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…

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.

 

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.

Seek first to understand, not be understood.

An argument is an emergency of self definition

In my day to day life I have the pleasure to meet a large number of people from all walks of life, and play a part in helping them through sometimes very difficult times in their lives.  This is the privilege and responsibility of being a doctor.  Usually people are very willing to enter into discussions about how they are feeling, what their symptoms are, how treatment has been going, and then listen when I go on to explain what I think is going on, and make a plan for further investigations or treatment.

More recently I have had some conversations with people that did not follow the usual, fairly polite, and respectful pattern.  In one case, the patient did not appear to want to enter into any form of discussion at all about what symptoms or problems may have brought him to the clinic.

Thinking back to the consultation, it was clear that the usual power dynamic had changed significantly – and, although I was aware of it at the time, it seemed that I should try to get the consultation back to the usual footing – as that is how we operate in medicine.  This resulted in a fairly frank exchange, and both parties undoubtedly did not perform at their best.  However, the plan we arrived at was appropriate for the condition being considered and although the consultation was not terribly satisfactory – it ended up being effective.

Now, why did this small-scale conflict arise?  There were undoubtedly faults in the system that led to communication errors in written information.  But when I really look back at what was going on at that moment – I can see a couple of things.

#1 The patient was really upset at the medical profession as a whole owing to limitations placed on him by medical examinations, which he did not believe were justified.  He had most probably lost out on a significant amount of income, and was therefore not pre-disposed to cooperate with the medical establishment.

#2 I was unconsciously unhappy that the power dynamic had shifted away from me in the consultation – and I therefore tried to re-assert my authority when questioned again and again about each detail of my plan.

So, what will I learn from this experience?

First, that a saying I learned recently and have tried to practice will require more work – namely – “Seek first to understand, rather than to be understood”  By examining more closely the reasons why this patient was unhappy, I could actually identify the likely reasons for the conflict, and in accepting that these were of great importance for the patient, include them in my appraisal of the situation, and allow the patient time and space to express this frustration, and then move on to the other needs the patient had from that consultation

Secondly, to recall that ‘arguments are emergencies of self-definition’ and act accordingly.  I read this phrase recently in a short story (Aftermath – Rachel Cusk), and was struck by it as representing a simple truth.  In this consultation, the ‘argument’ arose because the patient wished to express their feelings or displeasure at previous experiences, irrespective of my lack of role in them, and I wished to assert my position as that of the doctor, and inherently therefore deserving of respect and deference in the consultation.

In the future I need to recognise that there are times when what a patient needs from a consultation may not be entirely relevant to what I think they are there for.  Trying to force the issue down another road is not likely to leave either party satisfied. It is far better to be alert to this possibility and deal with what is most important for the patient – and place my needs slightly lower down the scale until the patient will be in a better frame of mind to work together on the issue I am seeing them for.  Ultimately I would like to get to the position where every one of my clinic appointments is run along the principles of shared decision making – but that is a work in progress.

Trust

Trust underpins the way doctors and patients interact, and trainees are always encouraged to build a rapport with patients, put patients at their ease and effectively gain their trust to enable a fruitful doctor-patient relationship to flourish.

In the background though are often competing demands on the emotions of doctor and patient alike.  A couple of vignettes might explain a bit better;

A patient I met recently found herself without a vital lifelong treatment because she was ‘treated like a child’ and then ‘dismissed’ when she attended a clinic and was refused a prescription because she wasn’t following the rigid protocol, and no flexibility was allowed.  She said this was because some ‘idiots don’t know how to look after themselves’ and she was refused despite being a long-term patient who usually managed her own medication very well.

The other patient was a man who had lost all faith in his surgical management after complications, which were inadequately explained to him.  This man has a very high level of formal education in biomedical sciences and simply did not believe he was being told the truth about his problems, or what the solutions should be. (all this complicated by his care originally being under a private provider, all causing him suspicion about their motivation to care for him once his original procedure was completed.)

On the other side of the desk, trust in the face of cultural norms and heuristics like “trust no one, assume nothing, and give oxygen” and in the face of a common view that doctors have superior understanding and knowledge about most things (our “say it with confidence and you will probably be right” approach) is difficult.  If you add in the conflicts of interests generated by fee for service private providers, there are increasing numbers of reasons why trust is so hard to build.

I don’t think there are any easy solutions, or and rules of thumb which necessarily help to resolve these difficulties in establishing a trusting relationship between doctor and patient, and sometimes it is absolutely appropriate to mistrust the information one is given, or an individual’s reliability but I think we should try to overcome mistrust as a default position.

Far better to give our patients and colleagues some credit, and enter into a more equal relationship wherever possible, than to alienate patients, and create divides where usually we all have the same aim of achieving a diagnosis and instituting a management plan with ultimate aim of improved health.