A meandering wander, or a hard climb?

Bad news is never welcome.

Bad news about one’s family is even less welcome.

When patients come to hospital, there is usually a very good reason. That might be a short, acute illness which requires a short stay, it may be a prolonged series of unfortunate events, which render a loved one devoid of that vitality that once defined them.

When it comes to chronic conditions – in particular those where there are few treatment options which affect mortality – be that COPD, dementia, certain cancers, heart failure (to name but a few) there is a variation in the trajectory which each patient takes, but the general direction of travel is often quite obvious to those looking in from the outside – and indeed, has been mapped out for a number of them – this is an example from NHS Lothian:

Illness trajectories – from NHS Lothian Website

One problem which I experience all too often is that the view from the ‘inside’ of some cases is very different indeed.

It is not unusual for me to meet patients who are struggling with their daily care needs, and have recruited family and friends to help with daily tasks which most healthy people don’t give a second thought to; walking to the toilet, having a shower, getting into or out if bed.

The human race is great at adaptation – it’s one of the reasons we have taken over our globe so completely. Individuals are great at adaptation too.

Adaptation and compensation for deteriorating health is great, but can become a charade, a way of covering up a slow decline into dependence.

And here is the problem, people often cope so well with their failing health, that to point out the trajectory can come as a shock, and as with all major revelations, patients can experience the full range of the Kubler-Ross grief reaction: (put in picture)

Kubler Ross Grief Cycle from http://www.empowernetwork.com

However, if, as doctors, we go along with the impression that all is ok, we can end up colluding with patients in a fantasy that all is well, and there is no need to worry.

In chronic conditions that lead to death, is this collusion actually good medicine? To expose a patient to the full, often stark, reality, of their condition in an explicit way could do significant harm, and precipitate worsening meta-problems such as anxiety or depression, and their coping could worsen, but equally, I hate the way that many end of life conversations seem to fly in the face of years of ‘its alright, we’ll keep you safe’ type conversations, and rather than a slow unveiling of the terminal phase of an illness, feel more like a push off a cliff into the void.

I don’t want all of my patients with chronic conditions to buckle under the weight of their diagnosis, and equally don’t want them all labouring under a false impression of invincibility – or an unrealistic expectation of durability (the futile encouragement from relatives that an elderly relative will ‘fight’ a metastatic disease, or multi-organ failure is tragic to witness).

I would, however like to be free to have more honest conversations at the right time, in the right way for each patient.

The problem seems to be multifactorial, but a culture of giving hope where perhaps there should be gentle revealing of reality is one if the key barriers. Death and illness seem to be failures in our clean, tidy, forever young western world. However, brutal honesty is not always helpful, and patronising collusion seldom is.

The right balance is different for each patient, but societally I think we need to start to reconnect with the frailty of the human frame, and not believe the hype about living forever in perfect health.

Lest we forget: life is a sexually transmitted disease with a 100% mortality rate…

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The Devil is in the detail

Recently I have had the unfortunate experience of having to take a member of my family to hospital – have them admitted, and stay there for about a week.

Luckily the system worked brilliantly at the front door and the treatment required was started promptly and appropriately, quite possibly preventing serious harm.

What followed after was a a mixed bag.  Some staff were excellent – going out of their way to explain what was going on, how things were progressing from their point of view, and allowing me to present my own ideas (along with those of friends with a specialist interest in the field) as to how things should be managed.  Others were less impressive – but probably for understandable reasons.  It was of interest to note that the more senior the doctors became – the harder it seemed for them to meet us at our level and have an equal conversation – resulting in some dissonance (Eric Berne has some answers for why this might have happened)

Doctors are a terrible bunch to have as patients – especially doctors with friends who can give advice with partial information, and thereby stick a spanner in the works for those in the team actually responsible for their care.

On reflection though – the difficulties did not come as a result of gross deficiencies in care, but in the details – single words here and there which made all the difference.  As you can imagine, parents of sick children pay attention to what doctors say.  If they have any kind of inkling as to what the doctors are saying implies then their hearing will be all that more acute.

Some of the disappointments during our stay came as a result of minor details – and I am sure that it was because we, as parents of the patient, were paying more attention to each and every word that was being said than perhaps the doctors were.

Other problems came later when we discovered that some things which had been told to us were simply untrue or inaccurate. This was especially hurtful – again, they did not amount to any negligence or deficiency in care – but they did waste time, effort and tears.

Having transferred to a different centre (for geographical practicality more than anything else) we were met by a team which seemed to work that little bit better.  Was this because hierarchies were obviously flatter – and communication between the senior staff and junior workers was more free? or simply that the confusion which exists at handover periods in the acute phase of an admission wasn’t present?

However, the details which made the difference continued – one team member very deftly avoided explaining the brutal truth of a possible course of treatment (one that was not necessary in the end) – and we are especially grateful for not having to confront that possiblility which ultimately never came to pass.

Well, whatever the reasons – we will continue to have mixed feelings about the first hospital, and have a better impression of the second – but for my own practice, I have now some experience on which to draw when dealing with my own patients – be they medics, nurses, plumbers or forestry workers (anyone really.)

And the lesson I have taken is that truly effective communication is a huge factor in the experience any patient has when receiving care – particularly as an inpatient.

And that communication must be consistent, accurate, and honest.

If not, you will lose the trust your patients have in you, and that can really damage the teamwork that is required between doctor and patient to tackle the mutual challenge of dealing with an illness and treating it effectively.

Inappropriate?

There is a phrase which goes around the wards and departments of many NHS hospitals:

Inappropriate attendance

This is most often used when talking about patients who pitch up to A+E with conditions which could usually be managed elsewhere.  These are the patients who are thought to cost the NHS a lot of money and are the target of various schemes to stream them to more appropriate settings.

So what are these ‘inappropriate attendances’?

I am very lucky to have benefited from a great education, am lucky enough to work in a pretty comprehensive health service, and because of my day job, have become pretty adept at navigating it, and getting help where and when I need it.

However, imagine if you haven’t had that benefit, and don’t know what a drop-in centre staffed by nurse practitioners can offer, or that you can get good advice over the phone from a GP out of hours, or that a pharmacist at the local chemists could deal with your ailment?  Well, what would you do then?

The decisions patients make about where to go for help are not simply random and unthinking, but they are made when patients are distressed, and searching for answers, and quickly at that.

The NHS is very good at taking a problem and designing a solution to it which works perfectly in a committee room, on paper and in a consultation document.  However, as Helmuth von Moltke the Elder once said, “no plan survives contact with the enemy”.  Similarly, no treatment pathway, referral criteria, single point of access or similar will survive in its original form, and the consequences are very often unintended rather than those set out by their architects.

Once we have set out a plan though, we often don’t recognise that patients (including ourselves) will follow the path of least resistance, and seek help where they will get it.  So if one sets up a system where the most efficient way to get a diagnosis for a funny rash “which isn’t a huge problem, but I don’t really want to take a day off work for it” is to go to A+E, then go to A+E the patients will.

We must recall also that “every system is designed perfectly to achieve the results it yields” (Paul Batalden)  In this case, we must recognise that we cannot force people to make choices which fit with our ideal, but instead that they will make choices which seem to them to make the most sense, and offer them the help the want as quickly as possible.

To change the way in which patients behave we must either match their behaviour (put urgent care centres staffed by GPs in A+E departments and hive off those we think are “inappropriate for A+E” to the GPs next door, or we must improve the alternative offer – and improve community services, awareness of community services such that they can compete with the A+E service to offer reassurance, diagnosis and therapy for those patients who seek it outwith office hours – however the promise of swift treatment and diagnosis at a hospital may prove too much – and the draw of A+E too strong 

There are positive points on both sides of the fence on this one, but one thing is clear – there really are very few cases where an attendance at A+E is “inappropriate”:

It may be that the patient didn’t want to wait and was playing the system – but then the system may be inappropriate, or it might just be that the patient was anxious, tired, scared and wanted some help. Equally, the patient might be lacking the skills and knowledge to manage and requires some additional information on how to navigate the complex health economies we have generated.

And I seem to remember that that falls fairly squarely into the lap of the caring profession of which I am proud to be a member.  It does not become us to castigate our patients for their lack of understanding or anxiety.

Language – a double edged sword

Doctors are like a number of other professions in that they have a specialized language which helps them to communicate all sorts of complex information to each other, and helps them to be precise in what they are describing to one another.

The process of learning this language can be confusing.

Recently some medical students were asking what was meant by the term ‘pulmonary congestion’ and how this was different to ‘alveolar oedema’ or ‘pulmonary oedema’ or ‘interstitiial oedema’ or   I struggled to provide a decent explanation for each of the terms other than that they were basically all the same thing.

We then discussed how you might go on to explain such a process to a patient – out came a reliable phrase: ‘fluid on the lungs.’  The conversation continued, and we started to discuss how you might explain a pleural effusion to a patient…  And again – “fluid on the lungs”

So there, we go – doctors have managed to reduce two incredibly different and distinct processes which require entirely different treatment modalities, and hold very different implications to a single ‘simple’ phrase to communicate these things to patients.

The common term for describing technical language is ‘jargon’ – defined as language or terms which are  ‘not likely to be easily understood by persons outside the profession

If we look at how this affects doctors and patients – we can see from a few studies, and from experience that using jargon can reduce patient understanding in consultations – this review highlights some of the points about patient-doctor communication which would be sensible to keep in mind when talking to patients and this consensus statement offers a framework for key elements of communication in medical encounters.

There is less guidance for what phrases we should use to describe pathological processes to patients – and so a vocabulary has arisen which is in common usage but seems to be oversimplified and hence confusing to patients and students alike.

So what is the solution?  Well jargon – as well as being a tool of exclusion to keep students on their toes, can also be useful.  It is sometimes helpful to be able to discuss elements of a case with colleagues using a ‘code’ instead of graphic detail – and this is done all the time in front of patients, and in corridors.  Jargon, therefore can be useful – if it is justified is more contentious.

However, when explaining things to patients, I really think that we don’t have to oversimplify things – using diagrams, simple language and examples from other areas of everyday experience it is possible to communicate quite complex processes to patients.  If we do not take the time, and instead use phrases which are so simple as to be opaque, we are at risk of misleading patients, causing confusion and therefore reducing their chances of understanding their disease.

Higher rates of health literacy and effective education have been associated with better outcomes in some areas but in others, may have contributed to non-adherence following discharge from hospital (possibly a good thing – health outcomes weren’t measures in this study- but prescription inaccuracy was quite high!)

Ultimately, jargon is here to stay.  For those interested in the NHS, and respiratory medicine in general there is a fantastic glossary published and kept up to date by IMPRESS.

Without being aware of how we are using language at work – either through excessive complexity, or inaccurate simplification – we are at risk of excluding patients, colleagues and students from the conversation, at the very points where they should be integral to it.

Patient choice – where does that leave doctors?

Doctors got a lot of bad press in the past for being paternalistic, not involving patients in decisions about their treatment – as exemplified by Sir Lancelot Spratt in this clip (see 1:30)

The King’s Fund recently published a report on shared decision making, and highlight some of the challenges, and benefits of a ‘shared decision making’ approach to the medical consultation. All of the recommendations are pertinent to most consultations and the general advice is excellent.

However, a recent paper shows that patients, when it comes to some decisions, would prefer their doctor to take a leading role.

So where does that leave us doctors as we consult with patients with different health beliefs, different attitudes to their entitlements and different agendas when it comes to their own healthcare? Trish Greenhalgh has written an excellent paper looking at this

I would like to say it puts us in the driving seat – with access to the data, both official and anecdotal. With that comes responsibility. As we move to seeing more and more ‘provider organisations’ entering the health economy, patient choice is likely to expand – and with it, the number of decisions to be made regarding treatment and investigations.

Shared decision making relies on the fact that patients are informed enough to be able to make a choice about where or when to be investigated for a possible condition. This is a ‘good thing’. I love the idea that patients in the future will be able to discuss with their GP about which hospital offers the best service for a particular condition, how far away they are, what the waiting time is like, what the outcomes have been for previous patients with similar problems… BUT

And it is a big BUT – this relies on accurate, up to date and relevant information. Open data projects which are being geared up and are providing health-related data to the public domain like the London Datastore are a step in the right direction, and the recent interest in health apps as publicised yesterday by the Department of Health here will go some way to democratising the information about health services, and empowering patients.

There is however, some more basic, down-to-earth common sense which is required in all of this – and a couple of patients I have seen recently illustrate this perfectly.

One was a lady with a history of cough – which resolved after a period of a few weeks. She had attended one hospital, had an x-ray and the report indicated that TB could not be ruled out. Choose and book being what it is, she was offered a choice – and chose to come to my hospital for further specialist attention.

The second was similar in that three chest x-rays had been taken at one hospital, and as the appointments on choose and book indicated a quicker consultation at my hospital, the patient chose it rather than the one where the x-rays had been performed.

In both cases the patients had gone through what must have been some sort of decision making process with their referring doctor. Now, they may have had an excellent discussion about the relative merits of each of the institutions available to them, but something fundamental was missing – the fact that the NHS is not, has never been , and if competition between providers increases, probably never will be an organisation which is excellent at sharing information at the drop of a hat, or transferring things like x-ray films and images between institutions.

However, that is not the image of the NHS that patients have, and their expectation – in the world of instant messaging, flickr and facebook – is that images and information should be flowing freely like water.

So – yes, let’s get more shared decision making into the consultation room, but let’s not forget that:

1. Doctors have a duty to advocate for their patients, and we should take into account the additional guidance some patients need in complex situations.

2. There are still some very mundane limits to the efficiency of the NHS and the strife that this causes patients when they realise that their questions cannot be answered, and never could be by the doctor they ultimately consult with.

Patient ‘choice’ as it becomes more and more fashionable will mean many things to many people – but patients should not suffer as a result of doctors being poor advocates, and not highlighting all of the important information – even if it is simply the logistics.