Epilepsy Talk

Your hospital rights… | February 3, 2023

Did you know?

1. You have the right to be treated with respect, whatever your condition, whatever your reason for being admitted to the hospital.

2. You should be made as comfortable as possible, whatever the situation. If there’s too much noise, have the situation rectified.  If the lights are making you photosensitive, ask that they be dimmed, or that you be placed where you can’t see them. If you are experiencing any seizure triggers, explain to the nurse and ask for a room change.

3. You can demand to be treated by a full-fledged doctor instead of a resident.  (Which is good news, since ER docs are not the brightest crayons in the box when it comes to epilepsy.)

4. You may have full access to your medical records and request copies, thanks to the Freedom of Information Act.

5. You have the right to “informed consent” where you are provided with a clear explanation with of details, risks and benefits prior to a test, treatment or procedure.

6. You may refuse to be examined or treated by someone you feel is not competent and ask for another doctor.

7. You can refuse any medication — as long as you are advised of the possible consequences.

8. You may designate any visitors you want – or don’t want — as long as you provide signed documentation and adhere to hospital visiting rules.  (I learned that the hard way when I was denied by my step-mother from visiting my dying father.)

9. You may have a patient advocate by your side 24 hours a day, whether it’s a relative, a loved one or even a hired professional advocate.

10. You have the right to request an ethics consultant (a physician, nurse, patient representative, and/or family member) in case there is a disparity in treatment or requests, such as “Do Not Resuscitate” options.

This information comes from Patient Advocate Trisha Torry, author of the book:  You Bet Your Life!  The 10 Mistakes Every Patient Makes   http://www.everypatientsadvocate.com/

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  1. Sure WE have our hospital rights, But when they at the hospitals do all they do, & treat you like a a NUMBER last to get attention, AFTER they will call a local or state police. They then will make you sign a paper or form, & they will either that day or the next go to a local DMV or mail that form to them, & you lose all driving abilities to do for yourself, & CREATE MORE STRESS & SEIZURES. They also NEVER have the drugs you are taking at a hospital as most only have phenobarbital, dilantin & maybe lamictal, but if you take none of them, you again are screwed, as the WRONG DRUG WILL MAKE YOUR CONDITION WORSE. I learned all of that the hard way, when I had to listen to others, as IF I KNEW NOTHING what was & had happened to me, as seizures & epilepsy is pure 1000% HELL to live with, even when you have gone seizure free for a while, living in the FEAR that you never know when a drug just instantly STOPS WORKING, as that has happened to me a few times in my life. So what GOOD is it to have your hospital rights, when THEY can make things 1000X’s worse than what is was if you had stayed away from any hospital ? UNLESS you were lucky to see the 911 doctor on call to be your neurologist, as that happened for me on 11-19-12, when my worse ever seizure that I had happened that day & my neurologist was there waiting not knowing he was going to see me nor I see him.

    Liked by 1 person

    Comment by James D — February 3, 2023 @ 11:37 AM

  2. Where I live Valium is the only seizure drug offered in a hospital…is that a seizure drug?? I don’t go to hospitals any more.

    Liked by 1 person

    Comment by Andy — February 4, 2023 @ 10:31 AM

    • Diazepam (Valium) is a seizure medicine that is occasionally used for acute treatment of seizures in a hospital setting, as a rescue medicine outside of a hospital setting, and occasionally as a daily seizure medicine.

      It’s also available as a rescue nasal spray. https://www.epilepsy.com/tools-resources/seizure-medication-list/diazepam-nasal


      Comment by Phylis Feiner Johnson — February 4, 2023 @ 10:37 AM

      • My experiences in a hospital for seizure problems resulted only in nights of lost sleep and zero effectiveness of valium for me. Without any serious injury as a result of a seizure problem, there is no reason to go to a hospital here.

        Liked by 1 person

        Comment by Andy — February 4, 2023 @ 11:18 AM

  3. Andy, why can’t they offer any other rescue med?

    Actually, there are some you can administer yourself, (like the rescue nasal sprays) or someone else can help you.

    In case of emergency — new solutions https://epilepsytalk.com/2023/01/24/in-case-of-emergency-new-solutions/


    Comment by Phylis Feiner Johnson — February 4, 2023 @ 12:22 PM

  4. I told nothing. Drag down corridor to ER room. By 15 employees. Lock inside barricaded in room for 4 hours. Given no pills. Had hospital investigate. Of course nothing done. Said write to Los Angeles. Etc etc etc

    Liked by 1 person

    Comment by Mel Bubnowski — February 4, 2023 @ 3:24 PM

  5. Melvin, you can certainly talk here. All conversions are confidential. I don’t even know members’ phone numbers or addresses!) So, fire away.


    Comment by Phylis Feiner Johnson — February 4, 2023 @ 5:43 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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