Caregiver Notes – Early Discharge

Written April 22, 2009

For those of you who are reading this blog not because you know G&L or M&C, but because you are involved with someone else who may be getting a kidney transplant, I would like to add a few notes for caregivers regarding early discharge.  I was very pleased to hear from Gayle that the long ride home and associated discomfort and stress were worth it in order to be in her own bed that night and at home the next day – because it definitely was a challenge dealing with the early discharge, and there was the potential for some serious problems.

As Loren’s post that evening indicates, the early discharge caught us completely by surprise.  The doctors had mentioned Tuesday or Wednesday; never once did anyone even hint that it might be on Monday.  We knew there was a lot of stuff to deal with before we could be on the road, and had expected to have at least one more day to deal with it – to absorb information, organize paperwork, and to ask questions.

At the hospital, that included doctor’s rounds, a shower for Gayle, respiratory therapy, an evaluation and instructions from a physical therapist, a discussion and instructions from the pharmacist about Gayle’s many post-transplant medications, instructions from the in-patient transplant coordinator on post-transplant care for Gayle, including lab orders, infection control, and several other things, getting copies of discharge papers for disability, a visit from a research associate with some instructions (Gayle had agreed to participate in a research study), and maybe one or two other things that I’m not remembering right now, plus good-byes to staff and Gayle’s roommate, and getting Gayle out to the car.

Additionally, Loren and I had to get back to the hotel and pull our stuff together, find out if we could do a late checkout without being charged for another night’s stay, and get back to the hospital to get Gayle around the time that she was ready – which included dealing with big city traffic and parking issues.  Oh yes, also we needed to bring clothes to Gayle (which we almost forgot), and get her hospital stuff to the car.  Etc etc etc.

Then we had to drive home, which under the best of circumstances takes about 4 1/2 hours (no extra stops, no traffic, everyone in the car feeling well).  On that drive we had to stop every 45-60 minutes to get Gayle out of the car and moving around, to make sure she kept up on water intake, and to use the restroom approximately every hour – maximum two hours.  Which meant we had to find places and opportunities to do these things along the way.

One of the scariest aspects of this situation related to getting Gayle’s medications – and getting them right.  Her insurance plan only allowed the hospital to dispense enough medications for her to get home.  That meant we had to get her prescriptions as soon as we got home, so she could get through the night and stay on track first thing the next morning.  Hospital staff had sent Gayle’s orders to her pharmacy ahead of time.  Although hospital staff was sure we would get home in time to get to the pharmacy and pick up her prescriptions, I had serious doubts about it, and in fact we did not (we left the hospital around 3:15 pm and got home around 8:30 pm; the pharmacy was another half hour drive away from home).  Hospital staff also was sure that Gayle’s orders were just as they should be, but we discovered that in fact they were not.  We were fortunate because I was able to call my partner Ric from the hospital – Ric was at home, and he was available to go to the pharmacy right away to pick up Gayle’s prescriptions, so the meds would be waiting for us when we got home.  Here is a very key thing about this: when Ric picked up the prescriptions, he called me at the hospital while he stood at the pharmacy counter, and he read (or sometimes spelled) to me the name from each bottle of pills; we compared that to the list that we had at the hospital.  Guess what.  The hospital had ordered the wrong pain medication for Gayle – one that causes nausea, of which she had had plenty in the hospital and really did not want to experience any more ever again thank you very much.  Thankfully Ric’s call came in just before the transplant coordinator left us.  So on the spot, Ric put the pharmacy tech on the phone, and I put the transplant coordinator on the phone, and they straightened it out.  As soon as Ric got the new meds he called again to confirm they were correct, and they were.  Without Ric’s availability and willingness to help, a very helpful tech at the pharmacy, and some lucky timing, we would have had a big problem after we got home.

Another anxiety-producing situation related to some medications that Gayle needed to take upon arrival at home. In the flurry of early discharge activity none of us had really understood what the instructions were for these particular medications.  We didn’t get home until 8:30 pm, at which point Gayle was very uncomfortable from the drive, and quite anxious about our lack of understanding about these medications.  Thankfully we were able to confer with the donor and her partner (the donor had received similar meds) and we got through this OK.  But it was a very anxious time for all of us.

As you can see, there was a lot to do, and a lot of stuff to track.  We received a LOT of information from hospital staff during the teachings, verbal and written.  There were several interruptions during each discussion.  It was hectic, and I was concerned about being able to get it all right, and get Gayle home OK on what promised to be a long day.  It worked out, but it wasn’t easy.  We were lucky not to have traffic problems on the way home, and that Gayle did as well as she did.

If your patient is doing well, consider the possibility of an early discharge, and plan accordingly.  Here are a few suggestions, based on our experience.

• At the hotel, have your stuff organized and ready to go early.  Alert hotel staff that you may need to leave a day or two earlier than you planned, but past their usual checkout time; explain the circumstances and ask if you can do so without incurring another night’s charge.
• Know how you will deal with picking up your patient – the route to the hospital (we had taken a shuttle or walked every day; driving was another matter) and parking/pick up options.
• At the hospital, take whatever amount of time you need to understand the information you are being given, and to organize papers that you are given.
• Ask staff to slow down and explain things until you are sure you understand them.
• Make sure everything is written down.  Take notes.  Although hospital staff assured us that everything they were telling us was written down on materials they were giving us, once we got home and looked things over we discovered that was not the case.
• Don’t assume you will remember what staff tells you, even if it is clear at the time they are telling you.  You will experience information overload.  Make sure you have all instructions written down clearly, and that you can easily find that paperwork.
• Look at paperwork as it is handed to you to make sure you know what you are receiving.  If needed, ask staff to stop talking for a moment so that you can look at the paperwork and let something about it sink in.
• Make sure you have names and phone numbers of who you should call after you get home if you have questions – especially a 24 hour number.
• If you have any concerns about anything, make sure you get those concerns addressed; don’t take staff’s word for it that everything is OK.  Our experience with the prescription orders could have been a disaster had we accepted staff’s assurances about this.
• Make especially certain that you understand about your patient’s medications for the first 24 hours – what you’ve been given, what it does, and how it should be taken.
• Make especially certain that any prescriptions that you have to pick up soon after returning home are correct and are in stock.  Have hospital staff send the prescription orders to the pharmacy.  While you are at the hospital have someone at home pick up the prescriptions, and have them call you to confirm they are correct before you leave the hospital.
• The day after you return from the hospital, allow yourself time to get organized, to make sure your patient is properly cared for and comfortable, and you get some rest.  Let the answering machine take calls.  Ask visitors to wait for a day or two.
• If you are not sure you can accomplish all this, resist early discharge.  In our case, we managed, and Gayle was happy to be home early, so it was worth it and it worked out OK.  But if things hadn’t worked out as they did, the possible problems that would have ensued would not have been justified.

Actually I suppose that most of these suggestions apply to any discharge – early or otherwise.  Here are some additional suggestions to help overall.

• Develop a list of supporters whom you can call for help.  Bring their contact information with you.
• Carry a cell phone.  I suppose for most readers nowadays this is a given.  But I do not own a cell phone, and was very fortunate that a friend was willing to let me use hers.  It was indispensable.
• Organize your patient’s medical papers, forms, letters, instructions, etc in folders, and bring them along in an accordian file or something equivalent.
• Bring a few extra, empty, unlabeled file folders.
• As soon as you receive new paperwork, file it appropriately, in either an existing folder, or one that you create on the spot using one of the extras that you brought along.  Ask staff to wait just a moment so you can do this before moving on to the next topic.

In all cases, be a calm presence.  Your loved one is experiencing much physical and emotional discomfort.  They need for you to be their rock, especially when things get hectic, such as an early discharge.  You can help them by staying calm and focused.  If you need to ask for a moment to collect yourself, do so.

Also, be nice to staff, and if necessary, be firm as well as nice.  They have a million things to do in the course of their day.   It is my opinion that most hospital staff members care about doing a good job, but may be constrained from doing so to the degree that we might wish by things that are beyond their control.  So be nice to them, but do make sure your loved one’s needs are being met.