What I learned from death
I am an ICU nurse. I work with a team of professionals who are fantastic life savers. But our medical system can incredibly dysfunctional when it comes to death. Like most people, some health care professionals don’t like to discuss death and may view it as a failure. Or perhaps their patients view it as a failure and not an inevitability. It’s a part of life that most people don’t encounter on a weekly basis, a thing from which we distance ourselves and it’s something everyone needs to know more about. After all, everyone will die someday. There is no formula or remedy for death, and there is no preparation on earth that could have prepared me for taking care of someone who was actively dying. Death changed my view on life.
I’m going to call him Mr. Wolf. He taught me what nursing school never could.
He was my patient when I was new to the world of medicine, still trying to put it all together and figure out what it was that I was supposed to be doing. Nursing school does not and cannot prepare new nurses for the reality they face upon graduation; the call lights they don’t have time to answer, the medications they give without having time to look up, dealing with a schizophrenic off of her meds, caring for a prisoner who’s chained to the bed. The floor where I started was busy to a point where nurses ran from it; a typical nurse lasted a year there. As a consequence, my co-workers and I were all new to the world of illness and surgery, life and death. Taking the time to speak to a patient about end of life issues was a luxury I never had.
Mr. Wolf had a cancer in his abdomen for which he’d just undergone a surgery. From what I understood, it was not a curable cancer. I took care of him for two or three days and spared some time to talk to him. I learned he was illiterate, and I got the feeling that he would pretend to understand what doctors told him, nod and scribble on the dotted line.
He lay in his bed, doped up on oxycodone. He had a tube running from his nose emptying his belly contents into a container on the wall. His incision was still fresh. He would not be able to drink even clear liquids for another few days and eating was far away. He needed help to even sit on the side of the bed. In the course of my caring for him, he told me something I don’t think he told anyone else. “I know I’m going to die,” he said, “I just don’t want it to hurt.”
Why did he tell me this? Why not his daughters who were talking (outside of his hearing and in the conference room) about his poor prognosis, about palliative care at home? He probably thought, and he was right, that they believed they were running the whole show, that what he knew and wanted wasn’t quite as important to them as getting things done. He probably thought I could do something to help him with his wishes.
I flipped through his chart. There was no paperwork about an advance directive or code status, which meant by default, that if he were to arrest, we would have to do everything in our power to save him, going against his wishes. I told the doctor, a first year surgical intern, and she said she’d speak to her chief about filling out DNR paperwork. Nothing was done.
The next day, I saw the team caring for Mr. Wolf leaving the floor. His surgery had been done by the chief of trauma, and I was more than a little intimidated by him. I should have ran down the hall after him. I was 22 and six months a nurse. Surely a trauma surgeon wouldn’t care for my opinion (Years later, said trauma surgeon still knows my name and says hi to me on occasion. He would have listened to me). And Mr. Wolf wasn’t that sick. He was just three days post-operative. It could wait. So I didn’t pursue the matter, at least not hard enough.
Later that evening, I went into my patent’s room and woke him up to get his vitals. He looked at me. Something was different; he was paler, quieter. “Don’t I know you?” he asked. I’d only been taking care of him for three consecutive 12 hour shifts. I wanted to cry. He was acutely confused and I knew something was wrong. He was going to go bad and now he wouldn’t be able to make his own decisions. He’d lost his say in his care. I bit my lip and paged the resident.
I don’t know what killed him in the end; if he was bleeding out or septic or if he stroked. What I do know is that the resident came out of the room shaking his head. Something wasn’t right. Mr. Wolf went from OK to bad to worse and in the night was taken up to the ICU and placed on a ventilator, which was exactly what he did not want to happen. What I do know is that I could have prevented this.
His daughters chose to withdraw care a few days later. If anyone had listened to him or if I’d made anyone listen to me, he could have had a good death. He could have gone home and been in his own bed, said good bye to his daughters and had enough morphine to make him comfortable.
I betrayed my patient. A person only gets one death and not many people get a say in their death. Mr. Wolf told me what he wanted and I failed to help him. It profoundly affected me, that all of those unnecessary interventions were performed on a man who did not want them because I was too shy to advocate for my patient. But I learned. I learned that I care about providing a good death. I learned to be the squeaky wheel. I learned to go against the grain. Because taking care of patients isn’t about following a formula and adhering to a medication regimen and staying on the pathway. It is about doing what is important for a person. Sometimes it’s teaching, or getting them home or setting limits or giving them chemo or pain meds or washing their face. Sometimes it’s being their voice when they can’t or won’t say what they want.