My Husband Was In The Hospital For 3 Years. Here's What I Learned
Hospitals can be scary places for both the patient and their loved ones. It’s unfamiliar territory; they’re like foreign countries, with their own languages, customs, and practices.
When my husband suffered a severe allergic reaction to a bee sting, it left him severely disabled, and we spent three years in and out of hospitals. During his medical journey, we sometimes experienced life-threatening issues with his care.
For example, he had a feeding tube and his bed needed to angled at 45 degrees at all times, however, sometimes I would walk in and see him lying flat and having difficulty breathing because the food from his feeding tube wasn’t going to the right place.
I quickly realized I could overcome some of these challenges and provide better care for my husband. I later realized I could also help patients around the nation and worked on a national committee with the Agency for Health Research Quality (AHRQ) to develop a guide for Patient and Family Centered Care in hospitals.
1. Not all doctors are equal.
Whether you are in the ER or on a main floor in a hospital, it’s important to know that there are different levels of experience when it comes to doctors:
They are still in school. They are often there to observe and perform non-hands-on tasks. They begin caring for patients in their last 2 years of school.
They've finished medical school, but have not passed their board certification and are in training for a specific field. They’re not permitted to practice medicine without being under the supervision of an attending physician.
Have completed training, necessary certifications, and are in charge of the patient’s care. They give the instructions to everyone else on the medical team and make the final decisions. If you need to change something about your loved one’s care, the attending is ultimately responsible.
2. The primary doctor should always be in the loop.
Primary doctors aren’t always the ones providing care when a patient is in the hospital. Some hospitals have hospital doctors (attendings) who only work there. That means it’s really important to keep your loved one’s primary doctor in the loop.
3. Rounds are important!
Rounds are when doctor(s) see the patient, discuss the plan of care and talk about any concerns.
It’s a great opportunity for you to meet the team. You probably won't get an exact time, but you’ll be able to get an idea about when rounds happen (usually in the mornings). If at all possible, especially in the first couple of days, try to be THERE. You’ll learn a lot about the care plan and course of action that’s being developed.
4. You can (and should) ask questions.
If you have questions, ask them! Be thoughtful and courteous about the timing, but make sure you ask. When a doctor or nurse enters the room and greets you, let them know you have some questions when they’re ready. That gives them a heads-up not to leave before you have an opportunity to ask your questions.
5. Teamwork is essential.
Make sure your interactions occur with an intention to collaborate. Always keep in mind that the goal is to get the best care for your loved one. Remember, you and the medical team are trying to achieve the same goal. Antagonistic, demeaning, argumentative, and harsh attitudes or words won’t achieve that. The way you communicate will make all the difference in how well your feedback is received.
6. Nourishing yourself is crucial to being able to help your loved one.
When someone you love is sick, your adrenaline is racing and you’re trying to figure out the hospital paradigm; the last thing on your mind is food.
Most hospitals have several different food sources:
- Cafeterias, which preferable
- Food Carts
- Patient room service for visitors
- Vending machines
With the exception of vending machines, they all have hours they’re open, so make sure to plan.
7. Rest is required.
Know yourself and how much stress you can take. If you need to get sleep, arrange for other friends and family to come and relieve you. This is a great opportunity to create a schedule. They allow for short periods of time so that someone is always there, but everyone gets rest. With today’s technology, quick updates via group texts can be an easy way to keep everyone in the loop.
8. Most importantly, NURSES are your saving grace!
Nurses are great resources for questions and information. They know a great deal about the care a patient is receiving. They spend the most time caring for them, and are your central resource for communication and collaboration with the rest of the medical team.