Epilepsy Talk

Your Hospital Rights… | November 3, 2019

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/



  1. Goodevening Phylis 😊. Hope all is well 😊. Out of curiosity does that apply to Canadian citizens as well? Thank you and please have a very good night and take care 😊

    Liked by 1 person

    Comment by Kathy S.B — November 3, 2019 @ 6:52 PM

  2. The last time I had to go to the hospital was due to and issue with my meds. I ended being put on a small bed that is used just for moving to and from surgery and put in a corner of the ER of Memorial Medical Center. for over 8 hrs. Never felt more vulnerable in my life.

    Liked by 1 person

    Comment by Randy — November 3, 2019 @ 8:03 PM

    • I know the feeling.

      I was put in the corridor of the NYU Medical Center ER for anaphylactic shock and lay there as residents buzzed around me, stopping by now and again to give me another prednisone shot.

      Finally, I screamed: “Stop! You’re going to give me a heart attack!”

      I lay there for 8 hours, in my snow parka and cowboy boots, until they were satisfied that I wasn’t going to swallow my tongue or die.

      And then they sent me on my way. Telling me to stay within 15 minutes of the hospital, IN CASE anything happened.

      The hospital was in NYC. I live in Pennsylvania. 😦


      Comment by Phylis Feiner Johnson — November 3, 2019 @ 8:28 PM

  3. Phylis,, AGAIN, I spent to type my thoughts out on this E T forum, & I clicked on POST. After 10 to 15 minutes just typing as I am here now,, I see NO POST / COMMENT in the E T forum. What is going on as I also see NO NEW POST I thought that I made on FaceBook just 2 nights ago ? I am also seeing when I click on FB on FIREFOX that the message reads,, THIS IS UNAVAILABLE at the present time & it’s been that way for 2 months 8 weeks or more. I guess I am being BANNED of MY FREE SPEECH. I’m sure you can figure it out for me. because I am CONFUSED & I do NOT need stress from ANY of this.


    Comment by jcdavis@hardynet.com — November 3, 2019 @ 8:28 PM

    • I just saw this message here and I saw your message on Facebook, so I surely don’t know what’s going wrong. 😦

      How about trying the Google portal?


      Comment by Phylis Feiner Johnson — November 3, 2019 @ 8:34 PM

    • JC,,, When you notice the delay or interruption of your posts, your internet connection is most likely intermittent & need better location to stay connected to the HOTSPOTS of your coverage area or you have unknowingly downloaded “cookies” from some websites you’ve visited but not meant. intended or interested to save in your network.
      I think the “cookies” are disrupting your network connection.
      Therefore, you need to check your settings, debug/clean up your Iphone/computer memory & turn on the security settings of your network to stay active, protecting your network connections.
      I hope this idea can help solve the problem of the intermittent connection you’re encountering.
      Good Luck!

      Liked by 1 person

      Comment by BahreNegash Eritrea — November 4, 2019 @ 11:17 PM

      • Gerrie, thank you so much. I hope his works for JC. He’s more than a little frustrated.


        Comment by Phylis Feiner Johnson — November 5, 2019 @ 8:55 AM

  4. I didn’t know a lot of this, so I guess I’ve been one lucky catsissie! Either my situations went on as they should, or the people I dealt with were angels. There was only one time, when I came to as my sil was explaining to someone in white that I Didn’t Drink! She won. Smh. Not a bad record, for someone dx’d in early 1971…(finally)!

    Liked by 1 person

    Comment by catsissie — November 3, 2019 @ 10:39 PM

  5. Reblogged this on catsissie.


    Comment by catsissie — November 3, 2019 @ 10:41 PM

  6. Patients rights and patient being not admission of epidialex when it is part of his protocol is different. Dr in different hospitsls have different likes and dislikes as to meds and ailme ts, we can complain as we did and sometimes they give in. Sometimes they do not.

    Get Outlook for Android


    Liked by 1 person

    Comment by Joel Mason — November 3, 2019 @ 11:14 PM

    • I strongly feel that you must be your own advocate.


      Comment by Phylis Feiner Johnson — November 4, 2019 @ 9:47 AM

    • Joel,
      If the Doctors & hospitals are entitled to pick whom they like or dislike, do the unconscious & disoriented patients, surviving another medical hardship have the same options?

      Liked by 1 person

      Comment by BahreNegash Eritrea — November 4, 2019 @ 11:54 PM

  7. I’m going to make myself a copy of the Patient’s Bill of Rights and keep it in my wallet with my insurance cards.

    Liked by 1 person

    Comment by HoDo — November 4, 2019 @ 10:37 AM

  8. Great idea!


    Comment by Phylis Feiner Johnson — November 4, 2019 @ 10:40 AM

  9. As long as hospitals & doctors are immune from lawfull supervision & criminal accountability, the helpless patients will NEVER have a voice to save their lives.
    Thanks to Epilepsy & the uncompromising demand of good friends coming to my rescue, insisting the hospital immediately stop the tormenting abuse & medical malpractice, I survived the death chamber meant to cure my grandmal seizures.
    It’s fantastic to know I made it this far, against all odds.

    Liked by 1 person

    Comment by BahreNegash Eritrea — November 4, 2019 @ 11:49 PM

    • You’ve had luck, you’re persistent and you’re a true survivor Gerrie. Despite the odds.

      God bless you. I’m so grateful you’re still here.


      Comment by Phylis Feiner Johnson — November 5, 2019 @ 8:58 AM

  10. Phylis,
    Thank you for sharing this information and your use of humor in line number 3!

    All the Best,

    Liked by 1 person

    Comment by Elizabeth Niedringhaus — November 15, 2019 @ 1:42 AM

    • LOL! Well residents are NOT the brightest crayons in the box.

      Although there are exceptions. Like the one who treated me for status in the ER.


      Comment by Phylis Feiner Johnson — November 15, 2019 @ 10:16 AM

      • Yes, once in a while you’ll find the gold crayon in the proverbial box of “resident crayons.” And when you do, what a good day it is!!

        Liked by 1 person

        Comment by Elizabeth Niedringhaus — November 15, 2019 @ 10:23 AM

  11. It sure was a good day for me. Otherwise, I’d be dead.


    Comment by Phylis Feiner Johnson — November 15, 2019 @ 11:07 AM

  12. I think the hospitals in Southern Oregon could use a reminder. Not at all stating the whole lot are far from up to par, however there are many that have crossed the line. For example, I do not appreciate being woken up by someone sticking a needle into my arm! No explanation of what the heck they are putting in my body and not even a “sorry” or stopping what they are doing. That has happened to me more times than I can count and makes me feel very uneasy and vulnerable. Another is while having a sleep study done on my 3rd day at hospital one of the staff members stole my cell phone off the night stand. I never received a call back from anyone in charge /supervisor and I left many messages. The thing is, my whole time there was recorded, all they would have to do is look at the tape. It’s upsetting & beyond frustrating since there were pictures on my phone of my son that passed away the year prior that were irreplaceable to me, they could have kept the stupid phone just please let me have what memories of my son there are back. But nobody there has any empathy for my situation that could have potentially been solved with simply going over the recorded footage. I have had my medical records tampered with 3X and HIPPA or OSHA none of the ones put in place to enforce patient privacy rights is willing to open a case because there isn’t enough people involved to justify opening a case, like basically telling me they are aware my rights have been violated however I am not worth remedying the situation, to bad so sad better luck next time. I’ve also attempted to get my medical records from the hospital repeatedly, even my attorney a few times sent requests, but I never got them it was always the run around, so there I was standing in front of SSD judge without my records to back me up and that caused me to lose my case which took 7 years to get that far. Figure I’ll end up like my dad waiting 8 years for approval by then its to late and then die a month later while still in my early 40s.

    Liked by 1 person

    Comment by Crystal Ann — November 23, 2019 @ 6:18 AM

    • Crystal, it’s clear you need a better lawyer to pursue your various cases.

      There’s theft, abuse, manipulation and other assorted misdeeds that you’ve suffered.

      You’re entitled to to have access to your records by law and the theft of your cell phone is unforgivable.

      Idea, what if you actually called your cell phone? Someone would probably answer and you’d have a clue who took it.

      If you can, report the hospital and initiate a case against them.


      Comment by Phylis Feiner Johnson — November 23, 2019 @ 9:16 AM

  13. Every time I go to the hospital Emergency room im kept for 3 days then sent home. 1 day I had several seizures and was sent home saying im fine? I will go to Miami hospital next time. Please pray for me I died 3 times during my brain operation and almost lost my life. All do to my former maintenance man took all my Tegretol land lady threatened to call the Police and sue me! I yelled your a stupid b—h and went back to my apartment writing all to let them knpw I may not be alive too long. I did die during my brain operation and I pray that I never go through that again.

    Liked by 1 person

    Comment by RUSTY Hanawalt — November 25, 2019 @ 6:05 PM

    • Is it possible to REPORT this to the police? (And the awful landlady, too.)

      This is such a truly terrible situation, Rusty. And I’m so very sorry.

      There must be some intervention that is possible.

      Locking up your drugs? Hiding them?

      Sad that it’s come to this. 😦


      Comment by Phylis Feiner Johnson — November 25, 2019 @ 8:32 PM

  14. I didn’t know all these, even though my experience was very good when I was admitted……… I just thought everybody was very accommodating and overall nice. Good to know……. very informative post


    Comment by Shelly Ann v. Joseph — November 28, 2019 @ 5:55 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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