End Of Life Care in Thoracic ICU
By Diane Miller, BSN, MPA, RN
Nurse In-charge, Thoracic ICU, 11C
This clinical narrative is about a thoracic ICU patient and my role as her primary nurse in end of life care. Mrs. F, a 57-year-old female, went to DFCI on her son’s insistence to get a second opinion for her newly diagnosed stage IV metastatic, non-small cell lung CA. At her appointment she had significant SOB secondary to acute pericardial effusion with tamponade and RV collapse. She was sent to the EW and became unstable with tachy/brady rhythms and sats in the 80s. Emergently, she went to the Cardiac Cath Lab for a peri-cardiocentesis and pigtail catheter placement and admitted.
Her admission oncologist note read: “Spoke at length...she would like to do things to make her feel better, although she is aware she has an incurable tumor and she is concerned about her quality of life. We will address the long term issues once the acute issues are stabilized.”
On the cardiology floor, she had nicotine withdrawal, anxiety, SVC occlusion, recurrent pericardial effusion, and R upper and middle bronchus obstruction with R lower lobe collapse due to her tumor. She emergently went to the OR for a pericardial window and arrived on 11C, Thoracic ICU post-op. I met her the following day; she was intubated and extremely anxious.
Two days later, we extubated her; however, she only lasted three hours before we needed to re-intubate. Her family, a boyfriend and two adult sons, was very concerned and requested information. I asked them what they knew of their mother’s condition, and they voiced concern that they did not have a good handle of what was going on. I did not know what they had been told, and did not want to be the one to tell them their mother was going to die from lung cancer. The next day I made sure that the family spoke to all the big players from Oncology, Thoracic Surgery and Radiation Oncology.
Her care was complicated by R diaphragmatic dysfunction, escalating anxiety and issues around control. She wanted to be active in decision-making and was concerned about how her illness was affecting her family. The thoracic surgeon felt she might need a trach, but did not mention it to the patient or family and wanted to give her another try at extubation. I did mention a tracheotomy to the family as a “just in case someone mentions this.... this is what it means.”
After three days, we attempted extubation again. At this point, she had a discussion with her oncologist regarding her prognosis. I try to be in the room during important conversations like this so that I can reinforce the information and also use the same words. Her oncologist told her he thought we could get her to Christmas, which was a month away, but not to make any big plans for her birthday, which was in February.
Complications were beginning to multiply: she failed a swallow study, her pericardial and pleural fluids were both positive for metastasis; she had a recurrent pleural effusion, treated with talc pleuradesis, and she continued with radiation treatments.
At a family meeting with the thoracic surgeon, oncologist, primary nurse, continuing care, social services and family, the risks and benefits of having or not having a feeding tube were discussed. She agreed at this point to have a J tube placed two days later. She remained a full code for the sake of the surgery. Chaplaincy and Palliative Care were also called. Everyone’s goal was to get her home ASAP.
The night before her surgery, the decision was made to also do a trach along with the J tube. This decision was made between her and her thoracic surgeon. I was shocked when I returned to work after being off for two days to find that she had been trached. Was it the right decision? That isn’t for me to say; however, I did feel the decision to do the tracheotomy was made without the support or input of the entire team. She was going to be intubated for the surgery and the fear was that she wouldn’t extubate.
The next few days she made comments by writing notes and mouthing words like, “I feel like I am being tortured.” She voiced concern as to how her family was going to manage her care at home and each day her care became more complicated. We started teaching with the family. Anxiety continued to be an issue. She was requesting Roxicet or Ativan every two hours and wanted to be asleep all of the time. She had copious secretions, reaccumulation of the pleural effusion, diarrhea from the tube feeds and hematuria of unknown origin. She was steadily loosing ground.
After a particularly rough night, I walked into the room at 7:45 a.m. and held her hand. I reminded her that we had a family meeting set up at 1 p.m. I looked into her eyes and said, “Things aren’t going like you had hoped...we are not able to get you off the ventilator quickly and send you home. We could do a slow wean, but that is going to require many weeks and you going to another facility. Remember what your oncologist said that he didn’t think you would make it to February... I don’t know if you are going to have time to do the slow wean.”
She communicated to me that she wanted to go home and not to another facility. She also stated that she would sign whatever she had to so that her son could make the decisions, but she did not want to go on like this anymore. I told her that she was competent to make her decisions and that she could decide to do whatever she wanted. I asked if she would like to have time to talk alone with her son prior to the family meeting, and she said yes. I called her son and asked him to come in earlier. When he arrived, I filled him in on our conversation and shut the door and the curtain so the two of them could have a chance to talk without anyone influencing them.
At 1 p.m., we had a family meeting at the bedside with Mrs. F, one son and daughter-in-law, Social Services, Continuing Care, her primary oncologist, the ICU attending and myself as her primary nurse. Her oncologist note summed it up: “Patient is very clear that she doesn’t want to live like this. She desires sedation and extubation.”
We waited for her other son to come in. As a matter of fact, she was getting anxious to get it over with, but I pushed her to wait for him, as I knew he was on his way. At 4:15 p.m., she was removed from the ventilator and placed on a morphine drip with her two sons, daughter-in-laws and boyfriend at her bedside. She died at 5:45 p.m.
In looking back on this case, I believe the critical point was my frank discussion with her on her last day of life. So many times I have cared for patients who fumble from problem to problem without anyone looking at the big picture. I felt that Mrs. F. trusted and counted on me to be open and honest with her and her family and help them work toward HER goals. I tried to the best of my ability to do just that.