Many hospice employees are called to do this work, usually by an experience with hospice. Sometimes the experience is amazing and they want to give back. Other times the experience is not what they expected and the join hospice to ensure others receive the best end-of-life care possible.
Sarah Paradise, Clinical Manager with Namaste Hospice shares her Hospice story with us. She shares a beautiful and heartbreaking time in her life that has allowed her to be an excellent Hospice Nurse.
My nursing career started in the ICU (intensive care unit). I never imagined I would do anything else. But eventually, I found the losses in the ICU, (where we removed life support after many discussions with the family) pulling at my heartstrings. Those patients/families deserved just as much attention as those we were fighting to save, but in the ICU setting that wasn’t how it usually went. So, I decided to take the plunge and try out hospice nursing. I started with Namaste on October 8th, 2018. I was still in orientation when I got a call on October 17th that my dad was in the ER. He thought he was having a heart attack. It turned out he had a collapsed lung and they subsequently found a mass on his lung, highly suspicious for malignancy. The C-word, cancer. They couldn’t biopsy the mass right away because of the risk of re-collapsing his lung. I flew home for a weekend to be with him. My dad was my best friend. He remained his happy go-lucky self and pushed all of the limits during his time at the hospital; ensuring he was walking enough each day as well as ordering extra milkshakes at every meal (he always shared them with the fam). He spent most of his days from that point on, in and out of the hospital for recurring pleural effusions (fluid around his lungs) and need for a chest tube to drain the fluid. I fought for him to get a pleurX drain (more permanent chest tube) to continue to drain the fluid so it could heal and he could get the mass biopsied ASAP, so we could explore treatment options. I had to fly back to Denver but I started a journal for my family to write down everything and they FaceTimed me when the doctors rounded. I call multiple times a day and my dad always told me not to worry. They finally scheduled surgical placement of the PleurX and the thoracic surgeon and pulmonologist called me after placement to let me know that during placement they discovered suspicious nodules covering his entire chest wall. Even without a biopsy, as a nurse, I knew what this meant. Stage 4 cancer. Terminal.
I was out in front of a hospice patient’s home and broke into hysterical tears. I called my work and told them I would be on the next plane out of town and didn’t know when I would return. Do you know what they said?– “We understand, please let us know if we can do anything” No questions, because they get it.
I got to Ohio and spent a night with my dad in the hospital. They were to discharge him the next day so he could see the oncologist he wanted (because insurance wouldn’t cover it otherwise during the hospital stay). My dad was adamant he wanted to know treatment options, so I did my due diligence and found him the best in the area. The night before the oncologist visit was the worst. My dad was anxious and struggling to breathe all night and he begged me not to call 911. We made it through the night with no sleep at all. We sat up and watched our favorite movie, The Holiday on repeat. My aunt and uncle came the next morning when I called them worried I couldn’t get him to the car myself down the apartment steps. With 5 of us, we supported him down the steps, carried his oxygen tanks, and stopped to use his inhalers at every landing. We made it to the oncologist visit, barely. He was coughing up blood in large amounts. The oncologist took one look at him and sent him to the ER and he was admitted to the ICU for increased oxygen needs. As a nurse, I knew this was not going to get better, but I couldn’t think that way. It was my daddy. As a daughter, I wanted to do anything to make him better. We spent nearly a week in the ICU as they tried non-invasive ventilation. They woke me up at midnight one night asking if I would sign for them to intubate him to which I replied “Absolutely not! He will never be able to get off the ventilator”. So they asked me to sign a DNR. I called Jeremy (my now husband) balling my eyes out and not sure what to do. I woke my dad and asked him what his wishes were, we had never talked about it and at the moment it was not an easy discussion. He wanted to be a full code. I knew in my nurse heart this was wrong. I arranged for one of my favorite physicians on the ICU team to sit down with him the next morning for a goals of care discussion. My dad signed a DNR. Then he titrated his oxygen enough to get out of the ICU. We returned to his favorite floor of the hospital where it was a rollercoaster of good days and bad. He started palliative radiation daily to try to stop the bleeding of his tumors. He received 1-2 bags of blood transfusions daily which my nurse heart knew would be too much fluid for his body to handle, but my daughter heart wanted to try anything and wasn’t allowing the nurse brain to be on.
Eventually, his appetite started to dwindle. We had been having cream of wheat and coffee together every morning. He ordered large trays of food at every meal — but then it changed and he would barely drink a cup of water a day. He slept most of the day and his breathing was labored. Despite palliative care consult his pain was still requiring frequent breakthrough dosing. I remember telling him I loved him… more times than I can count. Most times he said it back until finally he looked at me and said “don’t worry, I know you do”. I guess I didn’t know what else to say. My brother and I slept at the hospital every night on a cot and the couch. Thanksgiving came and went. My dad ate a couple of bites of food that day to appease the family. I can’t remember what happened exactly that triggered me to ask for hospice to come in so we could go home…
The hospice admission coordinator came and sat down with us and I signed the consents as his MDPOA. She said she would arrange transport for the next day to go home to which I replied “No, it has to be tonight”. She looked at me puzzled and my dad said the only words he had said the whole day “yes, tonight”. The ambulance transport was delayed that night and my dad asked why. I let him know I was sure they had a good reason and we would get him home soon. My family had a room cleared out and set up just for him with the hospital bed, over bed table, and medications from hospice.
He arrived home in the ambulance in pain and I was able to medicate him with the morphine that the hospice had sent prior to his arrival home. When the hospice nurse arrived that night, she didn’t leave. She looked at me and said, “It’s time to just be his daughter, I will handle the meds and keep him comfortable. I don’t think he has much longer”. I sat at the side of his bed and played music and held his hand and put a cool cloth on his forehead. My brother helped to move the couches from other areas of the house and our big Italian family and his best friends surrounded his bed. Some slept, but no one left the room. I never stopped watching his breathing. As soon as I noticed long periods of apnea, I woke the rest of the family and we all loved on him as he took his last breath ..just 8hrs after arriving home from the hospital.
That night I knew hospice was the right field for me. The hospice nurse made all of the difference in my loss of my dad that night. No one and nothing could make the pain from that night go away, but they made it the best that it could be. After all, we all die sometime, so let’s make the best of it that we can.