The journey I embarked on with John would be challenging to say the least. Why? Because he didn’t want to be getting all the invasive treatments for his heart failure, he didn’t want to keep coming to the hospital. How do I know this? I know it because John took every moment we had alone to relay to me how tired he was of fighting yet he couldn’t bear to let down his fiancé or his children by telling them he wanted to “just let go.” So John continued to fight time after time, in the hospital for weeks on end, miserable. He hated the IV pumps, he hated not being able to rest, and even worse—he hated not being able to live life within his own familiar surroundings. Somewhere along the way, during one of our countless talks, I made him a promise. I told John that I would back up and support whatever he wanted—that I was on board as long as he was, and that I would be there to walk alongside him during his fight as long as that was what he wanted to do….but when he was ready to let go and stop everything he could tell me and I would make sure any and all arrangements were made to carry out his wishes. Every time the evening hours rolled around he talked of desperately wanting to be back home in his favorite easy chair, watching the sunset, and enjoying a glass of wine.
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John was afraid of everyone. Initially he was afraid of letting me down as his nurse. I had noticed that with each hospitalization he got thinner and thinner, more tired, less willing to get up out of bed to walk or work with physical therapy. Once I told him I would support and do whatever he wanted, he let down his impossibly high walls and expressed deep seated fears of letting down the heart failure team and disappointing his family because they kept telling him he “had to fight” and that he “wasn’t allowed to go yet, he wasn’t allowed to be a quitter.” Much of the time I spent with John all I could do was support what he wanted to do—and this meant watching him be miserable, doing everything for everyone else while overlooking his own needs and wishes.
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I knew John well enough to know that when he was ready to say “no more” he would let me know. Until that time came, I did my best to incorporate every wish of John’s into my care plan. I gave him every bit of control that I could, allowed him to make as many decisions as possible about his day and what he wanted to do with his time. Still, it was gut wrenching watching and listening to John’s family push him into treatments he had no desire to undergo and forcing him to eat. He would signal me with his eyes and a small nod of his head, indicating he wanted me to intervene on the conversation but he knew that I could not and that I would not. We had agreed early into our journey together as nurse and patient that it was up to John to call the shots, and this included relaying his wishes to the family directly—this was a gift that had to come from him, and their gift to John would be letting him know they would support his choice to stop all the invasive care he was receiving.
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Closure for John and his family during this end of life period depended on a very big piece of the puzzle—communication. What would be said, heard, and shared would be remembered by John’s family long after his passing and it would also help John to tie up “the loose strings” he had been trying to take care of. Direct communication between the patient and family would be an important step toward a therapeutic and peaceful end of life experience for John. To say it was difficult not to scream to high heaven “He never wanted to be here in the hospital! He wants to go home! He’s tired!” is an understatement. I think any nurse would feel that urge after watching her patient “suck it up” and “do it for the family” for nearly a year—knowing his body was hurting and that he felt his life wasn’t worth living anymore. In hindsight, I still believe I did the right thing in supporting his fight against heart failure and keeping our conversations in confidence as he had requested. John’s trust meant a lot to me, it was the one thing I “could” do for him that he would later tell me helped him cope every time he had to come back into the hospital sicker than before.
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The year flew by and Christmas Eve had arrived. Both the heart failure and heart surgery teams wanted to place a biventricular assistive device into him because he was declining quickly. John was now on multiple drips and TPN. His coloring was horrible and he was cachectic. Sitting up in a chair next to the bed for more than ten minutes was difficult for John. But his family liked seeing him up in the chair, “it makes them feel better” he’d say. So we went through the motions….until Christmas Eve. I went in to say goodnight to John after his family had left. He asked me to close the door so we could talk. I sat down on the edge of the bed next to him and grabbed his hand. “Whats up?” I asked. His eyes were so gentle on me now and he had this special little grin that he would say was just for me. “Are you working tomorrow? “ He asked. I assured him I was (it was my second day of three) and he relaxed his head back onto the pillows and closed his eyes for a moment. He took a shallow breath before speaking. “Good. I have a couple of things I want to give you and we need to talk tomorrow, its important.” My heart dropped to the floor as his eyes opened to look at me. I knew it was time…..
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Christmas morning came too quickly, and the night shift nurse told me John had gotten up early asking whether I had come to work yet, he wanted me to come to his room as soon as I could. His fiancé had arrived last night to spend the night at his bedside and I was assuming John wanted her there for whatever “talk” he wanted to have with me. I can’t explain how I felt, other than to say I dreaded going into that room– yet at the same time, I was ready—long past ready for this conversation. (If that makes sense) When I finished receiving report I checked in on my other patients before stopping short of John’s doorway. Leaning my back against the wall I closed my eyes, took a deep breath and said a short prayer for strength. A call light sounded and I looked above me—it was John’s. “Stop being a coward and get in there!” I thought to myself.
With a smile on my face I walked into John’s room to greet and wish him Merry Christmas. His fiancé appeared tired and relayed to me that John hadn’t slept well, he had been restless. “Well how would you feel hooked up to all this shi—!” He growled. John raised both arms to display the IV tubing that connected him to numerous IV pumps and the TPN tubing that connected him to the feeding pump. “I can’t even go to the bathroom by myself because of all this!” The little outburst stole the breath from him and raised his heart rate by 20 on the monitor. He closed his eyes and rested his head back on the pillow for a moment. John’s fiancé took that few seconds to grab my other hand and I saw tears well up in her eyes as she mouthed the words “It’s time to take him home.” I nodded and squeezed her hand.
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When John opened his eyes– his mischievous, sparkly, grey blue eyes gave way to his playful grin. “I got you presents” he said slowly. He nodded toward his fiancé who stood up to retrieve something from the closet. She returned to the bedside with a perfect, turquoise Tiffany bag. Inside were two small, equally perfect boxes…tied neatly with white satin ribbon. Shocked, I sat there with my mouth dropped open staring at the bag. I’d never owned anything Tiffany. “Well go on! You don’t got all day!” He pushed the bag over to me and I carefully took out the two little boxes, afraid to take away any perfection from them. Setting each box down next to John I undid the ribbon and opened the boxes. Inside them were silver butterfly pendants—one attached to a silver chain, the other a matching bracelet. “I don’t think Im allowed to accept this” I told him. John immediately put one hand up as if to tell me to stop talking. “You can. (breath) I already checked and I told the manager (breath) that you would accept it (breath) or else I’d be insulted and angry (breath) and we both know what happens(breath) when I get insulted (breath) and angry.” I fought back tears as he wished me a Merry Christmas and reached out both arms for a hug. “Thank you so much John, no one has ever done something like this for me” I told him. When I sat back down on the edge of the bed next to him I took great care in returning the boxes back to the same sweet state I had found them in…ribbons and all…back in the turquoise bag. I didn’t think I’d ever have an occasion to handle one of these little bags due to my limited budget as a single mom. This was truly a special gift because it came from someone I shared a great deal with over a year’s time. John was the first to break the silence. “It’s time to talk…”
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“I’m done Amanda. I want to go home (breath) and be in my chair. (breath) I want to sit outside and watch (breath) the sunset with a glass (breath) of wine. I don’t want (breath) this anymore. I don’t want (breath) a big surgery. I’m ready(breath) to tell my family (breath) but I need you to call (breath) the doctor right now (breath) and tell him I want (breath) all this stuff off of (breath) me for good.” John reached for my hand again, and for the first time I felt his energy shift to a more peaceful state, the sadness and angst seemed to lift from him—the burden was gone from his body and he felt lighter. Everything around him felt lighter. I smiled at him, tears spilling down my cheeks. “I would be glad to do that for you John, I’ll give him a call right now and see what we can do to get things going for you.” “Will he be mad at me?” His face took on that familiar fearful expression. “Does it matter?” I asked. John looked over at his fiancé, squeezed her hand, and grinned. “Naw, bout time I take my girl home for good.” “What about the family John? They will be here later.” I reminded him. “Well, it’s time for me (breath) to do what I need to do.” He said, winking one eye. “Now go call the doc.”
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That was the last day I would share with John. I paged the heart failure doctor on call and had one of the most difficult conversations I’ve ever had with a doc. Calling a doctor on Christmas day to tell him that his patient is “done” and “wants everything off” and no longer wants surgery but wants to go home is not high on my top ten list of things to do on a major holiday but he took it well and requested the drips and TPN remain on until the next morning when he could have one more conversation with John before arranging for the discharge home with Hospice. Thankfully, John agreed to the plan. Before leaving that night I went in to his room to say goodbye. As soon as I opened my mouth to speak he put his hand up to stop me “I don’t like goodbye so were not saying it” he warned. I took a seat in the chair next to John’s bed to share my thoughts on the past year. I thanked him for teaching me, for trusting me, for allowing me to walk this part of his life next to him, and for giving me the opportunity to support him. John motioned for me to sit on the edge of the bed closer to him. He looked away for a second and I saw his lips begin to quiver and his jawline tense up. I went to pick up his hand, but he reached out to hug me instead. I heard him whisper “Thank you.” The tears came back again, racing down my face as I hugged John back for what I knew was the last time. When I stood up to leave he gave me one more smile and one more wink of the eye “be good now, I’ll be watching you.”
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John went home with his fiancé the next morning, but the discharge required the full support of nursing staff, charge nurse, doctors, and the case manager to help the family understand it was John’s choice to say “no more,” and it wasn’t their decision to make to force him into more treatments. I never found out whether John and his family managed to “meet in the middle,” what I do know is that John died two days later, in his favorite chair, watching the sunset with his fiancé at his side.
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Each one of the *MANY* end of life experiences I have been a part of can never be erased, taken away, or diminished. They become part of who you are as a nurse and as a person.(I emphasize *many* because there seems to be a nasty rumor out there that I have no nursing experience with end of life care or counseling) Each patient and family show you something different about nursing, living, the dying process, death, and the unique ability nurses have to make the difference between a troubling end of life experience and a peaceful, loving one. They each teach you something new about yourself. Knowing I had a part to play in a peaceful, therapeutic end of life process for John and his fiancé would become one of the best memories and one of the biggest accomplishments of my career.
Okay—so the next post will be about Advance Care Planning! There is this misconception out there that nurses aren’t supposed to discuss this with patients–I’ll prove otherwise. There’s plenty of evidence based research that supports the nurse role and the nurse’s duty in helping to facilitate this important conversation or teach this concept to your patients and families. I’ll also provide links to online education and certification opportunities.
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