We had a very messy family situation on Friday. A 40 something man with HIV, Hep C causing liver failure and lymphoma in his brain had come into the hospital very sick. For years he’s told his family that he wouldn’t want to be kept alive on machines. He was so sick when he arrived that the ICU team needed to decide quickly whether to intubate him or let him die comfortably. The patient was too confused to give and answer, and the plan was to honor his previous wishes and not put him on machines. However, his youngest son, 17 was panicking and demanded his dad be intubated. It’s hard in those situations to know what to do. Usually it’s better to intubate and then withdraw care later, as you can’t really change once he dies.
We got involved the next day to help the family sort out what to do, now that their dad was where he never wanted to be- living on machines. I went to the ICU to see the patient first. He was the color of a sunflower, his skin full of fluid making him puffy. His feet and hands were already turning blue, like they do when someone’s dying. It was clear to me after seeing him, that he was going to die despite all the medical intervention.
We sat down with the family- an ex wife, 3 kids with from different moms, and family friends. We talked about him and his wishes and how sick he was. The family finally grasped the situation and one daughter said, “I guess the only question then is when do we stop the machines, because we also don’t know what to do about his other son…” AT this moment she chokes up and everyone in the circle starts crying more. We ask if the other son is out of town? “No, he’s here at the hospital” We learn that this 23 year old son was in a car accident the night before, and broke his neck, and looks like he might be paralyzed. He was in the neuro ICU and didn’t know his dad was even at our hospital. His mom, different from the ex we were talking to, had told everyone to keep the news from him, as he would be too stressed. Although he’d been asking about his dad since the accident, everyone was lying to him.
We were of course aghast at this. The immediate question was should they tell him about his dad? And the answer was an emphatic YES. The long term ramifications of being lied to about someone dying can be devastating. While done out of protection, the family wasn’t thinking about days from now when they’d have to tell the truth. The second question was equally important, could we arrange a way for the son to say goodbye to his dad if possible? I went to work calling the neurosurgeons and trauma surgeons for their input. They all cleared him to go by hospital bed. The hospital is pretty big, so he’d actually be wheeled from one building to another. The ICU room where his father was dying was big enough to accommodate another bed, however because of the son’s neck injury he wouldn’t be able to turn his head to see his dad. We’d need to lift the head of the bed to almost sitting for him to say goodbye.
All the planning looks to be in vain. We talked with the son’s mom, frazzled by having a son who is likely a paraplegic and an ex husband dying on a ventilator, all at the same time. She is angry at the world right now and has decided she won’t tell her son about his father. She’s in protection mode, and to her, having him even just be told that his father was dying could make him give up on his own recovery. She says she’ll think about it, but I believe that while “thinking” the dad will probably die.
This is the hard part about all of medicine. We can give information and have opinions, but ultimately people make their own choices. In this case, I’m glad I won’t be around to be a part of the the truth telling later. I can only guess at the son’s sense of betrayal and regret for a moment that was possible, but gone forever.