The following manuscript was submitted to the February 2017 Social Medicine Themed Writing Contest.
“Direct Admit: bounceback 72M recurrent pleural effusion, new diplopia,” my pager beeped with our new admission.
As a “bounceback” admission, this 72-year-old male would be returning to our service after recently discharging from the hospital. This type of admission often indicates that a problem recurred or an issue was not fully addressed during the most recent hospitalization. More often than not, it simply means the patient has multiple active medical problems, is acutely ill, and will progress to becoming sicker without continued care in an acute setting.
I knew this patient. John was a 72-year-old man from the local prison hospital. I met him for the first time the week before when I started the rotation. He was a nice, respectful man. He lived in one of the private isolated rooms, and two police officers remained on guard outside his door 24 hours a day. A handcuff chain looped around his right ankle at all times, binding him to the bed. He had been diagnosed with metastatic lung cancer two months ago after presenting with a new pleural effusion. Last week, he was admitted with another pleural effusion requiring placement of a chest tube for drainage. During this most recent visit, he had learned of his diagnosis. This discharge plan was simple: have the oncologist at the prison hospital determine a treatment plan, and if needed, reinsert the chest tube. With this return to the hospital now with yet another pleural effusion and new onset double vision, our first order of business was to get an MRI to look for brain metastases. From there we could talk to the oncology team to discuss a palliative plan.
As I entered his room, the guards stepped aside. “Hi, doctor,” murmured John, now breathing comfortably with a nasal cannula delivering oxygen into his nostrils.
“John, I’m sorry you had to come back. What happened?” I smiled at him.
He sighed, “Well, I guess the fluid came back in my lungs. It’s from the cancer, right? I feel pretty good right now, though.”
I nodded. “Do you have any questions?” I asked him.
“Yes, I have a couple. So, is this terminal?” he asked me.
I hesitated. I hated to give a definitive answer when I did not even have a plan yet, and we might be able to offer palliative treatment. Still, I knew there would be no curative treatment. I hedged. “What does the word ‘terminal’ mean to you?”
“Well, I just want to know how long I have. I know you can’t tell me for certain. But I’d like to know if it’s at least a few months. I have people to say goodbye to. I’d like to write some letters.”
I told him he’d likely live less than a year. I told him our goal was to provide some kind of treatment to minimize his pleural effusions from recurring and to decrease his shortness of breath so he could have some quality of life.
As doctors, we use the phrase “quality of life” when a disease is not curable and life is limited, but we want to encourage our patients to think about how to optimize the time they do have left. I wondered, what did “quality of life” mean to John, though? He had spent the last 40 years in prison, more than half of his life. I had no idea why he was imprisoned. I did not want to know, nor was I allowed to ask. John was one of the most pleasant and polite patients I have ever been fortunate enough to care for. He was grateful for everything. I wanted to take care of him with that view of him in my mind. I wanted to let him have a decent death, when it came.
“John, if I’m being honest with you, the MRI we ordered is to see if the cancer has spread to your brain. We are worried that might be why you have these new symptoms of double vision and blurry vision.”
“Oh. Doc, I really appreciate this. Thank you for just being straight with me, Doc,” he looked oddly relieved. “Now, this might be a dumb question, but I have to ask. If the cancer is in my lung, can’t you just take out that lung? I’ve heard of people living with just one lung. I know this is probably stupid, but I have to ask.” He looked at me hopefully.
My heart broke for him. I told him that the cancer was metastatic, and had already spread from his lung. For him, taking out his lung would not help.
“Okay, my next question, then. I’m worried about what’s going to happen to me. I don’t think the hospital prison is going to keep me comfortable. I’ve heard stories of other people like me who had to die; they just got put in a room by themselves in the infirmary. I’ve heard bad things about the infirmary. I’m scared I’ll die feeling like I can’t breathe. I don’t know if they’ll treat my pain. And I’ve heard about this DNR/DNI thing. I think I want to be DNR/DNI. I don’t want to be kept alive on a machine.”
I reassured him that I would work with our case manager to come up with the right place for him to be, and that we would have a clear plan for pain control and for his progressive shortness of breath. “Are you sure you want to be DNR/DNI? I think the ‘do not resuscitate’ part may be appropriate, but with your shortness of breath, very short-term emergent intubation because of a sudden increase in that fluid in your lung space might allow enough time to safely get fluid out and keep you off the ventilator. We could make sure that we do not stay on the ventilator if it looked like you couldn’t come off it within a day or two, I promise. We’ll document that these are your wishes, too.”
“That makes sense, Doc. I trust you. But please, don’t keep me on it for more than two days. I don’t want to be on a machine.”
When I spoke to the case manager, I found out that as a prisoner, John had no rights. He could write letters to the people he wanted to wish goodbye, but they would not get sent without the superintendent of the prison reading and approving them. That was not a task that they would be prioritizing over all the other work of running a prison. If John chose to be DNR/DNI, then he could ensure that he would not end up with life-prolonging measures. However, if he went with my plan for short-term intubation as needed, he would end up on that ventilator until the superintendent made a decision to terminally extubate him. From experience, the case manager and I knew that this would not happen. Although the superintendent was the legal guardian for the prisoners, he most likely would not want to make such a drastic medical decision. At that point, the hospital and the superintendent would need to address the issue in court and find a court-appointed guardian with medical decision-making power. This process would take weeks or months. By that time, John would have been on a ventilator for much longer than he requested.
I guess I should have realized all of this on my own, but I assumed, wrongly, that death would be comfortable for any patient if they advocated for themselves. Not knowing the reason for John’s life-long prison sentence, I cannot say that prison is an inappropriate place for him. I have some faith in our legal system, and I do hope that his sentence is suitable and just. The manner in how prisoners die is controversial. What if a prisoner committed a murder? Most would say that the murder victim did not get any choice in how they died, and I agree with that too. But at the end of the day, as doctors we aim to remove inequities in the care we provide for all of our patients. No matter what a patient has done or who they are, we treat them to the best of our abilities. I want all of my patients to die on their terms, with dignity. John deserves the same.
Author’s note: Per the in-House Ethical Guidelines, all names, locations and details have been changed to protect patient privacy.
Image credit: Alcatraz Prison by Alexander C. Kafka licensed under CC BY-ND 2.0.