End of life care is something of a focus for me at present. For anyone who has not read my blog before my dad has terminal cancer, Dan a close friend of mine died of a brain tumour a year ago and I also have two elderly grandparents who at 91 and 93 (next week) are likely to need end of life care or support some time soon. In my professional life it has also been a focus of late as there has been a government programme focusing on End of Life Care, that launched in July 2008 and there have been a number of resources and publications aimed at improving standards across health and social care published recently.
Last night I steeled myself to watch the episode of Dispatches that had aired on Monday evening, Secret NHS Diaries – you can catch it on C4OD for the next month. It featured three people towards the end of their lives and the experience of them and their carers as they tried to have the death that they wished for. I’ll not go into great detail – would urge you to watch it yourself if interested, but I thought I’d offer a few reflections on the programme and the reaction it evoked for me.
Watching the programme just reminded me of what an epic experience we have ahead of us as a family! I saw my mum briefly today and she’d recorded the programme but didn’t feel able to watch it just yet. I’m not sure whether I want her to watch it or not really, my mum has a good grasp of what (potentially) lies ahead but there is something quite stark about watching someone going through the battle of learning to accept and let a loved one go. Lynn Pinner talked about how she wasn’t ready for Harry to die – even when he was tired and claiming he’d had enough. This was the point when I broke my seal and the tears started – it is agonizing to see her so desperately not want to let go and yet to also see her loving husband not wanting to let her down. I know that my mum wouldn’t in any way want my dad to suffer, she has said as much and they’ve discussed it – that said, I’m not sure at what point you give someone permission to stop fighting, to let them go. This was part of my argument in my last blog post about cancer treatments and patient milestones.
Lynn and Harry also seemed to get trapped in the bureaucracy of the system – Harry had a heart attack, was provided with morphine and care by the Ambulance Service and Lynn was left to contact and arrange a morphine driver with the District Nurse Team. Simple – or so you’d think, but the exasperation shown by Lynn as she tried to arrange a visit from the District Nurses brought a really strong feeling of deja vu. In my experience District Nurses have always been fantastically caring, efficient and professional when I’ve come into contact with them….getting hold of them however is never that easy. I can identify many occasions where my mum or myself would have been waiting for the nurse to come visit dad, only for them to not arrive when planned; this would result in phone tag and more waiting and usually eventually someone would come. I have no doubt that the DN’s providing them with support were doing their best but to someone dying who needs pain relief the fact that the day/night shift was coming to an end is irrelevant – it strikes me as ridiculous that in this day and age when you can bank, eat and shop 24hours a day, you can only be fitted with a pump to give medication during a day shift!
I also shed several tears for Tamina Rasheed who talked and filmed the struggle to ensure her father, Ken, received the best care within hospital. Her story rang true to me, there have been several occasions where I’ve had to advocate for my dad; never have I doubted the ability or intention of the staff who provided him with care – just with their capacity to do so in an effective manner given how tight time and resources are. My experience in life, that also appeared to feature on the programme, was that one of the challenges for staff across the NHS is being able to communicate and make decisions with each other – I can only imagine that this is more of a challenge when everyone has more to do and less time to communicate.
The thing that struck me the most in the programme though was the way in which the patients and their carers or friends had to fight – you just don’t have the energy to fight a system when someone close to you is dying and you shouldn’t need to. For what it’s worth I didn’t think the programme was very balanced, it didn’t offer any experiences of people receiving good support at end of life and I know it exists, my friend Dan died a dignified death and the support his wife and three year old daughter received was brilliant; neither did the programme offer any explanation or context of the constraints on the professionals providing the service. It failed to really provide many answers – to be fair maybe that’s not the point of it – but as someone who is living this challenge at the moment I’d like to have seen some more balance or positives presented.
On that note the following resources published last week might be of interest to anyone working to support end of life care:
> evaluation of End of Life Locality Registers – locality registers allow key information about someone’s preferences to be recorded and accessed by a range of services
> a guide to achieving quality end of life care in domiciliary care
> a practical guide about achieving quality end of life care for people with learning disabilities