As a hospice provider, we are faced with unique situations daily. We all agree that the patients touch our lives in so many ways. Often when visiting a patient, I may not know very much about the patient except for name, age, diagnosis, and how they came to the decision to choose hospice services. That is all I knew as I approached the home of Mr. J.
Mr. J. was an elderly male, connected to a ventilator, lying in a hospital bed with his eyes closed. His elderly wife was at his bedside along with a nurse who was there 24 hours every day to provide the delicate nursing skills required for a patient on a ventilator at home. I walked into the patient’s bedroom and I immediately said to myself, “Oh my God, he looks just like Daddy.” Just a few weeks prior to visiting Mr. J., my father had been connected to a ventilator for six days in a hospital setting without the ability to wean from the ventilator because of end-stage COPD. Unfortunately, for about four days I had to decide when to remove my father from the ventilator. I asked myself daily, “Am I the one who is supposed to choose which day?”
During that week, my thoughts were like a roller coaster and I wondered how my father’s life would be if I kept him on a ventilator. I knew he would have to go to a nursing facility, require 24-hour care, his health would be at risk for infections, and we as a family would have to watch and endure until his journey ended, not really knowing when that would be. You always hear about people surviving on a ventilator for years. I frequently questioned what will this look like, “the picture.” After making the decision to remove the ventilator from my father and after he passed away only 17 minutes after being disconnected, I continued to have questions about “the picture.”
Mr. J., in his calm manner, with slightly labored breathing and noticeably frail, had been hospitalized for several weeks for COPD and was sent home because the family opted to take care of him during his final time in his own home. With his ventilator humming in the background, a nurse sitting at his bedside and he being unable to communicate, a soft voice spoke to me and said, “This is the picture you’ve being asking for.” As tears formed in my eyes, I quietly responded, “Thank you.”
As we serve our patients with routine visits, symptom management, and family discussions, I reflect on how much the patients, their families and their journeys teach, motivate, and empower. I only met Mr. J. once as his journey ended only days later after being removed from the ventilator, but I am thankful that he was able to share of himself briefly to answer my own personal question of “the picture” and for confirming my decision for my father, my family, and myself – an answer in my own life’s journey coming from the most unusual place.
Dwan Kelsey, RN, ANP-C, Hospice and Palliative Care Nurse Practitioner