Thoughts on Palliative Care in the ICU from an ICU nurse
This time, a couple years ago, I wrote some thoughts on death and loss after several people in my life died. One was young and died of cancer three months after his diagnosis, two were older, and the hardest one was a death I didn’t learn about until months after it happened. Despite the individual circumstances, they were all horrible.
Even though I am an ICU nurse and have been with countless people who have passed, it never gets easier for me. I have never built that thick, wall to shield myself from vulnerability when my patients die. Many outsiders mistakenly think ICU nurses who don’t cry, don’t feel. I have never been a cryer, but most nurses, in general, are feelers. I feel it, but no one would ever know because as soon as I bag and tag someone, I have another patient to care for or a fresh surgery coming in. It’s normally when I’m sitting in my car in the parking garage or talking to my therapist that I fully process the death of my patients (if I ever do). Yes, I said it, I talk to a therapist about my life and my job because it helps me be a better practitioner and healthier person and I think more of us should.
Continuing…Although there is a sense of hurriedness in the ICU, I have always maintained two of my own “rules” with my dying patients. Rule one, no one ever dies alone. I don’t care about the low staffing on the unit or if the patient is homeless or a prisoner, no one dies alone. I don’t care if the patient is weeping from every orifice and wants to be held; I put on an isolation gown and hold them because no one dies alone. I don’t care if the patient is already perceived to be scientifically dead, no one dies alone.
Rule two, no one ever goes to the morgue dirty. Every patient who dies in my care gets a full bath before being placed in a bag. Their faces and feet are washed and they are wrapped in a clean gown and white sheet. If I have to change their dressings, I change their dressings. I try to take them back to some sort of normal or human form in a place so far from normal and human.
There are two reasons I do this. One is because I have monumental respect for the dead and two, because it gives me a moment to do something beautiful for the patient. In my line of work, it is likely, for the past hours/days/weeks I have been poking, prodding, and inflicting pain on the patient through medical treatments. Since my first day of ICU nursing, this has been morally conflicting for me. Bathing the patient gives me a chance to wash it all away and give them their dignity.
Make no mistake, I love my job and I am thankful for these experiences. However, I believe death in the ICU could be better and I noticed this in my first days of CCU nursing. I remember being a baby nurse and insanely overwhelmed. I lost 10lbs that year from stress and at least 50% of my patients died, many of them gruesome deaths (I can still see so many of their faces). One shift I was caring for a woman who was diagnosed with idiopathic pulmonary fibrosis (IPF). She was a middle-aged, single mother with a young daughter and refused to accept her fate (IPF is not curable). I could see the fear on her face and hear the uncertainty in her words; I wanted to help her, but I simply didn’t have time, which made me feel terrible.
She wanted to spend as much time as possible with her daughter and go home. Everyone wants to go home. So, this is when I first witnessed the beauty of palliative care (AKA supportive care). I, like many, thought palliative was only hospice care, but this is maybe the smallest part of everything palliative care can do. My unit was no stranger to the palliative care team, so consulting them was simple. I told my patient I had someone coming up to talk to her about her options, who had more time and was better informed than myself. Although she didn’t respond and seemed slightly apprehensive, the palliative care team used their skills to put her at ease once they arrived.
In a few days, this patient was medically stabilized, her shortness of breath was under control, and she was able to go home to be with her daughter for several more months. She was medically managed by out-patient palliative care and home visits. The team told me they had helped her and her family process the illness and she died peacefully.
While there is research to support that palliative care actually improves patient outcomes when implemented early in the course of a serious illness, I believe I was able to witness it first-hand with this patient. Although every situation is different, in my experience as an ICU nurse, if this patient had stayed on our unit or been considered for a lung transplant, she wouldn’t have ever been able to go home and spend quality time with her daughter. We all know the drill. She would have eventually become too dyspneic, requiring intubation, which would lead to a trach and peg, and infections etc. Her child would have had to visit her in the ICU, which is nothing a child should ever have to see. And if one were to argue that she would have lived longer in the ICU (I do not believe this to be true), there is no way her final days would have been so peaceful. Yes, we can do so many medical treatments, but many times we simply shouldn’t.
Also, and to my surprise, the palliative care team helped me that day too. They took my guilt for not having the time to help the patient and did more for her than I could even imagine. This was utter relief for me to have a team of people who not only supported my patient, but also supported me. When an attending mistakes me asking for a palliative care consult as a reason to withdrawal care or “give up” on a patient, I ask them to order the consult for the nursing staff and family support (works every time). Once again, the palliative care team is not only for end-of-life care. The more they enculturate into daily ICU practices, the more everyone will work together and embrace each others talents for the sake of the patient, patient’s family, and even nursing staff. But, of course, step one is getting them in the door (i.e. getting the consult).
Ever since that day, I have been a promotor and believer of palliative care in the ICU. I am currently in an Adult Gerontological Acute Care – Doctoral of Nursing Practice program and will be relating my doctoral project to palliative care implementation in the ICU. ICU life is an inevitability for many and while we care for patients at the height of technological advancement, we sometimes forget the rest.
We forget what the patient truly wants because we never ask. We forget while the patient is incapacitated his or her family is struggling to make ends meet because the hospital bills are outrageous and the patient was the family bread winner. We forget the nurses who care for these patients and families day in and out and absorb their emotional pain. We forget the doctors who just want the patient to live and blame themselves if the patient dies. We forget that practitioners provide the best care when they are healthy and happy themselves. We forget that despite science, technology, and the amazing medical advancements that exist, we are all human beings. We need care from every dynamic in the ICU – scientifically, technologically, psychologically, socially, and spiritually from beginning to end – and palliative care does not forget this.
I encourage everyone to share their stories regarding experiences with palliative care. I also urge my fellow ICU nurses to get the consult for patients who have a long road ahead (you know who they are). You will be surprised how much the palliative care team can help your patients and you with the intricacies of ICU life.
As always, we get each other.
