"Community end of life care"

My father died at home, which is where he wanted to, following a deterioration in his health which the GPs felt was not reversable. But the end of life care he received could have been better from the GPs and DNs. 

As a family we kept being told it was our responsibility and it was different to being in hospital.  Some of the DNs spoke to the GPs about my dad's deterioration but others said we had to do this as they did not work as a team.  This was very distressing for us and also led to delays in care provision for my dad.  We thought GPs and DNs spoke to each other especially as they worked in the same building.

My dad had been seen by his own GP to start with but when he had a sudden deterioration on a weekend, an out of hours GP saw him and felt he was palliative completing a DNAR and prescribed various medications for the DNs to give. This GP was amazing and took time to sit with my mother and us as a family discussing my dad's care and prognosis as my father was unconscious. But his own GP disagreed and said we should give him his own drugs despite the fact he had poor gag reflex, we were afraid he would choke.  

Another GP from his surgery prescribed him for morphine patches as the domiciliary care workers felt he was in pain (not the DNs who were visiting and  you would have thought would assess this). When this was not enough another GP visited and said he could have a higher dose of the patches and if needed the medications prescribed by the out of hours GP.  We asked if the palliative care team could be involved and were told no as my father was not complicated enough, and the palliative care team were busy.  This GP said that as my dad was at home it was the 'family's burden to make decisions'.  We were horrified to think they thought my father was a burden and that just because he was at home they were leaving decisions to us and not trained healthcare professionals.  

Luckily we had the amazing care workers coming 4 times a day plus one amazing band 3 HCSW.  The day before my father died the care workers and the HCSW felt he needed more pain relief, which was already prescribed. We called the DN team but they said we would need to call the out of hours again or get my father admitted to hospital. After a lot of phone calls the DN did come to see my father but still wanted my mother to make the decision as to whether or not to give him morphine.  My mother is in her eighties and not a nurse and she said she did not feel qualified to do this.  Eventually the DN called the palliative team who said for her to give my father morphine which did help make him more comfortable.  But even after talking to the palliative team the DN insisted we as a family would need to call them every time we thought my father needed more pain relief rather than them come and assess him.  Perhaps if the palliative care team had been fully involved there might have been less expectations on us a family to assess and diagnose my father.

 As I said my father sadly died but it was at home with my mother and family with him and he was pain free but it left us as a family feeling guilty as we had to beg for the pain relief to be given and we all knew that it would hasten his death as it reduces respiratory drive.  

We knew the team of GPs and DNs were busy but all we wanted from them was some respect for my father and mother at this sad time just as the care workers had given them.