Heroes Not Zombies

In the US, they’ve set up a research institute, The Patient Centered Outcomes Research Institute, with a funding of $600 million a year!

It’s good to see a resourced emphasis on patients. The current dominant model in decision making in health care policy often seems to put the average, or the group, over that of the person. The evidence based medicine model originally recommended taking the statistical results from group experiments, then working out with individual patients what is best for them. I’ve heard a doctor say she was taught that if a patient takes an evidence based drug and says she is no better, then either she hasn’t taken the drug, or she is lying. That strikes me as bonkers. One way to get a more relevant decision for individual patients is to use “patient centred outcomes”.

The new US research institute will focus on the following four questions –

1. “Given my personal characteristics, conditions and preferences, what should I expect will happen to me?”

2. “What are my options and what are the benefits and harms of those options?”

3. “What can I do to improve the outcomes that are most important to me?”

4. “How can the health care system improve my chances of achieving the outcomes I prefer?”

Shouldn’t these ALWAYS be the questions a doctor and a patient should consider together? I think so.

Evidence Based Medicine, as originally described by Prof Sackett, seemed a good idea at the time. Essentially, he said we should be aware of the sum of the evidence from research studies before we embark upon a specific therapeutic intervention for a person. Sadly, it’s become a hugely distorted idea, not least because experimental evidence from group studies (RCTs) has been given not just top rating, but often, the only rating – some authorities use this blunt measure to cut services – if there aren’t sufficient RCTs (or better, meta-analyses of RCTs) showing a statistically significant treatment effect greater than placebo, then the service should be axed.

This idea assumes that individuals are all the same, and that the results of the RTCs are generalisable to absolutely everyone. Sackett never said that. He was careful to say the research study analysis should be one part of clinical decision making, but the other part should be individualisation to this person – taking their values, needs and preferences into account.

If people had held onto that, they wouldn’t make stupid remarks like “If a patient is prescribed an evidence based drug and say they are no better, they have either not taken the drug, or they are lying” (as a young doctor last year told me they had been taught by a clinical teacher in Glasgow)

But now it appears, the “evidence” on which “evidence based medicine” is based, isn’t quite what its been cracked up to be. So here are four steps we could take to improve this approach.

Firstly, publish ALL the evidence. Many researchers have found that, using Freedom of Information requests, it turns out that drug companies just don’t publish all the data. (see my second point in that link to an earlier post). If only the studies showing better results are published, the “evidence base” is seriously distorted.

Secondly, downgrade the value attributed to trials which only use surrogate health markers. If you only measure one or two parameters, but don’t relate those parameters to change in health experience, you aren’t demonstrating useful impacts on health care.

Thirdly, beware of studies which only show “relative” as opposed to “absolute” changes in outcome. Read any of Gigerenzer’s books – you won’t swallow medical statistics the same way ever again!

Fourthly, and probably most importantly, stop assuming that RCTs and meta-analyses of RCTs give the “truth, the whole truth, and nothing but the truth”. The evidence base is incomplete – it always will be. Publication and statistical choices are chosen by those with vested interest in the treatments. And, finally, we are ALL different. NOBODY except me can tell you whether or not a particular treatment has made me less dizzy, less nauseous, reduced my pain, improved my well-being….in short, made a difference to my life.

Compassionate care requires careful listening to a patient, believing and valuing what they say. Enablement requires a clear presentation of options – yes choices – to a patient and helping them to make their own decisions about treatments.

I’m fed up with the reduction of individuals to a mass to be controlled. “Compliance” and “elimination of variance” are used in authoritarian ways. It’s time to move away from thinking a professional’s views and beliefs (wherever they come from) are the only ones to consider, and to seek genuine partnership instead with professionals who care.

I’m a doctor. I used to be a “family doctor”, a “GP”. Now it’s harder to explain what kind of doctor I am. I work at the Centre for Integrative Care, Glasgow Homeopathic Hospital. We see patients of all ages, either sex, and with any diagnosis whatsoever. That much is similar to my previous work as a GP. However, as a “secondary care” service, we only see people with chronic problems, not acute ones. But that’s not the real difference between being a GP, and being an “integrative” doctor.

Why did I choose the word “integrative” there, and not “holistic”? Because I think good General Practice is holistic. That’s not what really makes our service different. It’s the “integrative” bit.

What’s “integrative”? Simply stated I’d say it’s the intention to aid the integration of what’s become disintegrated in a patient’s life, and/or the intention to release a person from stuckness, or rigidity. Those are the two common patterns of ill health – chaos and rigidity.

So, my question to myself, is how do I know I’m on the right path? How do I know that I’m achieving what I’m intending to achieve? If I was primarily concerned with disease, with what can be objectively seen and measured, with pathology, then I’d know I was achieving what I was intending to achieve pretty simply. I’d compare the measurements. For example, if I was intending to lower someone’s blood pressure, then I’d measure their blood pressure. The trouble is that what I’m intending to achieve is better health. Disease is an objective, measurable phenomenon. Health, on the other hand, is subjective. It’s an experience. It is lived by a person. It can’t be directly measured. But I must have some way of assessing someone’s health, mustn’t I?

Here are four ways to think about health.

ONE. (in one word) HARMONY.

Health is a state of harmony. As complex organisms, our multiple cells, organs and systems all need to be in harmony with each other for our condition to be a healthy one. We need to be “in tune”. In fact, we need to have not only inner harmony, but harmony between ourselves and both the networks of relationships and the environmental contexts to which we belong, or in which we are embedded. This is both a new concept, and an old one. As we better understand the extended and embedded natures of the mind, and the irreducible nature of whole, which is greater than the sum of the parts, complexity science and chaos theory are amongst our newest scientific tools. But an ancient way of understanding health was based on the concept of the four humours, which not only had to be in balance within the person, but could only be in balance, if the person was in harmony with the cosmos (their network of relationships, and the environmental contexts to which they belonged). It’s a nice concept. I like it. It’s musical. It’s intuitive. We know when we are in harmony, and we know when we are experiencing disharmony. The concept of health as harmony, places the subject at the heart of health care. Only the person themselves can tell their state of harmony.

TWO. (in two words) VITALITY and RESILIENCE.

Everyone understands the concept of vitality. It’s energy. It’s well-being. It can be measured using a visual analogue scale. Draw a line, with “0” at one end, and “100” at the other. Zero is a the lowest vitality, and one hundred is the greatest. Now place a cross on the line where you are today. Self-rate your vitality. I find people can do this instantly. It’s holistic and intuitive. You don’t have to measure your blood pressure, or your blood sugar, or anything else. You are the judge. Only you can say what your current level of vitality is. The greater your vitality, the greater your resilience. When your vitality is low, you catch everything that’s going, and you probably take longer to get over it. A healthy condition, comprising good vitality, results in better defences, and faster recovery. I like this concept. The concept of health as vitality and resilience, places the subject at the heart of health care. Only the person themselves can tell their state of vitality.

THREE. (in three words) ADAPT. CREATE. ENGAGE

Complex adaptive systems, a biological description of all life forms, can detect changes and respond to them positively. They can adapt. They can cope. But they don’t just maintain some balance, or status quo. They grow, mature and develop. This is creativity. Creativity isn’t just the capacity to be expressive, of the practice of an art. It’s the capacity to evolve, to solve problems in new ways, to self-actualise (in the words of Jung). Thirdly, healthy complex adaptive systems are embedded in their contexts, environments, and networks. They are engaged. When unwell, the world shrinks. It becomes the size of a house, a room, or just a bed. Illness can bring isolation – from friends and family. Health, on the other hand, involves a full engagement of the individual with others. As someone becomes healthier, their world expands. I like this concept. The concept of health as ACE – Adaptability, Creativity and Engagement, places the subject at the heart of health care, but introduces some objective elements too. Behaviours can be observed. Levels of engagement can be seen by others.

FOUR. (in four words) I, We, It, Its.

This needs a little explanation. This is a concept of health built on the framework of integral theory. Have a look here if you don’t know what that’s about. Orthodox biomedicine, tends to only consider one of the four quadrants – the objective one of lesions, “surrogate measures” of health, descriptions of behaviours compared to culturally determined norms. At a Public Health level, it also considers, the quadrant of “its” – the shared, or plural, objective – the ecology, environment, social situation and so on. Mind-body medicine considers both the singular subjective of a person’s mind, and the singular objective of the person’s body. Sometimes, it also considers the shared, or plural, subjective – the “we” of health, the shared values, beliefs etc (especially in the triad of mind, body, spirit). But an integrative, and integral, concept of health considers the person from all four perspectives – all combinations of subjective, objective, individual and shared. I like this concept. The concept of health with an integral framework considers the person, their body, their shared existence, their place in society and in the world.

So, how about you? Do you find any of these four ways of thinking about health helpful? Do prefer any of them over the others? Or do you have yet another way to think about health?

I’m listening to the audio version of Thomas Moore’s “Care of the Soul in Medicine”, and I can’t remember the last book I encountered with which I so comprehensively agree.

I’ve not used the word “soul” much in life, and the triad of “body, mind and spirit” or “body, mind and energy” have seemed more useful to me, but the way Thomas Moore describes soul, the more I’m beginning to wonder why I didn’t clock this at an earlier age. Here’s what he says about soul –

It is impossible to define precisely what the soul is. Definition is an intellectual enterprise anyway: the soul prefers to imagine. We know intuitively that soul has to do with genuineness and depth, as when we say certain music has soul or a remarkable person is soulful. When you look closely at the image of soulfulness, you see that it is tied to life in all its particulars—good food, satisfying conversation, genuine friends, and experiences that stay in the memory and touch the heart. Soul is revealed in attachment, love, and community, as well as in retreat on behalf of inner communing and intimacy.

Well, I understand that. Completely. And I agree with both the broad thrust, and the detailed statements within his book. Medicine is care of the soul, and without that, it degenerates into something both disturbing and unsatisfying. Why did we start to remove the subjects who experience health care, and replace them with the objects to be worked on? Why have we developed an obsession with what can be measured at the cost of losing the stories, no the souls, of those who are sick?

Thomas Moore quotes Albert Schweitzer a couple of times and I decided to read a little of his writings too.

“The greatest discovery of any generation is that human beings can alter their lives by altering the attitudes of their minds.”

Wow! That’s my job every day. That’s exactly what my colleagues at the Centre for Integrative Care, Glasgow Homeopathic Hospital, come to work to do every day – to help people to alter the attitudes of their minds, and so alter their lives.

“Constant kindness can accomplish much. As the sun makes ice melt, kindness causes misunderstanding, mistrust, and hostility to evaporate. ”

And there’s something we can’t be reminded of too often. I’m struck by the lack of kindness, the complete absence of empathy and compassion, in the communications of the critics of my discipline. I’ve often wondered what their vision is for health care….more people taking more drugs? It’s all too easy to react to their hostility with indignation and in so doing to lose touch with the only thing which can make it evaporate – kindness.

Let me be more kind. Let me aspire to be more kind every day.

I am proud of my colleagues. In little ways, small gestures of kindness towards their patients, a few words of greeting in the corridor to welcome them in, the passion with which they speak about their work, and their determination to do their absolute best every time, they affirm for me what doctors should be like.

I guess I’m lucky. I get to connect to people at a soul level every day.