Tip #1 - Have a goal or reason for coming to the ER
When you come to the ER please tell us the reason you are there.
It is that simple.
We need to understand the goal you have in mind for coming to see us.
This applies to you yourself and when you bring in your person living with dementia.
I understand often this goal is going to be obvious.
If someone is bleeding, can not walk after a fall, if they are in distress struggling to breathe, this tip is not meant for you.
This is meant for those who choose to come in to be checked out because of a symptom they are having or a change they have noticed.
When you choose to come in there is something you are worried about. There are questions you have.
You will help us provide better care and you will be happier with your visit if these worries and questions are addressed.
It may seem silly, but if you don’t communicate with us we might never address your specific concerns or questions.
We often have to manage people’s expectations a bit when they relay their questions and worries to us in the ER.
The ER is a chaotic, fast paced environment. We often can not explain the reason behind every symptom someone is having. We are there to triage and stabilize people. To determine if they need to stay in the hospital or can go home to follow up outside of the hospital.
We can not diagnose every condition in the ER, but we can usually point you in the direction of someone who can or the next steps you need to take.
To help you know what to do next, to address your fears, concerns, and answer your questions, communicate openly with us.
Tell us why you are coming in.
Tip #2 - Be available to ER staff caring for your person
After years spent working in the ER, I know the value of having the person there with me who knows the patient living with dementia I am caring for. When they can not speak for themselves, I need your help.
I need to know what they are like on a good day. Is what we are seeing normal for them? If not, how is it different? Do they seem in pain?
You being available to me is easier said than done I know. But when you make yourself available you make it way more likely your person will receive the type of care they would want.
You are the medical care teams’ advisor as far as what is best for your person. You know what is happening for them day to day. You will have a better understanding and be able to guide me about whether what is going on now is safe to manage where they are currently living.
Here are some tips that might make being available a bit easier for you:
1- Make sure you are in their hospital record as their medical power of attorney or listed as their point of contact.
2- Put the phone number of the hospital where they receive care into your phone. Know the first numbers of the hospital so you’ll better recognize it when it comes up.
3- If you know your person is coming to the ER from their living facility switch your ringer on and your Do Not Disturb off.
4- If you are traveling make sure someone else takes over your responsibilities whenever possible. This person should know how to reach you. Ideally they should have at least a basic understanding of your person’s overall goals of care in case your person living with dementia needs use of the ER or the hospital.
I can not stress enough how important it is to have you there physically present or at least available by phone to help me make decisions.
Tip #3 - Have identified and communicate your person’s goals of care
I have written several posts on this topic recently.
When we make medical decisions on someone’s behalf we should always consider their overall goals of care.
In essence goals of care refers to how aggressive your person would want their care to be. You need to determine which goals of care category your person is in. Have this identified well before any need of the ER or hospital.
If you find yourself having recently gone to the ER or hospital, think back to the conversations you had with the care team.
Did they ask you about what your person would want? Did they talk about overall goals?
A lot of times my colleagues in the hospital don’t address talking about this until someone is very sick. There are many reasons for this which I will not get into here, but you should know that sometimes you will have to be the one to bring up this subject.
If you are hearing this concept “goals of care” now for the first time, please read my other posts to learn more.
Here I talk about why this is so important.
In this post, under Step #3, I identify the three goals of care categories.
Finally, in this article we discuss 4 steps you can take to have a goals of care conversation.
Identifying your person’s goals of care is foundational work as a medical decision maker for any person, especially for someone living with dementia. It will improve communication with your person’s care team allowing you to be an even better advocate.
I teach caregivers how to define their person’s goals of care inside my online course “Make Your Plan with Dr. Lamb.” Learn more here.
Tip #4 - Keep a “to go” kit ready and easy to grab
Your to go kit should include two main groups of things.
One group will include paperwork.
I’m talking advance healthcare directives such as a Living Will and copies of the medical order forms they may have.
The most common medical orders forms are the DNR (Do-Not-Resuscitate) and POLST (Physician Orders for Life Sustaining Treatment). Be aware the POLST form is called other things in some states and some states do not have it as an option legally.
In this paperwork, you also want to include a medication list and a copy of your medical power of attorney form.
It’s never a bad idea to have a copy of their ID card and insurance card as well.
The other main group of things to put inside of your “to go” bag are items that will make the ER visit less boring for you and for your person. Things that might make you more comfortable.
For you, items like a phone charger, book, snacks, water. Maybe a small travel blanket or neck pillow. Also pack a pen or pencil and pad of paper to take notes and document important things.
For your person, something that makes them comfortable or reminds them of home. A blanket, stuffed animal, something to fidget with, or a pillow perhaps. You may also want to consider a pair of glasses, a cheap watch, or assistive hearing devices.
Store your “to go” bag in your car or right by your front door. You want it to be in a place where you can easily grab it.
The paperwork can go inside the bag but remember paramedics will need to see the DNR and/or the POLST form quickly. It is wise to have these documents in view on the refrigerator in case 911 is called. This is where most paramedics are trained to look first.
If your person lives in a facility, there should be a procedure for how they give these forms to paramedics. Make sure you ask about this.
If someone is filling in for you or providing care in you, or your person’s home they need to know where the paperwork is stored to be able to bring it along or show paramedics if 911 is called.
Anyone who cares for your person should know where these forms are.
Tip #5 Boring is good
I say this to a lot of my patients after we discuss our plan for care in the ER.
When people are not in and out of your room, this is usually a good sign.
If you are constantly surrounded by medical staff and needing frequent reassessments there is often something bad happening.
It is a good thing to be bored in an ER.
Expect to have your entire day taken up while there.
You can also expect to feel frustrated, like nothing is happening and everything is moving too slowly.
We don’t want to waste your time, but care in the ER is unplanned. We need to be immediately available to anyone who is very sick.
Care of people who are very sick is more time consuming. We can’t leave their rooms as often. They require more team members to help.
Sometimes we have 5-10 staff members in a room with a critical patient. Everyone else then has to wait. This creates backlogs of tasks we need to get done.
It then re-prioritizes everything we do after we are able to move on from the sickest patient.
Please know everything we do including deciding what we are going to do next, which task requires our attention, comes from the computer.
I know it can appear we are not working while we are sitting in front of the computer.
I can assure you we struggle to do our jobs without the computer and sitting there unfortunately is a huge part of how we do our jobs.
If you are in an ER and bored try to feel grateful rather than frustrated.
Do not worry. We will not forget about you. We likely need the room you and your person are in to care for the next patient.
Next up, tips 6-10…
If you are looking for action steps you can take now to have more peace of mind as a medical decision maker, I encourage you to listen to my free 5 Step Audio Training.
Spoiler alert! Defining your person’s goals of care is one of the 5 key steps to take.
Get it delivered to your email here.
Until next time, all my best to you and your person,
Brittany Lamb, MD