INTRODUCTION: “Sensitive to the faltering steps of age”
In what follows I will attempt to explore many of the issues around the experience of confusion in those people 65 years or older (most scientific journals refer to this age group as “elderly people”) admitted to acute hospitals. In the medical world this is now generally termed delirium. Delirium is an acute disorder of attention and cognition that is common, serious, costly, under-recognised, and often fatal. This is therefore a most serious matter. Yet the issues surrounding delirium are many and complex and far more difficult than this simple one word term may first suggest.
And slowly we go down. And slowly we go down.
And slowly we go up. And slowly we go up.
The faltering, unfaltering steps
With delirium, I think all involved would agree that we are at the starting steps of understanding. The title of this essay – The faltering, unfaltering steps – comes from a poem by Scotland’s Machar, Edwin Morgan. I deliberately chose this as the title as it occurred to me that it reminds us that scientific understanding generally comes in steps that may need to be climbed up or down, and generally many times, before the best understanding is reached. The title, for me also suggests that our “elderly” should not be collectively understood for their “faltering”.
Before I move on to explain today’s understandings and approaches to delirium, I should point out that apart from Edwin Morgan, I include one other Literary giant to highlight the not so simply medico-biological considerations that I would argue should be part of our understanding of delirium. That other writer is Gabriel García Márquez and the work of his that I will cite is ‘Love in the time of cholera’. Whilst I am not at all like the character Florentino Ariza in this novel, I do share his sensitivity.
I have separated what follows into three steps. Of course there are many more than three but I am trying to avoid faltering.
In the INTRODUCTION I will try to cover what is today meant by delirium and why this is a condition that vitally matters to us all.
- In the first section – “SIMPLY” COMPLEX – (the first step) I shall explore current approaches to delirium assessment.
- In the second section – THE ETHICAL MANAGEMENT OF FORGETFULNESS – I will outline what I think may be missing in current approach to delirium: namely considerations of consent and the determination to screen all those admitted to hospital who are 65 years or over.
- In the third section – WHAT IS REQUIRED NOW – (for now the last step) I borrow the words of Robert Francis QC to offer some personal considerations as to how we may further improve the assessment and care of those in hospital who may be confused and thus most vulnerable.
What is Delirium?
Delirium (sometimes called ‘acute confusional state’) is a common clinical syndrome characterised by disturbed consciousness, cognitive function or perception, which has an acute onset and fluctuating course. It is a serious condition that is associated with poor outcomes. However, it can be prevented and treated if dealt with urgently.5
Although a single factor can lead to delirium, usually delirium is multi-factorial in elderly people. The multi-factorial model of the cause of delirium has been well validated and widely accepted
Why focus on delirium? 
Older people and people with dementia, severe illness or injury such as a hip fracture are more at risk of delirium. The prevalence of delirium in people on medical wards in hospital is about 20% to 30%, and 10% to 50% of people having surgery develop delirium. Reporting of delirium is poor in the United Kingdom, indicating that awareness and reporting procedures need to be improved.
People who develop delirium may: need to stay longer in hospital or in critical care; have an increased incidence of dementia; have more hospital-acquired complications, such as falls and pressure sores; be more likely to need to be admitted to long-term care if they are in hospital; be more likely to die.
“Because patients discharged home from the emergency department with unidentified delirium have 6-month mortality rates almost 3-fold greater than their counterparts in whom delirium is detected, unrecognized delirium in the acute care setting presents a major health challenge to older adults.”
Delirium and Improvement work (in Scotland)
In 2011, the Cabinet Secretary for Health and Wellbeing announced that Healthcare Improvement Scotland would carry out a programme of inspections to provide assurance that the care of older people in acute hospitals is of a high standard. In launching the programme of work, the Cabinet Secretary said:
“Quality, compassionate care for older people that protects their dignity and independence, is one of the most sacred duties of any civilised society. It is something I believe we generally do well – but that is not good enough. We must do it well for every older person on every occasion, in care homes and in hospitals.”
Inspections began early in 2012 and by the end of this month (March 2014) Healthcare Improvement Scotland will have carried out 18 announced and 6 unannounced inspections. Healthcare Improvement Scotland was asked to carry out these inspections because of its experience inspecting acute hospitals throughout NHS Scotland. The aim of these inspections was to provide assurance that the care of older people in acute hospitals was of a high standard and to encourage improvement where it was needed. The Inspection process (see later) includes a number of equally important areas, but for the purpose of this paper, I am concentrating on the following:
- that the Inspection process would “put the patient first” and would “focus on ensuring older people are treated with the respect, compassion, dignity and care that they deserve”
- dementia and cognitive impairment
Healthcare Improvement Scotland states explicitly that as an NHS organisation that it is committed to equality:” We have assessed the inspection function for likely impact on equality protected characteristics as defined by age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex, and sexual orientation (Equality Act 2010).”
As Professor Alistair MacLullich has described, for delirium we have all struggled with what he terms “terminological chaos” in that we have, across the United Kingdom, and indeed world-wide, many clinical expressions used as alternative ways of recording delirium (see table 1 below). Professor MacLullich is absolutely correct that this condition is “ill-defined” and that this is “confusing.” Across Europe and the United States of America, consensus has grown that such a range of terminologies is not helpful and thus why Professor MacLullich has suggested most strongly that it is “best to use the term delirium” 
|“acute confusional state”||“toxic psychosis”|
|“a bit muddled”||“acute brain failure”|
|“acute confusion”||“ICU psychosis”|
|“not themselves today”||“Organic brain syndrome”|
|“confusion”||“a bit knocked off”|
|“post-operative psychosis”||“cerebral insufficiency’“|
|“metabolic encephalopathy”||“acute befuddlement”|
|“non-compliance with examination”||“poor historian”|
In Love in the time of cholera, Lorenzo Daza, states that “the only thing worse than bad health is a bad name.” I have to admit that I am not sure what the best term is for acute confusion, perhaps because it is such a complex and variable condition. I do though agree that we need to avoid loose language regarding a most serious condition/state of being.
In Love in the time of cholera the word delirium is used in a context entirely outwith the medical frame: “delirious with joy” p69; “delirious with hope”; p104; “deliriums of passion” p298. I am fully of the appreciation that medical delirium is a very serious state that can cause much suffering. It can often contribute to death. I raise other contextual and cultural understandings of the word delirium to remind us that this is a wide-ranging mental state (for all its seriousness) that we have struggled to define. It is important to remember that delirium, even in its medical form, is a clinical presentation with a multiplicity of potential causes, not a disease in its own right. The high mortality associated with delirium is a consequence of multiple factors including both ageing and disease.
The use of the words delirium throughout Love in the time of cholera no doubt reflects an underlying theme that the novel explores: that emotion, circumstances, life factors in a diverse yet individual way can mimic a medical condition in their presentation. In the case of this book, that emotion was of course the pain and the confusion of love that Florentino Ariza had for Fermina Daza.
“. . . and his mother was terrified because his condition did not resemble the turmoil of love so much as the devastation of cholera”1
(a) The tools of their tools
The title of this section is from a quotation by the writer and philosopher Henry David Thorea who suggested that “Men have become the tools of their tools.”
As a practising NHS psychiatrist for older adults I use rating scales every working day and I generally find them a useful way of contributing to my overall approach which seeks to be as holistic as possible. However, in using rating scales I have come to the scientific and philosophical conclusion that rating scales have limitations and that some rating scales are more scientifically valid than others.
In this section (part a) I shall briefly explore rating scales for delirium as currently being recommended in delirium assessments in Scotland’s acute hospitals. In the section that follows (part b) I shall then consider the current policy that makes use of these tests for mandatory screening of every adult 65 years and over to NHS acute care.
The 4AT test is a “new screening tool for delirium and cognitive impairment”, authored by Prof Alasdair MacLullich, Dr Tracy Ryan and Dr Helen Cash of the University of Edinburgh and NHS Lothian. This test incorporates the AMT4, “a validated very brief screening tool for general cognitive impairment.” The 4AT test benefits from (1) “brevity” (the authors state that it takes less than 2 minutes to complete), and (2) “that no special training required” and finally (3) that it “incorporates general cognitive screening”.
[Update, December 2014, the 4AT website now confirms this "screening tool" is now "validated"]
I remain uncertain whether the aim of this test is the detection of delirium, or of cognitive impairment.
At the end of last year, one of the nurses in the community team of which I am a part handed over to me the Journal of Mental Health Nursing and suggested that I read an article by Grant King who is a lecturer in mental health nursing with the University of Dundee. In this paper Grant King described a personal experience which made him consider a professional situation in a new way. In Grant’s paper he described his experience of writing about the MMSE (a rating scale of cognitive function that is now copyright) as an undergraduate student and then witnessing his father being tested with this by a healthcare worker (in this case a doctor)
Grant King begins his paper thus:
“An axe can be a wonderful tool. It can be used for many activities but is probably best known through history and across the globe as a tool for felling trees and chopping wood. The wood, in turn, can be used to sustain life with a hearty fire providing essential heat and light.”
“Indeed, an axe can be a wonderful tool. An axe can also be a terrible weapon.”
The paper then goes on to give the narrative of his father’s experience of being tested with the MMSE and the thoughts and emotions that this stirred in his father and for Grant. At the end of this real-world account, Grant confirmed “Though it may not seem like it, I have no issue with the use and utility of the Mini Mental State Examination.”
Grant then confirmed what he was really trying to get across:
“I just want to publicly remember that these clinical tools, as ‘useful’ as they may be ‘to better inform care planning’ are potentially so powerful in changing lives and families that the hands that handle their haft need to be well trained and skilled in their wielding.”
Grant’s experience of his father being tested with the MMSE, left him reflectively wondering:
- “Do we ever really take enough time to genuinely reflect on the potential ramifications of even supposedly routine tests upon our clients and their families?”
- “Can we fully appreciate the widest impact of our interventions until we encounter them at close proximity from the other side?”
- As mental health nurses let us be mindful of the power in our hands, and the sensitivity and compassion required, as we wield the tools of our trade.”
The following words are those of Consultant Geriatrician, Dr Graham Ellis, who is working with Healthcare Improvement Scotland on improving care in acute hospitals (here he is talking about the “frailty triage screening tool”) but the words seem to be equally applicable to the other flagship improvement, mandatory cognitive screening for all those 65 or over who enter acute hospitals in Scotland:
“The sooner we are able to identify at the front door of the hospital at the very point that they arrive at the hospital we need some simple measure, some simple tool that identifies that this patient needs to be handled differently. . . the whole drive of the improvement work is to identify a simple way, a simple tool something that will capture that as early as possible and as consistently as possible”
It occurs to me, and I will return to this in more detail later, that this is a big ask of a “simple” tool that is to “screen” and then “triage” our older generation. The risk is that time-honoured holistic nursing and medical assessments are replaced by brief “screening tools” and that, as a consequence, “treating people with dignity and respect” may actually be less likely to happen for our elders at a time of great vulnerability.
(b) On the edge
I sometimes wonder, and I speak here most generally, that our respected elders, the older generations of society, are left on the edge of involvement in decisions that will affect them and that are being determined by policy makers who tend to be in the middle period of their life. In establishing policies that will affect our elders we need to remember that they have experience that we, the policy makers, do not have.
In the NHS area that I work the local policy for screening for delirium is that it is currently “mandatory” for all those 65 years and over admitted to the acute hospital to be screened with the AMT4 test and/or CAM test.
Healthcare Improvement Scotland has recently published Identification and Immediate Management of Delirium, version 2. As I am not involved with this improvement work, I have been faltering in my understanding of this initiative. I am not clear on at least the following questions: which age ranges are these interventions aimed at and are they for testing or national implementation?
However we can be absolutely clear what Healthcare Improvement Scotland has recommended to specific NHS Boards following inspection visits to their acute hospitals:
For Raigmore Hospital, Inverness:
“We found that further improvement is required in the following areas. There is no routine screening for cognitive impairment taking place when older patients are admitted to hospital.”
For St John’s Hospital, Livingston:
“We found that further improvement is required in the following areas. Screening for cognitive impairment was not routinely carried out in patients over 65 years when they were admitted to hospital.”
I was made aware of the report of Healthcare Improvement Scotland’s Inspection of Forth Valley Royal Hospital (FVRH) by reading the positive comments by Professor Angela Wallace, Director of Nursing, NHS Forth Valley:
“We welcome this report which highlights many areas of good practice in the acute hospital care provided to older people in NHS Forth Valley.
It recognises our commitment to maintain the dignity of patients and ensure they are cared for with compassion and respect. Inspectors also commented on the warm, caring and meaningful way which our staff interact with patients and the strong leadership provided by senior nurses in our wards.
Independent feedback from patients about the care and help they received while in hospital was also very positive.
Work is already underway to address the report recommendations and we expect these to be completed within the next few months.”
“It was most encouraging to see the areas of strength as noted by your inspection team when visiting NHS Forth Valley in relation to the care provided to older people in acute hospitals. It was especially welcome to note that the inspection team found ‘warm, caring and meaningful interactions between staff and patients.’”
In my letter to Healthcare Improvement Scotland I also shared the basis of my concern:
“In your summary of your visit Healthcare Improvement Scotland recommended that further improvement was required in ‘screening for cognitive impairment’ that ‘was not consistently carried out in patients over 65 years when admitted to hospital’.”
My letter continued:
“As a Consultant in Old Age Psychiatry I have always believed that our elderly are particularly vulnerable in hospital and that impaired cognition can add to this. The approach to this matter is important and should, I would argue, follow the principles of good medical and nursing practice which has a fundamental basis in holistic assessment. Isolated ‘screening tests’ such as the mandatory use of the AMT4 test for all those 65 or over in Forth Valley Royal Hospital take away from holistic professionalism and risk creating an artificial assessment that does not reflect the true overall presentation.”
“If we are talking about ‘screening tests’ it is important we follow the systematic evidence-base and ethical analysis of the impact of isolated tests. As far as I know has no such meta-analysis evidence basis and what little research has been done on this test shows it lacks in both specificity and sensitivity. This is actually true for a number of the tests currently being recommended in a pathway by the Scottish Delirium Association and I strongly believe that they should not be used in isolation.”
“I am reminded of the recent controversy over the Liverpool Care Pathway. No one had any argument with the aims behind this, nor the elements within it. However, when it was applied inappropriately on a background of inadequate training and understanding, and with poor communication with families, patients undoubtedly suffered. This is why I believe a professional holistic assessment is so important.”
I concluded my letter to Healthcare Improvement Scotland asking if they might give some consideration and comments of the points that I had raised.
I later phoned them and had a phone discussion with Ian Smith, Senior Inspector. Following our conversation, I asked Ian Smith if could confirm what we had shared in our discussion in writing:
“Our discussion regarding the use of screening/assessment for cognitive impairment was an interesting one, however, as we discussed we are very much guided by the Older People in Acute Care Standards (2002), which state that those patients over 65 years should be screened for cognitive impairment.”
Ian Smith, Senior Inspector, went on to confirm that he was “not qualified to be able to comment on the merits of cognitive screening and evidence surrounding it. As such, I have copied this letter to Healthcare Improvement Scotland’s Medical Director, Dr Brian Robson who might be better able to discuss these issues with you.”
Following this a teleconference was arranged between myself and three staff of Healthcare Improvement Scotland, including Dr Brian Robson. It was clear to me from the outset that my genuine questions about the evidence behind the improvement work led by Healthcare Improvement Scotland were not welcome. It appeared that the “Inspectors” did themselves not like any scrutiny of their national recommendations for acute care of our elders. Dr Robson sent a letter that followed up the teleconference:
“Inspection of Older People’s service and use of ‘Screening Tools’
The Clinical Standards for Older People in Acute Care (2002) are the extant standards and are the basis of our current inspection process. These standards are scheduled to be reviewed in 2014. Within that review there will be consideration of the evidence base for assessing patients for cognitive impairment and indeed the evidence base and best practice around ‘screening tools’ if that is relevant.”
I replied to this letter, as follows:
“I am writing to re-confirm that my view is that mandatory cognitive screening for those 65 or over has neither a scientific nor ethical basis (whatever the setting of such screening). I am fully aware that HIS follow the Guidance of the 2002 Care Standards.”
Here is Dr Robson’s letter to my former employers and my response. It is more than disappointing that in raising ethical questions I was so terribly mischaracterised to my employers by Dr Brian Robson, the Executive Clinical Director for Healthcare Improvement Scotland. This letter has caused lasting damage to my career.
As Dr Robson confirmed, the Clinical Standards for Older People in Acute Care were published in 2002 and are now 12 years old. These standards were enshrined with the following principles
• are evidence-based and have been developed and finalised in consultation with many people across Scotland
• regularly reviewed and revised to make sure they remain relevant and up-to-date.
These standards also confirmed an “overarching principle that there should be no discrimination on the basis of age, but that specific needs at different stages of life need to be recognised” and went on to state that “for this reason, they did not seek to identify a specific age group, but instead emphasises the need for appropriate and individual multidisciplinary assessment and care.”
On the homepage film for Healthcare Improvement Scotland, Brian Robson states:
“Healthcare Improvement Scotland works with clinicians who are working with patients every single day. What we do is help those clinicians work with us across all areas …. Such as working on our improvement work in hospitals. It’s about making sure clinicians are involved across the full range of activities of Healthcare Improvement Scotland”
“We’ve been listening to the voices of clinicians and healthcare professionals like you. We understand that you want to be at the very heart of healthcare improvement and not at the edges.”
In his letter to me Dr Robson, Executive Clinical Director for Healthcare Improvement Scotland stated: “You set out your enthusiasm to be personally involved in the design and governance of the national programme and referenced our commitment in our Clinical Engagement Strategy to involve clinicians in our work. I attempted to emphasise that this commitment does not confer an individual’s ‘right’ to be included in such groups.” He referred me back to local mechanisms of engagement.
The Francis Enquiry concluded that NHS culture was struggling to allow voices of concern to come forward and that improvement culture needs to take great care not to exclude or isolate staff or voices who express concerns about patient care. The Medical Director for NHS Forth Valley, Dr Peter Murdoch has undertaken consultations across the organisation in reviewing the Francis Enquiry Report and came to the conclusion that “local context and action was essential” but that NHS Forth Valley “were already beginning to see things changing.”
(click anywhere on the picture above to play film)
Just last week, NHS Forth Valley had a “Delirium and Dementia Study Day” with involvement from Healthcare Improvement Scotland amongst others. Unfortunately I had not been personally made aware of, or invited to, this Study Day. I expressed my disappointment as this had not been the first instance of such “forgetfulness” on the part of the organisers. I was not alone in not being informed about this “study day”. Dr Vivek Pattan, the Clinical lead for Older Adult Psychiatry, NHS Forth Valley, also expressed concern in writing that he had not been made aware of this “study day”.
Healthcare Improvement Scotland has a rhetoric of engagement but this has not been my experience. I wrote to the Cabinet Secretary for Health and Wellbeing about this and the short reply, on his behalf, was as follows:
“Mr Neil is aware that you have also raised these issues directly with Healthcare Improvement Scotland and thanks you for your continued interest in these matters.”
SECTION 2: “The ethical management of forgetfulness”
“Obtaining consent should be an ethical duty first and foremost, one central to respecting the autonomy and dignity of patients”
Informed consent is crucial for patients but it is not truly informed unless they are given full, reliable, evidence based information about the treatment alternatives and the likely benefits, harms, and uncertainties of each of these. Obviously, in the case of cognitive screening there are potential difficulties here in that a patient’s capacity to consent may be impaired.
It is my view that ethically we have a duty to respect individual autonomy, and no screening, even for cognitive impairment, should over-ride this human right. Even in our belief in a procedure’s value, or out of a concern not to worry the patient unduly, we cannot side-step asking for consent.
The issue for us—the crucial one around older people, in particular—is the culture of care.” Dr Denise Coia
Availability of time in casualty departments for example may be another barrier to seeking consent for testing. “Hurry is the devil,” wrote William Osler. In my biased view rushing consent (or establishing that consent may not be possible) should be avoided in the same way that a medical procedure should not be rushed. On this, Leon Eisenberg has offered his thoughts:
“… we can change this mindset and view obtaining consent as an ethical duty first and foremost, one that is central to respecting the autonomy and dignity of patients, then we will have taken a major step .… we must take the time to demonstrate to our students how the information the patient needs to have can be presented clearly and more than once, in order that the doctor can support the patient’s right to choose among alternatives.” Leon Eisenberg
When Healthcare Improvement Scotland gave evidence to the Health Committee last winter, Drew Smith (Glasgow) (Lab) opened with the comment below. Respect and dignity can be considered in so many ways, but here I wonder if Drew Smith is expressing, what sometimes seems to me as the prevailing view, that cognitive testing is a necessary requirement for both respect and dignity:
“When HIS was in Glasgow last year and examined Glasgow royal infirmary, its report said that there was a consistent failure to respect the dignity of older people. Two examples of that are the failure to assess for cognitive impairment and dementia, and specific instances of, for example, people being showered in cubicles without screens, which I think Dr Coia would describe as being ‘unforgivable’ or ‘unacceptable’.”
Here is a different take on this:
“It confuses me why signed consent for minor surgical interventions yet often not for things with devastating consequences”
The NICE guideline on Delirium starts with person-centred care
“Treatment and care should take into account people’s needs and preferences. People with delirium or at risk of delirium should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. If patients do not have the capacity to make decisions, healthcare professionals should follow the relevant national guidance on this”
Screening is a process of identifying apparently healthy people who may be at increased risk of a disease or a condition. Many screening programmes aim to reduce death from a disease by early detection. Screening has important ethical differences from clinical practice as it targets apparently healthy people. However, there are risks involved and screening cannot guarantee protection against a disease or condition. In any screening programme, there are false negatives (wrongly reported as not having the condition) and false positive results (wrongly reported as having the condition.)
“Screening assessment tool: The examination of people without symptoms to detect unsuspected disease or problems.”
In the 2002 Care Standards, upon which Healthcare Improvement Scotland base their inspection visits, in section 2a, it states that for “older people being treated in A&E or admitted – even briefly – for care are assessed for cognitive impairment, functional problems and existing home support” and that it is “essential” that a “brief screening assessment tool is in use and documents cognition.” It also states, in Standard 8 “that all patients are enabled to be partners in making decisions about their own care and the extent of patient involvement in making decisions about their care is regularly and systematically monitored to ensure its effectiveness”
Healthcare Improvement Scotland have confirmed that the approach that they take to screening, follows, in addition the 2002 Care Standards “we will develop national standards and/or indicators for NHSScotland that reflect UK National Screening Committee standards for new and existing programmes.”
I have had previous, most helpful discussions with the UK National Screening Committee (UKNSC) regarding the Dementia DES in NHS England. I therefore wrote to Dr Hugh Davis to ask about their involvement with Healthcare Improvement Scotland:
“Thanks for your enquiry regarding Healthcare Improvement Scotland’s planning to undertake cognitive screening. I must admit I haven’t heard of such a plan for screening up in Scotland. I wonder if you have any documents or resources that you could send or point me in the direction of that detail Healthcare Improvement Scotland’s plans so that I can understand more about the exact nature of what they’re planning on introducing?”
The current position based on Inspection visits to nearly all Scotland’s Acute Hospitals, is reflected in this recent minute by Healthcare Improvement Scotland “In five hospitals inspected, we found that older people were not always being screened for cognitive impairment on admission to hospital. In the sixth hospital, where we carried out a follow-up inspection, we identified an improvement in the number of patients being screened for cognitive impairment.”
It is important to note here that the NICE Guideline on Delirium (there is no SIGN Guideline equivalent) does NOT advocate screening. In fact the word screening never appears once in the whole document.
“Healthcare Improvement Scotland have greatly accelerated the process through encouraging the use of standardised measures such as the 4AT and I think very importantly they are engaging with various health boards and practitioners to see which methods work so this is an evolving process. The fact is that even though we have had a lot of tools available for delirium detection it hasn’t really been implemented anywhere in the world until very recently. The crucial difference is that we are engaging with clinicians and practitioners in their organisations the best way of dealing with this.”
“…. the product of the collaboration between the SDA and other interested clinicians and HIS and we are now seeing the results in terms of very positive reactions from all the different test sites from the clinicians who are using the tools right the way up to the Chief Executives.”
The 4AT test is “a new screening tool for delirium and cognitive impairment” and can be “administered by any healthcare professional without the need for training.”
 AMT4 – Age, date of birth, place (name of the hospital or building), current year.
 ATTENTION – Ask the patient: “Please tell me the months of the year in backwards order, starting at December.”
 ACUTE CHANGE OR FLUCTUATING COURSE
Professor Emma Reynish, Chair of the British Geriatrics Society Dementia and Similar Disorders, advocates mandatory cognitive screening “It is vital that all older people admitted to hospital receive an assessment of their memory function as part of a holistic evaluation of their needs so that they can be managed and treated appropriately. Professor Reynish also states that “Assessment [with screening tools such as the 4AT] also leads to the identification of people with dementia. This is an essential part of how we can improve dementia diagnosis rates.” 
“Furthermore, assessment of memory identifies all individuals with cognitive impairment (whether this is delirium, known dementia, or symptoms of dementia but no diagnosis) so that individual care plans in acute hospitals can be designed to meet people’s specific needs. This leads to better communication, nutrition and orientation and makes it easier for health professionals to work in partnership with a patient’s caregivers.”56
John Sawkins, wrote to me with important thoughts that Professor Reynish has not considered:
“As a concerned citizen who reached the age of 65 in September 2013, I must confess that I am alarmed by the decision to routinely screen all those aged 65 and above for cognitive impairment and delirium. How much distress and fear do you think this engenders in a section of the population already wary of the euthanasia agenda, as well as the widely publicised abuses of the ‘Liverpool Care Pathway’? How on Earth can this approach fit in with the maxim, ‘Nothing about me without me’?”
John Sawkins continued: “The A4T test, freely downloadable and available to be administered by virtually any professional could have serious unintended consequences for the patient upon whom it is used: the surrender of one’s driving licence, for a start. But, as I clearly observed at a recent gathering to look at the impact of welfare changes on services, despite advocating partnership working and consultation with the service-user, professionals still retain the view that they, and they alone, know what is in the best interests of the patient.”
Professor MacLullich confirms that the 4AT screening tool he developed is a “screening instrument designed for rapid and sensitive initial assessment of cognitive impairment and delirium.” This being one of the tools advocated for “routine” screening in all Scottish Acute Hospitals by Healthcare Improvement Scotland. Yet the Clinical Executive Director for Healthcare Improvement Scotland stated in his letter to me that improvement work was based on “early identification and appropriate management of delirium. It is not focussed on the diagnosis of dementia.” As a result of one of the recent pilots in an Orthopaedic ward, one of the recommendations being made is that given “challenges with CAM” that screening should “move to the 4AT”
Professor Maclullich asked me in March of 2014 if I might be able to summarise my considerations on Delirium Screening. I thus prepared this short summary for Professor MacLullich. No reply has yet been forthcoming.
Ultimately the LaMantia meta-analysis concludes that the best approach, based on current evidence, is that “patients who are at high risk of poor outcomes from the sequelae of delirium should be targeted for study within research” This is the same conclusion as in the NICE Guidelines on delirium and quite different from the “routine” screening that is a key part of the Healthcare Improvement Scotland recommendations.
The Scottish Delirium Association was formed in 2012. It is formed by a group of healthcare workers, all practising doctors, nurses and allied healthy professionals in care for the elderly.
The Scottish Delirium Association have developed two pathways for delirium;
(1) the Delirium Management Summary Pathway, and
(2) the Comprehensive Delirium Pathway.
These pathways aim to address the lack of understanding on severity delirium, the variability in approach to clinical management, the Low rates of detection and the adverse outcomes of delirium. These are goals that we would all surely support. However I am less confident than the Scottish Delirium Association that we have sufficient evidence that these “pathways improves all” these vital areas.And we certainly do not know if there may be unintended consequences of pathways that ignore consent and that place reductionist screening tests before any time-honoured nursing and medical assessment or even assessment of risk. With any screening test there is risk of false-positive and false-negative results.
A recent view expressed on social media: “Mandatory scares me, especially when the quality of that screening could be very questionable.”
Whilst Healthcare Improvement Scotland have not waited for fully validated and ethically considered studies to implement mandatory cognitive screening, those 65 and over will have to wait as Healthcare Improvement Scotland have confirmed that “our revised inspection methodology is due to be published shortly.”
With cognitive screening we are very much dealing with the person, sentience, being and who we are. This, in my view cannot be considered as the equivalent of measurement by “routine” examinations such as taking pulse or blood-pressure. Though even for these we should, in my opinion, be seeking consent and not simply taking “assent” as granted.
To conclude, I would prefer that cognitive testing is not mandatory and used when there is clinical suspicion of delirium following a careful and holistic assessment by healthcare staff trained in medicine for the elderly.
I am not alone in this view. Here is what Dr Iona Heath suggests:
“Once again let’s go for civil disobedience – I shall refuse to be screened!!”
SECTION 3: “What is required now”
Robert Francis QC, when addressing the summary conclusions of his report on the failings of Mid-Staffordshre NHS Foundation Trust, began “what is required now.” In this concluding section I will offer some considerations on practical and ethical ways forward in seeking to improve the holistic approach to the care of our elders more generally.
(a) Hole Ousia
As a writer I have collected my thoughts here in my “blog” called Hole Ousia. This Ancient Greek expression translates approximately as “whole being”. My view is that at the heart of a liberal education is the notion that human beings need to return to science that is broad in its inclusion: this is an idea which ought to unite scientists, literary intellectuals and artists alike.
Healthcare Improvement Scotland is a developing organisation that has well-intentioned aims. Aims that they could surely only be welcomed by us all. However as an organisation it faces being responsible for high national ideals. This is why the Executive Clinical Director is rightly so passionate about seeking wider engagement with healthcare staff (and I hope also) patients.
This is described by Dr Brian Robson Executive Clinical Director of Healthcare Improvement Scotland when giving evidence to the Scottish Parliament last year:
“We have a small core clinical team in the organisation with a chief pharmacist, a chief nurse, midwife and allied health professional and a consultant in public health medicine and me. Our engagement strategy means that we bring in national clinical leads from the service experts in their field to work with us. At any one time, 20 or 30 of those will be working with us each session to help us to support our improvement programmes. Beyond that, we have access to thousands of clinical staff across the NHS in Scotland and the United Kingdom as well as internationally, to help us with our work. We do not have a large employed clinical staff, but clinical staff and clinical assurance run across all the programmes.”
Robbie Pearson Director of Scrutiny and Assurance, continued for Healthcare Improvement Scotland:
“However, what is fundamental is not the raw numbers but the skills, experience, capability and competence that we bring to our inspection work. Again, that emphasises the importance of the additional expertise that we may bring in from the service. As Dr Robson mentioned earlier in the context of our clinical engagement strategy, we need to consider how we can use the breadth of experience, skills and expertise that are out there to support us in our work as a relatively small organisation.”
You will recall that we have been told that the improvement work undertaken by Healthcare Improvement Scotland, followed the guidance of the 2002 Clinical Standards for Acute Care.
It is interesting then, at Parliament last year, Ian Smith, Senior Inspector, Healthcare Improvement Scotland, stated that “for the inspections of acute care services for older people, we had no baseline from which to work because the inspections were new.”
Duncan McNeil (Lab) the Convener of the Parliamentary Health Committee followed up this statement by Senior Inspector Ian Smith and asked Healthcare Improvement Scotland:
“I understand that a review of the methodology of inspections is going on. When the committee reported on its inquiry into regulation of care of older people, we recommended that there be a review of the national care standards for older people, which were then 10 years old. How is that review progressing and what is your role in it? When can we expect to see the fruits of your work and that of the Scottish Government, which accepted our recommendation?”
Dr Coia, Chair of Healthcare Improvement Scotland, offered a lengthy, detailed and obtuse response,
…the Convener, remaining uncertain, asked again: “has the review process begun formally?”
Dr Coia replied “it has not yet begun.”
This parliamentary committee met last year, and since then a review, chaired by Pam Whittle, CBE, has been published. This report is entitled National standards, guidance and best practice. As used as basis for Inspections and it was published in November 2013. 
The Whittle Report sets out that “the following national standards, guidance and best practice are used to underpin the inspection of the care provided to older people in acute care.” This includes 10 separate guidance documents (see table 2).
I have read carefully the Whittle Report and I think it is important to confirm what this report does not actually make clear. This being that there has yet been no further update on the 2002 Clinical Standards for Older People in Acute Care which still form the basis for the national standards for inspection of acute care for older adults in Scotland.
It is worth noting that the Whittle Report does not mention NICE Clinical Guideline 103: Delirium. It should also be noted that the Whittle Report confirms that SIGN Guideline 86 – Management of Patients with Dementia is one of the guidelines it follows. This guideline, by SIGN’s own timetable, is now six years out of date and has recently been rated in a meta-analysis of 12 National Guidelines on dementia as the second poorest in terms of ethical considerations. I published on-line in the BMJ a letter where I considered the possible reasons why ethical matters were generally not part of SIGN guidelines on dementia: “this appears to confirm an imbalance between the consideration of bio-medical aspects of dementia and those which focus on more general aspects of care. Just because the latter are harder to measure does not make them any less important.”
Table 2; The Whittle recommendations are “underpinned” by the following:
- Adults with Incapacity (Scotland) Act 2000 Part 5 – Medical treatment and research
- Best Practice Statement for Prevention and Management of Pressure Ulcers (NHS Quality Improvement Scotland, March 2009)
- Clinical Standards for Food, Fluid and Nutritional Care in Hospitals (NHS Quality Improvement Scotland, September 2003)
- Dementia: decisions for dignity (Mental Welfare Commission, March 2011)
- Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) Integrated Adult Policy – Decision Making and Communication (Scottish Government, May 2010)
- Health Department Letter (HDL) (2007)13: Delivery Framework for Adult Rehabilitation – Prevention of Falls in Older People (Scottish Executive, February 2007)
- National Standards for Clinical Governance and Risk Management (NHS Quality Improvement Scotland, October 2005)
- Scottish Intercollegiate Guideline Network (SIGN) Guideline 86 – Management of Patients with Dementia (SIGN, February 2006)
- SIGN Guideline 111 – Management of Hip Fracture in Older People (SIGN, June 2009)
- Standards of Care for Dementia in Scotland (Scottish Government, June 2011)
As confirmed already the Clinical Standards for Acute Care are now twelve years old despite the enshrined promise that they would be “regularly reviewed and revised to make sure they remain relevant and up-to-date.”
I am also of the understanding that these 12 year old Clinical Standards were not as broadly inclusive as is suggested: “have been developed and finalised in consultation with many people across Scotland.”
The membership of the Older People in Acute Care Project Group, the group that determined the final Clinical Standards for Acute Care had only one patient representative, no consultant in psychiatry, no academic neuroscientist, no clinical ethicist, no involvement with medical humanities, no carers, NO older adult!
Critical thinking that may at sometime involve most of our elders requires width rather than narrowness. Here I must be severely critical.
My concern, exemplified in this piece of writing about delirium experienced in acute care is that that “improvement” and “assessment” are being undertaken by the same organisational body.
Let me summarise this as best I can: Healthcare Improvement Scotland comes along to you as a clinician and tells you that they are “testing” intervention X which, they tell you, they think is going to improve patient care. They then come back to assess how well you are doing this. Are you going to risk failing your assessment by telling them that intervention X is poor?
The risk here is of self-fulfilling prophecies.
Robbie Pearson, Director of Scrutiny and Assurance, continued for Healthcare Improvement Scotland, confirmed this with the Scottish Parliament:
“The crucial thing is that the NHS board owns and values the inspection improvement plans and that the NHS board demonstrates, within the board’s governance system, that it is making progress.”44 Mr Pearson then goes on to confirm that Healthcare Improvement Scotland “are not a regulatory body with enforcement powers, but we have significant powers under the Public Services Reform (Scotland) Act 2010 that allow us to carry out our duties.”44
Dr Denise Coia, Chair of Healthcare Improvement Scotland, was equally clear on this:
“… what is important is not only the reaction of health boards to our findings but what they do about them. Our organisation is unique in that no other—apart from one, I think, in the Netherlands—provides both a scrutiny and an improvement function”44
Dr Coia also outlines the vital need for NHS Health Boards to demonstrate that they have acted on the recommendations made by Healthcare Improvement Scotland following inspections of acute services for older people:
“We can also refer beyond that to the Scottish Government’s performance management unit and to the director-general in our sponsor division in the Scottish Government. From there, the issue can be escalated up to a minister, so there are ultimate sanctions. Scotland is a very small country and you can go up that ladder fairly quickly if you need to.”
This is why the basis of inspections needs to be evidenced-based, ethically considered and more broadly inclusive. Without such, despite the intention, person-centred care, respect and dignity for the individual in hospital may not have been properly considered.
Healthcare Improvement Scotland, an organisation that is in its infancy, it is entirely understandable why it cannot cover all matters of healthcare from community to hospital (or vice-versa). The risk however is that improvement work focuses on specific areas and that these lose sight of necessary hole-ousia (the wider journey and the real life and circumstances of the unwell person).
In trying to provide the most holistic understanding and care perhaps we may always falter but we should be aware of our falterings and never give up on this.
In evidence to the Scottish Parliament, Healthcare Improvement Scotland was asked by the Health Committee about their role in community services and how this informed approaches to acute care recommendations. Dr Denise Coia, Chair of Healthcare Improvement Scotland, stated that
“…. when pathways of care get blocked because there are not enough community services and we find that acute hospitals are managing patients who would probably be more appropriately managed in the community, we might say that the care is inappropriate at that point and we need to do something about it …”44
One member of the Health Committee, Gil Paterson, SNP, asked more about this:
“If, in your expert opinion, some of what is going wrong may be due to funding and may be causing a lack of resource at the coalface, would you put that in your report? Would that see the light of day? Would it get into the public domain in some way if you thought that that was genuinely a problem, as with Southern Cross? Would we get to know about such issues through your work?”
Robbie Pearson, Director of Scrutiny and Assurance, answered this on behalf of Healthcare Improvement Scotland stating that “I do not believe that that is our role”
The Deputy Convener of the Health Committee, Bob Doris, SNP then commented “Do you have to wait for the integration of health and social care bill to do that?”
Considering time-honoured holistic assessment, Bob Doris, Deputy Convener, went on to ask another most important question: “Is any assessment done of older people’s general mental health?”
Dr Coia answered on behalf of Healthcare Improvement Scotland. It is a reply, I must be honest, that has caused me concern:
“I will answer that because I am a psychiatrist by background. We talk about “dementia and cognitive impairment” because many older people who are depressed do not require a full mental health assessment, but they become cognitively impaired as a result of their depression, so that is a good proxy indicator. That is why, when we were thinking about the inspection of older people’s care, I was keen that we looked at not only dementia but cognitive impairment, because that is a good proxy measure of what is going wrong with an older person’s mental health. We do not do a full mental health assessment as such, but picking up on cognitive impairment begins to get us into the area that you talked about.”
Following this logic, our elders are being understood in a more “holistic” way, in terms of who they are, how they feel and their unique individual circumstances and life-stories (most commonly) by a 4-item screening test, that is “routine” recommendation for “improvement” that asks: your name, age, where you are and the current year?
I would ask that Healthcare Improvement Scotland think again about this. I say this as NHS Boards will not do so.
They will understandably follow all the recommendations. Whilst our elders, on the specifics of such improvement work, appear to have no voice, either individually or collectively. This can hardly be reasoned as respectful, dignified or plain-simply “patient-centred”
It occurs to me that there are parallels with the improvement work in delirium with the recent drive in policy for early diagnosis of dementia.
Dr Leon Eisenberg has written about this in less faltering way than I can:
“I have elsewhere proposed the usefulness of distinguishing between “disease” and “illness,” terms employed synonymously in ordinary usage. Physicians are taught to conceptualize diseases as abnormalities in the structure and function of body organs and tissues. However, patients suffer illnesses; that is, experiences of disvalued changes in states of being and in social function.”45
We can, and should continue such improvement work, but I would argue that we must be mindful that we collectively have an ethical duty first and foremost, one that is central to respecting the autonomy and dignity of patients. The King’s Fund has just this week published a report that concludes that the way that the United Kingdom manages its ageing population needs to “change radically so that care is coordinated around all of a person’s needs rather than being based on single diseases.”
(b) “Infusion of worldwide teas”
This piece of writing is nearly at an end. I realise that much has been covered in a most complicated narrative.
I do not know about you but I have generally found that life is like that.
This short closing section has taken as a title a few words from Love in the time of Cholera. I have read this book several times and the Fermina Daza’s tea always struck me as a metaphor for the best approach to understanding: that we should try and infuse this with real-world considerations. I could see in this tea, the words of Leon Eisenberg, words that have equally mattered to me in my approach to improving health, understanding and care:
“The very success of biomedicine has exacted a price in the way it has narrowed the physician’s focus exclusively to the biology of disease. However, the remedy does not lie in abandoning reductionism where it is appropriate but in incorporating it within a larger social framework to enable the physician to attend to the patient as well as to the disease.”
Leon Eisenberg was also of the view that “what has hampered progress is too narrow a view of the sciences relevant to medicine.”
I am going to conclude, that well intentioned as these pathways to “triage” our elderly by “routine” cognitive screening tests most certainly are, there are risks. This process involves reductionist tests, currently being recommended for use by non-trained staff. The risk is that such shorthands are regarded as more important and robust than overall time-honoured nursing and medical assessments.
I use validated rating scales everyday and when and used carefully and ethically they are an important part of overall assessment.
In improvement work such as this might we unintentionally be strapping ourselves to isolated measures that are the “quickest” and perhaps cheapest “improvement methodology” of addressing the needs of an ageing population who may present unwell?
Would it not be better, for all concerned if we trained and provided more frontline staff, doctors and nurses, to take holistic, time-honoured, and ethically scientific approaches to assesment?
The Clinical Standards may be 12 years old now, but these words have surely been found prophetic:
“Geriatrician involvement in acute care has increased over the years, but the pattern of service provision and the degree of collaboration with other specialists vary greatly across Scotland. Only a minority of older acute sector patients are cared for by geriatricians. Care of older people is now a major task for most acute specialties.”
I want to very briefly talk about fear.
This matter was actually raised by Dr Graham Ellis in his film for Healthcare Improvement Scotland. In talking to the relatives Dr Ellis has become acutely sensitive, as I have, of “the fear that their loved ones have of being admitted to a Nursing Home.” In my job as an NHS Consultant in the community I see patients recently discharged from hospital. I am of the view that they are more fearful than ever about being understood for their cognition alone. That they are aware that they will have memory tests whether they like it or not.
The line of thought that follows may be subconscious, but it often seems to be: “if they think I am confused they will regard this as dementia (or Alzheimer’s)” – “I will not recover from this” – “I am going to end up in a Nursing Home and die there.”
This is why we need to engage our elders in decisions that may affect them. We can – and should ask – relatives and carers, but we also need to study wider cultural fears in our ageing population generally so that we improve care as we all wish so to do.
Bettina Piko suggested in a paper now a decade old, that medicine should be viewed as an “integrative, biopsychosocial science,” and that “medical education must involve the study of the biological structures and psychosocial functioning of human beings not as separate systems, but as interactive ones.” Dr Piko suggested in conclusion that the “physician needs to become a sort of neo-polymath in a new Renaissance.”
This week a good example of such an approach was published in the BMJ online pages. It was by a Senior House Officer called Dr Sarah Lois Pinninty. One of the points that Dr Pinninty made was the risk of over-burdening services through well-intended improvements that are based on reductionist and poorly validated tests. The potential situation that may arise is that as services are stretched further, those most in need actually may be less likely to get the level of service they require. We must be wary of faltering steps into a world of inverse-care.
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 Healthcare Improvement Scotland. An interview with Executive Clinical Director of Healthcare Improvement Scotland, Dr Brian Robson, on clinical engagement
 NHS Forth Valley: Integrated Model of Care for Patients with Dementia “ALL PATIENTS > 65 YEARS MUST BE SCREENED FOR COGNITIVE IMPAIRMENT” 19 Jun 2013
 AMT4 – A shortened four-item version of the Abbreviated Mental Test (AMT4) was constructed using the following items: (1) Age, (2) Date of birth, (3) Place, and (4) Year, with impaired cognition indicated by an AMT4 score of less than four.
 Confusion Assessment Method (CAM). Adapted from Inouye et al., 1990.
 Miller, M & McDonald Identification and Immediate Management of Delirium. Improving Care for Older People (in Acute Care) Version 2 – updated on 5 July 2013 following a period of initial testing Driver diagrams, change interventions and ideas for testing
 Healthcare Improvement Scotland. Raigmore Hospital. Older people in acute hospitals announced inspection 24-26 September 2013
 Healthcare Improvement Scotland. St John‘s Hospital. Older people in acute hospitals unannounced inspection 3-5 September 2013
 Healthcare Improvement Scotland. Western Isles Hospital. Older people in acute hospitals announced inspection 13-18 October 2012
 Care for older people praised. 18 Sept 2013. http://nhsforthvalley.com/care-for-older-people-at-fvrh-praised/
 Healthcare Improvement Scotland. Larbert Hospital. Older people in acute hospitals announced inspection 23-25 Jul 2013
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 Gordon, P. J. E-mail to Healthcare Improvement Scotland following teleconference on 30 Jan 2014
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 Healthcare Improvement Scotland. Our work and achievements 2012-2013. Interview with Executive Clinical Director, Dr Brian Robson
 Minute of NHS Forth Valley Performance & Resources Committee 7.1 Francis Enquiry Update on Action. 5 Nov 2013
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 Delirium and Dementia Study Day. Forth Valley Royal Hospital. 6 March 2014
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 Clinical Standards: Older People in Acute Care. October 2002. Clinical Standards Board for Scotland (Promoting Public Confidence in NHSScotland) p32
 Clinical Standards: Older People in Acute Care. October 2002. Clinical Standards Board for Scotland (Promoting Public Confidence in NHSScotland) p50
 Board meeting: a public meeting of the Healthcare Improvement Scotland Minute 2.3 National screening programmes 18 December 2013, Edinburgh
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 MacLullich, A. Professor of Geriatric Medicine, University of Edinburgh. Secretary of the Delirium Association. Older People in Acute Care Improvement Programme. Healthcare Improvement Scotland film (1 of 5) March 2014 (Delirium pathways, delirium screening and the 4AT screening test for cognitive impairment and delirium))
 Reynish, E All older people should be assessed for memory function 12 July 2013 Professor Reynish is Chair of the British Geriatrics Society Dementia and Similar Disorders Section
 Wolff, L. Chair of Scottish Delirium Association (SDA) Improving care for older people in acute care Team Flash report. Preventing and Improving Delirium in Patients over 65 with hip fracture. Improvement Planning Event. March 2014
 Wolff, L. THINK Delirium. Delirium Management Pathway: Chair of the Scottish Delirium Association (SDA) and Brian McGurn (SDA) Health Improvement Scotland: Michelle Millar and Karen Goudie Presented August 2013
 Cleaver Lorraine. Comment on social media on Healthcare Improvement Scotland recommendations to test all our elders admitted to hospital with the 4AT test. 3 Feb 2014
 Heath, I. View expressed on social media as to mandatory cognitive screening for all aged 65 and over admitted to acute hospital. 2 Feb 2014
 Francis, R. The Francis Report. Mid Staffordshire NHS Foundation Trust Public Inquiry. 6 Feb 2013
 The Whittle report 2.1 National standards, guidance and best practice. As used as basis for Inspections. November 2013
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 Márquez, G. G. Words from p395 of “Love in the time of cholera”. First published 1985 in Spanish. Penguin books
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 Manthrope, J et al From forgetfulness to dementia, Br J Gen Pract 2013; 63: 30–31