The Good Fight

After listening to Josh describe Jenni’s condition, I decided Jenni needed an advocate.  I was not thinking that Josh was not up to the task, but rather that he needed to focus on whatever medical decisions needed to be made and focus on being there for Jenni. If there was a need to advocate on Jenni’s behalf, I would do it.

We were at Duke for days on end, and much of the time it felt like we were fighting the health care process. Most of the doctors were gruff and arrogant. Getting information was very difficult, and getting simple questions answered was nearly impossible. At the time I said that the doctors had the bedside manner of a disturbed cottonmouth.*

Finally, the emotions of the situation, the lack of information, the shoddy conditions of the waiting room, and the surly, arrogant nature of the medical professionals got to me. It was enough. The flashpoint was the doctors’ conversations about Jenni in Jenni’s presence. The doctors, believing that the situation was hopeless, were discussing disconnecting Jenni from life support in Jenni’s presence. Jenni, although heavily medicated and on life support, was aware of the conversations in the room. In fact, during one visit I asked if she wanted to listen to her mp3 player. She nodded her head. The mere idea that the doctors were discussing the removal of life support with Jenni able to hear made my blood boil. The family felt the same way.

Since I had promised Josh that he would not have to have any conversations with the medical team about things like that, I took it on myself to bring up the issue with the nurse who was working with Jenni that day.

I said, “Is there any way you can ask the doctors to not talk about disconnecting Jenni in here.”

He growled, “I’m just the nurse.”

“I know, but we are having a difficult time with this issue.”

“You know, I really should not be talking with you about her condition. Immediate family only.”

“You were just talking with her mother-in-law. I’m her brother.”

“I can’t talk to you. It is a matter of ethics.”

“Ethics. After the treatment Jenni and the family have been getting, don’t talk to me about ethics.” I said as I walked out of the room and headed down the hall to the waiting area.

Following me he said, “Do you have any training?”

With my rage piling up I yelled, “I have a doctorate.”

“Well, you are not immediate family, and I am not talking to you anymore. You have made taking care of your very sick sister harder. Get Out.”

“I’m leaving!”

With fury taking over I yelled some incomprehensible gibberish in his direction and walked out. Frankly, I was somewhere between proud and embarrassed at my behavior. I should not have lost my temper, but I was proud that I fought for Jenni. I did not ask how other members of the family felt. I did note that some of the other families wanted to applaud my actions as they had received similar treatment.

A few moments later, several members of Duke security stepped in the hallway, and Josh was called out. As he walked out I said, “They may throw me out of the hospital, but I want that nurse off the case.” Josh was as classy as always. When the security team confronted him with my actions, he said that I was just reflecting the concerns the whole family had. I was not thrown out, but I could not visit with Jenni alone anymore.

I reflect on that event and I do note one thing. I was walking away. I was not sporting for a fight. I was not trying to escalate the event. I was trying to leave. The nurse followed me to continue the argument. None of this is to say that losing it was right. I wish I had not. On the other hand, Jenni’s life and dignity were in the balance. For those, I would fight anytime.

It was a gift of grace that some members of my new church, Rosemary Baptist Church, showed up that day. In the aftermath of the event, Bernie and Myra Roberston took me to lunch in the cafeteria. I was still seething, almost ranting. I had been their pastor for less than three weeks, and they did not think less of me because of what happened or for my raw emotions. For that gift of grace, I remain grateful.

After lunch, I was able to regroup. I went back to the waiting room. The family and I had discovered a treatment by some doctors in Denmark for patients with symptoms similar to Jenni’s. We urged the doctors to look at the results. While the doctors were dubious, they carefully weighed the options. While they deliberated, we continued to look for other treatment options. We continued to pray. We continued to work for Jenni’s sake. We fought the good fight all the way to the end.

*I do not want to suggest that all of the doctors were bad actors. They were not. They were all excellent physicians. Their bedside manner and their arrogant demeanor, however, were on full display during Jenni’s hospitalization. There was one exception, Dr. Katz. He was not only excellent, but he was also compassionate. He was good to the family, particularly Judi. Judi was in the final semester of nursing school and had to take time off during Jenni’s hospital stay. He offered to write letters of recommendation for Judi as he witnessed her talent and potential during Jenni’s ordeal.

*I also do not want to have anyone think that I believe all nurses behave like the one I am describing. No, almost all nurses are exceptional people. They do difficult work often under extreme duress. The excellent nature of most nurses makes this particular nurse’s behavior stick out more. For some reason, he wanted to fight with me. He escalated the argument at every opportunity and refused to let me just walk away.