Wednesday, January 12, 2011

my empire of dirt

Patient came to us about a month ago. He suffered from the ICU FunPak of cardiopulmonary diseases----80 pack-years' worth of smoking, emphysema, multivessel disease, and a newly acquired septal defect that took away his heart's "lub-dub" and replaced it with a pathetic "whooooshwhooooshwhoooosh". He was also unable to hear, leaving all of the staff to use his worried family as interpreters. When they weren't available, we wrote short technical manuals for him in Sharpie pen, explaining test results, procedures, and the fact that if he didn't have surgery to correct his defect, he would surely die within weeks. If he did have surgery, he had a great chance of dying on the OR table, but a slim chance of surviving and returning home eventually. The physicians on different (one could say opposing) teams argued with each other, then got passive-aggressive. Send him out to a larger facility? No. Cut him now? No. Recommend palliation and give him a bunch of drugs and an opportunity to live with his family at the end of his life? Oh, hell no.

Precious time passed, and Patient finally went to surgery. After much debate, he decided he was willing to roll the dice on dying because for him, it was worth it to try to survive until his grandchild's first birthday, a short two months from this point.

Patient spent the rest of his life after surgery on an air mattress, stoned to the gills and terminally air hungry. He couldn't be assessed for neural function because he was sedated. He couldn't have sedation lifted because he would fight the vent. He couldn't respond to commands anyway because he couldn't hear us. All he could do was occasionally open his eyes, writhe, and get bolused with more sedative, to keep him manageable.

I use the word "manageable" loosely.

The last time I took care of Patient, I could have sworn I heard more of a whoosh at his apex than I had previously.  I frowned at the find, and chastised myself for not paying more attention during my previous assessments. I couldn't think about that sound being a new development. I talked to his children, his wife; I refused to say "better" or "worse", and just stuck to the facts. I honestly didn't know what to say otherwise. The Surgeon brushed off concerns, and would only say that we needed to give Patient more time. That night, over drinks, I decided to swear Patient off. I couldn't care for him anymore. I was dreaming about him, thinking about what else I might have missed, wondering what I could change, and dreading further arguments with Surgeon. It was time to stop.

A few days later, Patient tanked and died. It was one of those TV Hospital-style deaths, with everyone being heroic, and every measure taken. A horrible, horrible death. He didn't live any longer than he would have without the surgery.

I can't quit thinking. I can't quit thinking.


  1. Oh. My heart just dropped into my stomach on this one. That is so, so sad. It's stories like these that make me hate the medical model of keeping a person "alive" for as long as possible, no matter the quality of life. I'm so sorry, that must be incredibly difficult to work intimately with a person right at the end of their life.

  2. Thanks, Jess. It's hard to not regret what happened, yet ultimately, Patient made his own choices. What's frustrating is that the medical (and nursing) communities fall down on the job educating patients and families on what happens between full recovery and dying. There are things worse than a quiet death surrounded by loved ones. I think this is part of where we screwed up with this person.

  3. I should mention that I was by no means the only nurse that worked with this Patient; other smart, strong people really fought for this guy, right up to the end. But god, what an end.

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  5. You haven't figured it out yet? You do what you do because you couldn't not do it. You care and nothing on earth is going to stop that. Most children bring stray animals home. You brought stray people. Think back. The kids you knew would come to you for help, not their own families. I believe you've had opportunities in your life that would have led to wealth, but you continued on the 'helping people' path. You don't need nursing. Nursing needs you. Your patients need you.

  6. on the other end of the spectrum, my heart swelled with gratitude and admiration as i witnessed an attending's recent interaction with my patient-
    an elderly woman who had already completed round one of chemotherapy with no discernible progress was with us following a respiratory distress scare. she and her incredibly supportive family were trying to decipher all of the information presented to them by the pulmonary team, the oncology team, the nephrologists, the medical ICU team... the patient had bags under her eyes and was pleading with me through them as i replaced the bipap mask that she had worn for the last three days to avoid intubation. i would explain to her again why it was necessary for her lungs at this point, and she would politely tell me, "do what you need to do, sweetheart. you all know best."
    i brought the attending into her room following rounds. he made direct eye contact with each of the expectant faces looking toward him and said, "look, here's where we're at. right now, you are alert, you are aware of what's happening around you, you are able to talk to your family and enjoy the company that they bring. at any moment, all of that may change. our medical technology will not be able to cure your condition. yes, we will be able to keep you alive - possibly longer than if we stop aggressive treatment at this point - but your mental status will decline, you will be supported by machines, some of those machines require sedation that would dull what capacity you have left. if it is more important to maintain the quality that you have right now, to be able to see and speak to your family and enjoy them... get the hell out. now. today. don't stay here one hour longer than you have to. you don't have much time left either way, but right now you have the opportunity to choose to spend that time in a comfortable place, surrounded by these people who love you, not worrying about any more tests, procedures, results. if that's what you want, now is the time to get out of here. we can help you do that, too."
    i don't have any words to describe the relief, the happiness on that patient's face. her cheeks had color for the first time in the three days i'd taken care of her. she smiled. as her family looked shocked and dismayed at this "failure" of medicine, this woman emanated a peace that was almost palpable. the family discussed this "new development" in the room for quite some time, but the woman's ultimate decision was delivered as a quiet, "yes, please."
    i removed her bipap mask and traded it for a simple face mask. she was able to speak again. i could finally give her ice chips to moisten her dry, cracked mouth. no more lab draws. no more consults. later that day, i sent her off to spend the rest of her life in a hospice house surrounded by gardens and art and a family who now had the freedom to focus on enjoying this woman as a mother, a wife, a sister, a grandma. a person. not a patient.