By Brenda Jaszczyszyn, RN, CHPN-Clinical Leader
On a Thursday afternoon with a previous employer, I had a full day of visits planned while covering for another nurse who had the day off. In the life of a hospice nurse, it is very common to make emergency visits to a patient’s house in between scheduled case management. Little did I know, this particular Thursday afternoon would change my philosophy of care for life.
I was called on an emergency visit to assist with a leaking catheter. As this situation was urgent, I rushed over to the patient’s home, received report from her caregiver, and took care of the catheter problem in just a few minutes. I then asked the patient if she had any other questions or concerns. I did not expect the magnitude of what was about to transpire.
Now, this patient (I will call her Thelma) had a brain tumor which was making communication difficult. Thelma knew what she wanted to say but the process of knowing what to say and actually forming the words was greatly delayed. Thelma had to work very hard on forming each individual word, sometimes taking up to 60 seconds for a basic phrase. She had also been started on a long acting narcotic on Monday morning to help manage her pain. By Monday night she was sleeping most the day and this continued through Wednesday. When a person is new to narcotics there is a period that could last approximately 3-5 days where they have increased sleep as their body adjusts to the narcotic. Also, they may not have been sleeping well because of pain, and now that the pain is controlled, their body takes advantage by getting all the sleep it needs.
Thelma had 23 visitors between Tuesday and Wednesday, and all 23 visitors gave her permission to die. Throughout different ways of communication, they all assured her she did not need to hang on for them.
Well, when she had adjusted to the medication and became alert again on Thursday, she was angry. She felt all those people wanted her to die and she was not ready to go yet.
It took her over 30 minutes to tell me this story. I sat there, made eye contact with her, and let her tell her story on her time. When she was done, we discussed the misguided motivation of her visitors. She finally accepted that everything was all said in love and we decided they had been watching too much Dr. Phil. I assured her no one wanted her to die, but they also did not want her to linger and suffer. By the time I left she was able to laugh about the whole situation. This visit that I thought would take 15-30 minutes tops, took almost 2 hours due to her communication deficit and my desire to simply listen.
The next day my manager received a call requesting that I now become Thelma’s case manager. The reason being -I sat there and let her tell her story without interrupting and without finishing her sentences. That was not her experience with the other case manager at that time. This experience really brought me home to the importance of truly being present for my patients; giving them the time they need and allowing them to be in control of their situation; most importantly, not letting my schedule dictate their care. I will never forget Thelma and the lesson she taught me.
If you have a chance to be a listener for someone facing the end of their life, or if you are a caregiver in any role, my wish is that you don’t forget Thelma either.