Making it up as we go along

Phil’s spinal surgery hadn’t gone well. From a self-defined 70% of full painless function, he was down to about 30% after the operation. We spent an hour talking and I was struck by how much the poor quality of the interpersonal, relational care was at least as much of a disappointment as the failure of the operation to improve his symptoms. He reminded me of General Practice Professor, Kieran Sweeney who complained, in tears, that while the transactional aspects of his care with cancer was faultless, the relational aspects simply were not.

Medicine is not solely a technical activity and pursuit, medicine is understanding and being with people at the edge of the human predicament.

He goes on to make the distinction between being cared for and being cared about. Those caring for him were kind and competent, but those who cared about him, went beyond this to find out what really mattered to him.

At the end of our chat, Phil (a friend, not a patient) asked if I would give a talk about doctors and patients at his shop, Cyclefit which runs public-lectures. Without either hesitation or thought, I agreed and quite hastily came up with the title, ‘How to tell if your healthcare professional is making it up as they go along’

Making it up

The link to the slides is here and the notes are below.

Art, Science or Practice?

asp

Science has made such enormous strides and contributed so much to modern medicine that it is tempting think that medicine needs to be more scientific. Indeed there is evidence that doctors cannot interpret even the most basic statistics that are used to present the findings of most medical research and the lack of statistical literacy has been described as a large-scale ethical problem. On the other hand, there are those who think that modern medicine lacks humanity and doctors need more training in the arts and humanities. Being embedded in one camp or the other, there are those who believe that a doctor who becomes more of one will become less of the other, and most people if forced to choose between competence and kindness will err towards cold-hearted technical skill rather than compassionate ineptitude.

But they are not mutually exclusive and medicine is neither art nor science, but a practice, in which clinical judgement is not only knowledge of what could be done, but wisdom to decide what should be done. This practical wisdom, or phronesis, the skill to combine expertise and value, science and subjectivity is what makes doctors practitioners, rather than scientists or artists.

hm

Brain surgeon, Henry Marsh’s extraordinary book sets the scene at the beginning of many of the chapters: in a darkened room his trainees are looking up at the projected brain-scans of patients admitted overnight who are being considered for surgery. Eager to impress, they are often quick and confident as they identify the anatomy and the diagnosis and possible surgical interventions. On the question of what ought to be done, whether the risks of surgery or the likely prognosis warrants intervention they are far more reticent. He notes, more than once that, ‘few people outside medicine realise that what tortures doctors most is uncertainty’ a point also made by US surgeon/writer Atul Gawande in his book about care at the end of life.

Evidence-Based-Medicine

The modern pioneer of evidence-based-medicine (EBM) David Sackett, described EBM in 1996 as the integration of individual clinical expertise with the best available external evidence and the patient’s values and expectations. 

EBM = clinical expertise + external evidence + patient values

Sackett was well aware of its limitations,

Without clinical expertise, practice risks becoming tyrannised by evidence, for even excellent external evidence may be inapplicable to or inappropriate for an individual patient.

There may be more fundamental problems.

For one thing, it’s not clear why clinical expertise is on the right side of the equation – as if it is somehow separate from evidence and patient values rather than the ability to integrate them. Why not,

Clinical expertise = external evidence + patient values?

More importantly though, patient expertise and clinician values are excluded despite it being obvious, if under-appreciated that patients are experts and clinician values influence care. Greater attention to clinician values and patient expertise is almost certainly key to understanding variations in care.

A better formulation might be,

Clinical practice is the integration of the best evidence with the combined values and expertise of patients and clinicians.

Taking into account values and expertise is no easy task, and has been the subject of many of my blogs, but the science itself is too often of dubious quality and reliability and most associations tend to be overstated. Clinical judgment is inescapably uncertain.

Making sense of stats.

The misinterpretation of statistics by public figures is a common source of educational material. President Eisenhower’s astonishment and alarm at discovering that half of all Americans have below average intelligence being a well known example. New York Mayor, Rudi Giuliani’s relief at being diagnosed with prostate cancer in the US where survival is twice that in the UK is a good example of how screening can effect survival rates.

ltb

It is easily assumed that the earlier something is diagnosed the better, but there are reasons to be cautious. For one, it may not be possible to do anything to prevent the progression of the condition, so an early diagnosis may just increase the number of years that you’ve got to worry about it. For another, the natural progression of many conditions can be variable and difficult to predict. In these cases, erring on one side of caution results in more investigations and treatment which can do more harm than good, as in the case of breast cancer. A recent review concluded that lives were not being saved by screening adults with no symptoms. Choosing Wisely is one of many movements dedicated to helping doctors and patients make sense of screening and other medical interventions.

Relative and Absolute risk reduction.

RRRARR

Statins, the drugs that reduce cholesterol levels are now the world’s most widely prescribed drugs, but most people taking them don’t know how much benefit they’re getting from them, or whether the benefits are likely to outweigh the risks. There are excellent online decision tools, here, here and here and many others. As statin can reduce your risk of heart attack or stroke by about 30%. This is the Relative Risk Reduction (RRR) and is the same for everybody. The Absolute Risk Reduction (ARR) depends on your personal risk of heart attack or stroke to begin with and so is specific to you. This is the one that matters. If you are at high risk, for example your parents had heart attacks, you have diabetes and high blood pressure, you’re overweight and smoke, then you’ll have a lot to gain – about a 30% ARR. But if you’re a fit 40 year old with none of those risk factors, you will have very little to gain, because your starting risk is so low, about 0.7%, and 30% of 0.7  is about a 0.2% ARR. In the slides I compare 50 year old smoker, Nigel Farage, with 43 year old, recently retired professional cyclist, Jens Voigt. The Numbers Needed to Treat (NNT) is a measure of how many people, like you (or Jens) will need treatment to prevent one heart attack or stroke. For Nigel it’s about 12 and for Jens it’s about 500. It’s worth considering that stopping smoking or eating nuts and olive oil every day would do Nigel more good than taking a statin and that either of them could have other risk or protective factors we don’t know about. Risk prediction is a very uncertain science.

Relative Risk Increase

DM

RIR

Newspapers, especially tabloids, make good use of relative-risk increase statistics, for example the Daily Mail: ‘3 rashers of bacon a day increases your risk of breast cancer by 20%’ headline. As with a risk reduction, a risk increase depends on what your risk of breast cancer is to begin with. Breast cancer is the most common cancer in the UK, affecting 1 in 8 (12.5%) of women. Fortunately almost 80% of women are still alive more than 10 years after diagnosis, but this doesn’t make it much less frightening. Assuming you are at average risk, a 20% increase on top of a 12.5% starting risk means an extra 2.5% risk, which equates to 2.5 cases of breast cancers over the lifetime of a hundred women who eat 3 slices of bacon every day for the rest of their lives. Professor of the public understanding of risk, David Spiegelhalter explains this in a video about bacon and bowel cancer.

What to ask your doctor and what to tell your doctor.

wttyd

One thing that would be good for patients to ask their doctor before taking a statin (or any medication designed to prevent some future illness) is, ‘What’s my risk to start with?’ It may not be possible to put a figure on it, but its definitely worth bearing in mind that the higher your starting risk, the more you’ll have to gain from taking the drug and vice versa. It might help to ask, ‘how many people like me would need to be treated for one to benefit?’ There is a great explanation of numbers needed to treat (NNT) here. I would also ask about what are the risks of side effects of the treatment and the numbers needed to harm (NNH).

Other things that are often overlooked are,

  • What do you know?
  • What is your interpretation?
  • What matters to you?
  • What are you afraid of?
  • What are you (not) willing to do?

These are questions that a good doctor should ask you, but often they won’t, perhaps because they weren’t trained that way. They’re taken from Atul Gawande’s book, Being Mortal. It took him almost 20 years to realise how important they are. They help you build a partnership with your doctor to answer the hardest clinical question of all, ‘what should we do?’

Be careful what you ask for

refscan

It may be tempting to skip the GP and go straight to a specialist, but the specialists’ diagnostic powers depend in part on the GP referring them only patients who have a significantly higher than average risk of disease. Brain surgeon Henry Marsh wrote that the experience he had gained by the end of his career made him much more cautious about who he operated on. Young specialists tend to be keen to intervene and tend to overestimate the value of their interventions. It’s tempting for patients and doctors, to skip this difficult, getting-to-know one-another phase and go straight for a scan or a referral, but without context and background information it can be extremely difficult to interpret results. For example, by the age of 50, 80% of people with no symptoms of back pain will have ‘disc-degeneration’ on an MRI scan.

Once you’ve told the GP about your problem and they’ve examined you, they will often wait and see. When Voltaire said that ‘the art of medicine consists of amusing the patient while nature cures the disease’ he was, for most conditions absolutely right. The most articulate of GPs, Iona Heath has described what we do as The Art of Doing Nothing. But doing nothing may require great strength to bear witness and support patients during terrible suffering, or very serious and careful listening. A good doctor will tell you how long your symptoms should last and make sure you’re seen again promptly if they don’t resolve in the expected time. By now the probability that you’re suffering from something more serious might have increased from 1 in a thousand to one in a hundred or even less. This excellent paper shows you how much time contributes to diagnostic accuracy in general practice and this online tool shows how changing the likelihood that a patient has a condition, radically improves the reliability of medical tests.

Good doctors make it up as they go along. 

Bayes

In the 18th century, Thomas Bayes developed a simple mathematical formula to show how adjusting prior probabilities affected future predictions. Doctors, who do this all the time, have been described as natural Bayesians. The history contributes up to 90% of a diagnosis and most of the remainder is contributed by physical examination and simple tests. Every question in a medical history and every sign in a physical examination changess the prior probability of a particular diagnosis.

Like the cyclists in the presentation, who have prepared as well as they possibly can, but need to be constantly vigilant of changes along the way, doctors are continually reappraising their patients, open to new information and changing circumstances. Good doctors are partners with their patients, sharing information in ways that they both understand, discussing values, risks and uncertainty and creating narratives that make sense to them both … making it up, as they go along.

Further reading:

The James Lind Library

Less is More Medicine

Going the distance

“I have to tell you, good medicine goes the distance with the living and the dead… The dead don’t care much but they do matter. And your presence with those people for whom they matter …  your showing up and pitching in and doing your part, is part of the very best medicine that you’ll ever do.”

Thomas Lynch, Undertaker-poet was speaking to an audience that included many medical professionals at the wonderfully eclectic Dotmed conference in Dublin. His work starts when ours finishes and as he gently reminded us a little overlap might do us all good. His words stuck with me, and were still very much in mind when I got news of John’s death.

At the age of only 29 he died in a motorbike accident just before Christmas. The first thing I did when I found out was to call his sister, Tessa. She was with her mum and they asked if they could come to the surgery, ‘Of course, come as soon as you can’

We met and shared our memories of John and they invited me to say a few words at his funeral. Here is what I said, with some added context and a couple of other memories I didn’t have time to include.

I was John’s GP for 11 years. I work in a practice that has a policy of every patient having their own doctor. Doctors and patients are possessive of, and loyal to each other. I got to know John as a result of asking him to come in for an hour at a time to help teach medical students about eczema. His was pretty severe. But what he taught us was that you can’t really get to know and understand what’s going on with someone’s skin, if you don’t make the effort to get to know and understand what’s going on inside their head. It’s a lesson every doctor with an interest in any organ needs to learn.

I remember the time he came in complaining that he felt ‘weak’. It’s probably the worst thing you can say to a GP because it’s the most common complaint and the least specific. It really isn’t helpful, diagnostically speaking. Inwardly, and sometimes outwardly too, we groan when patients complain of feeling weak. “It’s kind of interfering with my job”, John continued. He was a welder and I imagined him welding panels to the sides of ships. He was thin, but hard and wiry. “OK, OK, I said. Let’s examine you”. I gestured for him to stand up and we stood facing each other. “Now, lift your arms, like this,” I raised my arms out to the sides and above my head. John shrugged his shoulders and with all the strength he could muster, swung his hands up as far as his shoulders. They flopped back down again. ‘oh God,’ I thought, ‘this is terrible’, my fear and frustration came out when I pleaded with him, “Why the hell didn’t you come in sooner, I mean, in what way, exactly is could it possibly not be interfering with your work?!” His understatement had reached an unprecedented level. I called the National Hospital for Neurology there and then, and they said that they could see him in a couple of days. I told him to pack an overnight bag. They kept him in for 2 weeks of intensive investigations and after a couple of years back and forth to their outpatients, eventually he mostly recovered.

Not complaining was typical of John. If he was having a hard time, there was no point asking, ‘how are things?’ because he didn’t like to disappoint you or take up your time. After a while we found our ways of talking about ‘how things were’. Hard as my job is, I suspect it would be a lot harder if more of my patients told me how they were really feeling.

Another thing John taught me was that happiness, good health and self-confidence come from feeling you’re in control. One of the last times we met, he told me he’d been cooking. This was when we were watching Breaking Bad, and I felt a little nervous. I hear a lot of confessions in my line of work but I needn’t have worried, because John had been cooking eczema cream, out of beeswax, olive oil and brine. He had jars of it all over his flat. I tried to coax the recipe out of him, but what he’d really come in to tell me, was that it worked better than anything I’d ever prescribed. As if to prove it he didn’t pick up any of his monthly prescriptions for about six months after that.

What I’ve learned from John has relevance to almost all my teaching and my practice because it is about what it means to be a good doctor: the importance of listening, of not taking what patients say at face value and the importance of being able to manage without doctors.

What I’ve also learned is that the dead do matter and being John’s GP for just a little longer than I had expected was one of the most moving and rewarding things I have ever done.

Everyday ethics

schonIn the varied topography of professional practice, there is a high, hard ground overlooking a swamp. On the high ground, manageable problems lend themselves to solution through the application of research-based theory and technique. In the swampy lowland, messy confusing problems defy technical solution. The irony of this situation, is that the problems of the high ground tend to be relatively unimportant to individuals or society at large, however great their technical interest may be, while in the swamp lie the problems of greatest human concern. The practitioner must chose. Shall he remain on the high ground where he can solve relatively unimportant problems according to prevailing standards of rigor, or shall he descend to the swamp of important problems and non-rigorous inquiry? Donald Schon, 1987, p.3

Schon was referring to reflective practice, as very nicely described by Clare Morris on the Medical Education Matters blog. But he could just have easily have been talking about medical research or, the subject of this blog, medical ethics education.

A review of ethics curriculae in 2000 concluded that, there is a consensus that the ultimate goal of medical ethics, and indeed of medical education as a whole, is to create ‘good doctors’ (Goldie, 2000)

This surprised me and will probably surprise most medical students. Not only does medical ethics play a relatively small role compared to traditional subjects, but it is still possible in many medical schools to graduate without passing ethics assessments. Even when students do pass it’s relatively easy for a bright student to know what to say irrespective of whether or not they believe it, and even if they do believe it, the links between ethical thought and ethical action are tenuous.

What constitutes a ‘good doctor’ may at first to appear somewhat nebulous, but conceptions have been remarkably consistent. Whitehead studied discourses of the ‘good doctor’ over the last century and described them as a carousel, with different aspects rising and falling in prominence. To take one example, apparently contemporary concerns about the lack of humanity in care were also around in 1927 when Francis Peabody wrote in a keynote to Harvard Medical School,

“The most common criticism made at present by older practitioners is that young graduates have been taught a great deal about the mechanism of disease, but very little about the practice of medicine – or, to put it bluntly, they are too scientific and do not know how to take care of patients.” 

What is required to be a ‘good doctor’ is also context dependent, for example there will be times when technical competence takes precedence over sensitivity or quick decision-making takes precedence over patience.

The most interesting work about what it means to be a ‘good doctor’ is being carried out be Charlotte Rees and Louise Montroux who are studying medical students conceptions and experiences of professional behaviour. Unsurprisingly perhaps, students tend to think about professionalism in terms of individual character and action, rather than more general terms, such the GMC ‘Duties of a Doctor’ or the succinct 2005 Royal College of Physicians definition of professionalism,

A set of values, behaviours, and relationships that underpin the trust the public has in doctors.

The contrast between institutional definitions and medical student experiences of professionalism (and the ‘good doctor’) is perfectly described by Donald Schon’s quote above. An overemphasis on teaching principles has left medical students, professionals and patients sceptical about whether we are serious about helping students and doctors to ‘be good’.

A brief history.

For the first half of the twentieth century there was little or no concern with educating for professionalism- a medical ethics reliant on etiquette and paternalism was assumed because a doctor was ethical by virtue of the being the kind of ‘gentlemen’ that doctors were, and medical ethics was not a subject that could be studied as, “One acquired it in the course of learning to become a good doctor,”

Doctors were assumed to be ‘good eggs’ and that was reason enough to dismiss attempts to introduce anything resembling professionalism/ ethics or communication skills training. The problem with this approach was the rather obvious fact that there had always been ‘bad eggs’. Medical ethics education was slowly introduced in the 80s and 90s, but it’s still possible to graduate at the end of medical school without passing exams in medical ethics. Even if a student passed exams in medical ethics it was highly doubtful that knowledge of ethics translated into ethical action anyway. Among the profession, the problem of scandals involving ‘bad eggs’ in recent years caused such a stink that the laissez-faire approach to professional self-regulation could no longer be tolerated. And so the state took stepped in and now we have inspections and regulations, appraisals and revalidation which have demoralised professionals with administrative burdens while doing nothing to improve professionalism or restore public trust.

It has become increasingly obvious that neither medical ethics education, nor professional laissez-faire self-regulation, and certainly not state bureaucratic inspection and regulation are contributing to professional, ‘good’ doctors.

How to become and stay, a professional, good doctor.

The 2010 Royal College of Physicians, Future Physician report said,

We call on all doctors to recognise that medical professionalism in a changing world looks beyond the boundries of medicine. (RCP, 2010)

The first, and most important thing to do is realise that being a professional good doctor more than anything else, is in order to benefit patients and society. According to George Bernard Shaw, ‘all professions are a conspiracy against the laity’, and the medical profession is singled out as ‘a conspiracy to hide its own shortcomings’. This is still a popular belief and can only be addressed if professionalism is conceived, taught and practiced in partnership with patients and the public.

The most important part of partnership is humility. The definition of evidence-based medicine as the integration of scientific evidence with professional expertise and patient values, demonstrates the paternalism that still dominates medical thinking. Missing from this conception are the professional’s own values, the patient’s expertise and the expertise and values of other important stakeholders such as family and carers. Putting our own values into perspective can be achieved by values Based Practice. Narrative medicine teaches us narrative humility, the awareness that patients have not only medical, but also personal histories and the awareness that illnesses fit into the context of real lives.  Teaching about epistemic justice reveals that patients have ways of interpreting illness, suffering and medical interventions that are of profound importance.

Awareness that  our own, medical perspective is only one of many requires us to engage with voices and opinions we might not come across in our usual practice. Social media offers huge potential because it is here that people using blogs, Facebook, Twitter and so on are writing their own stories about their experience of illness, suffering and overcoming and about healthcare and professional behaviour. Conversations between patients and professionals are challenging and reinforcing conceptions of professionalism, the good doctor and the good medical profession.

Remaining professional and being good in the ‘swampy lowlands’ of clinical practice requires career-long sustenance. Narrative-based supervision combines aspects of narrative medicine and clinical supervision in a form that students and professionals can use to support each-other with the ethical problems they face every day. This gives greater emphasis to the importance of teamwork, shared responsibility and learning, and mutual support that makes participants active in their own professional identity formation. A model of group support that enables staff of all backgrounds and levels to come together and talk about how they are affected by caring for patients, called Schwartz rounds, is already taking place at over 300 English NHS institutions. Both narrative-based supervision and Schwartz rounds allow more senior professionals to take on the role of supervisee, so that in so doing they role-model clinical uncertainty, ethical difficulty and professional vulnerability, in short – humility.

Traditional ethics, based on principles and case-based discussions should not be abandoned. It comprises part of the instructional scaffolding  necessary for deeper learning and ethically informed practice. Combining technical expertise with moral sensitivity is the art of medicine known as practical wisdom or phronesis.

Combining medical ethics with practical humility would be a sound basis for training, nurturing and sustaining professional, good doctors now and in the future.

What is healthcare for?

Review of Humanising Healthcare by Margaret Hannah

“Who and what is the healthcare for?” is a deceptively simple question, and it’s one which Margaret Hannah has tackled with courage and compassion. At its heart is a conception of health that is based on positive relationships, itself a radical conception in the face of a post-war consensus of individual rights and individual autonomy. She describes the origins of the Pioneer Health Centre in Peckham,

Back in the 1920s a pair of doctors in South London broke ranks with their peers in deciding to discover the enabling conditions that might lead to health rather than the patterns of disease. They found that the key to good health was family and friendship: it was impossible to be healthy alone.

The importance of relationships runs like a golden thread through this book, and with the challenge of an ageing population who fear becoming lonely and a burden more than death itself, this is a message that will resonate strongly.

In his third, and strongest Reith lecture, US surgeon/ writer Atul Gawande turned to the theme of his latest book, Being Mortal. He interviewed over 200 people and families for whom the end of life seemed pressing as well as people specialising in end-of-life care and distilled their wisdom down to two important themes. The first was that we need something outside of ourselves to live for. He gave examples of nursing/ residential homes that introduced pets and plants for the residents to take care of. Being the carer – and not just the cared-for gave them a new lease of life. As Hannah puts it,

We all need something to get out of bed for in the morning. In a metaphorical sense, meaning and purpose are like vitamins and their lack curtails life and flourishing. Meaning and purpose cannot be achieved alone but are built with the hope and belief of others.

Gawande’s second insight was that healthcare professionals need to ask patients about their goals and what really matters to them, and then tailor our medicine to help them achieve that.  This is an aspect of what Professor of General Practice Ed Piele calls Values Based Practice. A serious clinical consultation isn’t just an exchange of facts, but a mutual exploration of values which are frequently messy and contradictory – a world away from clear-cut, simplistic clinical guidelines. Psychiatrist and ethnographer, Arthur Kleinmann highlights the problem,

As patient and primary caregiver for a wife who is in the terrible terminality of Alzheimer’s disease, practitioners and even family members are better prepared by our culture and our health-care systems to express and respond to lists of stereotypes and clear-cut rules than they are ready to deal with divided emotions and hidden values.

Kleinmann argues that we need to teach healthcare professionals skills at critical self-reflection on the complexity and irony of what really matters. Gawande says that we need to ask patients what they understand, what matters and what sacrifices they are, or are not willing to make. This isn’t as easy as it sounds. In one study Gawande quotes, less than 30% of patients and families expected to die within four months had these conversations about what matters with their medical teams. Patients and physicians will recognise that awkward moment in a consultation, when it’s clear the treatment isn’t going well and values are hanging in the air, aching to be pulled down and spread out, but instead of dealing with them, the doctor turns to the computer and says, “I’ll just check the guideline…” Hannah gives an example of a doctor who has changed his practice to put values at the centre of care, describing the tendency to revert to his old disease-centred ways, he confesses, “I am a recovering physician” 

In Humanising Healthcare, Hannah says that we urgently need to ask what we understand, what matters and what we’re willing to do, not just with our patients but with our healthcare system. We need, as the other authors also argue, to get our values on the table. There will be consensus and dissensus, it won’t be easy, but we cannot go on as we are. It’s not just that we’re unlikely ever to be governed by politicians who will raise taxes to spend ever more on healthcare, but there are more fundamental problems with a healthcare system designed around diseases rather than people.

Prof. Trish Greenhalgh reckons that multi-morbidy will be Evidence Based Medicine’s nemesis, like weather forecasting, every new diagnosis and changing social context is a complexity multiplier. Now we live for years with heart, brain, lung, neurological etc. diseases that once would have killed us. Evidence based on single diseases becomes ever-less certain in the face of multi-morbidity. Multiple specialists, clinics and medications add up to an intolerable burden of care. We need specialists in people and relationship-based care, now more than ever.

Hannah explains how a system of healthcare based on shared values and meaningful relationships can be created by describing the development of the South Central Foundation (SCF) healthcare system in Alaska,

Realising that nothing short of a radical reform would both improve services and control costs, SCF … undertook a two-year community listening process to find out what the people really wanted from their health service and how they wanted to be treated. Then they delivered it.  

Few places in the world have the opportunity to start afresh, but evolving ourselves out of the mess we’re in is likely to result in more fire-fighting just to survive until the next financial year. Hannah describes a three horizons model of change. The first horizon is where we are at present and the third is where we would like to be. The second horizon is where these competing visions collide, a zone of numerous initiatives and innovations. Like conversations about values with patients, these collisions will be difficult, but we have to get our values on the table in order to have a vision about what kind of healthcare we want. And if it is healthy relationships and compassionate care that we want, then continuity of care, minimally disruptive medicine, values based practiceresisted medicalisation and patient involvement are a few of the things happening right now that we can carry forward.

Humanising Healthcare is a book that makes us think, ‘what does it mean to be healthy and what do we want from healthcare?’ It reminds us that medicine is only one of the ways to good health. What she thinks, and I agree, is that we need a healthcare system that supports healthy living and healthy relationships, one that calls on medicine only when it’s needed.

 

 

What are we afraid of?

Review of

Atul Gawande: Being Mortal: Medicine and What Matters in the End. Profile Books

Margaret McCartney: Living with Dying. Pinter and Martin

First published on BMJ Blogs

Surgeon, professor, and best-selling writer Atul Gawande confesses, half way through his new book, Being Mortal, ‘I felt foolish to still be learning how to talk to people at this stage in my career’. Like every conscientious, solution-focused surgeon he has found an answer by way of a simple, honest phrase to share with his patients, ‘“I’m worried.” ‘They were such simple words’ he says, ‘but it wasn’t hard to see how much they communicated.’

The patient might very well respond, ‘But I’m the sick one, what the hell are you worried about?’ This is an excellent question. Among the things doctors worry about is their own mortality and their inability to cope when they cannot cure. In 2012, Professor of General Practice, Keiran Sweeney found out he had incurable lung-cancer by reading his hospital discharge summary at home. He believed that the other doctors hadn’t told him because, ‘they were afraid to confront the metaphysics of my predicament, I am a man without hope.’ Many doctors are afraid to confront death, and others cannot bear to bear witness to suffering they cannot relieve.

One of the other things doctors worry about most is uncertainty, and as Iona Heath has recently argued, failure to manage uncertainty is an important cause of over-treatment, at the end of life especially. Faced with the question, ‘How long have I got, doc?’ doctors are particularly unsettled. Not wanting to disappoint their patients, or perhaps suffering over-inflated opinions about their treatments, many cancer-specialists tend to over-estimate life expectancy. But the disease of the modern age isn’t just cancer, where life expectancy is hard enough to predict, so much as multi-morbidity, the accumulation of several long-term conditions of which cancer may be one. Any single morbidity can deteriorate at any time, causing the others to buckle under the strain, but with intensive medical intervention you may be brought back to life; or not. You might survive for days or years. The awful truth is that we cannot tell how long you’ve got, and as Margaret McCartney explains at the beginning of her book, Living with Dying, life expectancy isn’t a problem that science looks likely to solve for the foreseeable future. Her previous book, The Patient Paradox was, among other things, a warning against the false predictive certainty of screening, and in Living with Dying she urges continued caution at the end of life. McCartney is a GP who works at the interface between suffering and disease where symptoms frequently defy explanation and the course of action is negotiated in the consultation between doctor and patient. For a conscientious GP, a consultation is as much of a skill and a matter of pride as an operation is for a surgeon. This is why GPs devote a considerable part of their training to consultation skills while surgeons are practicing their technical skills.

Remembering his communication skills training from medical school, Gawande notes that we have moved from Dr Knows-Best to Dr Informative, from paternalism to consumerism. But patients are neither children nor customers, despite the insistence of old surgeons and young policy makers. They are, unless they choose otherwise, our partners in care. Making the shift from Dr Informative to Dr Interpretive (I prefer ‘interested’), Gawande noticed that he was doing a lot less talking and a lot more listening in his consultations. Carefully eliciting our patients’ understanding of their condition, what matters to them, their goals, and how far they are willing to go down a medical route to achieving those goals is, or ought to be the aim of any consultation, not just those pertaining to the end of life. We wouldn’t expect a surgeon to be as skilled in the art of consulting as a GP, any more than a GP would be able to perform surgery, but a decision to operate, without exploring a patient’s values may be the wrong decision.

Much has been made of a tendency to medicalise the end of life, but both authors are clear that medicine still has a lot to offer. Many diseases can cause frightening and agonising deaths and good medical care, especially palliative care has a lot to offer. The last chapter in Gawande’s book, about his father’s death from spinal cancer is particularly harrowing, especially because his pain appeared to be so poorly controlled. I couldn’t help wishing he’d had better palliative care and a subcutaneous morphine pump. Symptom control can be very difficult and I think McCartney is right to be sceptical about the emphasis on helping people die at home. Some of us will require more help than others, and she is right to say, ‘how we die may be more important than where we die.’

Another consequence of medicalisation is to treat death as an illness. Because illness is embodied, a war on cancer or against death becomes a war on people with cancer or a war on the dying. It is an objectionable metaphor, but disturbingly apposite, and both Gawande and McCartney describe patients who suffer the full, brutal, futile force of fourth-line chemotherapy and cardiopulmonary resuscitation attempts. Freud balked at the ideas of doctors practicing psychoanalysis, as they would attempt to cure, rather than illuminate psychic suffering. Around the same time, in 1927, Francis Peabody wrote, ‘The most common criticism made at present by older practitioners is that young graduates have been taught a great deal about the mechanism of disease, but very little about the practice of medicine – or, to put it bluntly, they are too scientific and do not know how to take care of patients.’ In Being Mortal, Gawande writes, ‘We’ve put ourselves in the hands of the medical profession, valued more for their technical prowess than their understanding of human needs.’ We are still not very good at shifting our efforts from curing to caring or even providing both together.

Both books are, in fact, less about how we manage death, than how we care for the frail elderly, who with their multi-morbidities, may have years yet to live. As McCartney explains, frailty is a more reliable prognostic indicator than any medical diagnosis, but there is no drug or technical solution for frailty. My father saw both of his parents and his younger brother, suffer terrible psychotic, personality destroying dementia. Like many elderly people he fears losing his dignity, and his personality, being in pain or being a burden on his family more than death. And yet, as arthritis, heart and stroke-disease, diabetes and dementia take their toll, his greatest fears are unavoidable. And it is on my mother, above all, that the burden of care has fallen. At least he has his family and mostly, though his hearing is poor, his senses. Many elderly people are very lonely, without friends or family, or shut off from the world by the loss of their senses. As the proportion of elderly people rises and families become more fragmented, inter-generational age-gaps widen and austerity bites, the burden on care-givers will inevitably increase. Our inability as a society to provide sufficient resources for this is reason enough to fear aging more than death. The inspirational care-home menageries and independent living schemes Gawande describes are not the places most of us will spend the end of our lives. Carers are poorly paid (if at all), poorly trained (if at all) and for the most part under-supported, but no political party is willing to increase taxation to pay for better care.

With this grim thought in mind, we cannot avoid thinking about assisted dying (AD), though as McCartney, the more political writer says, ‘if we are fearing our death, let us at least not fear the things society can and should provide’. In my view, excellent personal and palliative care at the end of life will minimise, but not entirely eliminate requests for AD, but the spectre of inadequately funded care makes me worry that people will chose AD to avoid being a burden.

There are reasons to be hopeful. Gawande will be giving this year’s Reith Lectures and these issues will be given the high profile and public debates that they fully deserve. The Royal College of Physicians Future Hospital Commission has called for more expert generalists and geriatricians who specialise in managing multi-morbidity and care of the frail elderly. Palliative care, where it can be accessed is usually excellent. Many GPs are prioritising continuity of care, in our own practice, the percentage of appointments where a patient sees their own GP has risen from 50% to 80% in 2 years. Websites like Dying Matters and Death Café are facilitating conversations about death and My Ageing Parent is full of useful advice and support.

It is great that these two doctors have bought these issues to our attention. Gawande’s book is an easier read, in part because he is a brilliant writer, but also because he tells us what we want to hear, but it is Margaret McCartney who has long-known what Gawande has only just discovered, who is telling us what we need to hear. It is up to society and politicians to decide if we are prepared to provide the support so desperately needed for our ageing population.

How’s my consulting?

A couple of weeks ago I invited Sarah, another GP in our practice to observe one of my surgeries. All the patients were warned before-hand that another doctor would be there. She watched and listened intensely and took notes as I consulted. Before calling in some of my patients, I explained about their background:

I’ve known Brian for about 7 years, he was diagnosed with Parkinson’s disease when he was just 45, and has had several falls, fracturing his hip and shoulder in the last couple of years. He had to take early retirement and sell his building firm and has been severely depressed. His wife does everything she can to look after him, but she’s at a loss, and to be honest so am I. He’s lost a lot of weight because he stopped eating. I asked the psychiatrists to see him but he hasn’t had an appointment yet. I’ve really been worrying about him.

Being able to describe to another clinician, an experienced, trusted peer, how much I knew about my patients along with my concerns and fears, was really powerful. Like every doctor who values continuity of care I know the majority of my patients, but being given the opportunity to describe them to Sarah, really made me think about how important this is.

So much of what we do in clinical practice is done in silence. While I listened calmly and intently to Mehmet my mind was silently whirling, trying to identify clues that might help me make sense of his constellation of symptoms and the investigations he’d been through and medications he had tried. So much of general practice is spent in the ‘swampy lowlands’ between suffering and disease, where symptoms are far easier to describe than to explain. The tools of our trade: protocols, pathways, guidelines and diagnostic categories can be applied to a minority of the problems our patients present with. Multimorbidity is the price we’re paying for longevity, so we can now survive with an array of diseased organs, but they’re intricately connected; a drug for one is poison for another, and if one fails the others struggle to take the strain, in often unpredictable ways.

But working in isolation, we rarely articulate the uncertainty that characterises so much of our work. The limits to how much we can tolerate move in and out with the tide of our resilience. Confidence and strength, far from being sure of the answer, is being able to live with the anxiety of not yet, or perhaps never knowing. My friends and colleagues are more stressed than ever before, and an inevitable consequence appears to be more referrals to hospital where the burden of uncertainty can be shared, a phenomenon already understood. Sarah and I shared the uncertainty, and discussed how to help Mehmet.

I had watched Sarah in a surgery the week before. One of the things she asked me to look for was the way she concluded consultations, she wanted to know how to conclude a difficult discussion with one patient and not keep the others waiting – we have only 12 minutes for each appointment. I had written recently about how we give reassurance, whether we do so for our benefit or our patients, and how giving confidence might differ. I took notes and we discussed how she worked, how patients responded, where she thought it went well, and how it might go better.

Opening your practice up to close scrutiny and learning from the experience, means being able to say, ‘I’m struggling with this’, it’s not about showing off, so much as exposing yourself. The majority of doctors never do this. To do this requires trust; that the person you’ve invited in, understands what you’re trying to do and that they are there to help. John Launer’s wonderful work on clinical supervision, teaches us that a very powerful way to help one-another learn is by curious questioning – helping the person you’re supervising to think deeply about the way they’re consulting. He concludes,

Collectively, good conversations can be transform a working culture from one that is technocratic, impersonal and potentially dangerous, to one that is both kinder and safer.

The Berwick and Francis reports into poor patient care at Mid Staffordshire hospital recommended above all, that patient safety depends on lifelong learning, aware perhaps, that the features that unite under-performing doctors are isolation and lack of insight. Sadly all of the emphasis has been on more regulation and inspection and the experience of many clinicians is that they have less time for education and are less supported than ever before.

US surgeon and writer, Atul Gawande argues convincingly that the most experienced doctors can benefit from coaching in the same way as professional sportsmen and women do. Gawande, an experienced surgeon, was used to operating independently, without supervision, but invited a respected colleague to watch him perform a routine operation. His colleague made several critical observations that made Gawande realise that unless supervision is required or actively solicited, opportunities to improve the quality and safety of patient care will be missed.

We owe it to our patients and each other to open ourselves and our practice up to our peers who can provide education and support in equal measure. Clinical supervision should be for life, we cannot afford not to make time for this.

Postscript.

Several people have asked how we found time.

We both came in on our half-day to observe, in our free time. This isn’t sustainable, but it was far more valuable than many (most) conferences or ‘educational’ meetings I have been to, and I would happily use some of my study leave to do this in future.

How much do you cost the NHS?

First published on Open Democracy

Tory MP Jesse Norman has come up with an idea to send everyone who uses the NHS an Annual Healthcare Statement. It is designed to dissuade people from presenting to hospital or GP surgeries unnecessarily by showing them how much they have cost the NHS and ‘by implication the value of NHS services’. The report goes further to suggest that ‘more incentives’ could be added in the future.

Fear that a free NHS would result in overwhelming demand has been around since the very idea of an NHS and has been superbly deconstructed by Julian Tudor Hart. Politicians and economists couldn’t believe that free healthcare wouldn’t result in unsustainable demand and in a panic, introduced prescription charges which led to Nye Bevan’s resignation.

In 1951 the first postwar Conservative government set up a Royal Commission to measure abuse and extravagance. After painstaking studies the Guillebaud Commission found no evidence of either, only hard-working staff and stoical patients, underfunded and lacking investment.

Study of a poor inner city area in the early 1970s showed that for each person who consulted with a minor problem, more than two others failed to consult at all, despite recent severe or worrying symptoms. Contrary to subjective impressions of overworked doctors, fear and denial of illness were more powerful than avidity for free consultations. Despite free universal access to the NHS, for most important chronic conditions less than half are medically recognised, of which roughly half are treated, and roughly half of these are controlled. Far from expecting infinitely, NHS patients expect too little.

The most vulnerable patients already fear that they are a burden on the NHS and consequently attend too little, or fail to attend because they are feeling ashamed, or even because they are feeling too unwell. Parents of young children feel strongly influenced by a sense of responsibility to act as competent parents and the fear of overwhelming guilt should they fail to do so. And consequently feel ashamed and stigmatised if they are made to feel they are wasting professionals’ time. I have had a patient present with a breast cancer that had almost completely destroyed one breast, another that had a stroke but waited 3 days until they could see me instead of going to A&E, and another who ended up on a ventilator because she thought she was wasting NHS resources because her asthma is so difficult to control.

For the last two years GPs have been required to review their patients who attend out of hours, A&E and the GP surgery most frequently in order to try to identify whether they can be better cared for. The majority are very sick with severe heart, lung or neurological diseases, often requiring intensive treatment. I can think of one patient who spent 6 months in hospital with recurrent perforations of his intestine due to his Crohn’s disease.Under Jesse Norman’s proposal patients like him would be presented with the highest bills. Others have serious mental illnesses, sometimes compounded by illicit drug or alcohol use.  There are certain groups of patients who attend frequently, who on superficial analysis might be assumed to be attending inappropriately. Some of them are suffering from ‘medically unexplained symptoms’. These are physical symptoms like chest and abdominal pain, headaches, blurred vision, numbness and tingling, weakness and so on. In some cases they represent serious, difficult to diagnose disease, and in other cases the symptoms are a manifestation of unresolved, and often unresolvable psychological pain.

Other groups that frequently attend are patients who are extremely anxious, those that are suffering domestic violence, those that have been abused and the the very lonely. Experienced GP John Launer has asked, ‘What is an emergency?‘ He recalls diagnosing a child with meningitis who appeared, at the time they came into his surgery, entirely well. He continues,

I will happily accept having seen tens of thousands of mildly snotty toddlers over the years, giving their anxious parents a bit of friendly advice and education, and seeing them on their way in less than 5 min. We cannot, in other words, preach the importance of our own expertise and at the same time berate people for making use of it.

Jesse Norman said to me this morning, that it would be very easy to see a GP reviewing an annual account with a very vulnerable patient and encouraging better use of services with better outcomes. He said that it would be ‘especially valuable to the most vulnerable patients’.

When we meet with our most vulnerable patients, we spend the time trying to work out how best to help them. Usually we know them very well, because they come to their GP a lot as well. I have a pretty good idea about the impact of an Annual Statement. It will almost certainly add to their sense of being a burden on society and the NHS, something that they already feel. It will add to the anxiety parents of young children feel when they try to identify the goldilocks zone where their child is sick enough to warrant medical advice, but not so sick that they’ve left it too late. It will encourage a superficial view of healthcare as a commodity, rather than care as something complex that happens between people. Something recorded as a minor illness on a hospital letter happens to someone with a history and a home-life, hopes and fears. Once you start to understand these, you might come to the conclusion that there’s no such thing as a trivial consultation.

Which coincidentally was the first blog I ever wrote.