Submitted by Jen Hoover
She was only 36 years old but Sally was dying. She spent a lot of her life in the hospital which lead her to have a complicated medical and surgical history. This hospital admission had already been five months long when I came along.
Sally came to the hospital with fluid overload and shortness of breath. She was admitted to the floor but was quickly transferred to the ICU. Sally was soon in multi-system organ failure requiring multiple medications and machines to keep her alive. It was a happy day when it was decided that Sally had seemingly recovered and was sent to the floor where the more extensive rehabilitation could be performed. Sally was on the floor for several weeks; she became fluid overloaded and was transferred back to the ICU. Her medical team worked hard to get her well again, sent her to the floor where she again became fluid overloaded and fell into respiratory distress and sent back to the ICU. This was a vicious cycle, and all involved in Sally’s care were a part of; no one could seem to stop it.
It was her fourth or fifth ICU admission when I met Sally. When I had her as a patient she already had a breathing tube, was sedated, and on a diuretic drip to try and remove some of her excess fluid. She had been in our Surgical Trauma ICU for over a week and a half. This ICU visit seemed much like every one before; except this time Sally’s mother Nancy brought up withdrawing support.
Sally and Nancy had a close relationship; one of the bonds they shared was sign language. While Sally was intubated she would communicate to her mother through sign language; this was an easy way for her to communicate to all of us as Nancy would interpret her signs for us. One day when Nancy was at Sally’s bedside Sally took her own hand, made a fist, stuck out her thumb and made a small circle under her chin; Nancy immediately knew what this meant; Sally said she was suffering. Nancy asked to speak to one of her daughter’s doctor’s Dr. Becon, she spoke to him about withdrawing support. This was a hard conversation for all of us to have since Sally was only 36, had two children at home and had recovered from conditions much worse than this one before. It was decided to wait a week and see what Sally’s progression had been before withdrawing any support.
The Sunday I had Sally was a week from the day Nancy talked with the doctor’s. There was another meeting with Dr. Becon to discuss Sally’s status. Over the past week there had been little to no improvement. It was a tough call to make but it was decided to consult our palliative care team to make this transition easier for all involved. Later that day Nancy sat down with the team and discussed her options, so many decisions over whelmed Nancy. It was set that Nancy would go home and think about her options and would meet the next day with the same palliative care team.
Monday afternoon came and the meeting was in progress. Nancy had decided that she wasn’t quite ready to fully withdraw support, but she surely did not want to escalate care if it came down to it. Nancy also stated that she wanted to bring Sally’s oldest son; who is only 15; in to see his mother before any final decisions were made. The son’s visit was to take place the next day at two o’clock PM. This was hard for me to hear since I knew I was going to be the nurse the next day that would have to stand beside Sally’s son as he looked down at his mother for the last time.
All that night and the next morning I rehearsed in my head what I would tell the boy, how I would explain to him what all the tubes and machines were, how they all worked and why his mom needed them. Sally had a breathing tube coming out of her mouth that was connected to a ventilator that was supporting each of her breaths, she had a central line coming out of the left side of her neck which allowed us to not only give her fluids but also to draw her blood, she had a second tube in her mouth that went into her stomach that we were feeding her through, there were multiple wires attached to her body that were hooked up to a monitor that allowed me to watch her heart rate, blood pressure, oxygen saturations and her respiratory rate. How would I ever be able to explain all of this and the multiple bandages Sally had accumulated covering where her frail skin had had enough and blistered or torn, to her son in a way that would be truthful, but not too scary. That morning I decided that Sally was going to have “a spa day”. She was going to look beautiful when her son came to see her later that day. I enlisted the help of the nurse tech Anne, the two of us washed Sally from head to toe, we combed out her knotted hair, changed all her dressing so they were pristine and white; I even added extra padding over the skin tears just in case they started to bleed her son would not see it. When we were done Sally was on perfect white sheets, had a new gown on and her head lay softly on her freshly fluffed pillow. She opened her eyes at the end of her spa treatment and looked at me; that is the moment I looked into her soul and could see that she was thankful for my care and my hard work, but she was tired, she was done, she wanted nothing more in life then to end her own suffering.
The rest of the day I waited for her son to walk through the door, instead it was her mother Nancy, all by herself. She explained that her grandson had other plans and would not be coming in today. At that moment I was expecting there to be a weight lifted off my shoulders, I wasn’t going to be the one to have to do all the explaining to Sally’s son; I was off for four days after today, some other nurse would have to deal with it; but instead of feeling relieved I was sad, sad that Sally’s suffering would not end today.
This experience made me realize that sometimes the hardest things we have to do as nurses are the things our patient’s need us to do most. Sally needed me to help her mother and son accept the truth, she needed me to be loving and nurturing to them as they stood at her bedside, she needed me to be the hug she could not give, the smile she was too weak to muster and the voice of reassurance she could not speak. I left work that day and hoped that the nurse that was assigned Sally the next day had also come to this realization about nursing. Sometimes our patients need us to be quick and smart and critical thinkers; those were the things we are trained to be, those are the things that seem to come easy to most of us in the ICU. But sometimes our patients simply need us to be honest and nurturing and reassuring; these are the hard ones, there is no training for any of these things, the thought of this makes some nervous, awkward. I realized that day looking into Sally’s eye’s that it is something that just happens, you know it needs to be done and you do it. Though Sally was grateful for the care that I had given her that random Tuesday, I will be forever grateful to her for showing me what nursing is truly about.