Original Post: 4/24/2012
I received a call from a good friend last Thursday that her sister was intubated and in the ICU. Her sister had a stem cell transplant a year ago and was back on the stem cell unit being treated for a graft vs. host disease flare-up when she caught the H1N1 flu at the same hospital that my Dad had been at and ended up with ARDS and intubated in the ICU. The situation was eerily similar to our situation just over a year ago, so I offered to stop up and see if I could be of any help in navigating the ICU.
Even though the unit had moved to a brand new space since my Dad had been there, it still felt like the same unit to me. It was still on the same floor, just in a different building, and the layout was also very similar to the old unit. Suffice it to say when I stepped off the elevator and into the unit and heard the same low beep of the monitors that still occasionally haunts me in my dreams that I had a strong urge to run in the other direction. After taking a few deep breaths, I proceeded through the unit to find my friend and visit with her family in her sister’s room. Her sister, of course, looked nothing like herself. No one does with a breathing tube. She was on the paralytic medication because she had been fighting the breathing tube earlier in the day, so she was not able to move at all. She also was extremely puffy from all of the extra fluid her body was retaining, common with respiratory failure. My friend and her parents filled me in on what the doctors had been telling them and again, it was very similar to what we had heard with my Dad. Unrealistic timelines that she wasn’t able to meet, a “doom and gloom” attitude from many of the care providers. “Liz, I feel like you really saved your Dad’s life,” my friend confided in me, “But I’m worried that I don’t have the same medical knowledge that you do and I’m afraid I’m not going to be able to help my sister.” I gave her a few pieces of practical advice that I realized may be helpful for many families that are trying to navigate the complex world of the intensive care unit.
1.) Make the patient’s room a “Negative-Free” Zone
We made it clear to all of the providers in the ICU that my Dad’s room was to be free of any negative talk. He was there to fight and we were there to be his advocates. We understood that there may be set-backs and bumps in the road and we absolutely wanted to be informed of them, but preferred to be informed in a space other than my Dad’s room. Even though he was heavily sedated, we still felt that it was disrespectful to be talking about “doom and gloom” topics in front of him, when he was unable to respond. During rounds as well, we asked the attendings to keep all comments regarding prognosis outside of the room and keep the talk in the room as positive as possible. When there were setbacks, we had the doctors talk to us in a separate room away from the bed space in order to lay out the problem as well as the potential solutions.
2.) Decorate the Room
Hospitals have a way of completely depersonalizing someone. Especially in the ICU, where the person is not able to interact, it is easy for care providers to forget that the patient in the bed is someone’s husband or wife, father or mother, son or daughter. That the person has a successful career, loving family and friends, and a unique personality. The minute one steps into a hospital, they put on the same hospital gown as everyone else in the unit, wear the same blue footies. Make that a cancer patient with no hair and it makes it even easier to forgot who this person actually is. Sometimes I think that is how care providers cope with working in a place as stressful as an intensive care unit, where patients do not always get better. When someone is unable to talk or even move on their own and their care is completely in the hands of their provider and the machines that are keeping them alive, it makes it a lot easier to forget that your patient is a human being. To help remind your care team, I always recommend that families bring in lots of pictures of the person doing all of the things that they love and that make them unique. We plastered my Dad’s room with pictures of him hiking out west, walking on the beach and swimming in Lake Michigan, and with his family. We also hung cards everywhere to help people see how much he was loved and missed. And we almost always had his iPod playing with his favorite music. Today when I went back to visit my friend, she had done the same for her sister. Everyone who came in the room today while I was there commented on how much they loved the photos. Especially in the ICU, where we often do not have the opportunity to get to know the person very well before they end up with a breathing tube, it helps us to learn a little more about the person that we are caring for, thus making the care providers even more invested in the care of that individual.
3.) Don’t Rush The Patient
Make it clear to the team that you are in it for the long haul and that you are not on a time limit. I called my Mom the other day to tell her about my friend’s sister and the first thing she told me was “Tell them not to let them rush her!”. It’s true- some people don’t do well when you are moving too fast and making too many changes at once. My Dad is a very deliberate person- he thinks through all decisions very carefully before making his move. It was no surprise to us that whenever they tried to move too fast with him that it almost always backfired. I think this is something important for families to think about well. Recently I have had several families that have pushed extra hard to get the breathing tube out before the patient was ready. Our docs agreed to try, and both times it backfired and the patient had to have the breathing tube reinserted. Patience really is key and allowing yourself permission to take as much time as needed will help your care team understand that you are in it for the long haul as well.
4.) Talk to the Fellow
One thing we found to be extremely helpful with my Dad was taking a little time in the afternoon to sit down and get an update from the ICU Fellow. The Fellow is kind of the intermediate level person- above the resident who is still in their general medical training and not quite yet an attending, the main doctor directing the care. A fellow has completed their residency and gone on to complete 3-years of specialty training in the ICU before they can become an ICU attending. We found them to be extremely knowledgeable about my Dad’s care, without being jaded or too opinionated or just too busy to spend the extra time with us. After awhile, we stopped being in the room for rounds because it was just too depressing. Instead, we requested a short afternoon meeting with the fellow to be updated on my Dad’s condition, the current plan of care, and goals for the day.
5.) Keep Candy in the Room
This was an easy one for us, being a “candy family.” My Dad and his brothers worked for the family candy business for many years, and even after the business was sold several years ago, one of my uncles continues to work for a different candy company. Every time he visited my Dad in the ICU, he brought several bags of candy that he left out for the staff. Trust me- in the ICU, word gets around fast when candy is available and it will bring extra people to the room. While they are there eating your candy, you can ask for updates or have have any lingering questions you may have answered. Another one of my families in the ICU where I work swears by this as well. There is always candy in front of their room and the Dad told me that especially at night it brings the doctors around more often and he is able to get more updates that way.
6.) People Get Sicker at Night
I don’t know what it is about night time, but it never fails that patients tend to have more problems at night. My Dad would spike a super high fever every night at 1am. When he did that, his oxygen levels would drop and he would then require a bump in the amount of oxygen that they were giving him through the vent, something we always saw as a huge setback. I stayed over several nights in his room but never got any sleep because he inevitably would get sicker, and I would be awake all night worrying about what was happening, until morning came, he did better, they were able to lower the amount of oxygen they were giving him, and everything would be just like how he had started the night. Because of this, I eventually had to stop staying overnight and convinced my family members to do the same. We talked to several nurses and had a team of 2 or 3 nurses that we trusted that agreed to care for him each night that they were working, and we then felt comfortable enough to go home (or in my Mom’s case, go to the hotel down the street) and get some rest. My friend brought up the same concern with me about her sister today. Apparently she has been doing great during the day, but whenever night time comes, she always has several setbacks that are inevitably resolved by morning. Especially when a patient has a breathing tube and is medically paralyzed, I always encourage families to try to go home and get some rest and assure them that should anything change, we will call right away.
7.) If You Like Your Nurse, Ask If You Can Have Them Again
Each unit does staffing differently, but if you have a nurse that you really like, ask them if they would be willing to take care of your family member again. Most units will be able to accomodate this request in some way. At my unit, we have patient “teams” where once a nurse signs up to be on a patient team, they care for that patient every shift they work until the patient leaves the ICU. The ICU where my Dad was works differently- the nurses are allowed to choose the patient they want when they arrive for their shift. We asked the nurses that we liked to “choose” my Dad again, and we also talked to the nursing manager and made sure that she was aware that we valued continuity of care. Because most nurses work 3-12 hour shifts per week, for the most part, especially when my Dad was the most sick, we were able to have the majority of our weeks covered by the same 2 day shift nurses and the same 2 night shift nurses. But as a nurse, I can say that if you let me know you appreciate my work, more than likely I will be happy to come and care for your loved one the next time I’m working.
8.) Ask a Lot of Questions
Ask questions about everything. Especially if you are not a medical person. Ask for your nurse to explain the medical equipment, what the numbers mean, what they are watching for, what each medication is for. Sure, as a nurse, I occasionally find all of the question asking annoying, but it also shows me that you are invested in the person and want to understand the care they are receiving. I know that my friend and her family are good about asking questions (it somehow comes with the territory of being an oncology family I believe) and immediately noticed today when I was visiting how well the nurse was involving my friend her care. She asked questions about whether certain bruises had been there before, and asked her questions about how she had reacted to a certain medication. Sometimes these things end up getting lost in nursing report, which can occasionally turn into a game of telephone (hence the way my Dad went from having Myeloma to Melanoma- two completely different types of cancer- because it had been passed along inaccurately in nursing report). But family members are only focused on their family member, and are often very good at remembering all of the events that have occurred, even if they don’t always understand the technical implications of each. Asking questions shows that you are invested and that you are paying attention, and will remind your care providers that you are a very valuable piece of the patient care team.