The patient was an adult, developmentally delayed, and a severely autistic, male who has lived in assisted living facilities for over 50 years. He presented to the UC Davis Medical Center ENT clinic for an extremely large and necrotizing scalp mass that invaded his left scalp and face. The head lesion had been present for at least 10 years with past biopsies revealing squamous cell carcinoma. Possible delay in care was due to his violent behavior and resistance to medical intervention. He was known to be uncooperative and combative and had required anesthesia for exams and procedures. It was reported that he required large doses of sedation as well as familiar medical staff for any doctor visit. The caring facility reported that obtaining a head CT required extra medical staff and large doses of sedation. At baseline, this patient has demonstrated severe agitation, anxiety, and tactile resistance against medical intervention and staff by yelling screaming, pulling tubes out, and running from his bed.
There were many discussions and consultations including bioethics regarding the best course for this patient but ultimately the decision was made to perform the surgery. There were a few different plans proposed however we agreed upon a plan that would have him sedated and on a ventilator for 30 days due to his behavior. We were concerned that his behavior would cause injury to himself and others as well as his wound and graft sites.
The original surgery was performed without complication. He had 2 other surgeries during his stay. His length of stay was 29 days in the ICU.
After surgery, his care and progress were mostly in the hands of his caring nurses on Tower 7 MSICU Gold, the only ICU that cares for post-operative ENT patients. And it is because of his caring nurses, particularly Julie Hamilton that his post-operative course was smooth and positive. Julie was his primary nurse during his 29-day ICU stay who was the constant familiar caregiver. She provided him the kind and compassionate care that he needed. She became his advocate and safety when procedures needed to be performed. Julie went over and beyond to provide this very vulnerable patient what he needed – freedom from pain, nutrition so that he could heal, exercise so that he could go home, compassion so that he could feel safe. She advocated for him during a care conference when the course of action was not going to benefit him. The outcome of that care conference was ultimately the turning point in his care. The intervention allowed him to be weaned from the heavy sedation and therefore free from restraints and the ventilator. It allowed him to be more awake and interactive with the environment and nurses. While he did act out, he never became violent or agitated to the point of needing to be restrained because of Julie’s kindness and protection. Julie made him feel safe so he would try to communicate his needs instead of acting out. It was very clear that he preferred to have Julie care for him above any other. He was calm and he always did whatever she asked him to him without resistance or agitation.
As agreed prior to his surgery, he stayed on Tower 7 MSICU Gold until discharged. As we made plans for him to go back to his facility, he was reminded that he was going “home”. He asked if Julie was going to come “home” with him. It was so amazing to watch him as he progressed from marginally surviving to thriving in an ICU environment given his horrid cancer and violent history. His wounds healed, his eyes went from dull to clear, and he was calm when he was discharged. As the ambulance drivers came to pick him up, he gave Julie a big hug before we all said “goodbye”.
It was one of the most touching and surprising experiences I have witnessed. I have always known Julie to be an extraordinary nurse. She has always gone over and beyond for her patients. But, she literally transformed the life of this very vulnerable very ill and scared man.