A Hospice Nurses Journal : November 27th, 2017

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Tonight I was called upon to do a “tuck in” visit for a new patient. An admission had been scheduled to take place in the early afternoon, but our patient had been at the hospital waiting on a late discharge, and as the hours crept by, and 5:00 came and went, the admission was put off until the next morning.

The call came through just before 5pm. Would I be willing to meet the patient at home once he finally got there, and make sure he was settled in for the night and comfortable? Of course I would. The doctor’s H&P and the notes from the latest hospital visit were faxed to me right before the office closed for the night.

The patient is 46 years old. He has cancer that has metastasized to his liver, his pancreas, and his lungs. Not that any cancer is ever good, but those are all particularly painful places for tumors to grow. The man has two youngish children. The change in condition that prompted hospice was sudden. Unexpected. Six weeks ago, he was in Disneyworld with his kids. Now he’s dying, and the doctors have told him there’s nothing else they can do. They told him to prepare his kids, because he will not survive to see Christmas.

The more I read, the sadder I became. Because yes, I do have a problem playing the part of impassive hospice nurse. Boundaries are easier in the hospital. People come in, stay for a few days, and go home. You might meet a spouse or a child, might even get to know a little bit about your patient, but you don’t become a part of their lives.

Trish

Hospice nursing is different. You enter your patients’ homes. You are surrounded by their families. They are sometimes with you only for a day or two, but often for many months. Long enough that you get to know them. Who they are. Who they WERE. What they long for. What they dream of. Enough time for them to seep into your heart and become “yours.” Every death is like losing a friend. Some are felt as keenly as the loss of one of your own family members.

The family called at 9:00. They were finally home. They knew it was late. Was I still willing to come? Of course I was. Though I’d be lying if I said I bounded out the door. I drove every one of the 14 miles across town with dread in my heart. 46 is too young. Not that any of our older patients are any less precious to us. But 46 is just. too. damn. young.

I pulled up in front of a beautiful house in a quiet subdivision. Every light was on inside. The driveway and street were overflowing with cars. A perfect Christmas tree shone in the front window. I sat in my car and looked at that tree…and wondered how I was ever going to walk up to that front door and ring the bell. Okay. Maybe I wasn’t cut out to do this job after all. Five years of it, and still, there’s always that doubt. Is it the best job in the world? Or the worst? Just how many patients can I bear to lose? How many deaths can I grieve without being forever changed?

But inside that house, a family was waiting. Lost. Alone. Afraid. Anything I might be feeling paled in comparison to what i knew they had to be feeling. So I pulled up my big-girl-pants and walked up to the door.

Inside, it was not what I had been fearing at all. There was JOY in that house. It was unbelievable. So many friends and family members had gathered. The patient lay in a hospital bed in the very middle of the living room, right in the thick of things, laughing and joking with everyone. Sure. He winced in pain sometimes. But mostly he was upbeat and cheerful. He told me that it felt wonderful just to be home. In his house. Surrounded by the people he loved. He told me that as far as he was concerned, life was “about as perfect as it could get.”

All around him, people smiled. Told stories. Reminisced. Took turns massaging his feet. Holding his hands. Rubbing his back when he had a coughing fit. They were touching him. The love was palpable in that room. It was a beautiful thing.

Don’t get me wrong. It was still tough. My patient’s mother was crying softly in the corner. I’m thinking she gets a pass for that. No one ever expects to watch their child die. We talked for a little bit and then she just leaned into me and sobbed. I held her while she cried. Rubbed her back. Didn’t say a word because really…what was there to say? But when she was done, she smiled. Squeezed my hand. Thanked me and told me how grateful she was that I’d come.

Once everything had been gone over with the family, once all their questions had been asked and answered, once the missing oxygen delivery had been tracked down and medications for the night had arrived, I said my goodbyes and headed for the door. The patient’s wife walked with me. With tears glistening in her eyes she said, “The doctors told us he only has a couple of weeks. But they don’t know him. He’s going to live until Christmas. He loves Christmas. And the kids. He’d do anything for the kids.” And then she asked the question every hospice nurse in the world dreads more than anything else. “Now that you’ve seen him, what do you think? How long has he got?”

I told her that if I were her, I’d celebrate Christmas a little bit early this year. I watched her face fall. Saw her shoulders droop. But I also assured her that the only guarantee in my profession is that there are no guarantees. That life–and death–are filled with variables. That there is nothing in the world as powerful as the human spirit, and that I have seen it a hundred times…dying patients who hold on until a loved one to arrives from another state, or hang on until a spouse’s birthday or an important anniversary. I told her the story of the man who lived six months beyond his doctor’s prognosis in order to see his daughter get married. I told her that I wished I could answer her question for her, but that there was just no way to tell.

She threw herself into my arms, and enveloped me in a huge hug. She didn’t cry. When she pulled away, she was smiling. She thanked me over and over again, just for giving her hope. I cautioned her that it could just as easily be false hope, but she told me that she didn’t care. For her, it was enough.

As I headed home, the radio was playing Christmas music. Songs about lights in the darkness and home and family and faith. I began to sob. I cried the whole way home. Wishing with all my heart that when the admission is assigned tomorrow that he will come to me. That this will be my patient. Hoping against hope that he won’t be. Torn between wanting to be there for this lovely family, and yet wanting to distance myself from the pain of what is sure to be a difficult death.

Is it the best job in the world, or the worst? The question remains. But tonight? Tonight, as painful as it was, I gave a family information they desperately needed. And comfort they desperately longed for. And most important of all, I gave them hope. For me, that is enough.

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