Are “frailty units” and “dementia wards” the anathema of pure person-centred care?
Dr Shibley Rahman is an academic physician with interests in dementia, frailty and delirium. He tweets @dr_shibley
Person-centred care, for those who are enthusiastic about it like me, can at times feel like a religion. To be a pure follower of this approach, it means respecting the holistic aspects of a person, including perhaps interests and beliefs. Whilst “medicalisation” might not necessarily be a dirty word, the “person-centred approach”, as advocated by Dewing, McCormack, Rogers and Kitwood amongst others, means trying to avoid pigeon-holing people according to their diagnostic labels. This is a question of culture, as well as operational settings.
The importance of the actual diagnosis is well known in debates about classification mechanisms in other contexts, for example, psychiatric diagnoses such as psychosis. But, in reality, clinical diagnoses can be themselves ‘hit or miss’ affairs, where a cliff-edge phenomenon exists; you can have one diagnosis one moment and not have it at another due to the absence of a symptom. Diagnoses might be the best we can do in many geriatric long-term conditions such as dementia and frailty where arguably there is a lack of reliability in biomarkers, genetic or otherwise. Knowing that someone has dementia or is living with frailty might lead to quick recognition at the ‘front door’, allowing GPs to use ‘buzz words’ to get their patients into secondary care. Doctors, like other clinicians, tend to be bad at contemplating or communicating any uncertainty.
This approach must not evade all criticism, however. An overly medical lens might totally ignore other aspects, such as social health or impact of disability. Mary Tinetti famously published an article in 2004 entitled “The end of the disease era”. This article is a useful reminder about how piling up diagnoses in a long list can inadvertently lead to overtreatment and mistreatment with its own adverse effects. Drug trials and randomised controlled trials tend to focus on uncomplicated, ‘otherwise well’ younger patients. They do not really negotiate well older patients with huge medical complexity and substantial comorbidity and polypharmacy. We can’t easily predict how anyone particular combination of chemical manipulations will affect one older person, whose pharmacogenetics, pharmacodynamics and pharmacokinetics will be exquisitely individual. This is an elephant in the room nobody wants to ‘deep dive’ near.
We know that high quality in clinical care requires addressing a number of scarce resources such as time and money. All wards need to be staffed well (so that a patient can be taken to the toilet if need be, or can have the polythene removed from his microwaved lunch). Professionals ideally need time to care. One of the worst things you can do to a patient living with dementia or frailty is to rush. If we accept we cannot have a well-funded NHS with geriatrics wards, should settle for a few shiny “specialist units” instead? Might this be considered ‘defeat’?
Taking a yet further cynical standpoint, it could be that the constructs of “dementia wards” and ”frailty units” are simply an important and useful mechanism for senior clinicians to input into senior management, and to be seen to be ‘doing something’ about burning issues. This is euphemistically called ‘senior buy-in’. I do wonder whether either professional group is in reality so superficial. This could lead to quick diagnosis at the ‘front door’ and reduce length of stay. We are told that hospitals can be ‘dangerous places’. Serving up streamlined care might be a nice experience. What’s not to love?
The highly process-managed method of providing care sits uneasily with an alternative approach where patients, carers and clinicians need more time to ‘sort out’ highly complex patients. There are well known limits to the acute hospital admission, which can’t really be used to sort out every conceivable problem under the sun. So units which address people with frailty or dementia along separate pathways may be a good idea after all, but assuming that both populations are sufficiently homogenous according to their diagnoses to have similar specialist needs addressed. This, I feel, is not an assumption which can be easily made.
An alternative approach could be that we have more holistic person-centred geriatrics wards, where people are not streamed by diagnoses. This might be advisable, not least because diagnoses overlap commonly in geriatrics, and with the benefit of hindsight, may turn out to be incorrect. By not streaming patients, patients’ diagnostic labels might be kept more under review. As a compromise “best of both worlds”, we can take a person-centred approach to wards where people have been streamed by diagnosis.
A final concern of mine is whether patients and carers actually want to be identified by their conditions such as ‘dementia’ or ‘frailty’ on a ward or unit? This is segregation, not inclusion. The untoward effects of greater labelling and segregation or otherness is potentially dire, including increased stigma and prejudice against certain groups of patients. Do patients want their dementia to be ‘outed’ in public on a dementia unit? Furthermore, some of the streaming by diagnoses might lead to rather gimmicky approaches, like turning the ward into a museum of 1940s or 1950s memorabilia under the defence of “dementia friendly wards”.
For what it’s worth, I personally don’t feel that “frailty units” and “dementia wards” are necessarily the anathema of pure person-centred care, provided that a person-centred culture is still alive-and-well in an organisation and the leadership still reflects that.