"Better Communication"

My mother in law was admitted to ARI in mid January with a suspected infection due to confusion and low blood pressure. She was admitted to 101 initially where she received all of her primary tests. Her husband and sons weren’t really told much of what was going on, what she had been tested for and what the plan was going forward. That evening they received a phone call saying the had found a mass on her brain and that was it. The next day she was moved to 205 where the level of communication got worse. 

I was to say throughout this the nursing team were always compassionate and caring towards us all when we came to visit. I do feel as if there was a delay in catheterising her which meant she had lots of wet clothes which could have been avoided. 

 The next few days passed and we still didn’t have any answers. A doctor came and spoke to the boys and just threw the word cancer out without even a single thought or conversation prior to this. It went along the lines of well with cancer it is what it is sort of attitude. At NO point had any of us been informed it was infact cancer. They then randomly found out there was also a tumour on her lung. The boys then asked again what the plan was now and yet again different stories. We will biopsy the lung. We will MRI her head. Actually no we are not going to biopsy the lung. Don’t think we will bother with the MRI. Not sure what we will do. It was at this point I stepped in and asked to speak to a doctor who was in charge. We spoke with a neurosurgical registrar perhaps more senior and I said to him please tell us evening from start to finish as nobody has any idea what is actually going on. He was very good, clear but with good explanations of what was happening in her brain. Explained well why she couldn’t have the biopsy and that in effect she was basically going to be a palliative, EOL care patient. Naturally we were all devastated. She had only gone in with a suspected infection to then be told she maybe has a month to live. Why couldn’t any of this been discussed earlier or indications given instead of being drip fed inconsistent results and possibilities. It meant that all week her boys were stuck in circles wondering if it was cancer. Was it treatable because of the lack of direct and compassionate information being passed on.  I was very disappointed in the 205 medical team when it came to this. The nurses helped where they could but they could only tell us what they actually knew. 

There was then talk of referral to oncology for management but this never happened. I feel like there should have been a discussion with the family about what was going to happen from their side but instead she was shifted out of ARI quickly so she was no longer their problem. 

Overall I’m upset at how they have been treated. The lack of understanding from her loved ones point of view, the lack of transparency from the medical team, the lack of actual specialist communication and overall communication as a whole. It’s really not how things should be done, especially when a patient is given a terminal diagnosis. Clearer explanations were needed along with potential reasons as to why this happened so that we can all gain some sort of closure going forward.