Talj’s Blog

I have many, many feeds in my netvibes account all of which report the latest brain tumour news from around the world to me as it happens. Tonight an article flashed up about the Liverpool Care Pathway for the Dying…not something many people are aware of (I certainly hope none of you are ). The pathway aims to make the end of a persons life the ‘best’ it possibly can be…instead of how things ‘used to be’…it is a wonderful document but sadly all to often it is not adhered to and through BT Buddies I have known of plenty of occassions when the basics from the pathway would have made those last few days that bit more easier on patients and their families…

Anyway, I have an interest in the pathway as part of BT Buddies so I clicked on the link and was greeted with the following paragraph…

“Imagine you have just six hours to live. You’re wired to monitors, and have tubes all over your body. Nurses and doctors know you’re not going to recover, but they still keep changing your drugs and taking blood from your arm. Your spouse is trying to hold your hand and talk to you. But all you can hear is a machine that goes “beep”. It’s probably the last thing you’ll hear.”

This is how Damian died. Had he not already been a patient when he had his massive heartattack he would have died very quickly at home. Instead, because he was an inpatient he had a massive heartattack and was worked on on the general ward he was on for over 5 hours by people trying to (obviously) save his life. He spent the next 7 days in intensive care where we kept being told over and over that he was not going to recover and they would give us a few hours and then they would switch his life support machine off. Those few hours would pass and they would return to us and say they wanted to try one last thing. For 5 days this was our life.

However, from the very first day they knew that if by some miracle he pulled through he would need a heart transplant and would lose his right leg……his kidneys were failing and his liver had pretty much packed up…I wondered what made them feel the right thing to do was keep trying, over and over again without a care in the world for us sat in that small relatives room wondering if that next moment would be his last…or for Damian. How would he cope with all these things if he were to survive? If he were able to speak what would he want to happen?

I find the telegraph paragraph above provides me with a few more difficult questions. Would I have preferred Damian to die quickly and possibly alone? Would I have been ok that I never got to say goodbye? Or, whilst those days in intensive care were horrific, did they provide me with a way of spending a last few days with Damian?

Actually, if they had stopped trying to treat him that first day, moved us to a side room and gave us all time (he was on life support) to say goodbye I feel that would have been best for both me and Damian.

Instead we said goodbye the first few times they came and told us there was nothing more they could do…after that it became too distressing for me, and I was worried that as they said we should talk to him cos he could probably hear us, he too would be getting upset with us ‘giving up’.

I called my Mum and told her the doctors said he could probably hear us but I didn’t know what to talk to him about, my Mum told me to just say all the things I had ever wanted to incase these really were his last days… I stayed with Damian that first night alone and did what my Mum said…probably one of the most important things someone has said to me my whole life…

5 days after his heartattack I went home. I intended to go back the next day but around 7pm I spent sometime on my own with Damian and I said goodbye. Home was too far away for me to dash back if something happened to him so I couldn’t leave without knowing I had said it ‘just in case’. It was the most important moment of my life. He had lovely rosie cheeks and the nurse I had got to know very well had shaved him earlier so his face was so soft.. there were beeping machines, wires all over the place, nurses checking stats etc…but to me it didn’t feel like there was anyone or anything else there. It was also the most heartbreaking moment of my life.

The next day, before I left for the hospital, his Mum called to tell me they were running some tests and that we couldnt be with him whilst he had them so she would call me when I could go up and see him. Later that day she called, but it was to tell me that Damian had been declared brain dead. They believe a clot travelled to his brain at some point within the last couple of days. To be certain they scheduled the test to be run again the next afternoon.

Damian’s heart began to stop in the morning of the 18th June 2005 and he passed away, before the tests, and shortly after 11.30am. He was 30.

I will always believe that, after my goodbye that Thursday evening, that was when the clot travelled to his brain…I have felt ever since that evening that he knew when to say goodbye too and though he could not speak and hadn’t moved for days he signalled to me that it was ok for me to leave him…maybe I sound crazy?

Here I am rambling on! But just those few words at the start of that article brought all this back to me in an instant.

The next paragraph in the telegraph article says…

“Ten years ago, that was how too many people reached the end of their lives – in hospital, as a failing body, plumbed into machines, with staff doing their best to cope, but with no guidance on how things could be better. But today the way in which many hospital patients are cared for has improved enormously – and death is being treated as the natural end of life, rather than a failure of medical technology.”

I have experienced the death of both a sudden trauma patient and observed as an ‘outsider’ a terminally ill patient…Damian died just over 4 years ago, Rose died almost 3 years ago…So the NHS weren’t letting us down 10 years ago but at the latest 3 years ago and I have been made aware of other very sad final days since then…maybe one day someone somewhere will write guidance which is followed by all and does right by each individual patient and their loved ones…maybe…

Damian

1975 – 2005