Caring for a loved one with heart failure means that unexpected trips to the ER may be a common reality. By keeping in mind some of these tips and info, you can stay prepared and in some cases avoid the ER altogether.
Avoiding the ER
”With my mother and her HFpEF, I was eventually able to detect what rose to the level of an ER visit. At times, simply getting her into a cool dark room would help the symptoms go away.”
Is it time to go to the ER?
When is a crisis a crisis? When should you call someone else for help? Get help when your loved one is in some kind of medical distress and you are not sure what to do. Call your local rapid-response number (e.g., 911 in the US or 112 in the EU) or an ambulance if the person you are caring for:
- Is unconscious.
- Has unexplained chest pain or pressure.
- Is having trouble breathing or is not breathing at all.
- Has no pulse.
- Is bleeding severely.
- Is vomiting blood or bleeding from the rectum.
- Has fallen and may have broken bones.
- Has had a seizure.
- Has a severe headache and/or slurred speech.
- Has pressure or severe pain in the abdomen that does not go away.
- Is unusually confused or disoriented.
Also Call for Help If:
- Moving the person could cause further injury.
- The person is too heavy for you to lift or help.
- Traffic or distance would cause a life-threatening delay in getting to the hospital.
For more specific information contact your loved one's physician.
Preparing a Go-Bag
What’s a Go Bag? Trips to the hospital are seldom planned, and the only thing that can make a stressful situation even more so is arriving without something you need. Having a bag already packed ahead of time, easily accessible and full of necessities, can give you and your loved peace of mind.
What Should Be in a Go Bag?
- Your loved one’s Patient File (containing their health records, insurance info, list of medications, and any legal documents)
- A blanket – waiting rooms can be chilly.
- Cell phone charger - so you can communicate with friends and family.
- Snacks – because who knows how long you may be left waiting at the ER.
- Change of clothes.
- Cards, a book, or anything to pass time while waiting.
- Keep the Go Bag in an accessible space, and let other family or friends know where it is in case they are taking your loved one to the ER.
Let Others Know Where the Go Bag Is. Other members of your loved one’s care team – friends or family members – may be the ones taking your loved one to the hospital. That is why it is important that all members of the care team know where the Go Bag is – and what is in it – in case of an emergency.
Keep Contents Updated. Is the Patient File updated? Have the snacks you packed expired? Schedule regular checks of the Go Bag so you know everything is there and current!
10 Tips for an ER Visit
With heart failure, especially HFpEF and HFrEF, you may find some doctors (especially during an ER visit) won’t initially believe the diagnosis, creating a pretty frustrating situation for both you and your loved one. Keep these tips in mind for a successful and efficient trip to the ER.
10 Tips for an Effective ER Visit
1. Tell the doctor and emergency room staff that your loved one already has a heart failure diagnosis.
2. Know what symptoms to report.
Review the Crisis Symptom Reporting Guide and have your answers ready!
3. Have your "Caregiver Go Bag" ready.
Did you ever have a bag ready to go when expecting a child? Your Caregiver Go Bag is kind of like that! You might want to pack extra clothes for you and your loved one, a phone charger, something to read or a deck of cards, and some healthy snacks. Anything else you can think of?
4. Stay calm and introduce yourself.
Let the staff know who you are and that you are your loved one’s family caregiver. Your loved one may already be nervous or scared, and that is on top of the already hectic energy of an ER. Stay calm when you are with them.
5. Have your information ready.
Make sure to have your updated documents with you. Keep a copy of these in your Caregiver Go Bag.
6. Communicate needed information.
Provide documentation you have brought and answer any questions.
7. Stay out of the way and be patient.
Things are fast paced in the ER. Don’t get in the way of staff doing their job.
8. Ask for updates!
Don't hesitate to ask for updates.
9. Stay in touch with others.
You may want to provide updates to other family and friends, so they know what is going on. Did you remember to pack your phone charger in your Caregiver Go Bag?
10. Express your thanks!
Those in the ER have a tough job. Show you’re thankful for the care they are providing to your loved one.
What to Know at Discharge
After discharge from an emergency room, it’s important to follow-up with your loved one’s doctors and follow discharge instructions; including taking the medications as prescribed so you don’t wind up back in the hospital. 1 in 4 heart failure patients are readmitted within a month and more than half are readmitted within a year.
Ask for a Physical Copy of Medical Files
When your loved one is discharged from an ER visit or any procedure, it’s very important to ask for a printed copy of the paperwork so you can update your loved one’s patient file. Unless the ER is in your loved one’s doctor’s health system, electronic transfer of records may not always be as simple and seamless. While many apps and digital solutions can be a great solution, with HFpEF, it’s critical that you have the most up-to-date info about the diagnosis at your finger tips.