I don’t want to say I became undone last week; the dissembling was probably not noticed by most although it was real.
It began with my hosting an online meeting we have been running for the past couple of months in which we discuss issues relating to human rights and dementia.
We came-up with the idea prior to Covid – with the arrival of the virus and all that has followed the topic has become more important.
I won’t go into the subject-matter as it was closed to participants; I did however present the case of one of my patients who had recently been in a local care home.
Again, I will not go into the details, the crux was however that after weeks of hospital then care home treatment and support she found herself back in hospital.
Now, older people becoming unwell and returning to hospital – we call this readmission is not new, what was particular about this patient was firstly, her husband had actually moved-in to the care home in order to spend time with her, hence her return to hospital had led to another separation, nor was the reality that in hindsight, reviewing the assessment undertaken of my patient after she was back in hospital was the transfer necessary, more, the nature of her transfer.
I don’t have my patient’s opinion and this is one thing, I do know however that her husband did not want her to go back (it all happened, as this often does, in the middle of the night – episode of breathlessness, paramedics called, low oxygen levels).
‘He didn’t want her to go back to hospital… We managed to convince him.’
I don’t know all the ins and outs – what was more important was the fact that I had not asked my patient what she wanted.
Yes, we call this, ‘What matters to you?’ or in the lingo of healthcare, ‘Advance Care Planning’
I explained all of this to the online group; as I was talking, I realised how bad it was that I had not taken the time to ask my patient as to her preferences.
Indeed, I knew very little about her beyond her liking for Manuka Honey.
There is a rift between what doctors and indeed the health and social care system does with people and what it knows about them.
It is easy to blame Covid; ‘We have been so busy; we have focused on oxygen and blood pressure.’ Indeed, if you listen to doctors or nurses talking, it is the ‘NEWS’ which stands for National Early Warning Score that is more relevant than perhaps what the patient might want; you see, in emergent situations, such as when an individual’s temperature is too high or their heart rate too low it is not always possible – or, possibly fair or appropriate to ask, ‘What would you want?’ as the ‘would’ becomes ‘do’ and ‘What do you want?’ seems to take too much time when an paramedic is on their way.
I had forgotten the basics of person-centred care.
I have become victim to the system bias of considering diagnoses and discharge destinations to be of more importance than the person I am discharging.
Yes, I am a devotee of the admission avoidance care plan – this is discussions and letters about who prefers at all costs to remain outside hospital (we know there are certain groups of people for whom hospitalisation is not what they want), yet, I often wait until a patient is either so unwell that it is obvious they would not want, desire or require admission that I hold the conversation.
I have not been adequately proactive.
This all dissembled in the talk when one of the participants asked if I had heard of ‘this is me’ – now, readers of my blog will know that years ago I actually wrote a this is me with my friend Helen Sanderson;
When I was running the now (very sadly closed) Mallard Ward at Doncaster Royal Infirmary, This is Me was a central tenet of our care; knowing what a patient would like to be called, whether they had a dog or a cat, preferred coffee or tea was as important as ensuring our patients avoided hospital acquired pneumonia or pressure ulcers (and, because we knew our patients we subsequently avoided these harms).
So, yes, I know this is me – I had just somehow forgotten about it.
Care homes have often had systems for getting to know their residents – often, in the past, relatives, family, grand-children would visit and thus the staff would get to know who is who; when I was younger I would visit my grandfather in Newark Lodge in Glasgow; he would spend the weekends at his family’s houses. He lived in a care home, yet he was still part of the family, the community.
Covid has undone this.
A person moving to live in a care home or passing through an assessment period in intermediate or so-called step-down-care does not have the opportunity for family members to pass-on quirks; a narrative history of participating in summer fetes and parties has ended. Residents are fading, and, as always, those with dementia are most vulnerable, into an anonymity.
Here I have re-written the this is me that Helen and I designed five or six years ago; you can see it here – it was never intended to be used for people in care homes – hospitals were always the place that older people risked slipping between the gaps; care homes are now part of this challenge.
And my patient, yes, she should have had ‘this is me’ completed; we should have known more about her and discussed this at our MDTs – multidisciplinary meetings than the transactional tete-a-tetes that have followed the summer.
And, she should have been asked what she would want, if and what in certain circumstances.
This is decency.
This is care.
And, without care, where are we?
4 thoughts on “this is me, again, and what you and i want or do not want when the ambulance is on the way.”
Thanks for sharing this Rod. Every sentence in here just resonates about the stress/riff of the system. And thanks for being courageous enough to be open about this discussion too. That’s what makes it all caring/human in the end. Being open & reflective & transparent.
So glad that you’ve been able to re-write some of ‘This Is Me’ for the care home. Hope you’re doing ok? All the very best
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PS: Lovely photo of you
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Thanks Sarah; I appreciate your words. Take care of yourself.
A timely reminder… a heightened atmosphere, long hours, great pressure etc in healthcare settings must make difficulties.
My recent eye injection was lucentis but should have been Eyelea!
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