About a month ago I was ready to quit the MICU. Instead I decided to stay and “fight the good fight.”
So here’s round one:
On Monday I assume care of a patient who’s going on day 90 in the MICU.
I know her story well; I’ve take care of her at day 18, day 45, and day 67.
She’s young. Multiple MICU stays after complications from a transplant, but she is a fighter. Last time she was here for 9 months and no one thought she would pull through but she did.
So we forge on even though her case is looking more and more hopeless. She is the picture of agony. On her face is grief, pain, fatigue. The medical team has expressed that they are extremely doubtful that they will be able to get her out of the MICU.
When I take her pillow away from her head to readjust it, her head stays elevated, rigid. I take a pillow out from her legs and her knees remain bent, suspended. She is extremely cachectic. When she is awake, she cries. The family thinks that she is this way because the nurses are “sedating her too much.”
During my spiel at AM rounds I suggested a palliative care consult to the physicians. I am not told yes or no, I am simply ignored. I ask them for a response. “Yay or nay on the palliative care consult?”
From the attending:
“Well, we don’t want to call in palliative care, because we are afraid of making the family mad. Also, we have to defer to Dr. Magicalmiracle, the surgeon who performed her transplant. ”
Later, one of the transplant attendings came around. I followed him and waited to get his attention. I asked him about his thoughts on this patient’s recovery. Does he think she has a chance? He replies that she was this bad last time around and she made it through. I asked if she was this cachectic. He says he’s not sure. He also reminds me that Dr. Magicalmiracle, who performed the transplant, is the only person who has any say in what direction we are taking this patient. I tell him that the patient really appears to be suffering and was wondering if he would consider palliative care.
He replied that he would pass that info along to Dr. Magicalmiracle.
Boy was I ever naive.
I wish that someone had told me that YOU DO NOT MENTION PALLIATIVE CARE TO A SURGEON, ESPECIALLY A SURGEON WHO PERFORMS MAGICAL MIRACLES.
Later on the patient’s mother was in to visit.
We talked about her daughter’s life. We shared stories about her. I asked her if she thought she would make it through this stay. She told me no. She had said to her daughter recently, “B, we just need to get you out of this hospital and home to us.” B looked up at her mom and mouthed the words, “No, it’s not going to happen.” In light of this I asked her mom if she had ever considered palliative care. She said what’s that? I explained to her that it would mean changing the focus from getting B back to her original state of health to providing her with as much comfort as possible, taking away some of the more invasive treatments, letting her rest, getting her to a more peaceful room. The mom took all of this in and thought about it.
I left work that night feeling conflicted. I felt as though I did the right thing. My instincts were telling me that this patient was hanging on for the sake of everyone but herself. I was worried that no one would follow up on this. I emailed one of my resource nurses and told her about my frustration. She said she would follow up on it.
The next day she said that she had set up a meeting between our nurses and Dr. Magicalmiracle. Would I mind being the primary speaker since I was the one who set this in motion?
So now the game is on. I called the palliative care nurse for advice. “What the heck do I do? What do I say”
We talked about some strategies. Don’t pick a fight. Stay away from any emotional aspects of it. You are just setting a precedent for further communication between the surgeon (who was calling all the shots) and the nursing staff.
In the end I decided that all I really wanted to convey to this doctor was that we needed to hear from him what his goals of care were for her, what her chances of recovery were, if he thinks she can get out of this nutritional deficit. I wanted to tell him that the nursing staff was really becoming discouraged and so if he is still hopeful, then we need to hear it from him. We need to here his battle-cry.
Did you ever have a meeting with someone that was entirely civil, cordial almost; conflicts and grievances were aired out, you come to some resolutions… but then you walk away with this feeling that you just got screwed, hard.
He had the same wry smile on his face the entire time.
He started out by saying “Any first year medical student could tell that this woman has a very slim chance of making it out of here. But we discussed this ahead of time and she made it clear that she wants everything done, to not give up until the end.”
Then he said that it was brought to his attention that our nursing staff had been mentioning palliative care to the family, and letting them know that she was suffering. He said this was unprofessional and highly inappropriate. he said if we express to the family that she is suffering, we are responsible for making the family suffer many years down the line, wondering if they had done the right thing.
But, I said, nursing is with her 24/7 and she is indeed suffering. It’s hard not to let the family know this. I’m not sure how the family can look at her and not know that she’s suffering.
Well, it’s a tough business, he said, with that same wry smile.
Also, I reminded him that our attending had met with the family last week and conveyed to them that he had very little doubts that she would be able to make it out of the MICU.
He said, “That is a conversation that should only take place between an attending and the family or the patient. For anyone else to do so is highly inappropriate.”
I wasn’t sure how to take this. As usual, I deferred to my lack of experience. I felt bad for acting “unprofessional and inappropriate.” I guessed that somehow I had crossed a line that I wasn’t even aware of in the first place.
But I also felt outraged that this surgeon refuses to go into the room and do a physical examination of her. All he does is walk by her room, glance at her chart, and give her the thumbs up. I would hardly consider that “doing everything.” And what about when our team dropped the ball on her nutritional status. He says he is doing everything, but did he step in and demand his patient receive TPN? No.
I also felt like a pawn. If the doctors believe that no one should mention palliative care except for the doctors, and palliative care nurses believe that the nurse should be introducing the concept of palliative care into the picture… then I am stuck in the middle. I am being taught to advance the palliative care nurse’s agenda which is in opposition to the physician’s agenda.
That somehow doesn’t feel right.
I guess you could say that I have lost round one of “fighting the good fight.”
It’s scary being a transplant patient in the MICU. You are crammed into a room with various multi-drug resistant bacteria and fungi running rampant (and possibly even lice.) You wake up for one brief moment of terror, only to have the nurse press a few buttons on their IV pump and put you back to sleep. Eventually you manage to stay awake long enough to ask if you can die, and you are told no. You are not allowed to change your mind. You have a paper and pen in front of you that you manage to write “DNR!” on but that only means they need a second opinion to assess your competence. Then a fleet of first year psychiatry residents are unleashed into your room to determine what kind of drug therapy can make you not want to die. You don’t think they’ve invented the drug that takes away the depression of dying in an ICU, but you never know. Maybe cocaine would work. You hear bits of conversations of nurses talking about what the had for dinner or what their plans are for this weekend and you are drenched in your own stool but have no way of conveying this to anyone, except perhaps by the smell.
A tough business indeed.