It was the biggest turnout for many a year. In our small coastal town in the north west of England, 5000 of us stood together bare headed for an hour on a magnificently clear but cold November morning. The Salvation Army brass band was muted but played beautifully, and there was pomp and circumstance aplenty. But at the 11th hour on the second Sunday of the 11th month, even small children and dogs fell silent, somehow recognising the importance of the two minutes of silence.
Our own Cenotaph is usually surrounded by the rumble of traffic and the clatter of shoppers. Not so on that Sunday. The traffic was diverted, the shops deserted, the deputy lord lieutenant was in town, and no one was going to miss honouring the 100th anniversary of the start of the Great War.
Why were so many of us there? The 100th anniversary had something to do with it, I’m sure. Perhaps the poppies at the Tower of London had something to do with it too. And, after Iraq and Afghanistan and the 24 hour news cycle, like many I’m probably more aware these days that it isn’t just those who gave their today for our tomorrow; it’s also those who go and come back, and yet carry all sorts of scars for the rest of their lives. It’s personal.
I saw old wives with their jaws set determinedly, pushing even older husbands in wheelchairs; a group of Hells Angels visibly moved; and a little girl who couldn’t have been more than 4 years old, holding a wreath of poppies in one hand and her grandmother’s hand in the other. I’m still not sure who was supporting who. It was personal for them too, and they wanted to mark and share, as did their community.
Fast forward 48 hours and I’m at a conference about atrial fibrillation (AF). We have presentations on the epidemiology of AF and stroke, the pharmacogenomics of vitamin K antagonists, left atrial appendage occlusion, and, of course, all the technical details of the non-vitamin K oral anticoagulants (NOACs). It was scientifically superb, with amazingly intelligent and committed people driving forward better care. This is an absolute requirement for the audience, because now just the stroke prevention aspect of AF has many aspects, has become explicitly preference sensitive, and is highly complex.
I got 30 minutes in the slot after lunch to cover individualised decision making. I tried my best to summarise the Cochrane review, which shows how much patient decision aids improve patients’ knowledge and reduce decisional conflict. I gently presented the data that show clinicians think they do shared decision making already but often they don’t, that three out of four people want at least some say in decisions about their healthcare, and the data that show GPs get the estimate of how much people want to be involved in decisions wrong two times out of three.
I pointed out that patient decision aids were just a tool that helps the conversation along the path to shared decision making, and that these aids had the same limitations as the evidence from which they spring—if the trials don’t include people like your patient, you can’t be sure how generalisable the data is. Eighty four year old patients with heart failure, osteoporosis, and gout (as well as AF) are unlikely to feature in the RCT population for anything, so don’t underestimate the need for clinical expertise, as well as the evidence and the patient’s values and preferences.
It was fine. There were thoughtful questions both in the session and afterwards. But my heart was heavy. Because, as one of the grateful organisers put it afterwards over tea, during the rest of the day the values and preferences of patients didn’t get a look in. Not once.
I once shared a platform with Patch Adams, an unconventional doctor played by Robin Williams in the eponymous film. His talk was rambling and ill prepared. But he was passionate to the point of spittle, funny, enthusiastic, and completely inspirational. I had to speak after the star of the show, and in case you’re interested I was well prepared, entirely coherent . . . and deadly dull. I learned a lot that day.
One of Patch’s quotes sums up his message. “Treat a disease and sometimes you’ll win, sometimes you’ll lose. Treat a person, and I guarantee you’ll win every time.” So when will conference organisers (also kind, intelligent, and hardworking people) allocate an equal amount of time to the evidence on the one hand, and then for attendees to discuss and practice the communication of that evidence on the other? Only then will patients stand a decent chance of consistently getting conversation and support, which enables them to optimally understand the risks and benefits of their options if they wish to. Then, and only then, will we be true to Patch, and Sir William Osler, and many others, and be treating the person and not the disease.
Back to Remembrance Sunday. The presiding minister at the Cenotaph had jerked my head back with his opening remarks. “What does the Lord require of you but to do justice, and to love kindness, and to walk humbly with your God?” It’s gone round and round my head all week. I had to go and look it up. It’s Micah, chapter 6, verse 8.
So OK, I’ll stiffen my resolve, and keep turning up at workshops and conferences, and use whatever time I’m allocated to encourage the treatment of persons, not diseases, because we and what we do unselfishly many times every day should indeed be all about justice, and kindness, and walking more humbly. In healthcare, even when there are just two of us in a consultation, we’re a community.
Neal Maskrey’s early career was as a GP before spending seven years as a medical manager and part time GP. After 12 years as a director of the National Prescribing Centre and programme director at NICE, he is now honorary professor of evidence informed decision making at Keele University, and consultant clinical adviser in the Medicines and Prescribing Centre, NICE.
Competing interests: I declare that I have read and understood BMJ policy on declaration of interests and I hereby declare the following interest: Employed part time by the National Institute for Health and Care Excellence.