Healthcare System Hacks from a Patient Advocacy Specialist
Patient advocacy is a hot button topic right now, especially as the COVID pandemic and Delta variant continue to rock the American healthcare system.
Besides the constant concern regarding a shortage of ventilators, masks and other equipment, the medical system is rife with outdated misunderstandings and gross negligence. Women, in particular, fall victim to institutional biases and their needs are notoriously underserved.
Studies repeatedly document these inadequacies, highlighting very serious and sometimes fatal consequences, especially for women of color. As a patient in an emergency situation, it’s often easy to forget all the people that make up your emergency medicine team as you anxiously wait to speak with the doctor.
Your biggest advocate will oftentimes not be the person in the white coat – it’s you. Below are some helpful tips to help guide you through an ER Visit:
- Ask for papers:
Be kind to the registrar and show up prepared. Ask to sign a medical record release form at the beginning so it will be easy to collect your medical records later.
- Phone a friend:
Go to the ER with a loved one or close friend that can help speak on your behalf, if necessary. If visitors are not allowed, put them on speakerphone when having important conversations.
- Who you should know:
The triage nurse is the captain of the ship. They’re responsible for categorizing your complaint and identifying the appropriate level of care. This is not a time for personal phone calls and distractions so silence your phone and let them know they have your full attention.
A doctor’s front desk staff is an extension of them. Get to know them and treat them with respect. Your relationship with them is just as important as your relationship with the doctor.
- What to say:
The most effective way to communicate is to compare what you’re currently experiencing to a previous experience
“I’ve never experienced this type of pain before.”
“I know my body well and something doesn’t feel right”
“I tried x, y, z before coming to the ER and nothing helped”
“I spoke to my doctor and they’re concerned about _____.”
“I feel pain on a scale at “N” on a scale of 0-10.”
Before you even see the provider, the triage nurse and/or the nurse directly taking care of you often have the authority to proactively order tests. If your personal doctor is concerned about something in particular, restate this. Don’t expect every piece of information to be effectively passed on so it’s important for you to double check and clarify. Your nurse may ask you the same questions that the triage nurse asked so don’t get frustrated if you need to repeat yourself.
- Build a tool kit:
Make the work as easy as possible for your team. Carry a personal medical card with you in your wallet so you can quickly provide it to anyone that might need it. The nurses, technicians and doctors will be immensely grateful and it’s the little things that go a long way.
Don’t expect the hospital to have a copy of all your medical records, even if you’ve been there before. While your private doctor may be affiliated with the hospital, this doesn’t mean that they share the same systems. Bring along prior imaging reports and the imaging CDs so your doctors can compare and provide you with a more meaningful medical opinion.
- Patience is a virtue, but:
Don’t be passive. Emergency medicine workers have no curtain to hide behind. If they stop for a moment to take a personal call or stop to say hello to a colleague, do not hold it against them. These natural pauses are essential for their health and wellbeing. That being said, when it’s time to talk to you, you should have their full attention.
- Be open minded:
When you see the provider, make a game plan and understand the differential diagnosis (the various diseases that would present with similar symptoms). Ask him/her what they’re concerned most about and allow them to explain why they’re ordering certain tests. This is your time to mention what you’re personally worried about as well. If they’re a good doctor, they will listen and in many cases, order additional testing based on your insight.
- Be assertive:
While you’re waiting for results, don’t be afraid to communicate if you begin to feel worse. This can be a critical time in your care and the waiting game should not compromise the quality of care that you’re receiving.
“I know that we’re waiting for the ____ results to come back but I’m starting to feel worse”