I was working at a local Hospice In Patient Unit when word arrived that a patient would soon arrive who had made the decision to be removed from life support.

Robert had been in a motorcycle accident and was being transferred from prominent spinal care facility. His injuries left him paralyzed from the neck down, but left his mental faculties 100% intact.

Doctors had told Robert that there was no technology that could repair his body. He would spend the rest of his life connected to life support. Before the accident, Robert was strong and vibrant. Now, he faced the certainty that his body would never heal. So after days of heart wrenching conversations with his family, Robert decided to discontinue all means of life support. Everyone knew what this meant. Robert was asking his family to let him die.

After the call, the Hospice Unit Manager asked me to be part of Robert’s Care Team. I would initially play music for the family as they gathered outside Robert’s room. As the day unfolded, the respiratory tech would gradually reduce the volume of oxygen filling Robert’s lungs. As Robert declined, I might be asked to play at the bedside to comfort Robert with therapeutic music. Because of his relatively young age, no one knew how long his transition might take. The Care Team was prepared for a very long day.

On arrival, Robert’s Oxygen volume was 16 liters per minute. His O2 levels would be gradually reduced to 2 liters per minute before being disconnected from his ventilator. No one knew how long he could breathe without assistance, but Robert requested that he be sedated before his ventilator was disconnected.

Over the next few hours, Robert received family members and close friends at his bedside; sharing a final story or request with those he loved. Once everyone had said “Goodbye”, sedation medications were given. Everyone knew that he would not wake up again. So the family sat by his side, waited and shared stories and tears until Robert was disconnected from his ventilator. The stillness was overwhelming as the ventilator stopped. Robert’s diaphragm barely rose and fell beneath his gown. His atrophying body still had stamina, so no one was surprised to see Robert continue to breathe unassisted. Robert’s body was struggling live while his family was struggling to let him go.

Having been in the unit since 10:00 AM, I took a 90-minute mid-afternoon break. At 5:00 PM, the Hospice Chaplain requesting that I return to the Unit immediately. The Hospice Social Worker had met with the family and told them Robert could continue to struggle well into the evening. The family was asked that I be allowed to shift the focus of my music to comforting Robert at the bedside; that my music would help support the process already occurring and help him peacefully pass. The family consented.

As I entered Robert’s room, the family asked if I could start with ‘Amazing Grace’. Typically, I avoid familiar music for patients in this condition, but I told them I could begin with a brief, modified arrangement that would be suitable for Robert’s condition.

Playing slow arpeggios with chords that faded to silence. I carefully looked for any evidence of life. His respirations were steady at every 6 seconds. Robert soon began guiding me how to play for him. In the lower register, the chords from my guitar were audible for 10 – 12 seconds. After ten minutes, Robert’s breathing had slowed significantly. He was beginning to let go.

Over the next five minutes, I played more slowly and used longer periods of silence. The pace of Robert’s respirations followed. Soon, he was only breathing every 20 – 25 seconds. Then he paused for 35 seconds. Another breath was followed by 40 seconds of more silence. I played slow arpeggios as he exhaled while the chords faded into silence. I waited and watched for 45 seconds. At 60 seconds, I softly played again. The chord floated away after 15 seconds while everyone waited and watched. After another 30 seconds, I realized that Robert no longer needed to breathe. He was free.

I slowly strummed the same chord two more times. Each time, I let the sound dissolve into the now familiar silence. I nodded to Robert’s nurse as I stepped away from the bedside and played one final offering. All eyes were fixed on the nurse as she placed her stethoscope on Robert’s chest. We all waited in silence as she carefully listened for signs of life.

Robert’s sister asked, “Is he still breathing?” As the nurse removed the stethoscope, she shook her head and whispered, “I’m so sorry.” The room quickly filled with soft sobs and weeping as the family adjusted to the new reality that their brother, son, father and Uncle was gone. They knew that Robert was no longer suffering, but their tears also revealed a pain that each would carry for the rest of their lives. No matter how many tears they would shed, their tears could never fill the void that Robert’s untimely death left within them.

I offered my condolences and left the room to privately reflect on my day. Later, Robert’s family invited me back to his room to say, ‘Goodbye.’ I was immediately impressed by how peaceful he looked, as if he were merely sleeping. And I felt a strange sense of peace and thanksgiving for being able to help Robert take his final steps along the pathway to eternity.

2018-07-26T19:27:57+00:00 October 13th, 2015|Patient Experiences|0 Comments

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