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FDA
FDA Consumer magazine
May-June 2003
Table of Contents
By Roxanne J. Goeltz
Our health is as much our responsibility as it is our doctors'. It is time to share that responsibility and for the medical profession to encourage and help us in our efforts. We will not be perfect, nor should we expect to be, but we must begin to make our health care journey as safe as it can be.
We need to be a partner in our care, and those of us who have tried are labeled as difficult patients or aggravating family members. Do not accept this label. My friend's mother suffered brain damage because no one wanted to listen to her "overreacting" daughter. No one listened when my friend said, "I cannot wake my mother." She was told that her mother was tired and needed her rest. And in the 36 hours that my friend decided to take a break and leave the hospital, her mother sustained three falls.
This is not a failure of the nurses on duty or the doctors on call. It is a failure in a system that does not provide enough support for those working in it or being cared for by it. A system that has allowed errors to be buried and therefore repeated, instead of learning from them. A system that has not considered how valuable input from the patient and family can be in making it safer.
My brother Mike died three years ago of medical errors after being admitted to a hospital with severe stomach pains. The official cause of death was "blood around the heart," but no one can answer the question of how it got there. Mike's lack of knowledge of specific health problems in our family history and the unwillingness of the medical profession to listen to our requests contributed to his death.
I took one lesson from Mike's death and that is: You don't stay in a hospital alone. I encourage what I call 24/7 care, which is someone in the hospital with you 24 hours a day, 7 days a week. I do not encourage 24/7 to catch a doctor or nurse making an error. I encourage it to help prevent errors by being a partner in your care.
Nine months after Mike died, I had the opportunity to walk the talk.
A tumor was discovered in my chest cavity and I needed surgery to remove it. I set up a network of family and friends and asked them to be partners in my care. They worked with the health care professionals, making my stay as comfortable and safe as possible. They knew the medications I was on and would verify the information when the nurses gave medicines to me. The nurses were happy to answer their questions because we acted as part of the team, not the family police unit checking on them.
In the hospital I suffered from a blood clot traveling through my heart and into my lungs and was put on Coumadin, a blood thinner. I was scheduled for a second surgery three months later and needed to come off the Coumadin for the surgery. In my appointment with a doctor specializing in blood thinner therapy, we discussed the process of getting me off the drug. I needed to give myself shots and I carefully noted the doctor's instructions.
I went to see a nurse just before the surgery to go over the schedule for my shots, but it was different than what I had written down from my doctor's visit. Did I misunderstand the doctor? I mean, she was the professional and I must have gotten it wrong. The "old" me would have let it go, but after my brother's death, I struggled to become a partner in my care, and this was one of those times to speak up.
She was not happy that I questioned her and began reading the doctor's notes. It was then that I realized how she could have misinterpreted his written instruction. I pointed this out and she offered to check with the doctor to make sure. She called me later and said my understanding was correct.
Remember, this is not about catching someone in an error. It is about being a partner in your care and sharing the responsibility. I wasn't telling her how to do her job, but participating in making sure the care I received was the best and safest possible.
Roxanne J. Goeltz is president of Consumers Advancing Patient Safety and one of the founders of the Patient and Family Advisory Council sponsored by the National Patient Safety Foundation.