One Last Wish
"You want to be connected to this machine though you may never come off it or be able to talk or eat anything?" My patient connected to a ventilator and with multitudes of wires and connections all over her body, looked me in the eye and nodded her head. I looked at her in frustration and bafflement.
This was a patient of mine who was in the Intensive Care Unit (ICU). She had extensive lung cancer which had spread to other areas of her body. Her best survival at this point was 6 months, only if she remained free of infections. Yet, she wanted to remain attached to the ventilator, and did not want comfort care or end of life discussions. I was unable to understand her need to being awake with an uncomfortable machine connected to her, not being able to eat, not being able to talk, and living in a nursing home. 'Such people are a complete waste of resources', I fumed inwardly.
As we frantically searched for a ventilator facility to transfer her to, she developed more complications - an infection of her bowel, potentially needing surgical evacuation. The surgeons we consulted balked at the thought of operating on this patient with such a poor prognosis. They recommended medical therapy and we prayed that the infection would wall off with the antibiotics we were giving. Through all this my patient had to bear multiple abdominal exams on an exquisitely tender abdomen, multiple CT Scans, nutrition through deep IV lines and their changes. Once again, end of life care was approached as we were skeptical she would pull through. The family of my patient, comprising of 5 sisters and a brother staunchly supported her decisions. And my patient, through all this, while mournfully staring into my eyes each day as I examined her, remained strong in her wishes to remain on the ventilator machine.
One day, I noticed a man sitting at her bedside and a wan smile on her face. I had stayed late that day and asked the nurse next to me who the man was. The nurse told me that it was my patient’s boyfriend who visited her everyday at this time. After he left I walked in and asked my patient somewhat brusquely: "What does he think seeing you in this condition everyday?"
She signaled to me to get a sheet of paper and in rambling handwriting wrote: "That is my boyfriend of 18 years, whom I can’t imagine a life without. I have had this cancer for 5 years but I came here because I could not breathe anymore on my own. I would have died if you had not placed me on this machine. I know I can’t make it on my own. By staying on this machine if I can get to see my love even one more day, then it’s worth it. I am not ready to leave him just yet."
I was sobered. I felt apologetic about my attitude. Even as I tried my best to get her to a ventilator facility, my thoughts were more mature. Young physicians like us sometimes forget that people are complex individuals and they have a personality beyond their disease. The reasons behind human decisions are manifold, some of which we don’t necessarily understand. Our job is not to coerce patients into our way of thinking or disagree with their decisions, but to continue to make our patients as comfortable as they can be. Just as we respect the wish to die and provide comfort care for people with a terminal diagnosis, we need to respect those who want to fight death and live beyond all reason.
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