Why do we insist on keeping people alive past the time when they should have passed from this world. Is it our own ego, or selfishness in not wanting this person to leave us even though we know that they will be going to a much, much better place? This is an ongoing sore spot with me as an ICU nurse. Our “modern medicine” along with the ego of some of our star doctors, (who get paid based on the procedures they perform as apposed to the end result), are unable to let people go naturally. I’m not advocating physician assisted suicide by no means. I believe all people die eventually, and giving some terrible incurable disease, we’re only piling additional harm and debt onto the patient’s family by temporarily holding back the inevitable. Yes, I am a strong hospice advocate, especially with terminal illness.
(For liability reasons, I’m not naming names). I first began nursing as a new grad in a Neuro / Trauma ICU, in the only level one trauma center in Alabama. I was very naive. I remember one of my very first long-term patients. He was a very high cervical spinal injury and we were working to get him off of the ventilator. He was very sick and had multiple surgeries. I remember how busy he was and how complex it all looked. He was truly the sickest individual I had ever seen. He was a multiple trauma victim… crashed his Harley into a large truck. Multiple long bone fracture, spinal injury, closed head injury, cardiac contusion…
Call it blind naive optimism or too many TV medical shows, but … It never crossed my mind that he would not recover from this injury.
Weeks went by and he remained frail and 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. Being long term NPO (nothing by mouth), this was one of the greatest pleasures granted to a long term ICU patient. Our ice was mixed with blue food coloring. In that way we could tell if the stuff he was coughing out of his tracheotomy 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 and it was obvious that she really loved him. Through all this, I somehow became close with his family. I talked with his mother and father, his wife, sister and brother. I encouraged them and prayed with them.
Eventually he got better. He was doing so well, sitting up, talking, optimistic and happy. With therapy, he had gotten some use of his hands. He and discussed his future and how he had planned to go into business rebuilding starters and alternators. When I discharged him from the ICU to the floor, it never occurred to me that he could still die.
I also 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 this ill, I didn’t realize that there’s really a pretty good chance that this patient will never 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 initially, way back in the ER, had suggested stopping treatment and letting him die. I would have protested as sharply as anyone. But where do you draw the line when you see clearly that this is just too much for the normal human body to recover.
It had been weeks and I had moved on. One night, out of the blue, there he was back in the ICU. This time he was blue, unconscious, and on a ventilator at 100% with high PEEP. I was distraught and shaken. The off going nurse said that he had infarcted and his entire bowel had died. Now he was septic. There was nothing more to do and he was now a DNR. Although I had a feeling from the beginning that this would not turn out well, I still felt really bad. This wasn’t just another patient, he had developed into a friend. Somehow, I not only felt I had let a very nice family down, I had let my new friend die. In twenty years, I’ve never again let a family get that close to my heart.
Another 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 was 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 there with me… and taking responsibility for their decisions. They were at the bedside every day, watching the patient deteriorate as the months went by. For some strange reason, that really meant something to me. It was like they were going through all of this with me, giving me comfort while I attempted to give their loved one comfort.
Yet a few rooms down, there is another patient in a similar situation. This patient is also trached and is fed through tubes. It was 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? This family very rarely comes to visit. 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 his airway suctioned. They aren’t there to step out of the room so that we can clean up his incontinent bowel movements. They are nowhere to be seen when we do dressing changes. They just aren’t there. To have a person who is suffering so much, we as nurses seem to be there just to perpetuate it, as this guy is clearly not getting better. With the progression of his disease he can only maintain. He has made peace and is ready to move on. The family is in denial and doesn’t want to even come to the hospital. I think this situation is one of the saddest things I have ever witnessed.
We are all war victims in some sense. I know nurses that are all shot out, drink heavily, live a very unhealthy lifestyle, possibly suffering from PTSD. It’s not the war on sickness and disease that gets to us, its the suffering of our very human patients that we invest so much of our lives to help that gets to us.