I know I’ve written before about futile care and about keeping people alive past the time when they should have passed from this world. News flash: I’m going to write about it again. Right now.
When I first began nursing in an ICU, I was very naive. I remember one of my very first long-term patients. He was having a second heart bypass surgery. Or maybe it was his third. I remember thinking, “Just how many times can one have bypass surgery in one’s life?” Well, in this guy’s case – three.
The surgeons and perfusionist could not get him off of the heart-lung bypass machine after the surgery. He just didn’t tolerate it. This necessitated them bringing the patient over to CVICU while still on it. Then it apparently turns into a VAD – a “ventricular assist device.” The hope was that it would take some of the strain off of the ventricle so that it could rest and then we could wean him off the machine over a day or so instead of over a few minutes.
I remember how busy he was and how complex it all looked. He was truly the sickest individual I had ever seen.
Call it blind naive optimism or too many TV medical shows, but …
It never crossed my mind that he would not recover from this.
He remained on the VAD for a few days or so. When he came off the VAD, he still required multiple pressors. He was swollen, sedated, and still the sickest person I had ever seen. He then followed a course that I was to witness many, many more times over my career: trach, PEG, weeks and weeks in the ICU, and once he finally left ICU he would come back several times before finally dying.
One thing I remember about him was that we would feed him ice chips with blue food coloring. In that way we could tell if the stuff he was coughing up from his trach was aspirated ice chips.
It was. Every time. Blue phlegm.
The other thing I remember is that his wife came to see him every single day and would stay for a long time. Maybe she had no other obligations, maybe she did but made him a priority. I don’t know – all I know is that she was there.
This brings up a few things that I’ve been thinking about lately. I realized that for the majority of my patients and their family members, their loved one being critically ill is the first time they’ve ever seen anyone so sick before. Through hope and a misguided sense of medical science’s abilities to cure, they have unbridled optimism. They don’t see the same cases day in and day out. Just as when I was first exposed to someone so ill, they don’t realize that there’s really a chance that the patient won’t recover.
This realization has gone a long way towards clarifying the thought process that goes into making someone who is obviously (to me) terminal a “full code.” With the patient that I described above – I think it would have really shocked me if someone had suggested stopping treatment and letting him die.
The other thing that has been on my mind recently is the availability of those making decisions for the patient. We recently had a patient that was in ICU for over 3 months. It was clear to many of us nurses that she would never, ever leave the hospital (and turns out, didn’t leave the ICU for more than a day or so on transfer before she’d be back). The family was adamant that everything be done for her and she lay in that bed and wasted away day after day. Her labs became increasingly abnormal. She developed bedsores despite frequent turning and skin care. She was trached and was on the ventilator. She was fed through tubes. She closed herself off from almost everyone, even nurses that she used to smile at before. She would barely look at her family… but there’s the thing. The family. That family was there every single day to watch this unfold. Did that make it right? I don’t think so, personally. But it made it a little better in my mind. At least they were taking responsibility for their decisions. They were at the bedside every day, watching the patient deteriorate as the months went by. That really meant something to me.
Yet a few rooms down, there is another patient in a similar situation. This patient is also trached and is fed through tubes. It’s impossible to get him off the ventilator. The times that he has communicated with us through writing, he has told us that he’s ready to die. Ready for this to be over. But his family is making the decisions. They’ve decided that everything is to be done for this patient. If his heart stops, we’re going to pump his chest and try to get it restarted. Yes, the family knows his wishes – they’ve seen what he’s written. They won’t accept it.
The difference? The family very rarely comes to see this patient. Maybe once or twice a week for a few minutes. They’ve put this patient in hell and now they won’t watch it. They won’t watch what they’re doing to him. They aren’t present for the times he coughs and needs suctioning. They aren’t there to step out of the room so that we can clean up his incontinent bowel movements.
They just aren’t there. I think it’s one of the saddest things I have ever seen.