Tips on Being a Hospital Patient Advocate

 

Before this year, Estelle and I can count on one hand all the hospital admissions for both of us. Now I’m beginning to feel like an experienced patient advocate. Given Estelle’s blindness and the nature of her health issues this year, I always felt I had to stay in the room with her 24x7 unless a friend was standing in for a bit. You learn a lot when you do that and follow what is going on hour by hour. So, here are my suggestions if you are a patient advocate, I’ll assume you’re an advocate for your spouse here but it could obviously be another loved one or friend. And, it probably goes without saying, if you are the patient, do not go alone if you can avoid it at all. Find someone who can at least meet you there if not take you there.

Should your spouse go to the Emergency Room?

While never eager to be in a hospital, we’ve learned there are times that is the best choice. Our choice in 2019 in South Africa to go to the emergency room with my unusual indigestion-like symptoms, probably allowed me to be here today for Estelle after they caught a heart attack in progress and saved my life. We’ve decided it is better to be in the hospital wishing we were home than to be home in the middle of the night, wishing we had gone to the hospital. We’ve also learned that getting a variety of outpatient diagnostic tests and specialist visits scheduled can take weeks or months, and that the same process can be completed in days in the hospital.

At the same time, you may want to think about whether you want to go in the middle of the night or wait till morning, or even wait till Monday if it’s a weekend. Only you can make that call but do be aware that if your condition isn’t likely to be life-threatening, it’s possible not much will be done overnight, or even over the weekend. You may just be adding some observation time to the front end of your admission. BTW, you could also go there and decide at the time they recommend admit, to come back in the morning or on Monday after they have told you you’ll probably live.

Picking the ER and heading there

If you decide to do the ER thing, you will, of course, want to go to the ER of the hospital where your loved one’s personal physician(s) are connected. I’ve found getting our doctor to call ahead to the ER to grease the skids never hurts. It can clearly differentiate you from the rest of the ER waiting room crowd, and usually get you some priority attention. Here’s a suggestion of what to pack in your go bag to the ER.

• Pen and notepad—you will definitely need this.
• A list of your spouse’s medications, or just a plastic bag with the bottles in it.
• A supply of your and your spouse’s daily meds for a couple of days.
• Your and your spouse’s cell phones, along with charger and/or battery. You may be there for a while and may be on your phone a lot.
• Comfortable clothes, including a warmth layer, you may be there for a while and be in cold rooms.
• Some snacks and water/drinks. You may be sitting in room(s) for a while.

In the ER

Once you arrive at the ER, you may find, especially during Covid times, they won’t let you go back with your spouse unless he/she requires assistance. In our case, of course, Estelle’s blindness requires assistance, so I am always allowed to go back with her and stay with her. My suggestion is that, as the patient advocate, you specify a reason your spouse needs assistance, perhaps just disorientation and confusion, and try to be adamant that you need to stay with them. If they just won’t allow it, make it clear you want to be advised about any decisions/recommendations made by the ER doctor(s), especially admission.

Once you are in the ER your spouse will be randomly assigned an ER doc who will evaluate their situation and decide what should be done, including whether to admit them. Here’s where you being in the room begins to pay off. Make sure they have all the detailed facts about the patient and the condition. Make sure they know to advise and consult with your personal doctor about the situation. If you have a personal specialist, i.e. cardiologist for a possible heart condition, make sure they are advised and asked to consult. In fact, you can personally try to get in touch with the appropriate, personal doctors/specialists while you are there to let them know what’s going on. Most of them have emergency numbers. After all, you are in the Emergency Room.

Here’s where your notepad begins to pay off. Make notes about everything, the nurses names, the doctors names, what the ER doc says, what tests and meds they are ordering, and why, what they are trying to rule out/determine, and what specialists they are planning to consult. You will find later you are trying to remember who they were or what they said, typically to explain to someone else and you will be glad for your notes. Make them spell the words you don’t understand. I find notes work better than recordings, which are usually garbled and unintelligible and hard to refer to quickly. They will be asking about the medications your spouse is on. Make sure they get your actual list, not just a list they may have in their computer from previous patient records. Those lists are often out of date.

If the ER doc decides to admit you, this is your opportunity for a decision. Just because you came to the ER doesn’t mean you have to be admitted if they want you to. Most likely you will, but get the admitting doctor to explain to you clearly why they recommend admission, what the plan is, how long they would expect the admission to take, and what doctors are expected to be involved in your spouse’s case. This is a decision point. Be comfortable with it.

Getting Admitted

If your spouse is admitted, you will of course want to go to the room with them. The reality today is their personal primary care doctor, or even their specialist, probably is not the one who will be in charge of their care. Most hospitals have gone to the concept of “Hospitalist” which is a general-practitioner-type MD who is employed by the hospital to attend to a large number of inpatients and be the “quarterback” of their care. They will have options about what specialists to call in for what type consultation. You may have some input into this if your doctors are on staff at the hospital. Naturally you will want them to be involved but you need to understand what’s happening and speak up.

Things to do after admission:

• Make notes about the action plan your hospitalist is ordering, and timeline.
• Meet the nurses assigned to the room and get their names. Be clear on when shift change happens.
• Make a list of the medications ordered, dose, and frequency, and purpose.
• Make sure they have ordered your spouse’s standard medications, or given you a reason they are being withheld. It’s not uncommon for some of those to be left off or wrong on the inpatient meds list.

·       So, after you have done all this, you will have notes about the who, what, when for your spouse’s care.

Of course you will be assigned one or more nurses and techs. Be sure to note their names and use them often. These folks can be more important than your doctor and you will sure see them more often while you are there. Make it clear that you are interested in all the care given, and watch the meds being given and compare them with what you think should be given. I have found it rare that they give a wrong medicine, but it’s not at all uncommon for them to leave one off. Particularly pain medication which is often ordered as needed and if you don’t know to ask for it, you might not get it.

The next question is how long you should stay in the room with your spouse. I’d say as long as you are comfortable they can locate the call button, are thinking fairly clearly, and can clearly communicate their needs, you are probably ok to leave them at bedtime for the night. If there is a question about mental confusion, I would consider staying in the room overnight.

The next question is, if you leave for the night, when do you return the next day?

How to keep updated on progress and plans

This brings us to the challenge of catching doctors on their rounds. This is one of the most ridiculous aspects of inpatient care. The doctors involved in your spouse’s care will stop by at random times to see him/her, typically once a day. Many patients are not in a good condition to understand and remember what a doctor says to them when in the room. If the advocate happened to be out of the room, maybe just to get a cup of coffee, the opportunity to hear and ask questions is gone. Usually even the nurse is not in the room. Often there is no way to get the doctor on the phone to ask them to repeat what they said in the room and to be able to ask questions. So, if you want to know what’s going on, and what the new plan is, you should be in the patient room by 7am and not leave till all the doctors you need to talk to have been by.

Discharge

Each day it is reasonable to ask your hospitalist how long they expect your spouse to stay and what is the plan of action till expected discharge? If the doctor says you are good to go, make sure you know what the follow up plan is after you get home. If you are supposed to follow up with another doctor after discharge, who will be making that appointment, you or someone else? Make sure you understand the medication list you are being sent home with, including any changes they may have made to your standard meds. Also, while the hospitalist will normally write the prescriptions for you as you leave, you will usually need to have another doctor renew those prescriptions later. Get those names and follow up times.

Hopefully your discharge will be processed quickly, but it never hurts to let the doctor and your nurse know you are anxious to get home and would appreciate them completing the paperwork as soon as possible.

 Hope this post has been of some interest and that you never need it.