In an earlier column, I suggested that you bring someone with you to the hospital who can watch out for you when you can't watch out for yourself.
Why would you need an advocate? Consider what Dr. Jerald Winakur wrote in the journal Health Affairs a few years ago:
"Three years ago, my father, a longtime heart patient, had trouble breathing and complained of chest pain. He was admitted into the hospital with congestive heart failure. This is the hospital in which I have made rounds almost every day for the past three decades. ... The CEO is my friend and patient. My father's physician is one of my young associates, well-trained and eager. I was confident that my father would receive the best medical care he could get in America today."
He continued: "Yet I would not leave him alone in his hospital room. During the day, if I or my brother or mother could not be there, I had a hired sitter by his bed. ... It is almost a miracle that any elderly patient gets out of the hospital today relatively unscathed."
The same could easily be said of younger patients as well.
Advocates can help ensure that you get the correct tests and treatments - the ones your doctor ordered. They can raise the alarm if something seems to be going wrong but no one appears to be taking the problem seriously enough. They can take notes and help make sure that the right hand knows what the left hand is doing.
Ideally, you will choose a handful of people who can arrange among themselves for one of them to be with you all of the time that the hospital is willing for you to have visitors. Depending on your situation, you may or may not be able to have someone stay with you overnight.
It's best if you choose people who can be polite but assertive and who are good with details. Someone you love dearly who is very dramatic and entertaining - but who gets bored after 10 minutes if he isn't the center of attention - is probably not the best choice. You will need to rest at times. It will not help you if your advocate is noisy or disruptive.
If you know that you will be going into the hospital, talk with your doctor and the hospital. Explain that you would like specific people whom you name to be able to ask questions and get information from the doctors and nurses taking care of you.
Ask what paperwork you need to provide so that your request is honored. You may need to sign a form called a HIPAA release or waiver. HIPAA (Health Insurance Portability and Accountability Act of 1996) is intended to protect the privacy of your medical information.
Sometimes, doctors and nurses say that HIPAA prevents them from talking with your family or friends about your medical condition. That statement is not accurate in this situation. For more information, go to www.hhs.gov, click on "Regulations" and scroll down for HIPAA privacy laws.
Following are five steps an advocate can take:
- Write down questions, concerns or observations in a notebook. Then, whenever the doctor or nurse comes in, it will be easy to remember what to ask or tell them.
- Write down all of the doctors' orders in your notebook. These may include orders for medicines, tests, and for other care. Look at the patient's chart regularly and have someone explain what it says. Then, when anyone comes in to administer medicine or a test, you can check your notebook to confirm that it's what the doctor ordered.
- Follow up with the doctors or the hospital staff about any unmet needs or open questions. For example, it's common for people to be malnourished in the hospital. This problem can delay healing, contribute to delirium, and increase the risk of dying. If friends or family members see that a patient isn't eating, they can raise this issue and ask for a nutritionist's evaluation.
- Help the patient manage being in the hospital - make sure the call button is in reach, talk or read to him, or simply be a comforting silent presence.
- Observe how the patient is doing and call for help if he suddenly seems worse.
Two books that offer more information about what problems to watch out for are Protect Yourself in the Hospital by Thomas A. Sharon and How to Survive Your Hospital Stay by Gail van Kanegan and Michael Boyette.