A week ago Saturday I was woken up during the night for the first time while on call at the hospital; there was a Code Blue at 2 a.m. These can take up to two hours to be resolved, but this one took only about 30 minutes, so that was lucky for me and presumably for the patient. That was maybe my eighth or ninth on-call shift. I remember telling a fellow student after my second on-call shift that I hadn’t been woken up during either night. “Get out!”, he shrieked, reflecting that this was unheard of. I apparently am the luckiest person in the entire universe to go so long without being paged in the wee hours. On call a couple of days ago, I received a Code Blue page at about 3:30 a.m., but when I arrived at the ICU, it had been canceled. I was back in the sleeping room 14 minutes after the pager had first gone off.
One of my peers has a patient who has a horrible wound that has refused to heal. He has explained her situation as one of being held together with Saran Wrap. There are instructions in her room saying not to try to turn her on her side, for fear the wound will rip open even farther. He also warned us lately that she is starting to decompose and that the smell is not good. This made me a little reluctant to visit, but I found that the smell was not at all overpowering; plus, the nurses continually have peppermint oil on a piece of gauze in the room, which makes a big difference, though now the smell of peppermint anywhere can bring to mind a rotting human being. In general, I’m noticing other wisps of scent here and there outside the hospital that strongly recall unpleasant scents inside the hospital.
This patient has been in the hospital for months and in the ICU for weeks, and apparently her family has refused to let her be transitioned to comfort care. My peer said it’s one of the worst situations of human suffering he’s ever seen. When I first began visiting her, letting her go seemed like the only decent thing to do, but then she began to communicate by writing on a piece of paper, making steady eye contact and smiling, and then I felt the opposite way, that it should be out of the question to stop curative treatment. How can you do that to someone who is obviously fully alive? Not to mention that the patient had not expressed the wish to die.
I have been somewhat dismayed to learn that, ultimately, this is at the care team’s discretion. You can fill out an advance directive saying you want every last thing done forever, but if your doctors determine that you are never ever going to recover, they can decide not to make further interventions and transition you to comfort care. However, I think that many doctors want to follow the wishes of patients and their families, and also don’t want to fail, which is how they may see death, and we all know that they do very often provide treatment they know will be futile.
I have visited this patient several times. A week or so ago, smiling, she wrote to me, “Glad you came.” She wanted to hear “Jesus story.” What I’m able to share about that is pretty limited, but she was able to communicate what reading from the Bible she would like to hear, so I read that aloud. Later in the visit, she wrote, “I dying never never go home again.” I asked, “Is that what you believe is happening?” She nodded. As gently as I could, I said something like, “I believe you are right about that.” Then I asked, “Are you at peace with that?” She moved her hands as if to say, “Sort of.” “Is your husband at peace with that?” She shook her head no. I asked if she felt worried, and she again shook her head no.
Somewhere along in here, I learned that her family did not want her to know of her poor prognosis! That seems like a pretty big decision to make for another human being, especially one who still has some means of communicating with others.
The day she wrote that note about never going home again, I carefully charted everything she had expressed, along with the particular Bible passage she had wanted to hear; I wrote the latter on a piece of paper that I left in her room, for good measure. In the few days after that, her family finally agreed to a do-not-resuscitate order. She has been declining very rapidly since then, judging by her appearance. I went three or four days in a row to see her and found her asleep every time. Nearly every one of my peers has visited this patient, she has been in the hospital so long. I have treasured those moments when I can strongly feel our human connection, and I think we will all feel a pang after she is gone.