I have been writing about advance care plans for a while.
Not necessarily ‘before they were fashionable’ – trend setting has never been my thing, yet, suffice it to say, for a while. (See here from 2017).
We held another of our Covid Conversations on Thursday.
Essentially, it was me, a GP colleague Sara, Colin and Penny from our dementia, frailty and older peoples’ mental health (Yorkshire & Humber) network with others from health, social care and the voluntary sector, discussing, advance care plans (ACP) during the time of Covid.
There is much to be said about all of this, starting with, for example, the ill-fated GPs who thought it an idea at the start of Covid to write such plans on behalf of all of their care home residents, a sort of blanket order to keep them out of hospital.
This was met with outrage from many as it was perceived as old-school medical paternalism, and essentially, one person determining the fate of others without their involvement.
We reiterated our position that this was not where we are coming-from; instead, we began a conversation about what ACPs are (and I guess, are not) – I’ll come to that shortly.
If you haven’t encountered my previous discussions, in essence, ACPs are documents compiled either with the patient (person/resident/client) and a health or social care professional, in which the individual’s preferences are recorded for, in the event of an untoward future development – this is, usually when things go wrong – the patient for example, (let’s stick with the clinical model) becomes incapacitated;
There is no set-format as to the content or structure of an ACP and I have taken it one way, others have proceeded down a different route.
I won’t spend too much time discussing what others are doing, although, indeed, the content and, let’s say, utility of the document is important.
I am still unsure whether people (those who are unfamiliar) have a grasp of where I am heading, for illustrative purposes, see below to the document I have been using.
And, below that, another document called ‘respect’ which is an NHS acronym that stands for ‘Recommended Summary Plan for Emergency Care and Treatment’.
I am not trying to make a stance for which document is better – there are others out there, more, and apologies for the delay in getting to the point, I want to be clear about the purpose of my document.
What is it for?
Well, in many instances, it is important for people to know the details of your next of kin, your preferences for burial or cremation, likes or dislikes of various forms of belief; yet, this is very important. Indeed, there is a whole collective which relates to the concept of ‘What Matters To You’ – aka WMTY – that is, your preferences.
Again, this is a big area, and one I have covered before – see here.
I am quite blunt about the purpose of my document, really, who it is for and when it should be used.
I guess you would call me biased.
It is, essentially, to help people stay out of hospital if that is their preference. More specifically, for those who have a high risk of deterioration and for whom in the past, the best and worst of hospital care has been proven to be ineffective if not harmful, the option to stay away is right.
Covid has made all of this more relevant, given the numbers of people who have gone to hospital with one condition e.g. a fall, urine infection and left having recovered from the fall but acquired Covid.
These are not necessarily large numbers of people, although, during the height of the pandemic (unsure whether the height has passed or yet to come as of late June 2020), the fear/dread of hospitalisation was even more powerful.
Sure, admission to hospital, in certain conditions can be great. It can be life-saving, and life-changing, often for the better – the easiest example being, particularly in older people – those who fall and break their hip or neck of femur; without hospital admission most will never walk again or retain any form of independent living and majority will die as a result (often from pneumonia associated with immobility).
Over the years Orthopaedic surgeons have perfected the procedure to repair and replace broken hips and it is mostly performed with a minimum of complication.
From broken hip to fix in a week or two.
Please note, for the record, I don’t often praise Orthopods – this is a situation where they are great.
And yet, most older people, particularly those with either advanced frailty or dementia who are admitted to hospital don’t break their hips; they have a deterioration in mobility or worsening of confusion, possibly related to infection, at other times because of an arrival at various tipping-points.
In these situations, there is little an acute hospital can offer than cannot be provided differently in the community; GPs, district nurses, therapists and others can rally-round an individual and working collaboratively with social or domiciliary care overcome the incident, reverse the point of crisis and allow recovery.
Treatment and recovery in a patient’s own home tends to be quicker, preferred (by the patient), cheaper and more effective than admission to hospital and movement around hospital wards, interferences by multiple doctors, nurses and others, unnecessary and at times in appropriate treatments and investigations.
If this narrative has held together, my point is, we can offer just as good, if not better care, treatment and support for particularly older people in their own homes than is available through high-tech medical interventions.
You don’t need multiple blood tests or an MRI to support someone through a crisis at home; time, caring, compassion and being there is often enough.
And, where is all of this in relation to ACP?
Well, if you recall, at the start of this blog I mentioned our Conversation;
I went into this really thinking I knew what I was talking about (always dangerous) with the belief that my document (Minnie-mouse above) was what was needed.
I still think this and want it to be rolled-out more widely for those people, particularly care home residents or those with significant frailty living at home, yet, it became apparent that others, and some of them even had the word ‘ACP’ in their job title saw the document differently, proposing that it is focused far more widely – including those who are otherwise hale and hearty; more like an organ donor card than a do not attempt resuscitation document.
I do get this although my understanding of the system would suggest that if you want to have an effect, you need to focus your energy. That is, provide treatments or interventions to those most likely to benefit.
An example being those who fall.
It is generally accepted that on average people over the age of 70 will fall at least once a year.
Everyone will agree that falling is a bad thing and we should do all we can to reduce its likelihood.
There are different ways to reduce falling, for example, making sure your heels aren’t too high or rickety, ensuring the surface you walk on is even and the lighting adequate.
None of these are ‘care’ and don’t require investment from H&SC (beyond perhaps sorting uneven paving stones).
These interventions, if you want to call them that, may reduce falls on an individual basis, although there are many other factors involved.
Yet, on a population level i.e. of the 10 million people at risk of falling in the UK, the number who won’t break their hips as a consequence, the percentage (relative risk) reduction is quite small.
If however, you find those who are at highest risk of falling – over 85, five or more prescribed medicines, history of stroke, diabetes, dementia, arthritis and so on and, you further stratify by stating, those who have either broken a hip in the past or who have fallen in the past six months – those people are at very high risk.
Wearing pumps will help, but more needs to be done – multifactorial risk assessment and reduction programmes.
Sure, you fix the lighting; you also sort the drugs that make someone unsteady, you consider networks of activity and support, nutrition, hydration, continence and a host of other factors.
This is all time consuming and expensive; it does however significantly reduce the risk of a person who is already at high risk of falling, falling again and of course, breaking something with all that entails.
It is however my point.
My document is intended to focus on those at highest risk of unnecessary hospital admission and empower them and their families or carers; the other ACP document – more broader preferences for example are important, but likely to have little impact at three in the morning when a paramedic is deciding whether to take you to hospital (easier and less paperwork) or engage with the entire health and social care system (out of hours) which is likely to keep someone at home but is much more involved and risky (risk, for if the patient deteriorates in their home without adequate safeguards, the paramedic could be blamed, whereas, if the same happens in hospital, either the system is blamed or it is considered to be bad luck.)
And so, which ACP?
Well, I think, after all of this my conclusion is that we need both.
We need to know a patient’s preferences, likes and dislikes, these conversations are important – ideally with the patient when they are still able or adequately capacitated to tell you what they wish, yet, the other documents are also important, to prevent the system going into reflex and packaging an individual down an acute medical or surgical pathway that will provide them little comfort or overall benefit.
And, here too another component of the conversation which is worthwhile considering – the different system approaches to care;
I am what might be best described as a secondary care doctor (despite working half-time in primary care) – I support predominantly those who are sick, often in the last year or months of life; primary or community care doctors however are involved with a much broader spectrum of health and disease.
We need both.
Pretending that our patients are somehow different or our intentions at variance doesn’t serve anyone well.
And, the conversation continues.
I’ll post details of the next-one here;
As a network, we are running an event next month – see below for more details; you will need a computer/tablet/phone to attend.
The Yorkshire & Humber Dementia and OPMH Clinical Network will be running an online event focused on,
“Human Rights, Covid-19 and the new world – a focus on people affected by dementia and frailty” on Wednesday 15th July, 1-4pm.
To register for a place, please book here: https://rightscoviddementia.eventbrite.co.uk
Joining details and an agenda will be circulated to registered attendees in due course.