try to get information from the night nurse, the resident, the intern, the orderly, the person on the other end of the phone, or the the per-diem nurse who usually works in a different unit.
It is up to the health care professionals to make sure communication works. Sometimes you’re the beneficiary of this and sometimes you’re the victim.