A couple of years ago I remember watching the the Dimbleby lecture, delivered by Terry Pratchett via his ‘stunt double’, Tony Robinson. What an eloquent man! Reflections on the past and family experiences and fears for the future were key elements of his speech. These are processes that we all go through too whether writers or not. So he shared some common held thoughts, feelings hopes and fears of many people.
One cannot disagree with anything he said, coming from a man living with dementia sharing what he is living personally and his understanding on what he has seen of the care industry. It is his take on what is today considered ‘care’ that I feel highlighted the challenge for us as dementia care workers and as a society as a whole.
It mirrors the findings on the culture of ‘care’ highlighted by the Francis report and this week’s report on the unacceptable level of ‘care’ in 14 under-performing hospital trusts nationwide. I fear we have not had the last of such reports that highlight ‘ignorance’ ‘poor administration’, ‘lack of initiative’ ‘impersonal and uncaring approaches and attitudes’. Indeed this is exactly the criticism of the now doomed Liverpool Care Pathway (LCP). I am staggered that it is the pathway that receives all the criticism when it is delivered and (mis)interpreted by the very workforces higlighted in the Francis report. When a new pathway and set of standards is introduced it will be subject to the same maltreatment under another name. The story of the LCP reveals a real learning and skills gap in our workforce. The compassion gap that others highlight. A simple examination of the LCP and a sensible interpretation of its principles should have us all understand that it is about a personalised end of life care plan. Now, there’s an idea! That is of course what we shall create but the spin on the news this week assures us that such personalised plans will be led and managed by consultants and the trust end of life guru, perhaps. Fortunate those who near the end when the guru is on duty. Pity those who don’t. The fact is that the vast majority of front line contact and interaction involves the least qualified. Yet it is precisely this group that needs the support and learning to be equipped to provide at least some basic emotional support; and be equipped with some key appropriate responses to those experiencing highly emotive situations.
Back to Terry Pratchett who said care is basically poor and he reduced it to warehousing people (he’s not wrong). If we leave it at that then this will remain a self fulfilling prophecy. It is a big job to improve care for people with dementia, but that is the job of all of us and what we are about.
Terry mentioned how he would like a caring death – a sensitive, respectful handling of his wishes to assist him to his ideal end. If he doesn’t believe we can be caring in life how can we be caring in death?
He spoke about his ideal death, sitting in a chair in his garden with a drink. If you ask 10 people in a family you will get 10 different versions of what would constitute an ideal death for the person with the illness in that family. So there will always be somebody disappointed with the way someone has died. (they died alone, I wanted to be there, they didn’t die alone, I didn’t want to be there, they died at home, I wanted him at the hospice/hospital, they died in hospital, I wanted them home, they died in winter when they wanted to sit in their sunny garden in the spring, they died before Christmas, they died after Christmas, he died before the last episode of ‘Dr Who’).
Terry’s address also raised the question in my mind – at what point do we assist with the death? When do we move from that uncaring warehousing mode to the sensitive, truly caring, attentive unconditional positive regard (love) that Terry said was needed to assist with death? Is it something we can switch on at a given moment or is it something we as a society need to cultivate amongst us? We need to start sowing some seeds of compassion pretty sharpish.