She did everything right. She had the surgery when the doctor told her to, she came to all the follow-up appointments, and wore all the correct bandages. She took all her medicine and complied with all the doctors’ instructions. She saw several types of specialists and followed all their advice. So how is it, that 10 months after my mother’s “small skin operation”, we have landed in the Emergency Room, with the word ‘surgery’ looming over our heads?
These were the thoughts that were swirling in my head as we sat there for the interminable waiting period that is the ER. Did I, as her advocate, do something wrong? Should I have asked more questions, been more aggressive with the physicians?
This is the delicate balance of being someone’s advocate, whether they are paying you or you are a family member. When to push, when to remain passive. When to ask, and when to be quiet. When to change course and when to keep on your same path.
What struck me, though, while sitting in the waiting room, was the following. When I deal with a client, I can objectively review the information in front of me, help compile an action plan, discuss the possibilities with the client, and make an informed decision. The one huge caveat is when you are in the situation, you are STRESSED.
Something happens when you enter the four walls of a hospital with a loved one. Your heart rate increases a bit, your shoulders tense, muscles clench; you are ready for battle, because you know, on some visceral level, that you have to defend your own. It is almost impossible not to feel some type of adversarial response to the staff, and even other patients, in front of you.
Case in point: our first interaction with the system was the registration desk. Paperwork in, stickers received, and the clerk tells us to go to the nurses’ room. The nurses’ door is shut; she’s inside with a patient. Do I knock? Wave to get her attention? Wait passively? I do what every good patient does when encountering uncertainty, I look around to the waiting room, to catch the eye of others like myself. I ask out loud to the crowd, “do I go in?”
“Giveret,” (Miss), I’m answered crankily by several in the crowd, “they’ll call your number. We’re in front of you.”
“Okay,” I answer, “but the clerk told me to go in.”
“Do you think if you were supposed to just go in, we’d all be waiting here? It’s not your turn, just sit down,” retorted an older gentleman standing to the side.
To which I responded, of course rather testily, “well the clerk was very specific, and she told me to go the nurses’ station.”
“Well, she was wrong. You should go tell her that. She was wrong.” Being as that I knew we were going to be there all day and I had nothing better to do, plus I was already frustrated and we’d only been there ten minutes, I did go tell the clerk that she shouldn’t tell people to just go in the nurses’ room, she should tell them to sit and that the nurse will call them according to the number. To which she replied, snarkily, that she knows her job and we should just go in, and if that now, they said they would call according to number then we should just sit down and wait, but she does know what she’s talking about. I wondered what graveyard shift she usually worked that encountered no lines in the ER to allow a patient to just waltz into the nurses’ station, but I did manage to keep my mouth shut and not say that.
See what I mean by adversarial?
There is such an element of high stakes in the ER. The patients feel sick and fragile; the caregivers feel overprotective and defensive, and the doctors are tired, a bit jaded, and overworked. I felt a little bit like there’s no way for this to be anything but a disaster waiting to happen.
In fact, this is the case. A large study a few years ago in the U.S. found that ~25% of ER nurses surveyed, reported experiencing physical violence more than 20 times in the past 3 years, and almost 20% reported verbal abuse more than 200 times during the same period. (Here’s the article). This is accurate for Israel as well. A recent report from the Ministry of Health calculated 3,000 violent events toward nurses in Israel from 2014-2016, 25% of them were physical, and the majority of the events occurred in Emergency Rooms.
There is a problem.
What is your role as the advocate? Obviously, you cannot change the doctors’ previous experiences. One doctor described it as a “surprise” every time a patient walks into the ER on his own accord, or is discharged and saunters out. ER doctors encounter horrific stories, death, and immense suffering frequently enough that your relatively minor injury may seem low scale to them. The frustration is that, for you, this injury is significant enough to bring you into the hospital on a day where you’d much rather be, well, anywhere else.
However, you do have a clear role as the parent, caregiver, or advocate for the patient.
- Present the medical situation clearly, succinctly and objectively to the triage nurse, initial treating physician, and specialists. If you feel they didn’t understand, repeat the information slowly, and clearly. You can always speak in English, slowly, if you cannot express yourself in Hebrew. Let them take the burden of understanding.
- Always review the medical information written on the form as you start your journey through the stations. For example, they suggested my mother do an x-ray, but when I looked at the paper, I realized they had put down that her injury was on her shoulder; the wound was actually on her ankle. If you can’t read Hebrew, ask the triage nurse to translate (she may be cranky about that, so be prepared) or a friendly patient in the waiting room. Remember, this is Israel!
- As stressful as the surrounding environment is, it is your job to disperse it as much as possible. Make sure you have enough food and water; don’t forget to keep hydrated. Try to make jokes and keep things lighthearted as much as possible. Do not think that if you promote your situation as “bad” or “critical”, the medical staff will take more notice of you. They won’t, and it will just get you and your whole party more upset.
- As frustrating and awkward as it is, you do have to go up to the triage station, or managing staff and find out periodically, about your status. Is the specialist around or still in the OR; are your blood test results in (because the doctor is waiting for them in order to see you)? For example, after waiting 15 minutes, when we went to check, the nurse had not moved our file on the computer from triage to ‘waiting for specialist’. Had we not checked, more time would have elapsed till we were in the correct ‘line’.
- Maintain your patience and dignity, but be firm. What do I mean? If the doctor gives you care instructions on a treatment you have already done and it has failed, then tell them. If you do not understand what the doctor is saying, ask them to repeat it and clarify until you do. If you feel that another opinion is warranted, you may ask for it. For example, “Do you think you could ask the orthopedist to look at this as well?”
- Get all instructions and follow up written clearly on the discharge letter. For example, if the doctor says, you really should have a neurologist evaluation in two weeks, then make sure it says “referred to a neurologist for follow up within 2 weeks”, written on the discharge letter. I can’t tell you how many phone calls I have from clients saying, “the doctor in the ER, told me I really need to have X specialist do Y activity in [fill in time period], but my family doctor told me because it’s not written on my discharge letter, she can’t give the referral.”
I wish I could end on a pithy note, but I can’t. Spending time in the ER as a patient or caregiver is tough. Working in the ER is tough too, and my appreciation goes out to all the amazing health professionals who choose to work in this challenging, and occasionally violent, atmosphere. There are no easy answers for many of the situations that we will need to manage as advocates in the ER, but just remember that you have a crucial role to fill, whether you are the parent, child, friend or even neighbor of, the patient. Smile, and carry on.
This is also an additional helpful resource you should look at, about medical attention anytime and in emergencies.