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…

Every day is a school day

Doctors have a strange sort of a career path.

There are few other industries where professionals who have passed long degrees, taken postgraduate exams, been working in their chosen field for up to 10 years, developed expertise, possibly gained PhDs and are still routinely referred to as ‘junior’

We work long hours (albeit reduced over the past few years by European legislation) and see hundreds, if not, thousands of patients in the time it takes to become a senior doctor.

These long hours have long been held up as an essential part of the training of a doctor – and hark back to the apprentice model of medical education which is where medical training has its roots.  In this model, by working alongside a master, one gains experience, tries out new techniques under supervision, and slowly becomes skilled enough to be considered an independent practitioner.

This model has been eroded somewhat in recent times by the move towards a competency based approach to curricula whereby one progresses, not through a slow acquisition of skills, but seemingly by hopping through the right hoops at the right time and getting the right box ticked on a bewildering number of forms  – all of which purport to confer – confirm – or convey competence in the procedure or process onto the trainee being appraised or assessed.

This competency based approach is lamented by those who feel that it has reduced medical education to a simple process of tick-boxes and has missed the essence of the apprenticeship model of learning.

But what is it that has changed?

I don’t think that juniors spend significantly less time being supervised any more – indeed the more senior members of the medical team are far more visible nowadays than they ever were in the past.  As I have progressed up the grades, it has become the norm to have registrars on-site, clerking patients, and twice daily Consultant ward rounds, even on the weekends.  So supervision has not necessarily gone – so why is the apprentice model no longer working?

I think that part of it is the acceptance by trainees that training can never be mixed with service, and that one cannot learn when doing a ‘menial task’ such as re-siting a cannula, or re-writing a drug chart on an on-call shift.

Indeed, this idea that learning can only take place in the lecture theatre, or when time has been set aside, or one is told “now here is an opportunity to learn” is, in my view, one of the most disabling attitudes, which prevents the aqcuisition of experience, dumbs down the privilege of providing a service to patients in need, and encourages trainees to resent time spent learning the trade which they are likely to follow for the rest of their lives.

In a discussion the other day I highlighted that I take the view that every day is a school day.  One should never go home without learning something.

This view has been backed up by the observations of a cohort of NHS graduate scheme participants who recently shadowed junior doctors.  Almost universally they were struck by the fact that junior doctors are being actively trained the whole time.  And when one takes a moment to think about it – every chance conversation about a clinical problem, every x-ray meeting, every checking of an idea with a senior is a moment of training.  That conversation may take place in the course of everyday service, but the information is gold-dust.

We have access to the experience, mistakes, triumphs, and disasters of our seniors, and if we only open our ears, we can take advantage of all of that.

Today was an example – a patient in clinic is proving to be a diagnostic challenge – are we to do this, do that, do nothing, or something else?  A brief conversation with my consultant, and I am now researching the cost to the NHS of medically unexplained breathlessness, and how this can be addressed, using a combination of medical reasoning, judicious use of ‘tests’, coaching techniques, and communication skills.

So – if you feel that you are stuck in a dead-end service job, that you learn nothing on a daily basis, and are longing for a conference where  you can return to the comfort of a didactic lecture – I think you might be missing out on a world of learning and knowledge every day.

Keep your eyes and ears open, and I am convinced that you will find that every day is a school day.

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.

It’s how you tell ’em

I recently heard two stories which made me think again about communication skills.

In each case, the information delivered to the patient (in both cases friends of mine) was entirely correct.  The problem was not in the decision making, the outcome, the skill, accuracy or dedication of the professional discussing their case, but in the way it was discussed.

In one, a friend who had been seeing a specialist for really very regular follow up saw a new doctor.  The new doctor had read the notes, seen the progress, and – it felt to my friend – made a decision on how the consultation was going to go, and ended up discharging him.  This was all despite having never met the patient, not heard the background, having no idea of the context of the illness – but the numbers looked good, the progress was clear and therefore the decision was an easy one.

The second was a friend who, on remarking how lucky they had been was told in no incertain terms that acutally they weren’t lucky that the illness had not had such severe effects on them, but really that they had been lucky this particular doctor had been around to help them – as it was really their intervention which turned a dire situation into one which has become far more stable and manageable.  Again, this may well be true, but the experience left the friend feeling somewhat bruised by the encounter – especially as all of the previous consultations had been painted in a positive light, and that the disease was always manageable.

So what am I to learn from these?

Well, firstly that context matters – whenever you are going to deliver information to someone – especially when that someone is vulnerable, then tact is still required to determine what level of knowledge is appropriate, and how explicit it is possible to be without overloading someone.  This may sound paternalistic, but part of communicating a message is making it understandable.  All at once is fine for some people, but with many, realisation and recognition of a serious illness or problem is a stepwise process.

The other thing is that communication skills matter.  Paying attention to the participants in a consultation – appreciating where they are coming from, and what experiences they have been having are hugely important.  As we move more and more to efficient models of care, we have to ensure that we, as doctors, and other heatlhcare professionals do not allow ourselves to be caught up entirely in the “production line” and that we retain the important one-on-one relationships that are so important in medicine.

Both of my friends were really quite happy with their care – and the decisions about them and the information they received were absolutely correct.  The problem lay in how they were told – without real care or compassion.

Your decision might be the correct one, the outcome may have been perfect, but patients are humans, not statistics – and humans have feelings – we sometimes need to remember to tread lightly, no matter how bad a day we are having.

 

Life after death

There is life after death.

Now, I know that sounds like a very rash statement, and one which has kept philosophers, scholars, sceptics, clerics and a fair few others busy for some few millennia.

However, as doctors, and healthcare professionals, we often seem to forget that there truly is life going on after death, or, perhaps more accurately, we get very easily distracted into concentrating on the life that has just come to occupy our attentions rather more than the one which has just ended within our sphere of influence.

Now, that may be entirely right and proper, modern medicine tends to have more to offer the living than the dead, but I there is an opportunity to practice medicine which all too often passes us by. It is not a cutting edge therapy, a new model of care or anything special, but it does take time, and effort.

On a couple of occasions recently I have encountered this life after death, and the outcomes of those meetings have changed the way I look at where our duty as physicians ends.

The two patients who have promoted this thinking passed away under the care of my team, and instead of the usual scurrying off of the house officer to fill in the death certificate +/- cremation form, we made appointments to meet with the relatives of the deceased as they came to collect the paperwork.

The discussions, questions and conversations which these meetings involved were, I hope useful for the relatives of the deceased, and certainly seemed to play a role in clearing up any misunderstandings, and allowed a chance to discuss events with less urgency than when their loved one remained alive but very ill.

I think the main thing these experiences bought home for me was the feeling that it is possible to continue to serve, care and help the healing process, even after death.

So when I say that there is life after death, I mean that we should remember those left behind by a death, and remember that we have some duty of care to them to.

I know that meeting with relatives after every death is unlikely to be practical, and that my colleagues in primary are probably better placed to help pick up the pieces than me, but I’ll do my utmost to be available, open and honest, and that way I hope to be able to assist a healing process, where clearly I wasn’t able to effect a cure for another.

March 2011 – Plus ca change…

This was something I originally posted on March 21 2011 on another blog which has since morphed into something else… but I think it still outlines what I think is important to salvage from the NHS Reforms (if they go ahead) or indeed whatever happens in their stead.

Recently the BMA representatives had a knees up in London where they debated long and hard about the NHS Proposed Reforms.  I was following on  Twitter

As I was following the (often predictable) passing of motions (no pun intended) on the live feeds, I was left with the feeling that perhaps this is too little too late – if the medical profession truly wanted to oppose these reforms outright, this should have been done well in advance of the first reading of the Bill in Parliament (see here for the Bill’s progress to date)  I honestly feel that the PCTs and SHAs have had so many of their staff leave that they are unlikely to be able to function as effectively as they had done up until the time that the reforms were  first publicized.

So what to do now?  I am not a politician, but passionately believe that politics matters to me and my patients – the current reforms show that more clearly than ever.  I don’t think that the BMA passing comment is going to radically alter the reforms, and if it does – how much real good can it do now – the horse seems to have bolted.

I feel that the way forwards now is to ensure that, whatever proportion of the reforms makes it through parliament, we as the medical profession sort out three things no matter what:

1.     Secondary care doctors must look to their local community.  It is naïve to think that a hospital only serves those patients that happen to be in the clinic, or on the wards.  Hospitals, if they wish to truly serve the public, which funds them, must look outside their walls, to the community.  We cannot sit on the inside of ivory towers complaining about the standard of care given in the community for patients with our particular illness, and do little or nothing to change that care.  This is “population medicine” – concern for the wider population, not just the referred population.  With limited resources, we need to be sure that specialists are seeing specialist cases, not just whoever happens to turn up.  Only through collaboration in networks or systems of care will we achieve this.

2.  Primary care physicians need to look to each other.  The unwarranted variation in the standard of care between primary care practices is no longer acceptable.  GPs, acting in networks across a community, and in collaboration with specialists should strive to bring up the standards of care across their patch.  Under-performance should not be tolerated, and clinical leadership, with solid clinical support, is essential to provide the credibility to enforce high clinical standards within a local health community. (This applies to the secondary care community too by the way)

3. Primary care physicians need to look to their patients.  When patients come into the surgery looking for treatments that are of no benefit, or are not likely to lead to resolution of an illness or symptoms, GPs must be able to have rational discussions about the risks and benefits of treatment.  Shared decision making processes can help with this (Implementing shared decision making in the NHS — Elwyn et al. 341 …) and result in better-informed patients making better informed choices.  PROMS are an excellent way to make a start on this, and bring home the realities of life and illness to patients.  We have an NHS, we are very lucky – it can’t and won’t be able to provide everything, and you may not need a treatment, just because there was a report once saying it might help you.  Primary care physicians and teams really are the gatekeepers; we should not use a rationing mindset when discussing treatment with patients, but be highlighting the true intangible costs (physical and emotional) associated with some treatments where the benefits are marginal.

Something of the Spainish Inquisition came over me whilst writing – sorry…

4. We all need to look to what patients want.  When it comes to service re-design, we often look for examples of what works in one area, and think – this is what I must do for my clinics.  Involving patients in the work of service design can achieve surprising results.  I have mentioned examples in previous blogs where patient involvement blew apart assumptions of physicians, and service providers about what patients really wanted from a service.    Only by understanding what patients truly want to see in a system, and then making strides towards that, will we start to see “appropriate” use of services.

So, what should we do in light of the SRM outcomes.  Yes, we should push to amend the parts of the bill which threaten the ability of doctors to serve their patients well, but in accepting that we may not get our way (Mr Lansley is not known for giving in lightly) we must start to take a different, pro-active attitude to getting the NHS, our NHS, our patients NHS back on track.  I believe that if we can concentrate on some of the steps above, we have a chance to make the best of a bad job.

So that was what I thought then – and it seems that so much has changes, but also so little has that I can re-post this without any significant editing.

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.