Hospital visits are only rarely for fun events (like new babies) and they tend to be a combo pack of all of our worst fears – fear of a potentially frightening diagnosis and what that will mean to our lives, fear of physical pain or even death, fear of the unknown – all happening in a foreign place, with a foreign language, on an incomprehensible schedule. And it’s almost as scary for the friends and family of the patient who need to function as the patient advocate.
This is the first of three posts talking about how to survive a hospital stay. This one focuses on being the advocate for the patient, the next is for patients, and finally, one looking at hospitals and how to minimize risk.
The importance of being the advocate for a friend or family member in the hospital cannot be overstated. Patients are typically not at their best and they need someone to speak for them. They need someone they can trust, literally, with their lives. They also need someone to bring a sense of normalcy to what is absolutely not normal.
What the advocate provides in terms of safety and support cannot be valued. Just ask my friend Janet who had to physically restrain an orderly who tried to take her sister, suffering through the last 36 hours of her life, for gall bladder surgery scheduled for a patient with a similar name. Or try this NPR article that says new studies show that medical errors are the third-leading cause of death in the United States. Clearly, the advocate’s role is vital.
These are my top ten tips for how to survive a hospital stay as the advocate. You can find more great ideas here, here and here:
- If possible, make sure someone is with the patient at all times. The advocate is the voice of the patient, who may not be aware enough to know something is wrong, or to question medical staff when they receive contradictory information.
- Take a notebook and document everything: every visit, every staff person, every procedure, every conversation, every medication. If you are taking shifts with other friends, it will help everyone to know what has happened, what has been scheduled, and who has been in the room. It will also help coordinate care since the US health system and its reliance on specialists means different doctors will have different interests, different input and different schedules. Having it all in one place makes it easier to keep track of everything that is going on.
- Politely but firmly require everyone who enters the room to wash their hands. Hospital infections kill 100,000 people a year! Also, bring anti-bacterial wipes and wipe down door knobs, bed rails, bathroom fixtures, and other places people regularly touch. Leave a big bottle of hand sanitizer near the patient’s bed.
- Make sure you understand the purpose of every test and every blood draw. Make sure you have a current list of medications immediately at hand to minimize the chance of medication errors.
- Be patient and be nice to staff; learn their names and use them. Yes, they are passionate people who went into the medical field because they wanted to help people but you are just one of many patients rotating through, and they will tend to minimize contact with unpleasant patients and their friends, which is the opposite of what you want.
- Make your patient as comfortable as physically and mentally possible. Most staff are thrilled when the advocate is willing to change sheets and wash a patient’s hair. Ask for a different room, if yours is not acceptable. Control the noise level as much as possible.
- Know who to call for help and how. See #5, but if you can’t get the response you feel is appropriate, do not hesitate to call the floor nurse, hospitalist, or other supervisor.
- Bring entertainment for yourself and the patient. All hospitals have Wi-Fi and many have laptops you can borrow. Be prepared for long waiting periods.
- Medications can make patients nauseated and dehydrated. Bring breath mints, icy drinks, and other snacks as approved by the physician.
- Take care of yourself. Dress in comfortable clothes, eat appropriately, sleep when you can and ASK FOR HELP. This is a time to ask for help from others; one person cannot do it alone. You’ll be surprised by the help available if you are open to it.
Being in the hospital when you are sick is bad enough; being there when you are well is sometimes miserable. Just remember what an important role you serve as advocate!