I Just Want To Know!

I took care of a patient last week for three consecutive days. This patient was admitted for a liver evaluation to see if he could be a candidate for a liver transplant. This patient was in his early 60’s and had just retired from being a pharmacist. He is a family man with a wife and children. He developed a tumor in his liver and had undergone chemotherapy in hopes of treating the cancer and radiation to shrink the tumor. These were the first steps for him to possibly become a candidate for a liver transplant.

Moreover, he was admitted to the hospital I work at currently. Pleasant man. Extremely knowledgeable and knows exactly how the hospital system works. However, in the hospital we like to assess our patients and rate them on how “alert and oriented” they are. The best score a patient and get is “alert and oriented x4” or “a/o x4”. Generally what that means is, that patient is able to verbalize their name, where they are, what the date is, and know the general situation of what is going on. For me, I rated this patient, “a/o x3” only because he was unable to tell me that date and would occasionally mix his dreams with reality. However, he knew he was mixing his dreams with reality and would verbalize it as well regarding his dreams as “super dreams”. Meaning, they felt like they were real and that was why he would confuse them with reality.

It is common with liver patients that they become confused. This is because when the liver is not functioning appropriately it is unable to metabolize the ammonia in the body. When ammonia levels go up in the body a person will get confused. Therefore, the doctors also hesitate to give opioids for pain control because those medications can cause confusion as well. The doctors don’t want to confuse themselves on what is causing the confusion in their patients.

Now, back to my patient. The whole point of his hospitalization was to determine if he was eligible for a liver transplant. The doctors had ordered a series of procedures, tests, and consults to be completed to make the decision on whether he was a candidate or not. By day three when I arrived in the morning and received report from the night shift nurse the patient had completely shut down.

The night shift nurse reported to me that the patient was taken to dialysis at about midnight. When he was in dialysis he reported he was having a tremendous amount of pain and asked for pain medication. From my understanding it took very long for the nurses to do anything about it and the doctors never came to see the patient nor did they order any pain medication. Therefore, the patient became angry and threatened to pull his perma-cath (IV that is threaded into a large vein for hemo dialysis only) out. He never actually attempted to pull the catheter out but the nurses still decided to tie his hands down in what we call “two point restraints”.  They also decided to end dialysis early because the patient had become so agitated.

After receiving report I went into the room to see my patient and told him that I would untie his hands. I asked him to tell me what happened and he repeated the entire story for me. He told me he was shaking in pain and no one cared. That he was tied against his will. That he wanted to leave. He told me he did not trust anyone in the hospital. He told me he was refusing all care and procedures. That he wanted to leave against medical advice or AMA. The report I received was that my patient was confused and that is why he was put in two point restraints.

A confused patient is unable to explain and recall an entire event that happened over night or tell me that he wants to leave AMA. I was extremely upset and saddened for my patient. I paged the team (the doctors) informing them that the patient was refusing all care, meds, and procedures and would like to leave. The response I got was, “we can’t let a confused patient decide what is good for him”. I explained that this patient was well aware of what he was saying and I cannot force anything upon him in terms of treatment and care if he has the ability to comprehend and refuse them! I was annoyed that everyone just labeled him as confused because he was a “liver patient”. I knew him better than anyone on the health care team. I was the one that had spent three consecutive 12-hour days with him. I think I would know best if he were truly confused.

That day at noon the oncology team came in to consult the patient and when they walked out of the room I asked them what was going on. The lead physician (the attending) told me, “this patient is not a candidate for a liver transplant; there is no way”. I asked them if they would tell the family that today so that they can have an answer and the patient can be discharged. The oncology team told me that it was the liver services decision and responsibility to inform the family.

Shortly after that the patients wife arrived. She was tearful and upset about what had happened over night. She made me cry because I would feel the same way if that had happened to my family. She told me that when he is in pain it is excruciating and she has seen him like that before. She told me she just wanted an answer because if he was not eligible for a transplant he wants to just go on palliative care and let nature play its course. I knew the whole time I was speaking with her that her husband was not a candidate from my earlier conversation with the oncology attending but, obviously, had no place to disclose that information to her. That is the physician’s job, to break the news and explain the alternative options. However, I promised her I would do everything in my power to get them an answer before my shift ended at 7 pm.

I paged the liver service doctor again and explained that there is no point in continuing to order more tests and procedures if they already have their answer! That it is completely unethical to drag a patient and their family through this if the exams, procedures, and consults already completed indicate that the patient is not a candidate. I stressed to the doctors that they must give the family a decision before 7 pm that evening. The physician told me the doctors would meet as a team and make a decision.

My heart was breaking every time I went into his room because my patient was refusing all his care. He was in so much pain and would not even take the one time dose of 5 mg oxycodone by mouth that I literally pried out of the doctors to help ease his pain. The patient thought that if I gave him that pain medication is would alter his chances of being discharged from the hospital because he knew as a pharmacist that usually we can not discharge patients if they are still receiving IV pain medications. I tried to tell him that was not the case because this was a pill. He did not believe me because as an institution we had lost his trust completely.

At 6 pm I paged the physicians again and told them the family was waiting for a response from them. At 6:45pm the doctors came to the room and spoke with the patient, his wife and his brother and broke the news to them. The physician told them he was not a liver transplant candidate. I stood there trying to be as strong as I possibly could. His wife began to cry and asked them to please give him pain medication and make him comfortable now that the transplant is not an option. She asked them to organize to have him transported to a facility close to home where they can treat him and put him on hospice. I had to walk out of the room because my eyes were filled with tears.

Some of the hardest news to get is that you are going to lose someone you love or have lost someone dear to your heart...it’s a surreal feeling. Reality just slaps you right in the face that someone you love is not going to be around in a few days, weeks, months or years and the initial reaction is to convince yourself that somehow it can’t be true.

I was glad they got their answer because its simply unfair and cold to drag a patient and their family days upon days for a diagnosis like this when the doctors already new the answer!! It made me so mad! It was completely unethical. Why?! Why do more exams and procedures when the answer was already decided? Why, when the patient was frustrated and already was refusing care? Why was he not given pain medication when he was is pain?! Why was no one listening to the family and the patients requests?!

It made NO sense at all to me! I understand that giving opioids to a liver patient could make him more confused and make it difficult for the physicians to figure out what is causing their confusion but, in the same token it is completely UNETHCAL to leave someone in pain!

As clinicians and nurses we have to learn to find the balance between what is clinically right and what ETHICALLY right. Sometimes, the ethical thing will hurt the clinical outcome but is BETTER for the patient. It infuriated me that everyone used the excuse that he was “confused”. He was not confused! He knew exactly what was going on. He could carry an intellectual conversation. He could tell you whom everyone was including himself!

It was bittersweet. I was happy the patient and family got their answer so that they could begin excepting the reality of the situation while beginning to plan for the future and I was sad at the same time for their loss.

It truly broke my heart. As a nurse, I knew I did the right thing. It takes a little bit a courage, a little passion, and a whole lot of compassion to really push the doctors and the entire team in the direction you want them to go. That is our job as nurses. Advocates. 

I always think to to myself, be the nurse I would want to take care of myself or someone I love. I guess what it really boils down to for me is...it takes one to know one...

As always, thank you for reading and feel free to comment.

Until next time.

-Norah