When I moved from the ED to ICU a coworker smirked devilishly and asked me how it felt to be a gardner. I’m sure my expression was inquisitive. His explanation of ICU nursing was that is correlated to gardening: water the plants to keep them alive until the season ended and they died. Perhaps some folks would think this is a cruel analogy, but it certainly has a true sentiment.
A significant population of the medical ICU are essentially residential patients of the ICU. They require so many interventions for cellular life, yet may never actually leave the intensive care unit. Caring for these patients requires the providers of their care to take a look inside their own definition of what life is and truly take stock of the bias that they may hold on the subject.
What life is to each of us is certainly diverse. For me, I have already made it known to my family and colleagues that if I cannot enjoy a margarita, the ability to taste the salt on the rim of that chilled glass, then please let met alone, and let me go in peace. My family and friends know my stance on my life, and luckily they have accepted my position, just as I have accepted my mother’s which clearly is that if I every put her on life support, when she finally passes she will absolutely haunt me for the rest of my natural life.
In the past week I’ve had some interesting patient-nurse discussion and patient family-nurse discussions. In one of those conversations an ESRD, vented, liver CA, tube feed dependent, bed bound patient with multiple massive bed ulcers asked for hospice care. As a result the patient’s spouse asked for a psych consult. This patient knows that they will never walk again and that their body is failing. This patient has serious pain and prior to residing in the ICU for the past 3 months they were living in a nursing home, bed bound. This person had come to the decision that they wanted hospice care, yet they are being denied because of intermittent confusion related to intermittent elevated ammonia levels from liver cancer. The patient is a full code.
Another patient I’ve had has been intubated two weeks and cannot be weened form 100% FIO2. Proning didn’t help, and the addition of nitric oxide has only maintained a POX in the 80s. The patient had refused intubation for days, but eventually agreed when the high flow O2 they were on was no longer working. The patients body is failing. The patient is a full code. The family of the patient is loving, they adore the patient. They are hopeful for a recovery and they are strong on faith. When I’ve updated them on what has improved, stayed the same or what has worsened, I found that they weren’t getting the full picture. They expressed their confusion and frustration with not being informed on the patient’s current condition. How could they be confused if they are being updated daily?
They were confused because they were only receiving partial information.
The chest tube that was inserted after a biopsy was thought by them to be tool to thin the patients blood of clots from the patient’s lungs. They understood the ventilator kept her breathing, but didn’t understand that her inability to ween from 100% was serious and was not improving her health. The cardiac monitor numbers were not understood and the tachycardia was thought to be the pulse ox. The treatment for DVT and suspected PE was not well understood, nor was the fact that the patient was too unstable to take to CT. The constipation was thought to be an easy fix with a laxative, but not understood that the persistent hypoxia and hypotension was a bigger issue.
When families hear from residents, nurses, attending, consulting providers and have that information in little blurbs verses a conversation laying out the path and plan of care as well as the progression of the illness it becomes confusing.
Every family is different. Some might have a background that allows them to grasp the severity of what is actually going on, while others may not.
Perhaps we need to start assessing the family members and those charged with the decisions to see if they are truly understanding the whole picture. After we assess their reality and their needs we need to treat them just as we do with our patients and give them the information that we share with our medical staff. We need to explain to them what the current condition is. We need to explain and possibly re-expalin the risk and benefits of interventions. We need to update them on what has improved, worsened or stayed stable on a daily basis. If the patient is developing bedsores it is easy for the family who may not actually see the wounds to blame it on lack of care, but they may not understand that it also has to do with poor tissue perfusion or disease process.
Perhaps we should encourage more transparency in our care, even if we don’t know what is going on with the patient at the time.
One thing we should absolutely be doing is having family meetings with the provider team, social work and nursing early on. Yes, everyone is busy. Yes it is hard to coordinate a team to sit down and talk with a family, but it’s needed. One of the most repeated phrases I’ve heard from loved ones in the ICU is that they “didn’t know how bad it was”.
The patients we care for are often older and very sick, they are at the end of their season and wilting. Their loved ones are not ready to let go of the beautiful person they love. When the patient is intubated without a voice to say they are in pain, and they are sedated and appear sleeping they are essentially in a suspended state of affairs. They are also powerless. Sedated and sleeping does not mean free from suffering or improving in health.
While it is our job to heal and fix people to restore their health, often times we do not. It does not mean we are failing. We cannot stop the inevitable, death. We can only slow it.