The Person-Centred Care of Medically Unexplained Symptoms – a revolution is afoot

A one day symposium, at St George’s, University of London, 28 September 2016. 

A collaboration between the European Society for Person Centered Healthcare, and the CauseHealth Project.

OK.  Take a deep breath.  I just did.  Because on opening my notebook to begin trying to make sense of this amazing one-day Symposium in London, I have discovered that I took 32 pages of notes.  And I didn’t even get everything down.  Yes it was packed with intellectual stimulation,  organized by the exciting CauseHealth people, in collaboration with the ESPCH, who are all very brainy and who are exploring a field so fascinating, far-reaching and multi-layered that it’s not easy to even define.  There was politics, philosophy, taxonomy, research, education, neurology, psychology, croissants.  What’s not to like?  So prepare yourself.  As blogs go, this is a long one.

Andrew Miles – (please forgive the absence of titles and letters for all the speakers – collectively they are so highly decorated that conveying their particulars would interrupt the flow of your read) – Andrew Miles began by setting the scene.  The ESPCH began in 2014, to tackle the problem that healthcare has become RADICALLY LESS PERSONAL and

the responsibility to care, comfort and console is seen as secondary or even dispensable

There has been, he said, an increasing disassociation of science and humanism in medicine which risks short-changing patients.    The aim of the ESPCH is to reintroduce humanism into modern healthcare.  We need, he continued in this admirable vein, to respond to peoples’ emotional, social and spiritual necessities in addition to physical needs. (No, they don’t shy away from the word “spiritual”).  To this end they have set up structures (journal, conferences, projects and so forth) and intend also to tackle person-centred care of conditions such as Cancer, Motor Neuron Disease and HIV.  The goal:  to create a roadmap and guidance, showing what a person-centred care programme would look like.  Good idea.

rani

Rani – she’s like a Norweigian philosophy ninja

Rani Lili-Anjum then took a look at the “foundation for medicine”, and explained how the norms which dictate how we do science need to be challenged.  For example, the idea that 1) RCTs are the best way to establish causation, and 2) theories are secondary to data, and  3) what works for most people statistically should be applied to everyone, might hamper the understanding of medically unexplained symptoms, which are 1) complex, 2) heterogenic and 3) medically unique to each patient.  She suggested that trying to understand MUS (medically unexplained symptoms) by collecting more and more data and doing more and more RCTs might be flogging a dead horse.  (My words, not hers, but I think that’s what she meant).

She has discussed causation at length at a previous conference, so if you need to go through it again please read the relevant blogs here and here, but a few interesting points she mentioned

  • We need to “zoom out” (her catchword of the day) and realise that theory goes beyond what you can observe
  • If proving cause means something must be repeatable, then we can never prove the big bang theory because that is never repeatable
  • If something works for 60% of people, that does not mean that there is 60% chance it will work for you (statistics, eh?  don’t you just love ’em)
  • Monocausal models don’t work on conditions with multifactorial causation

Robin Murphy sounded like an American at Oxford, and had a mild passing resemblance to the boss from the IT Crowd.  He talked about how tools such as RCTs, EBM and the scientific method

are relatively weak in comparison with the model of understanding to which we aspire

He told us that there are fundamental weaknesses in how people think which cause us to misunderstand the complexity of causation.   He  then quoted post hoc ergo propter hoc.  This means, literally translated, “after this, therefore because of this”.  Conveniently, it can be abbreviated to the “post hoc fallacy” if you’re trying to sound learned, but are not confident enough for the whole phrase to slide off the tongue convincingly. The post hoc fallacy is committed when it is assumed that because one thing occurred after another, it must have occurred as a result of it.  This is logical, and the way we tend to think, but wrong, and leads to all sorts of absurd conclusions and implications.  e.g. if you are a man with a terminal illness, why not get married as it has been proved that married men live longer?  He had three very interesting points which indicate how we go wrong when we think about causes of things.

  • Animals have a single cause bias
  • A person’s state disrupts their causal sensitivity
  • A person’s state influences how they represent or reconfigure causal problems

The single cause bias means this:  if you train rats that food is available when a light goes on, i.e. a classic Pavlov response, they will stick with that first association even when you try to introduce subsequent different associations. The first learning experience sticks.  This is reflected in David Nutt’s drug research, where he discovered that a positive first experience of a drug greatly increases the likelihood of becoming a repeat user, however many bad trips you might have subsequently.  And we all know that if a patient has a dramatically good response to your first treatment, they can attribute quite remarkable healing powers to you which your humble protestations and subsequent average results can never quite erase.

However, even though we think like this, single causes are almost never necessary or sufficient to cause an event.  In addition, if we are in an altered state (he used depression, and anxiety as examples) we have a weakened ability to identify causes and make sense of them.  To sum up

not only is the world more complex than we generally tend to acknowledge, but we are evolved to think more simply than we might wish

rani-and-robin

Rani and Robin in conversation

Carmel Martin is a GP from Melbourne. A fan of complex adaptive systems theory, she took a different tack from Rani.  Instead of insisting that we must challenge science, she thinks the problem is that medicine is based on the science of a bygone age.  We need newer science in medicine.  Words that you see in the Waterstones popular science section tripped easily off her tongue:- Chaos Theory, Einstein, notion of dynamics, Uncertainty principle, Barabasi, Heisenberg, pattern-modelling, networks science, emergent behaviours.  At this point I idly wondered if she ever met up with David Butler of “Explain Pain” fame, who loves talking emergence and who lives in Melbourne.  They might get on.  She thinks RCTs can form a part of pattern-modelling, which she sees as the way forward.

Turning another cliche of person-centredness on its head, she reminded us that the whole can, in fact, be less than the sum of its parts, not always more.  It can even equal the sum of its parts.  Before you think she was an solely an abstract thinker, we were given an interesting picture of her work life as a GP when she uttered the phrase: “When I sit in my practice and deal with someone’s health journey”  –  Health Journey?!! These doctors are unashamedly more alternative and holistic than us!  She said in practice people with MUS are usually  moved along to physiotherapy or psychology departments.

The process of diagnosis is a mess

She believes that the nature of diagnosis is increasingly unfit for purpose, and current diagnostic labelling is inadequate to explain or represent MUS.  But she says that doctors are the hardest to change to person-centred practice, as their heads go straight to diagnosis (and a single cause of the condition) and they can’t see beyond that.  It’s how they’re trained.  Doctors struggle with diagnosis, especially of MUS, and there can be unintended consequences.  By labelling someone with IBS, ME, Gulf War syndrome or Windfarm syndrome (a new one to me) we might confer “sick status” on people.  She pointed out the absurdity of the fact that there are now so many diagnostic categories: e.g. there are different types of lupus, and each type has about 8 subtypes, and you could probably go on and on subdividing them until each person has their own unique subtype of lupus.

Carmel is a great believer in instinct and qualitative research.  Her  commonsense manner and formidable grasp of sentences involving an unfeasibly large number of long words belie someone who can say without affectation that we need a “humble acceptance of the mystery of the largeness”, and that “teaching and understanding people’s journeys” is important.  She referred to a book called Guns, Germs and Steel, and declared that we in Western medicine need a wider skill set and –  get this – the skills she was talking about are listening, sensing, probing and adapting.  Far out.  She says that people who can “smell the environment” have a greater capacity for making complex decisions.

She introduced me to a new word – interoception – which seems to roughly mean “human intuitive knowledge of personal health states.”    She thinks people are good interoceptors i.e they have an excellent sense of themselves, and apparently self-rated health is the best predictor of morbidity and mortality.

Brian Broom continued the New World theme.  He’s from New Zealand.  He told us a story about a lady who had such severe asthma attacks that she had to be repeatedly helicoptered in to hospital.  He was brought in as some kind of crack troubleshooter, and found that her attacks were triggered by visits to places and people associated with horrible sexual abuse as a child.  He got her some appropriate psychotherapy and  her most severe attacks stopped.  He pondered whether this was a medically explained or unexplained symptom?  He pointed out that conditions such as perennial rhinitis, and chronic urticaria and chronic fatigue are undeniably physical, but are they medically explained?  He also reminded us how personal stories can match the physical, and  language and and disease sometimes match so perfectly that disease seems symbolic. He thinks narrative meaning is crucial in looking at the emergence of an illness.

He thinks mindbody should be written mindbody not mind/body, and believes that the soul and environment are also a dimension of personality – mindbodysoulenvironment?  (Yes, he said “soul” – these people aren’t scared).  He also talks about treating larger wholes than even the whole person, wholeperson? and said families, communities and cultures are systems within which the individual either flourishes or withers, and individuals can carry generational trauma on behalf of a system.  mindbodysoulenvironmentfamilyculture?  This begs the interesting question of how we might treat the entire English stiff upper lip, or Australian chip on the shoulder, for example.  (N.B I have English and Australian nationality – I’m hoping this means I can’t technically  offend).

He thought two of his best person-centred therapists were not actually trained psychotherapists – one was a GP and one a physio.  While naturally talented, their difficulties were, in the GP’s case finding time to work with the people, and in the physio’s case, defining the scope of what they were actually allowed to do under the label “physiotherapist” – these are pertinent issues for many health professionals, or even lay people who have a natural talent at helping people in these situations.  The existence of the vast army of non-medical carers in the form of family members, friends, chaplains,  lay therapists and so on was brought up more than once in the day.

likely-lads-mark-andrews-and-stephen-tyreman

Likely Lads Mark Andrews (LCOM) and Prof. Stephen Tyreman (BSO) –  osteopaths were well represented

Marta Buszewicz, a London Gp, was chiefly concerned with the failure of the medical system to train doctors to treat MUS.  She presented some surprising figures.

  • MUS account for a whopping 25 – 50% primary care consultations
  • MUS account for about 50% or more of many secondary care consultations.

Wow.  I didn’t realise it was that many, especially in secondary care.

She said that a study by Kroenky 1989 had found that only 16% of 1000 cases at an internal medicine clinic had any organic reasons for symptoms.  Less than a fifth.  But here’s the disconnect:  medical students learn to treat only this minority of patients.  She presented a vignette of the way doctors sometimes deal inadequately with MUS in practice:

Patient:  Doctor, doctor, I have a terrible feeling inside

Doctor:  Let’s see you in a fortnight and see if you’ve shaken it

No, it’s not a joke.

This lack of engagement is what leads patients to extend or elaborate their symptoms.  Most medical schools offer at most only a few hours on how to deal with these sorts of patients, and mindbody courses are minimal and nearly always only offered in psychiatry.  Undergraduates don’t see the relevance of it and MUS are not even on the foundation year curriculum.  Trainees are apparently enthusiastic to deal with these patients when they first start seeing them, but it gets knocked out of them.   They say that senior staff (who teach by role modelling) often have a very negative attitude, teaching, for example, that you shouldn’t waste your time on them, there’s nothing wrong with them, and you should try to get them discharged asap. They learn to ignore psychosocial factors.

So doctors end up lacking necessary skills, getting anxious and frustrated, overwhelmed and uneasy with this kind of patient.  They relate their uncertainty to incompetence and no one likes to feel incompetent.  As for specialists, they see their job as excluding causes relating to their own speciality, not treating people who have no identifiable pathology.

And people wonder why complementary and alternative medicine is so popular?

Lars-Petter Granan  deals with pain, and patients include olympic gold-medallists, people with brain tumours, multiple sclerosis and spinal cord injuries.  He reminded us that to a patient the phrase “we don’t know what it is” can be interpreted as “it’s in my mind”.  He said according to the World Health Organization chronic pain is the most common cause of years lived with disability everywhere throughout the world and throughout different societies.  Yet he claimed that no treatment effect has been proven and there is no evidence for any pain treatments, really.  He has an interest in brain science and his treatment is based partly on giving great attention to the patient (a 90 minute consultation to allow time for the full story) plus reeducation to provide a new explanatory model to the patient.  The unreliability and weakness of our thought processes was mentionned again, along with this handy guide to our cognitive biases.

———————————————————————-

We broke off to mingle, enjoy spicy chicken goujons dipped in sweet chilli sauce, and to discuss the meaning of “nothing”, and ponder just how person-centred my own field, (osteopathy), actually is.


 

stephen-mumford

Stephen Mumford is also part of the CauseHealth project.  He’s written a philosophical novel – “Glimpse of Light” – set in Norway.   It’ll be in the shops, published by Bloomsbury, early 2017.  He is also studying “nothing”.

 

Abraham Rudnick had the post-prandial slot, but we were not tempted to doze.  It was interesting.  Abraham was talking about the biopsychosocial formulation.  And wow is he hardcore when it comes to being person-centred.  He prefers using “scenario” instead of “case report” because, direct quote, “a person is not a case”.    He believes “lived experience is the only robust evidence” for people with medically unexplained symptoms (hello?  ASA?), and he thinks the bio should come after the psychosocial, presumably indicating where he puts the biology in the hierarchy of importance.  In fact so focused on the person is he, that like Brian Broom, he’s gone beyond any limited idea of “person” and regards himself as investigating “situations” not “patients”.  He explained the biopsychosocial formulation in detail, but it’s probably easiest summed up by an example he gave of a biopsychosocial diagnosis:

Acute on chronic social stressor with accompanying spiritual crisis, diminished social support, affecting biological and psychological resilience  

(Yes, he also said “spiritual”. This casual use of the word is bit of a shock for an osteopath, because in osteopathy the word “spiritual” is so taboo that you would think witch-drowning was back in fashion.)

Following assessments and explorations, the treatment plan might be something like this

Existential counselling, reconnect with old friends, physical activity enhancement.

Can we all have doctors like this please?

By the by, a few fascinating facts he shared:

  1. When there was a large migration of Ethiopian Jews to Israel, it was discovered that they had an epidemic of abdominal pain, which was found to be depression expressing itself somatically.  (NB Somatic expression of depression is common in developing countries)
  2. ECT has had a bad press, but it’s actually one of the most effective ways to treat mental illness, with few side effects.
  3. A good one-question screen for suicidal tendencies is “Have you been having thoughts of hurting yourself?”.

Frankj Rohricht had done an interesting study in treating patients with MUS, which he described half-seriously as “c0mplexogenic”.  He took patients with symptoms such as headaches, chest, back or pelvic pain.  He described the patients as having several characteristics including

  1. predisposing vulnerablities (e.g.  low pain threshold)
  2. hyperarousal (amplified somatic styles of coping)
  3. hypervigilance
  4. alexithymia – difficulty expressing emotions
  5. nonverbal communication of distress

The approach had several facets including

  1. having interest in and time for their physical complaints
  2. using assessment tools (questionnaires)
  3. psychoeducation (this didn’t work well in groups, interestingly)
  4. mindfulness-based stress reduction
  5. body oriented psychological interventions called “strategies for better living”

They made use of dance movement therapists and found that to be extremely effective.

They found that this approach was clinically- and cost-effective.  The patients had been high frequency visitors to the GP.  They seemed to learn to cope better on their own and foster their own wellbeing.  Far fewer visits to the GP as a result.

neil-and-matt

Physiotherapists Matt Low and Neil Maltby (of Becoming More Human blog fame)

Glenn Nielsen got arguably even more real,  presenting a study into functional motor disorder.  To my shame, I had never heard of it despite it being as common as MS.  Once I saw some film of the patients, with unexplained tremors and twitches, I realised I had actually had a couple of patients with it.  In interview, most of the patients said they’d had a “frightening physical event” which they associated with the onset, and felt dismissed and disbelieved when they were given psychological reasons for what is unarguably a physical symptom.  The intervention in this study included strategies to alter the patients’ attention and expectation of their motor disorder.  And this was remarkably effective for many of them.  They felt that the understanding gained from the intervention was the most valuable part of it.

a-learned-panel

Speakers had to contend with slings and arrows from the audience – Glenn, Trudie and Andrew, I think

 

Trudie Chalder breezed in for one of the final talks.  She seemed familiar with the coalface. Trudie said half of new outpatients have at least one MUS (she included IBS, period pain, CFS and tension headache amongst others)  and about half of those have comorbidity (e.g. anxiety, depression, sleep disorder, disability).  However there is a lack of skills and understanding to deal with them.  She echoed previous speakers, in identifying the need for validation, communication, explanation and empathy. She said patients don’t like the term MUS.  Many prefer “persistent physical symptoms“, alhtough some like a specific diagnosis – CFS for example.  DSM-V has a useful categorisation, “Somatic symptoms disorder“, but those don’t have to be MU.  They just have to be

  1. distressing and impairing
  2. persisting six months or more
  3. associated with abnormal and excessive thoughts, feelings and behaviours

Not privy to earlier lofty discussions such as the one about the need to ponder “what is a person?” or consider if you can have “symptoms of health”, she did ask the reasonable, grounded question: if you don’t think trials and studies work, how do you suggest allocating the ever-diminishing resources i.e. tax-payers’ hard-earned cash?  You have to have some way of identifying the most likely thing to help, surely? Well, yes..

Andrew Miles, who had started us off, now rounded up.  He reminded me that this was not simply a meeting of idealistic philosophers and thinkers enjoying convivial intellectualising.  He summed up ‘what needs to happen’ in a display of clear thinking so articulate that I think it might have invited a round of applause.  If only I had learnt shorthand.  But I jotted down these words:  a national strategy, political will, reordering of the hierarchy of evidence, transformational leadership, policymakers, stakeholder engagement.  This was my leadership course taken to the next level.  He gave me hope and confidence that there are people out there who know what they’re doing and have some clout, looking to change, on a large and systemic scale, the lives of millions of neglected and misunderstood people, living with symptoms they don’t like but feel powerless to alter.  Good.

Phew…

….if there’s no blog next week, it’s because I’m having a break…

 

 

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4 thoughts on “The Person-Centred Care of Medically Unexplained Symptoms – a revolution is afoot

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