June 7, 1989: Last night I went to work with a feeling of dismay. One more night of the same ungratified work. Nursing was becoming a profession I wasn't sure I wanted or even understood any more. Critical patients came in some already brain dead, families not understanding the extent of the injury and physicians not understanding the families need to know. Often I would hear the doctors say "lets keep a blood pressure 'till morning for the family's sake." Then I would find myself mixing industrial strength levophed and infusing it at a ridiculous rate in order to have a number to write down.
The family ends up staying awake all night hoping/praying for a miracle, only to find that it will never come. The only miracle is death when the heart finally stops and the family can get on with their grieving.
This night was different. I called the ER to tell them I was ready for the patient they had to send us, a 67 y/o w/f right ICH with large infarct. When she arrived we transferred her into the bed, she was intubated, and ventilator dependent. I looked at her pupils: unequal, fixed, she had bilateral corneal reflexes and blink, positive gag, and strong cough.
As we moved her, she decerebrated. I placed her on our monitors, inserted a rectal temerature probe that started at 38.5c then .6, then .7 and continued to rise to 38.9c. I gave her a Tylenol suppository with small results. The doctor inserted an arterial line, then she started having coffee ground emesis, so an NGT was inserted, Foley catheter to bedside drainage. We finally finished with all the admission red tape and I was able to let family start coming in.
The first in was her husband and one son. I talked with the husband trying to answer any questions he had, but I probed first as to what the doctor had told them. I needed to know where to start. The husband told me...
"They tell me they could aspirate the blood and take out some of her skull to relieve the pressure, but that the damage had already been done."
"You know" he said we've been married 51 years- we have 5 sons. I said that she must be a very special lady to take care of all those men in the same house, "yeh, she was a hard worker, she spoiled us."
"We just lost a daughter-in-law about 2 years ago with the same thing she was only 47 years old."
"We had them take her off the breathing machine and lasted 2 more days."
While I talked with the husband, sons came in and visited. One son came in very upset with a raspy voice he said "It's so hard to see her with all these tubes in, it's so undignified to die this way." Then he hugged his father and said "I'll move in with you dad you don't need to be alone."
After all the family was in they returned to the lounge, and I was so touched by all their love as each one came in and told her they loved her so much and how special she was to them.
The phone rang at the desk and one of the son's asked if we had taken her off the breathing machine yet. It was the first I had heard anything about the decision they had made. I asked if they had spoken to the doctor and they had. I told them I would talk with the doctor and get right back with them.
I then put a page in for the neurosurgeon on call. He walked in the unit as I was paging him. I confronted him and asked if the family had talked with him concerning pulling life support. He said that they had. I passed on to him that they were asking when this was going to be done.
Doctor C. wrote the orders to remove the ventilator and extubate. I returned to the room where there was family at the bedside. I told them that if they would wait in the lounge I would remove the tubes and let them back in. As I disconnected the ventilator it dawned on me that the doctor had not written a DNR, so I asked the nurse in the room with me if she would take the order sheet to the doctor and ask him to write the order.
I then proceeded to extubate her. Her vital signs were normal and she started to breath on her own.I was monitoring her oxygen saturation, it began to drop down to 89%. I had the respiratory Therapist place a nasal cannula on her for comfort. I am sure it was more for my comfort than it was for hers.
I cleaned her up and let the family back in the room. Her husband never returned. The son that had been so upset about the tubes returned and stayed at her side for some time. He talked with her and held her hand, and asked me what was the tube in her nose, I explained it was for comfort, and that we were only doing comfort measures as they had requested. He thanked me.
The doctor wanted me to transfer her to the floor because we had another patient with a SAH in the ER we needed to admit. We had another patient that was able to be triaged to the other unit and I requested to let me keep this patient here for a while longer so the family could have some private time with her, I couldn't just pull the tube and send her to the floor, when we didn't even know how much longer she would last.
The son, at his mothers side, cried and kept telling her how much he loved her and how special she was. He said to me "We all love her so much, she would get up at 4 in the morning and iron our clothes, she even ironed our underclothes, she spoiled us so much."
The time passed, we talked about the type of person she was, he talked with her and kissed her, held her hand, stroked her face, then the time came when they decided to go home. He was exhausted and had been the only one of the sons that had stayed. I told him I would call him if the time came while I was on duty. I gave him one of our unit cards with my name and the unit number and told him to call anytime he needed.
As the night progressed her heart rhythm became more irregular, and her breathing more distressed. I elevated her head and removed the pillow, her breathing eased. It was 0700 I gave report and left the room. She died after I left, while the doctors were doing their rounds. The resident called the family and gave them the news.
I returned to work the following night and received a call about 2000 from the son. He asked me if his mother ever regained consciousness. I told him no. He thanked me for the care I had given his mother.
I was so touched, my heart ached for them. I realized that so often we keep doing and doing to patients, and many families can't let go because of guilt they have that they never said all the things they wanted to say, or just the fact that they don't understand the full extent of the injury, or many doctors can't let go and so they give the family that minute chance of recovery so they hold on. They hold on and drive themselves to exhaustion through severe depression, they can't hold on, they can't let go. They are lost in the middle and the more they do, the more treatment they OK, the more they give, the more they lose. They no longer know which way to turn. They're lost. They want guidance, but they want more, they want us to make the decision for them so they won't feel guilty later. So, they drain our strength, all the nurses that they deal with, they take our strength, they drain our emotional strength like bloodsuckers, so we no longer can look at the situation from a neutral position. We're in the middle looking out. We continue to try to guide them through their process of grief. We become cold and emotionless and we give them only the facts, very straight forward.
This family did not fall into this pattern, they had been close, they had said all the things they needed too, long before this time. They had talked about being kept alive on machines and they all were aware and knew that their mother did not want this. They received the information from the doctor, and they took it, and talked about it, and felt comfortable with their decision. It was saddening, it was fulfilling, it was refreshing, and it was positive, and I needed that. I then remembered why I had become a nurse.