There is a scene in the movie Cloud Atlas where the character played by Jim Broadbent discovers that the hotel his family have sent him to is actually a locked nursing home. It sticks in my mind as although I haven’t been witness yet to the moment when the realisation dawns on an older person that they are never going home, it must be a common occurrence.
Indeed, ‘We’ll get you home soon,’ has become a trope, a cliché I sometimes use to allow me to move from one patient to the next. I know it is a lie, but, how can I say, ‘We will get you to a new care home soon and you won’t ever get home?’ This is just not something that is doable in the chaos of 2018 acute medicine.
You’d like to think, in a different world, we would spend time with people, their families, support them, counselling, allowing denial, anger and grief before the ultimate move; perhaps organising a last visit home to collect treasured items;
On Friday, the interaction between a healthcare assistant and my patient led me to write this poem. The narrative was, ‘You can’t go home, you are too unwell.’ This, all said to a woman with significant dementia who is overwhelmed by grief, lost, not knowing what or where her home is.
Most people advocate at such times, when you have a person very upset, rather than lying – ‘You are going home tomorrow’ with the knowledge that they are never going home; the techniques of diversion or distraction – ‘Would you like a cup to tea?’ – for this patient, I took her a trip to get some fresh air then visited the flower shop; that seemed to work.
But, back to the original point – what feelings are experienced by a person, who, potentially because of the extent of their dementia or other disease lacks capacity and a best interests decision has been made to ‘not mention the nursing home’ and, home is an impossibility, what happens when or if the moment comes when it dawns on them that the doors are locked and the seven by ten room is their forever home?
It must be awful.
We know that for all that language and numeracy can deteriorate as dementia progresses, emotions and feelings tend to persist; you can contribute to a person’s feelings of happiness and love, right up until the end; hand-holding, hugging, smile, laughter.
I don’t have an answer.
Yes, always be honest, open and transparent. This is a mantra of health and social care, indeed of life in general. What do you do when transparency is just too difficult?
‘We will get you home,’ shifts the often, older person to a temporary community nursing bed where they are housed for a period of time for health and social care to sort itself. This is an industry that has exploded in the UK over the past few years – I haven’t seen any outcome data of benefit; sure, we know that unnecessary hospitalisation is bad, but what about inappropriate institutionalisation? What effect does this have on person’s sense of autonomy?
What does move from A&E to ward one, two then three then rehabilitation, intermediate care, step-up, step-down, interim, off-site bed do to your sense of orientation?
Imagine the last moments.
Three in the morning, you fall in the bedroom, perhaps on the way to the loo.
Hours later, you are wet with wee. The paramedics come and convey you to an overcrowded, high-tech, process driven emergency department and that is it.
You never see home again.
The little items tucked at the back of your kitchen drawer left for someone else to examine, to rifle through and chuck or not, recycle or dispose; your life in black bin bags and you, anonymous, in hospital gown.
I don’t want to get folk down, although writing this is making me sad.
There are solutions, positive approaches to all of this, they are just for the moment, overwhelmed by pressure in the system.
Let’s call a time-out to flow. Let’s slow down the momentum and think that we are determining the trajectory of the lives of our mothers and fathers. Let’s do to them as we would have done to ourselves.
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