A Special New Year’s Eve
By Beth Baldwin, BSN, RN
Beth Baldwin and Christine Smith
It was Saturday, Dec. 31, New Year’s Eve. I had just been off a nice stretch for the holidays and returned to work rested and ready for the weekend. Little did I know that it was not going to be a typical day.
I work on an Intermediate Medical unit in a busy Boston hospital. The acuity is high, the pace is even higher and we are always on the go. This particular day started like any other. I had received report from the night staff, and it looked to be an average day, until I met one of my patients.
We’ll call her Linda. She was a 45-year-old female who was admitted to the hospital for pain control. She had a complicated history, including metastatic breast and ovarian cancer. She had a right modified radical mastectomy and a left simple prophylactic mastectomy in the past, along with a total abdominal hysterectomy. Three months prior to this admission, she was diagnosed with leptomeningeal disease causing her to have severe headaches. She had been previously treated as an outpatient, but she was admitted to the hospital for more aggressive pain control.
Before I was able to get into her room, a family member came out of the room and said Linda was in terrible pain and wanted me to check on her. I checked her medication record, and it showed that the night nurse had just medicated her. There was no other medication that I could give her at that time. I entered the room and saw a woman lying in bed with a grimace on her face. She looked like she was afraid to move any muscle, and she anticipated the pain she would feel if she did. She was taking very shallow breaths, trying to remain as still as possible.
Linda’s head was slightly hyper extended, and the expression on her face clearly indicated that she was in pain. I introduced myself and told her that I would be her nurse for the day. She somehow managed a slight smile and said that it was nice to meet me. She did not complain of excruciating pain, she just said that she was uncomfortable and was afraid to move. I offered to give her ice packs, hot packs or to reposition her, but all she wanted to do was lie still. I left the room to call the doctor for some additional pain medicine.
I gave her the additional pain medicine that was ordered and left the room. When I returned 15 minutes later, Linda looked like a new woman. She was sitting up in the bed, smiling and laughing with her family. I was shocked and could hardly believe that one extra dose of pain medication could cause that much improvement, but I was glad to see her feeling better.
Over the course of the day, Linda had periodic episodes of intense headaches and pain. The physicians had been in to see her and attempted to adjust her pain medication regimen. She would wax and wane from talking on the phone to hiding her head under a pillow to escape from the pain. The episodes did not seem to be linked to her pain medication schedule. It was so difficult to manage, and it was so hard to see her so uncomfortable.
Her family was amazing right from the start. They were so in tune with her needs that it was almost like a silent movie that did not require any words. They all knew what they needed to do for her and for each other.
My first contact with the family was with Linda’s sister. She was a petite woman, delicately manicured and obviously devoted to her sister. I could tell that she had been crying earlier, her eyes had a hint of redness to them in addition to a look of sleep deprivation. It was clear that she was strong, but wishing that she were stronger.
As the day progressed, I was able to look into Linda’s medical record to review more of the details of her case. As I was reading notes from different medical services, I noticed that there were discrepancies as to her code status. Some of the notes said that she was a “full code,” and other notes stated “DNR/DNI.” I quietly asked Doug, Linda’s husband, if she had made her wishes clear as to what she would want us to do if she stopped breathing or if her heart stopped. He said that she was DNR/DNI and that he had a copy of her advanced directive at home.
I proceeded to notify the intern on the case. As our “first call” through the hierarchy of the medical chain, this doctor often has the most bedside contact with the patient. When we spoke, he clarified that the patient was DNR/DNI, and he verified that the order was on record. According to the hospital’s policy, the attending physician has 24 hours to document the code status in the chart to confirm the intern’s order. There was no attending note in her chart, but we were coming up to the 24-hour mark. I paged the attending physician, and he assured me that he would be there shortly to assess the patient and document his note.
After the attending physician had met with Linda, I discussed the patient’s condition with him. We spoke about her disease process, pain management and the goal to keep her as comfortable as possible. He concluded the discussion by stating that he asked Linda what her wishes were regarding heroic measures, and the patient said that she was “not ready to die.” He said she was a full code. He would not sign off on the DNR/DNI status.
When Doug returned to the room, I told him about the change in the code status that was documented by the attending physician. He was furious and could not understand how a physician who had just met Linda for the first time could make that change in the plan of care after one short visit. He was frustrated that his wife had been asked to define her code status once again, while she was feeling so poorly. I immediately paged the attending physician back to the floor so that we could readdress this issue. The patient was receiving huge doses of narcotics to keep her pain under control, and there was a chance that the pain medication could suppress her respiratory drive. We all had to be clear as to what we would do if that situation occurred.
The doctor called back saying that Linda had the “decisional capacity” to verbalize her wishes. The fact that she had an advanced directive at that time was meaningless because she appeared to have changed her mind, and he had to respect that. He acknowledged that Linda had been a little confused at times from the pain medications, but that she understood the question as it was asked. She did not want to die.
The family gathered together to understand the change in Linda’s code status. They were already upset, and I could understand their distress. They did not want to put Linda through any further upsetting situations, but they knew this issue had to be resolved. I wanted to offer the family some simple solution but knew there was only one way to get to the bottom of this issue. Tears, anger and frustration filled the group. We were going to have to talk to Linda about her code status again.
Patricia Brita Rossi, left, and Christine Smith, front right, who nominated Beth Baldwin, front center, gather with Tower 14AB nurses to celebrate the Essence of Nursing Award.
While we were discussing the situation, it was hard for me to retain my professional composure. I felt for each of these people. The husband wanted to do what was best for his wife. The father appeared helpless, not wanting to make eye contact with any of his family members. The stepmother could not understand why there was an issue in the first place; a look of confusion and dismay was apparent on her face. The sister was angry that Linda would be burdened with this again. She wanted to race home to get the advanced directive so there would not be any more questions. I understood what they were all feeling and felt the responsibility to help in whatever way I could.
The attending physician came back to the unit, and we all entered Linda’s room. Doug sat next to Linda and held her hand as he started to talk. There were a few long periods of silence. I could tell that Doug was looking for the right way to bring up the question at hand. I watched him take a deep breath, sigh and start to talk to Linda about that pain that had brought her into the hospital.
Linda talked about how bad the fits of pain had been. She said that she would not want to be in that much pain ever again. Her sister asked what Linda would want us to do for her if the pain were to get that bad again. Linda said she would want to get pain medication. When asked what she would want if she needed so much pain medication that it would cause her to stop breathing, she replied that she would still want the pain medication - “Let nature take its course.” Linda said that she did not want to die, but she understood how grave her condition had become. Linda was clear that she did not want any heroic measures to keep her alive. She was at peace with her decision.
The attending physician joined the conversation and spoke very gently to Linda. He spoke of the difficulty that these types of situations can cause. With a tear in his eyes, he said that Linda’s decision was clear. He wished everyone a good night and a Happy New Year. He left the room and documented the meeting in her medical record with a clear order for “DNR/DNI” in his note.
There was a dynamic change in Linda’s room at that moment. We all were able to take a deep, relieved breath for the first time. The sisters hugged, the stepmother put her hands together seeming to offer up a prayer, Doug held Linda’s hand ever so gently, and we all dried our eyes.
It was now after 9 p.m., almost two hours after my shift was scheduled to end. It was New Year’s Eve, and the mood in Linda’s room was that it was time to celebrate. Additional family and friends had arrived and were congregating in the family waiting room. Linda wanted to go and sit with her family and friends, and enjoy the evening. I was glad that Linda was feeling up to the impromptu gathering and was touched when they asked me to join them before I went home for the night.
When I arrived at the family waiting room, the feeling of celebration was palpable. Everyone had a smile on his or her face, especially Linda. She was sitting in her wheelchair, quietly grinning from ear to ear. As I entered the room, everyone cheered “Happy New Year.” I stayed for a short visit, enjoying the company I was in. Although I would have stayed longer, I was anxious to go home. I said my goodbyes and told them that I would see them all in the morning when my shift started at 7 a.m. Another round of hugs, a check in with Linda to make sure she was doing ok, and I was on the elevator heading to my car to go home.
I had many mixed emotions on my ride home. I was tired from a long and emotional day back at work. I was saddened to think of all that Linda and her family had gone through to battle this disease. Linda’s strength and her optimistic outlook on life inspired me. I was touched to see how warm and caring her family was. I was moved to see the tender touch her husband had as he held her hand in his. I laughed as I thought of her playful reluctance in sharing her favorite caramel corn with her family, but openly offered some to me with a genuine smile on her face. I was proud of the work that I did caring for her and her family, and I was hopeful for a good night’s sleep… for all of us.
Linda remained in the hospital until her death one week later. Her family was at her bedside, and I felt very fortunate to be there with them when she passed away.