Heroes Not Zombies

What’s most important in providing good health care?

My answer – people.

Every doctor I know has personal stories of experiencing a dehumanisation of patients in health care. From the well known “liver problem in bed 3” way of referring to someone, to stories like the ones Dan Siegel tells in his “Mindsight” book of being clearly and specifically instructed not to ask about patients’ lives and feelings, but, instead to concentrate on “diseases”.

Here’s two conversations I’ve had with junior doctors in the last few months. One told me that she had been instructed by her clinical teacher “Don’t believe patients. They lie all the time. You can only trust the results” By “results”, they meant the results of investigations – blood tests, X-Rays etc. The second told me she’d been taught “If a patient takes an evidence based drug and says that it didn’t help, they’re either lying or they didn’t take the drug.”

Frankly, both these conversations shocked me. It seems like dehumanisation has been take to a new level. What kind of doctor has these attitudes and beliefs? Are these caring doctors? What, or who, do they care about? Are they scientific doctors? Is it scientific to dismiss patients’  narratives and patients’ subjective experiences? It’s not. Dr Robert Smith, in his book, “Patient-centered Interviewing. An Evidence Based Approach” describes clearly and eloquently why it’s not. Without considering all the “data” available, he says, then the assessment will be invalid. He makes the point that the “data” includes the patient’s reported subjective symptoms.

These attitudes were very evident in the recent Science and Technology Committee’s attack on homeopathy. They made it very clear that they considered irrelevant the fact that repeated research has shown 70% of patients who received homeopathic treatment on the NHS stated that it helped them.

There’s another consequence of the failure to make people the most important priority in health care – that’s they way the health carers are treated. There’s wholesale destruction of professionalism underway with nurses’ and doctors’ work being broken down into hundreds of individual tasks which can be measured and monitored. Procedures become more important than people, and the nurses and doctors feel undervalued.

It’s sad. And it’s not good.

Do we need to create a campaign to redress the balance? To insist that people are more important than statistics? To teach doctors to believe what their patients tell them and to show that there are no “evidence based drugs” which work in every person who takes them? To create the conditions for more care and more respect?

I think we do. What do you think?

I do find the splitting of human beings in two apparently separate parts, body and mind, very odd. As I’ve said to patients, I’ve never met a mind without a body, and I’ve only met a body without a mind in the mortuary. Sure, it’s common for people think using a two-value system – right or wrong; good or bad; black or white – but it’s always a highly inaccurate way of describing reality. I’ve heard people wrangle over whether someone’s pain is in their body or their mind, and that seems a particularly peculiar question to me. In fact, I once I heard a health service worker describe a patient as “one of those people whose pain is all in their mind”. What did that mean? They were pretending to have pain? They were making it up? How do you experience pain without using your mind? Can we put the mind aside when considering pain?

I guess what people mean when they talk this way is where is the source of the person’s pain? Is it a physical lesion? Or is it a mental one?

I still don’t find that helpful. Surely we need to consider a person as a person, and a person with pain as a person with pain. Subdividing them isn’t helpful.

But, here it is again, in today’s Independent newspaper, that extremely odd tendency to consider human beings in two separate parts. In an article by Jeremy Laurence about research showing Cognitive Behavioural Therapy can be effective in people with back pain…..

Cognitive behaviour therapy is established as the most effective of the talking treatments and has revolutionised the way doctors approach psychological conditions such as depression and anxiety. But it is not usually associated with physical ailments such as back pain. The technique involves helping patients to break habitual ways of seeing things and to think positively instead of negatively. Zara Hansen, a member the research team from the University of Warwick said: “We are not saying back pain is all in the mind. It is very much a physical problem but the way you understand it affects the way you manage it.”

Physical ailments such as back pain? What does that mean? Does everyone with back pain have a physical lesion in their back? No, they don’t. Can cognitive behavioural therapy only help “problems of the mind”? How odd to consider patients in such divided ways. The researcher, Zara Hansen, promulgates the same peculiar thinking with her “We are not saying back pain is all in the mind. It is very much a physical problem but the way you understand it affects the way you manage it.”

Seriously, finding lesions which can be modified, repaired, or removed is one thing, but to consider a subjective phenomenon like pain as being divisible into physical or “in the mind”…….let’s move on. Far too many people with pain have had surgical operations to remove the claimed physical cause of their pain, only to find themselves with just as much pain as before.

People with pain deserve to be understood as whole people, and to have care which is suitably holistic. Otherwise, the pain remains…..

Thomas Goetz’ new book, “The Decision Tree” looks interesting. His theory, based on research evidence, is that two behaviours significantly improve health outcomes – being personally involved in taking the decisions about your own health care, and sharing with others.

A decision tree, essentially, is a flow chart – it’s a kind of algorithm, a way to factor in various strands of information and probabilities to move towards an optimal outcome. So it’s a way of thinking about our healthcare as a series of deliberate choices, where we are the primary decision-makers. When we take on that role, we tend to have better health.

I like what he says about DNA – that it’s an indicator, not an inevitability. However, I wonder how people will cope with the knowledge of their DNA disease markers? Will they feel like they’ve got some ticking time bombs on board? And, he’s very balanced about screening programs, recognising that they are problematic, not least because of the false positives they throw up.

He points out that giving people personal feedback on their behaviour changes and involving them in communities are two tried and tested techniques which can be delivered much more easily now with smartphones and online communities.

In an interview with him on the freakonomics site, he says this –

One of the amazing things I learned in writing the book is that many popular drugs don’t really work all that well. Anti-depressants work at best around half the time; chemotherapies for cancer work at best 20% of the time. This is the hit and miss of modern pharmacology – there are no sure things.

It’s amazing how that well-established fact is still ignored. As he’s an editor of Wired magazine, it’s no surprise that his hope lies in pharmacogenomics coming up with the ways to produce more targeted drugs.

I’m pretty excited about the Health 2.0 ideas. Social networks and wikis are two potentially useful tools for patients, and I think Goetz’ book adds others – the decision tree itself and the emphasis on personalised feedback.

Potentially, this is all about a shift in power, away from doctors and towards patients. In my opinion that’s a trend to be encouraged.

In a new study just published in the European Heart Journal researchers have looked at the impact of a “positive affect” on the chances of getting heart disease. What’s “positive affect”?

Positive affect is defined as the experience of pleasurable emotions such as joy, happiness, excitement, enthusiasm and contentment. These feelings can be transient, but they are usually stable and trait-like, particularly in adulthood. Positive affect is largely independent of negative affect, so that someone who is generally a happy, contented person can also be occasionally anxious, angry or depressed.

Here’s what they found

After taking account of age, sex, cardiovascular risk factors and negative emotions, the researchers found that, over the ten-year period, increased positive affect predicted less risk of heart disease by 22% per point on a five-point scale measuring levels of positive affect expression (ranging from “none” to “extreme”).

As always, the researchers strongly plead for more research, both to clarify if their findings are revealing something true, and to begin to develop methods for helping people to develop a more positive affect. Is it possible to increase your positive affect? Well, think about what makes you happy, excited, brings you joy. Think about how you experience moments of contentment. What are you enthusiastic about? How could you spend more time than you currently do following your passion?

I wonder how this study connects to the well proven benefits of TM in reducing heart disease?

I practice TM 20 minutes twice daily. That’s 40 minutes of contentment. I often think of myself as a “peripatetic enthuser” – I am passionate about life. The daily world excites me, fills me with wonder and amazement. I laugh a lot. Will this way of living reduce my chances of heart disease? I don’t know. Maybe it will, if this research is correct. But I don’t live this way to try and avoid diseases. I don’t live this way to try to avoid dying. I live this way because this is how I want to live.

Here’s my personal view on avoiding heart disease. I hope I’ll never get it, but whether I do or not, I’d rather live enthusiastically, passionately and joyfully. If this way of living reduces my chances of heart disease, that’s a bonus.

But what does this mean for health care? Our current focus on reducing premature deaths from heart disease, has got two strands – “lifestyle” changes eg not smoking, eating less and exercising more, and taking drugs – statins, or even, as some advocate, a whole mix of drugs in one pill. That whole thrust seems to be towards death avoidance, and it’s not a strategy I personally prefer. I’ve a real penchant for focusing on, and building up, the positive.

Make better dents.

A life well lived today, is a life well lived, irrespective of how long that life turns out to be.