Disease of Loneliness by an Anonymous Physician
I had a patient experience that was profound for me. I was asked by the ICU to meet the parents of a 39 year old man who dying of liver and kidney failure from alcoholism. The ICU doctors were asking me to talk to his 70 year old parents about taking him off life support to die, because he was not going to improve.
I looked in the room, and saw him in the ICU bed, intubated, and his parents sitting against the wall, about 6 feet from the bed. It struck me that they were not holding his hand. I told my social worker I would be back. I had to take a walk because I was thinking to myself, “coulda been me.”
This is one of the youngest patients I have seen in the hospital dying from organ failure from drinking, as opposed to trauma. I met his parents and talked to them about what their son was like as a person. Dad spoke more than mom. They both seemed broken. Dad just couldn’t understand why he couldn’t stop drinking, and just wanted to help. He recalled when his son worked as a chef ... [he] eventually lost his job from too many screw ups. He drove him to AA meetings and his son told him they didn’t work. He drove him to his next job when he lost his license until they fired him for smelling like alcohol.
His mother wore a necklace with his baby picture. When I asked her what he likes to do, she said with tears in her eyes, “he likes to sleep, drink, and stay in his room.”
We talked about how he was dying and we could not fix his organs. His dad said, “even if you could fix him, it wouldn’t matter.” I could feel the helplessness in the room. They had tried for so long, and they truly understood we couldn’t help him. They have been trying for years. We talked about who needed to come to say goodbye to him. They could think of no one. He and his sister no longer spoke and they said she wouldn’t want to come. He did not have any friends.
Despite all the conversations I have had with patients and families about dying, I was surprised at how ready they were for it to be over (which is different from letting him go). I wanted to let them go home for the night and come back the next morning to spend the day with him after taking him off of life support. They looked at each other, and his dad said, “go ahead and take him off now. We are going home. The son we know died a long time ago.” He also said “we will carry this for the rest of our lives.”
When they left, I felt saddened by how little they understood about their son’s addiction, at least from my own perspective of recovery. I thought about how...[the PHP] program does work, and that they are a couple who could use Al-Anon (which I mentioned to them), but they have the perception that this program doesn’t work, and therefore they won’t seek out the help they can receive from Al-Anon. I also thought about the leaps and bounds I have made with my family. The changes that have happened with the relationships with my family are huge and cannot be measured.
The next day, when we extubated him, I saw a good looking young man with a lot of potential. He died alone in the ICU 12 hours later.
This disease is truly a disease of loneliness. If I go back out, it will only be a matter of time until I am alone again. I don’t want to die that way.
Written by a PHP alum from another state.