On biography, cancer and Richard Doll

I’m a sucker for the lives of great men (and, occasionally, women) of medicine.  It is particularly the case of those in the twentieth century, whose lives are punctuated with big moments, from the great depression to active service overseas in the second world war to the formation of the NHS shortly after.  Theirs is a time of quiet heroism and lives well lived – before you even come to their impact on health and science.  There seems to be that much more space for these individuals to make their mark on history.

So I turn to the exhaustive (and, to be honest, rather exhausting) authorised biography of Richard Doll, the clinical epidemiologist who shifted our thinking on the links between smoking and lung cancer (http://www.signalbooks.co.uk/2014/07/smoking-kills/).   Some I knew but much I didn’t know – the paradoxes of an introverted product of the establishment who kept a thirty year commitment to communism (and longer adherence to its ideals).   Staunchly socialist and democratic, yet with the patrician air of his class making him “a very scary person to be around” and intimidating during ward rounds at the Central Middlesex.  The man who was reprimanded in the army for drinking with non-commissioned officers and yet who introduced his housekeeper of forty years by title only.  You can see the difficulties for the biographer in capturing this intensely private, reserved man.  There is a slightly plodding style in this long, chronological account but the times and his life of science speak for themselves.

We hear of Doll’s attendance on the Jarrow marchers in the hungry thirties, with the poignant detail of him witnessing one man extracting ham from his sandwich to send to his family.  His near-miss with death at Dunkirk.  Like Archie Cochrane (http://taralamont.blogspot.co.uk/2014/05/on-failing-well-archie-cochranes-other.html), who showed similar political commitment, he was an early proponent of the scientific method and spirit of experimentation – for instance, just after enlisting, carrying out a small randomised trial of prophylactic use of sulphonamides to prevent wound infection in his fellow soldiers.  His love of mathematics and tutelage under Austin Bradford Hill, combining a flair for statistics with clinical knowledge and experience to forge a new (or, at least, fledgling) discipline of clinical epidemiology.

The big story of course is the series of studies, starting with the 1950 BMJ paper by Doll and Hill which concluded that “smoking is a factor, and an important factor, in the production of carcinoma of the lung.” http://www.bmj.com/content/2/4682/739  At the time, received wisdom suggested atmospheric pollution as the most likely cause and the association established in this study took some time to take hold in professional and public worlds.  The evidence journey was indeed a long one from publication to impact.

This is interesting enough as a story.  But the biographer makes rather hard work of it, for some reason devoting a whole chapter to explaining common statistical techniques (who is he writing this for?).  And yet I am grateful for the many delightful incidental details which he has uncovered.  Who could forget those marvellous side characters such as Somerville Hastings, the ENT surgeon who became a Labour MP and `father of the NHS’ in the post-war period or Horace Joules, tireless advocate of Doll’s research amid great professional and industry scepticism (and damage to his own career).  Or the Conservative minister presenting a press conference on what he called the `ambiguous’ findings of links between smoking and health, chain-smoking throughout.  And who knew that Nazi Germany was an early sponsor of research into links between smoking and cancer and then introduced an effective public health policy of banning smoking in public places some seventy years before the UK?

So, my mind snags on the details.  I have the image in my mind of Doll, marching to Ladbroke Grove with a black baby in his arms, as one of the few white people to join a protest after the racist murder of a young black man in west London in 1959.  But one wades through 454 pages to get there.  You can understand why the chronological individual biography is falling out of fashion.   I happened to be reading at the same time, the brilliant book “The Emperor of Maladies” by Siddhartha Mukherjee (http://www.4thestate.co.uk/tag/emperor-of-all-maladies/).  Its ambition is no less than to present the biography of cancer.  It is a bravado sweep of history, from the first recorded case of a mastectomy in a 500BC Persian queen to the more recent advances, such as Sidney Farber’s development of chemotherapy in the last century.  His genius trick is to yoke together these accounts in their complex social and political contexts with stories of his own cancer patients or developments in the laboratory.  Like Atul Gawande, he combines clinical insights with fine writing and humanity.  He also gives cancer itself an identity (hence, his decision to sub-title this a biography) and shows how different moments and movements have shaped our understanding of the disease.   Richard Doll and his work gets more than a passing reference here.  But reading these two books together, I am struck by the way in which Mukherjee has used the real skill of biography to bring to life his subject and make it compelling to the reader.  We need stories as well as science.

This blog also appears on BMJ guest blogs at http://blogs.bmj.com/bmj/2014/10/27/tara-lamont-on-biography-cancer-and-richard-doll/

Health services and research – difficult decisions, rich debate

There were no ivory towers at last month’s Health Services Research Network symposium in Nottingham.  Researchers were getting down and dirty, grappling with pressing problems from urgent care to patient experience in surgery to safer discharge planning.  I was struck by the interjections from senior leaders – with seasoned chief executives like Peter Homa giving his thoughts on measuring quality (following Nick Black’s barnstorming critique of HSMRs) to Simon Pleydell noting that struggling organisations often just don’t know what good looks like.  There was a note of buoyancy from Gary Ford on the role of AHSNs in pushing forward evidence-based innovation – and his own experience as a stroke physician of how research can inform service change for the good.

But elsewhere optimism was thin on the ground.  In a plenary session on integrated care, Martin Roland reflected wryly that he could well be dubbed the professor of what doesn’t work.  He took no pleasure in enumerating the many reasons why promising innovations to integrate care often failed to live up to the promise in rigorous evaluations – from regression to the mean to difficulties in attribution and causality.  I was thinking of this in the recent controlled evaluation of Birmingham OwnHealth by Adam Steventon and colleagues (http://www.bmj.com/content/347/bmj.f4585) – despite much championing in the service, this plausible initiative to promote self-care by motivational coaching showed no impact on health and service use (indeed, a slight rise in admissions).   This was all very topical, given the Better Care Fund initiative and difficult local decisions on how best to join up services and support people with complex needs.

There was an interesting debate on why research so rarely gives managers the `good news’ stories they crave.  And why the NHS is so bad at valuing failure or remembering what went before – in the words of Rudolf Klein (cited by one speaker), innovation is just a function of forgetting.  Could researchers work more closely with service leaders at an early stage to clarify the aims and programme logic of new system changes?

And yet, and yet.  In the packed parallel sessions, buzzing coffee breaks and stimulating plenaries I sensed not defeat but invigoration.   To take just one example, in the session which I chaired on workforce, three HS&DR funded projects provided brilliant examples of just how research can provide findings which really matter to managers, clinicians and patients.   This ranged from hard evidence on the effectiveness of multidisciplinary teams (too many cooks can spoil the broth or dilute the effectiveness of care planning); to practical recommendations on how best to recruit, support and develop peer workers in the half of mental trusts now using them; to physician assistants as cost-effective and acceptable addition to ease general practice workloads.

So health services research has much to offer.  And it seems that the NHS (from the new chief executive down, whose recent address to the NHS Confederation was seen by many as signalling a renewed commitment to evidence and research) is really ready to listen…

Why I'm looking forward to this year's HSRN symposium

It’s the week before HSRN symposium (http://www.hsrnsymposium.co.uk) and I will go with a sense of excitement, anticipation – and a heavy heart.  I know in advance I will not get to see all the sessions I want.  There are too many difficult choices.   But what a good dilemma to have.

In every parallel session, the presentations (shortlisted from a wider pool) promise fascinating insights into the pressing problems facing those using, working in and leading services today.   Here are just a few of the ones which interest me:

·         What are patients’ experiences of single-room hospitals?
 
·         What factors influence patients having to come back for revision surgery?

·         How did whole system stroke changes in organisation play out?

·         What can the NHS learn from industrial safety cases?

·         Why are there such large differences in avoidable emergency admissions?

·         How can multidisciplinary team meetings be more effective?

·         Can physician assistants take the strain off GPs?

·         How do patient-reported outcome data affect performance in surgery?

·         How can hearing peoples’ life stories improve dementia care?

·         What did the early days of CCGs look like?

·         Can we measure harm more effectively?

·         What have we learned from the ambitious whole-region pay for performance schemes?

So, I go prepared to be disappointed.  But knowing that I will come back refreshed and stimulated from the presentations, conversations, exchanges and debate in the one must-go health services research event of the year.

On failing well - Archie Cochrane's other legacy

I have been reading Archie Cochrane’s account of his life and work (not in general print – but I got it from the Cardiff University archives for £14.99 - http://www.cf.ac.uk/cochrane/index.html).  It is not at all as I expected.  Although there are elements of autobiography in the classic, seminal monograph, `Effectiveness and Efficiency’, these are anchored to the main, compelling argument for evidence-based medicine.  So, famously, he recounts his experience as a doctor in prison of war camps where, to his surprise, the lack of available treatment did not equate to bad outcomes.  He concluded that not enough was known about what worked, leading to `Archie’s law’ (as I have coined it) – “always assume that a treatment is ineffective unless there is evidence to the contrary.”  So much, so known (although the power of the argument still has the capacity to stun even now).

What surprised me though in the memoir is the tone of it – honest, to the point of painful, spiky and personal.  There is the unvarnished account of frustrations – taking six years longer than standard to qualify as a doctor.  This was not only the diversion to join the international brigade in the Spanish civil war (what a generation), but also an abandoned PhD and some years following his Jewish analyst in exile across pre-war Europe.  He is candid about some of the personal problems which led him to seek this help and thwarted, it appeared, his adult relations.  He attributes some of these difficulties to his early years with a distant, Calvinist upper class family. 

The frustrations were not only personal.  This book also charts his work after the war in running a pioneer epidemiology unit in Wales.  In one of his chapters he talks about a `decade of failures’ in his two valley research, which never quite achieved what he imagined in understanding the aetiology of pneumoconosis.   And he also expresses a feeling of shame in his long stints as sole medical officer of a series of prisoner of war camps – at having in some ways bypassed the `real war’ or the glittering medical career of his contemporaries.  Indeed, his account of his wartime experiences focuses on sorting out food parcels and digging latrines.  Another kind of heroism.

The tone throughout is humane, self-searching and challenging – of himself as well as others.  He saw himself as outside the establishment.  A brilliant story which gives you the measure of the man is in his evaluation of the new coronary care units.  A trial was set up comparing these with care at home, although the cardiologists were loath to subject such self-evident effective treatment to such scrutiny.  As Cochrane says (p211):

“The results at that stage showed a slight numerical advantage for those who had been treated at home.  It was of course completely insignificant statistically.  I rather wickedly compiled two reports, one reversing the numbers of deaths on the two sides of the trial.  As we were going into committee, in the anteroom, I showed some cardiologists the results.  They were vociferous in their abuse: `Archie’, they said, `we always thought you were unethical. You must stop the trial at once…’  I let them have their say for some time and then apologised and gave them the true results, challenging them to say, as vehemently, that coronary care units should be stopped immediately.  There was dead silence and I felt rather sick because they were, after all, my medical colleagues.`

So, no clubbable man he.   Even a colleague he respects is described as `overweight… rude, bad tempered’.    This impatience with colleagues, combined with deep empathy for patients (from the Russian tubercular prisoner dying in his arms in one camp to the rather cranky distant cousin who he tenderly cares for at home) shines through on every page.   Although never married, he created a wonderful home and garden which became a refuge for many – including the rather cranky distant cousin and companion who were cared for by him to the end.  There is something about the unconventional but far from solipsistic life.   And an unwavering commitment to scientific method (to the comic extent of tracking down all family members at a funeral for faecal samples in tracing a hereditary disease)  and frustration with the rituals and norms of medical practice.  And this is perhaps part of his greatness – his ability to shape medical science.  And perhaps be a disruptive innovator, in Christensen’s terms [http://www.claytonchristensen.com/key-concepts/].  His struggles, his chequered life story had as much a part to play as his undoubted intellectual vigour and vision.

This chimes with another `great life of medicine’ which I was thinking about – Cicely Saunders.  I haven’t  read her letters or biography,  but from the BMJ short profile [http://www.bmj.com//content/suppl/2005/07/18/331.7509.DC1], I was struck by parallels with Archie Cochrane.  Born to a privileged but cold and distant family, plagued by chronic back pain, finding affinity with the marginalised (including the thread of significant Polish men) and quietly defying convention by living in shared housing with friends even after marriage.  Hers was  a protracted path to qualified doctor – via social work (hospital almoner) and nursing.  She struggled for acceptance at a time where social and professional expectations were narrow.  And yet it is because, not despite, of these tensions that her pioneering vision of palliative care – and her understanding of `total pain’ - was born.

I was thinking of this as the pressure seems even greater now for our teenage children to make directed choices and compile mini-dossiers of activity and unblemished achievement even before they reach college.  What place for those who need time to stumble, and struggle, and try many paths before finding work where they can make a difference?     

On listening and time to care

My weekly run with a GP friend has become a breathless litany of the ways in which she feels she and her practice are failing patients.  Last week, she resigned after almost twenty years as a GP partner in a deprived part of London.   She left with regret – still loving the doctor-ing, but no longer feeling she can do it properly.   How to shoehorn the various problems of an asylum seeker with secondary syphilis and compound health problems into a ten minute consultation?  Or a woman with depression and crippling arthritis caring for her husband with advanced dementia?

This has become topical with recent focus on the purpose and future of general practice, from the Kings Fund’s conference last month to words from the outgoing RCGP chair last week.  Similar debates have been had about the need to strengthen the general physician role to provide person-centred care in hospital.

At the risk of sounding like a romantic, there is something special about the general practitioner role and its place in British society.  A seminal work is John Berger’s moving, lyrical (almost mystical) short account, A Fortunate Man, shadowing a country doctor in 1950s rural England, accompanied by haunting photographs http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1463119/.  I remember hearing the late, lamented Kieran Sweeney describe a key role of the general practitioner to `bear witness’ to life (and death) events, as well as more technical forms of treatment.  In this vein, Iona Heath’s monograph from nearly twenty years ago is still worth reading for thoughtful reflections on what she calls the mystery of general practice http://www.nuffieldtrust.org.uk/sites/files/nuffield/publication/The_Mystery_of_General_Practice.pdf.    I like her description of the GP’s role in helping the patient to make sense of illness – the search for meaning being something which doesn’t fit well with performance metrics. 

Many have been influenced by the great US clinician/writer (and now TEDx speaker), Rita Charon, who helped to develop the field of `narrative medicine’ that honours the stories people (patients) tell and how to listen http://jama.jamanetwork.com/article.aspx?articleid=194300.    A good doctor should have `the capacity for attention and the power of representation’.  In her book, she starts with the great case story of Luz, who she dismisses as a time-waster before understanding the reality of her underlying problems in an act of `clinical imagination’.   

In this country, the torch has been carried by many others, including Trish Greenhalgh’s work on storytelling and its place in the clinical consultation http://www.bmj.com//content/318/7175/48.1.  That many of these leading thinkers are women is perhaps no coincidence.  Evidence this month from Karen Bloor’s team in York shows that women clinicians spend longer on each patient consultation (2.24 minutes to be precise)with a more `relationship-building’ style  http://hsr.sagepub.com/content/18/4/242.abstract

So there is good understanding of the power of narrative and interpretation in clinical encounters.   Medical and nursing education is now more focused on improving communication with patients, using ever more sophisticated role-playing, simulation and interactive teaching of `softer skills'.  But there is often little time to truly `honour the stories of illness’ in a system under strain.

I was thinking of all this as my frail, elderly father goes in and out of hospital (currently over a week waiting in a busy medical care assessment unit until a bed comes free) with a host of complex, overlapping problems.  No one seems to have time to ask him how he is and what has changed.  And it is difficult to understand who, if anyone, is holding the ring.    So how can we bring the best of a female-styled Dr Finlay into the twenty first century? 

Also posted on BMJ blogs 14 October 2013 - http://blogs.bmj.com/bmj/2013/10/15/tara-lamont-a-female-dr-finlay-for-the-21st-century