Updated: Apr 13, 2019
My aunt, my strong aunt who I had never seen cry until 4 weeks ago when she was coming to terms with my uncles approaching death. We thought it would be longer but just 4 short weeks. My uncle had fought the brave fight with all his heart and soul, hoping that surgery would be an option following gruelling and debilitating chemo. Being told that the cancer hadn't responded to the chemo and surgery was not an option was the final insult. My uncle turned to the wall and decided that if he had no control over living he would die in his own way, refusing to eat and drink and just closing his eyes and switching the world off whilst the people who loved him could do nothing but watch his slow steady walk towards his death.
My aunt sat looking out of the window, not crying, I don't think she had anymore tears left. There was anger, and shock and a myriad of complex feelings including fear, fear of living a life without the person who had walked, sat, slept, laughed and cried by her side for over 66 years, She had been to register my uncles death, "nice lady, the registrar, she asked who I was , I said I am his wife, the registrar wrote widow in the book". I was taken back but I guess that's what I am now, no longer a wife, now a widow.
My aunt shared that the staff, the nurses, the doctors, hospice staff, so many staff in and out of the house (my aunt and uncle were quiet people , not a lot of visitors and that's how they liked it). It was like "Piccadilly circus" my aunt said , "all those people no two saying the same thing...….. The doctors started medication, the nurses changed it, one person increased the dose, the next lowered it. Everyone seemed to be the expert, but the experts did not work together , or share what they had done and why . We visited the pharmacy to collect one prescription and were told another one had been there waiting for collection for two days, no one told us! ‘
‘The nurse who sat overnight had to report everything into the office, seemed like a lot of time was spent on the phone".
My aunt was exhausted trying to decide whose advice they should be following, she said the final straw was when she told a nurse my uncle had a high temperature the previous night and the nurse replied " did you call it in" " Call it in, who to, and, what does that even mean "??????
The lack of coordination and communication and the impact this has on families is something I've had opportunity to listen to on two separate occasions this last week, once from my aunt and the other from a family who had come to an end of life meeting to share their experience. I question how are we still getting this wrong?
We have been talking about coordination of care at end of life at least for as long as I can remember and indeed before I decided to specialise in palliative and end of life care nursing in 1999. Reports as far back as 1995 (Calman- Hine) and every report relating to cancer, palliative care, long term conditions, and end of life care since then, have a focus on communication and coordination and we are still not getting it right. “lots of kind people all trying to do the right thing but not in any choregraphed way, so its all over the place" "staff give you equipment but no instruction how to use it" (mouth care trays). "We don't know what we don't know, and when we find out what we need to know, we don't know where to go to get it". I wonder if in our quest to get it right for people at end of life we are overloading families with what feels like a constant stream of professionals all with good kind intentions, visiting family homes giving varied differing information, are we making the already complex even more complicated and is it now time to take stock, listen to what people are telling us and maybe just maybe for some people less is more.
Coordination of care is vital but by default if this is being attempted by numerous well intended professionals it no longer providEd that much needed coordinated approach. there is a risk that in our enthusiasm we create chaos and this could have lasting repercussions for those in receipt of our care.